Keppra didn't last too long until she went into a dark place. Next was trileptal, I think, then ultimately we went on gabapentin. I was pleased because she really didn't have too bad of side effects. Her stomach wasn't getting worse. Her depression was stable... Problem was, she never got better seizure-wise :(. When we got up to 1200 mg twice a day, she started acting high or drunk and her pupils were always dilated. She was very impulsive and tended to hurt her little brother who she had always had a good relationship with before. She would wrestle him and hurt him and then resent that she got in trouble for it. Finally when her seizures were coming in clusters after several months, I asked for a change. More on this later in this post.
In May she was diagnosed with Ehlers Danlos Syndrome. I already knew she had it.
We have been seeing a gynecological pain specialist who put her on norethindrone and had her do pelvic floor physical therapy and myofascial release. These things did help! Unfortunately the summer came to an end and she decided to give public high school a try. This meant not seeing doctors all the time or doing PT.
School went really well for the first 4 weeks, then the school decided she didn't need the helps they were giving her. Everything went downhill from there. She was overwhelmed in that setting, having a lot of pain and fatigue and feeling like she was not getting the support she needed. Finally it came to a head and she said she wasn't going back :(. She ended up staying in choir, textiles and foods, which she enjoyed and is now trying to decide between homeschooling the rest of her senior year or trying to take the GED. She went to another neuropsychologist and got tested again. These results were hard to swallow. I'm not sure what they really mean, but they seem to not be good.
Pumpkin has started weaning off the gabapentin and switching to phenytoin October 24. At the same time, she started not being able to eat enough and having more stomach pains. Ultimately she ended up in the hospital this week due to losing too much weight and not figuring things out as an outpatient. She had an MRE in the hospital which showed some swelling around the rectum. The GI team is taking her off her 6MP to see what happens. They also put her on an NG tube to help get some nutrition. Right now we are trying to get her up to 90 mL/hr for 14 hours a day. She's been on it constantly though for over 24 hours except when we ran out of formula for about an hour. They want us to be able to insert an NG tube ourselves as a goal to go home to.
Saturday, November 18, 2017
Saturday, January 28, 2017
Good week, started Keppra
Pumpkin had a fairly good week. She was able to get back into doing school and her belly improved and her throat was better. She had a full on seizure one day only. On Wednesday we went to Iowa City again and she saw the psychologist again. They are working on her sleep issues which is challenging her to stay out of her bed all day. She spends more time with the family, but still spends time in her room on the floor beside her bed.
On Wednesday she saw a new peds neurologist which was also at U of I. He listened well and I thought he heard our story well. He recommended that she go back to the first medication she ever tried, that she failed when she was 4 due to horrible side effects. He said that this med rarely has these effects in kids older than 12. So far she has done well on the lowest dose and is actually eating more! This morning she ate a full breakfast, which I haven't seen happen for years! She usually doesn't want to eat until after noon. Moods seem pretty good too.
We have gotten the results of the scopes and biopsies. They were pretty normal except for some esophageal inflammation. We are still waiting on the results of the video endoscopy. If this is also normal, I will push her PCP to pursue endometriosis diagnosis and treatment.
On Wednesday she saw a new peds neurologist which was also at U of I. He listened well and I thought he heard our story well. He recommended that she go back to the first medication she ever tried, that she failed when she was 4 due to horrible side effects. He said that this med rarely has these effects in kids older than 12. So far she has done well on the lowest dose and is actually eating more! This morning she ate a full breakfast, which I haven't seen happen for years! She usually doesn't want to eat until after noon. Moods seem pretty good too.
We have gotten the results of the scopes and biopsies. They were pretty normal except for some esophageal inflammation. We are still waiting on the results of the video endoscopy. If this is also normal, I will push her PCP to pursue endometriosis diagnosis and treatment.
Friday, January 20, 2017
Scopes and Pill Cam
Pumpkin was pretty miserable for about a week starting last week to the point where for a couple of days it hurt to even drink water. On Thursday and Friday of last week, I called Iowa City and asked what their plan was because I still had not heard from them. They called back and told us they wanted to do scopes and video endoscopy the following Thursday (yesterday).
The cleanout they recommend is four days of Miralax 3 times a day. Since she hadn't been eating and barely drinking, I reduced the dose to 8 oz instead of the 13 that they recommended on the first three days, then gave her a fourth dose on the final day for good measure, and she was pooping clear liquids. Her weight had dropped to 109.6.
Our journey to the hospital yesterday was a near disaster in that someone had wrecked in front of us (in the dark) and their lights were out and they were across both lanes of the interstate. I barely made it around them taking the shoulder at 65 miles an hour, but were able to continue on without incident.
This was our first experience doing any testing at U of I Children's Hospital. It was a good experience in that everyone was nice and respectable to us.
When we arrived she was weighed in at 50 kg even (about110 lbs, down 10-12 lbs) and 176 cm. It took 3 sticks to get Pumpkin's IV in with her dehydrated veins. They gave her lots of fluid to help rehydrate her, since I had mentioned to the GI nurse that she was dry the Friday before. She hates IVs. They let her do the numbing gel beforehand, but it still hurt.
For some reason Pumpkin's scopes that were supposed to take 45 min took more like an hour and 30-45 minutes. They said they had trouble getting into her terminal ileum and never were able to make the turn, although both Dr E and Dr N tried. They said sometimes that happens, and it couldn't be helped. They said Dr Ebach is very experienced and tried all the tricks she knew to do.
When Pumpkin came out of scopes, she was very doped. More than usual. Also her throat was so sore she couldn't swallow water without severe pain. We had to get some chloraseptic lozenges, which she used and still didn't want to drink, but fortunately they had hydrated her well with IVs during the procedure. When I looked in her throat when she was more awake, it was coated with clotted blood behind her uvula and over the back of her throat.
We got out of postop recovery around 12 and had an appointment in psychology at 1. Again, it was a very positive experience with a young female doctor who listened well. She said that she specializes in children with chronic health conditions and chronic pain and thinks she can help. Being young and female, Pumpkin tends to connect with these types of doctors, so I am hopeful that this will be a good thing. Pumpkin was very tired from anesthesia and was still experiencing throat pain
That appointment took us until 2:30 pm and Pumpkin still had to wait until 4:30 until she would be finished with her capsule readings. The camera makes its way through her small intestine taking pictures where the scopes can't go. It is really quite remarkable. Pumpkin and I asked for a recommendation about a good place to hang out, and was sent to the 8th floor to a patient library. It was wonderfully stocked with electronic games, computers and lots of good book selections. It also had a few cushioned chairs. Outside of it was a small coffee place with snacks (for me - Pumpkin still hurt to much to eat or drink). It was a great place to hangout. She napped and played on her laptop she brought. I got a cappuccino mocha and a small scotcharoo. The time went quickly.
At 4:00 the library closed so we made our way down to the specialty clinic once more. Pumpkin was totally exhausted and worn out. At 4:30 I checked back in and they took us to a room and called Dr Ebach. When Dr E checked on the capsule, it still appeared to be in the small intestine, so she went and saw a patient. At 5:00 the same thing. At 5:38, she said that we had run out of time and that we'd have to take the equipment off because they were closing. Sadly, I am afraid that the capsule did not make it to the ileocecal area where most of Pumpkin's pain seems to be stemming from, and to make matters worse, neither were they able to get into that area with the scope.
On the way home, believe it or not, we again came upon an accident that had just happened. I saw a semi jack-knifed in the median ditch. What I didn't see was a small car sitting in the left lane or a bunch of gravel or debris on the road. I fortunately was in the right lane to get away from the truck, and missed the car sitting in the dark without its lights on, but did not miss driving over what sounded like gravel on the road. Pumpkin was completely worn out and didn't stir in spite of my discussing the situation out loud to myself and hitting the breaks, so again I did not stop. Her day had been long enough and she needed to get to bed. This morning I woke up to a flat tire.
When we got home, I was able to get her to drink a big bottle of iced vitamin water, in spite of her throat pain before bed. This morning she said her throat was better, but her esophagus was sore. She did finally eat a small pack of pudding and some mac and cheese today so far, and is drinking. She did pass the camera, complete with flashing light this morning first thing.
We won't get any more results until next week (5 days).
One last thought, when Pumpkin's pain started last Tuesday, we thought it might be due to her starting her period, because that has flared everything up in the past. Interestingly, she still hasn't started her menses, so I don't know what to think. She was due somewhere between the 15th and 18th. I am also hoping that she doesn't get it this week now if she is going to start getting better otherwise. I don't want it to throw her right back into serious pain again!
The cleanout they recommend is four days of Miralax 3 times a day. Since she hadn't been eating and barely drinking, I reduced the dose to 8 oz instead of the 13 that they recommended on the first three days, then gave her a fourth dose on the final day for good measure, and she was pooping clear liquids. Her weight had dropped to 109.6.
Our journey to the hospital yesterday was a near disaster in that someone had wrecked in front of us (in the dark) and their lights were out and they were across both lanes of the interstate. I barely made it around them taking the shoulder at 65 miles an hour, but were able to continue on without incident.
This was our first experience doing any testing at U of I Children's Hospital. It was a good experience in that everyone was nice and respectable to us.
When we arrived she was weighed in at 50 kg even (about110 lbs, down 10-12 lbs) and 176 cm. It took 3 sticks to get Pumpkin's IV in with her dehydrated veins. They gave her lots of fluid to help rehydrate her, since I had mentioned to the GI nurse that she was dry the Friday before. She hates IVs. They let her do the numbing gel beforehand, but it still hurt.
For some reason Pumpkin's scopes that were supposed to take 45 min took more like an hour and 30-45 minutes. They said they had trouble getting into her terminal ileum and never were able to make the turn, although both Dr E and Dr N tried. They said sometimes that happens, and it couldn't be helped. They said Dr Ebach is very experienced and tried all the tricks she knew to do.
When Pumpkin came out of scopes, she was very doped. More than usual. Also her throat was so sore she couldn't swallow water without severe pain. We had to get some chloraseptic lozenges, which she used and still didn't want to drink, but fortunately they had hydrated her well with IVs during the procedure. When I looked in her throat when she was more awake, it was coated with clotted blood behind her uvula and over the back of her throat.
We got out of postop recovery around 12 and had an appointment in psychology at 1. Again, it was a very positive experience with a young female doctor who listened well. She said that she specializes in children with chronic health conditions and chronic pain and thinks she can help. Being young and female, Pumpkin tends to connect with these types of doctors, so I am hopeful that this will be a good thing. Pumpkin was very tired from anesthesia and was still experiencing throat pain
That appointment took us until 2:30 pm and Pumpkin still had to wait until 4:30 until she would be finished with her capsule readings. The camera makes its way through her small intestine taking pictures where the scopes can't go. It is really quite remarkable. Pumpkin and I asked for a recommendation about a good place to hang out, and was sent to the 8th floor to a patient library. It was wonderfully stocked with electronic games, computers and lots of good book selections. It also had a few cushioned chairs. Outside of it was a small coffee place with snacks (for me - Pumpkin still hurt to much to eat or drink). It was a great place to hangout. She napped and played on her laptop she brought. I got a cappuccino mocha and a small scotcharoo. The time went quickly.
At 4:00 the library closed so we made our way down to the specialty clinic once more. Pumpkin was totally exhausted and worn out. At 4:30 I checked back in and they took us to a room and called Dr Ebach. When Dr E checked on the capsule, it still appeared to be in the small intestine, so she went and saw a patient. At 5:00 the same thing. At 5:38, she said that we had run out of time and that we'd have to take the equipment off because they were closing. Sadly, I am afraid that the capsule did not make it to the ileocecal area where most of Pumpkin's pain seems to be stemming from, and to make matters worse, neither were they able to get into that area with the scope.
On the way home, believe it or not, we again came upon an accident that had just happened. I saw a semi jack-knifed in the median ditch. What I didn't see was a small car sitting in the left lane or a bunch of gravel or debris on the road. I fortunately was in the right lane to get away from the truck, and missed the car sitting in the dark without its lights on, but did not miss driving over what sounded like gravel on the road. Pumpkin was completely worn out and didn't stir in spite of my discussing the situation out loud to myself and hitting the breaks, so again I did not stop. Her day had been long enough and she needed to get to bed. This morning I woke up to a flat tire.
When we got home, I was able to get her to drink a big bottle of iced vitamin water, in spite of her throat pain before bed. This morning she said her throat was better, but her esophagus was sore. She did finally eat a small pack of pudding and some mac and cheese today so far, and is drinking. She did pass the camera, complete with flashing light this morning first thing.
We won't get any more results until next week (5 days).
One last thought, when Pumpkin's pain started last Tuesday, we thought it might be due to her starting her period, because that has flared everything up in the past. Interestingly, she still hasn't started her menses, so I don't know what to think. She was due somewhere between the 15th and 18th. I am also hoping that she doesn't get it this week now if she is going to start getting better otherwise. I don't want it to throw her right back into serious pain again!
Monday, December 26, 2016
Iowa City GI first appointment
Dec 20 we went to Iowa City and saw a new GI. She was very nice and the 2 hour drive was pretty much all highway. She seemed concerned and interested, but felt that Pumpkin was too complicated for her. She will send a referral for her to see a psychologist there, to see a geneticist for ED syndrome, but said there is a year's waiting list for this, and she will gather all Pumpkin's previous records from Alaska and Park Ridge and will give them to her head pediatric GI to review and then they will decide what needs to happen. Now it has been a week and still no word from any of those referrals or GI docs. Grump!
Last night Pumpkin was hurting pretty bad and I took her to the ER. Since it was Christmas evening, the doctor wouldn't call the ultrasound techs because he didn't think her worsening pain was an emergency. He gave her a couple of Tylenol #3 and finally after 3 hours let us go home. Why it took 3 hours? Don't ask me. Pumpkin said she woke up feeling good but once she got up and moving around her pain returned. Her weight has dropped further to 114 lbs (11 lbs down now...). She is getting depressed again.
I wish someone would take an interest in her and figure out how to help her!
Last night Pumpkin was hurting pretty bad and I took her to the ER. Since it was Christmas evening, the doctor wouldn't call the ultrasound techs because he didn't think her worsening pain was an emergency. He gave her a couple of Tylenol #3 and finally after 3 hours let us go home. Why it took 3 hours? Don't ask me. Pumpkin said she woke up feeling good but once she got up and moving around her pain returned. Her weight has dropped further to 114 lbs (11 lbs down now...). She is getting depressed again.
I wish someone would take an interest in her and figure out how to help her!
Wednesday, December 14, 2016
Wandering in the wilderness waiting for God to show us the way out of this healthcare nightmare
Pumpkin took her new seizure med (Topiramate) for a week. By then she was completely nonfunctional, even on the lowest dose. She couldn't eat, couldn't sleep, couldn't think well enough to do any school and was slipping into depression again. I called the neurologist on the 7th, but didn't get a call back until the 12th. I went ahead and made the executive decision to stop it. December 12 she started feeling a little better having stopped the seizure medicine, but still having pain after meals and still having anorectal symptoms. Weight has dropped back down to 116 (down 9 lbs now).
December 10th was the 4 year anniversary of the first pediatric GI visit she had before being diagnosed with Crohn's. It was the first time any doctor suggested Crohn's might be the problem. It was the first time we weren't blown off for her symptoms. She was 13 years old, 5'1" tall and 68 lbs. She could barely walk due to weakness and abdominal pain. I am so glad for the progress we've made but can't help wondering how much better she'd be if we had started a biologic from the start.
She started feeling a little better having stopped the seizure medicine, but was still having pain after meals and still having anorectal symptoms. Weight has dropped back down to 116 (down 9 lbs now).
12-12-16 she woke me up at 3:30 am with the "worst abdominal pain in 4 years". Thankfully it was relieved with a BM and Digestzen. She took a tizanadine and went back to bed with a heating pad. She had been suffering for a while trying to get it to resolve without getting me up. On that day they called from Dr Garcia's office and said that her Prometheus test was too high (6TGN?) running 441, and this put her at risk for low WBC count. The WBC's were depressed and the count was 3.3 and they want her to lower her 6MP to previous dose - 50 alternating with 75 every other day - down from 75 mg daily. For the rectal pain, they want her to continue the melamine enemas and find a colorectal surgeon in our area who does rectal ultrasounds. No mention of switching to Humira. When she was on this lower dose before, she was having a lot of joint pain. The higher dose took care of the joint pains. I hope they don't come back. I don't have much faith that things are going to get better when she has had one problem after another on 6MP over the past two years and has never been well enough to lead a normal life. Also Pumpkin said she had a little rectal bleeding yesterday even without a BM when she wiped. We did a pelvic MRI just before Thanksgiving. It showed "mild inflammation in the rectal area". I don't know why she isn't just scoping, except that Pumpkin has this new hole on her anus now since our last visit and maybe is checking for fistula or abscesses? What gets me is they want us to find our own surgeon to do it. Like I know even where to start looking.
We got appointments (on Monday) to get second opinions (peds neuro and GI) at University of Iowa in Iowa City in the third week of January on the same day. Dr Pratt, Pumpkins PCP made the referrals when she saw him last week. Today they called back and said they had an opening for 12-20-16 for GI, so I took it. They won't be on the same day, but we can at least get this ball rolling and I won't have to figure out on my own where to have this rectal ultrasound. I am hoping the two specialists - GI and Neuro - will be willing to work together to find a plan that doesn't exacerbate the other problem.
She has had at least one seizure since stopping the seizure med. Last one was December 13 - nocturnal/early am. She did have one since her EEG that was while she was awake doing her homework :(. Finally yesterday, our current neurologist's nurse called and said the doctor recommended that she try new medicine since she wasn't tolerating the Topamax and recommended two meds. One of them was the med she just failed last April landing her in the hospital with suicidal ideation for 9 days. I don't think she even looked at her chart or remembered who she was dealing with. I'm sure I'm not going to randomly put her on another med after viciously failing 4 already. Last Thursday I was so fed up, I got Pumpkin in with her PCP to let him know what was going on, and he is referring her to a new neurologist and gastroenterologist.
December 10th was the 4 year anniversary of the first pediatric GI visit she had before being diagnosed with Crohn's. It was the first time any doctor suggested Crohn's might be the problem. It was the first time we weren't blown off for her symptoms. She was 13 years old, 5'1" tall and 68 lbs. She could barely walk due to weakness and abdominal pain. I am so glad for the progress we've made but can't help wondering how much better she'd be if we had started a biologic from the start.
She started feeling a little better having stopped the seizure medicine, but was still having pain after meals and still having anorectal symptoms. Weight has dropped back down to 116 (down 9 lbs now).
12-12-16 she woke me up at 3:30 am with the "worst abdominal pain in 4 years". Thankfully it was relieved with a BM and Digestzen. She took a tizanadine and went back to bed with a heating pad. She had been suffering for a while trying to get it to resolve without getting me up. On that day they called from Dr Garcia's office and said that her Prometheus test was too high (6TGN?) running 441, and this put her at risk for low WBC count. The WBC's were depressed and the count was 3.3 and they want her to lower her 6MP to previous dose - 50 alternating with 75 every other day - down from 75 mg daily. For the rectal pain, they want her to continue the melamine enemas and find a colorectal surgeon in our area who does rectal ultrasounds. No mention of switching to Humira. When she was on this lower dose before, she was having a lot of joint pain. The higher dose took care of the joint pains. I hope they don't come back. I don't have much faith that things are going to get better when she has had one problem after another on 6MP over the past two years and has never been well enough to lead a normal life. Also Pumpkin said she had a little rectal bleeding yesterday even without a BM when she wiped. We did a pelvic MRI just before Thanksgiving. It showed "mild inflammation in the rectal area". I don't know why she isn't just scoping, except that Pumpkin has this new hole on her anus now since our last visit and maybe is checking for fistula or abscesses? What gets me is they want us to find our own surgeon to do it. Like I know even where to start looking.
We got appointments (on Monday) to get second opinions (peds neuro and GI) at University of Iowa in Iowa City in the third week of January on the same day. Dr Pratt, Pumpkins PCP made the referrals when she saw him last week. Today they called back and said they had an opening for 12-20-16 for GI, so I took it. They won't be on the same day, but we can at least get this ball rolling and I won't have to figure out on my own where to have this rectal ultrasound. I am hoping the two specialists - GI and Neuro - will be willing to work together to find a plan that doesn't exacerbate the other problem.
Sunday, December 4, 2016
After 3 nights
Three nights have gone by with her new seizure med. Today she was very tired. Tomorrow we will increase the med to twice a day. Dose is still very low. She reported not being able to think clearly enough to do her schoolwork on Friday. I think she may have had another seizure this morning. I am not sure but she seemed a little postictal. It may have just been the brain fog. I'm not looking forward to her taking the med during the day. I have told her to just do what she can with her school work. Already her appetite is gone but not reporting nausea. I'm getting two partial meals in her a day. This is not too different from her norm... Have I mentioned that I hate seizure meds?
Thursday, December 1, 2016
Where we are now and how freaked I am.
In addition to the usual right lower quadrant pain, during the past few weeks Pumpkin's Crohn's has been flaring up in her rectum and anus. Not nasty ulcers, abscesses and fistulas, but uncomfortable sores, blood when she wipes, painful defocation, small bumps in her anus, and inflammation on her MRI. She has been losing weight (down 8 lbs) and has lost her appetite. In order to keep this plate spinning, she has started Canasa suppositories at bedtime which she likens to putting a bullet up her butt backwards. She did it for a week and then reported that it was just making her sorer. She didn't do it one night and her right lower abdominal pain, that had been letting up, flared up again, so she thinks maybe it was helping that at least. I've been waiting at least 4 days to hear from the GI where to go from here. For now, she'd rather have the b-hole pain than the RLQ pain, so she's continuing the suppositories.
Yesterday I heard from the pediatric neurologist that Pumpkin's video EEG was abnormal. I knew it would be because we had to do it until she had a seizure. She found that Pumpkin has slowing in the frontal lobe and her seizures are coming from there. She thinks we should start a new medicine, Topamax. This is what freaks me out. It could give her medicine fog brain, abdominal pain, weight loss, worsen her depression, and make her have a hard time learning.
Right now P is already losing weight and has no appetite and is depressed. Every anti-seizure med she's ever had has made her suicidal :(. She told me last night that we'd better wait to start it because she's already pretty depressed, as in wanting to not live. Her depression med has been keeping things going okay until her EEG. She didn't have to do school for a week, then not much school over Thanksgiving week. Now she's doing it but it gets her down. For some reason school usually triggers these fatalistic thoughts.
Last year it was about this same time that we started her on Lamictal. All hell broke loose for 5 months until I finally realized everything had gone south when we started her new med. It took another couple months to get off of it. I REALLY don't want to go back there again. It would be fine if it helped me keep her seizure plate spinning nicely, but what if, in the process of doing trying to keep the seizure plate spinning, it leads to a bunch more problems, other plates wobbling and falling and crashing and, ultimately, Pumpkin wanting to end it all again? But what if we don't do it and her seizures get worse and she dies having a seizure or she becomes even more disabled?
I never thought I'd say this, but really the thought of considering cannabis for treating her seizures, poor appetite, etc is looking more and more desirable as an alternative. I've read that there is some that you can get that doesn't make you high... Would cannabis help me keep my plates all spinning?
Tuesday, November 29, 2016
MRI, video EEG
This has been a tough week. Pumpkin had an MRI of her pelvis on Monday. It went fine, but took a lot of delays for correct orders and preauthorizations. I am so glad that she has our current health insurance.
I got the results back and heard that she has inflammation in her rectal area. They are starting her on Canasa suppositories. The pharmacy didn't have them and had to order them, so started them Monday, November 21. She was having diarrhea, sores on her bottom and felt a lump inside her. She is also having right lower quadrant abdominal pain (this is chronic, but was worse). She feels like the new medicine hurts now to put in, and doesn't really feel like it has helped. I'm waiting to hear back from the GI about where to go from here. We're also waiting to hear back about blood work she had last Monday, the 21st, for a mercaptopurine panel, liver enzymes and a fecal calprotectin.
I think it was a good thing that she didn't have to start those suppositories right away because she got her period the week we were waiting for the reorder. Her periods start major pain problems and flare up her Crohn's. She would not eat for a full 24 hours because she was hurting so bad and didn't want to aggravate it more. She has lost weight with all of this and is down to 117 lbs again. :(
Another good reason to not have to start the new suppository yet is that that week Pumpkin had to do another video EEG. It was put on Tuesday morning the 15th. She may have had one event on Friday night the 18th, and finally had a for sure seizure on Sunday morning and was able to take it off and have it off for Thanksgiving. If she didn't have one, she would have had to put it back on all new on the 21st and leave it on another week! We had a lot of people praying that she would have a seizure so she could take it off! The tricky thing about Pumpkin's seizures is that she has them at night, and so it isn't always clear whether or how much of them she is having.
I got the results back and heard that she has inflammation in her rectal area. They are starting her on Canasa suppositories. The pharmacy didn't have them and had to order them, so started them Monday, November 21. She was having diarrhea, sores on her bottom and felt a lump inside her. She is also having right lower quadrant abdominal pain (this is chronic, but was worse). She feels like the new medicine hurts now to put in, and doesn't really feel like it has helped. I'm waiting to hear back from the GI about where to go from here. We're also waiting to hear back about blood work she had last Monday, the 21st, for a mercaptopurine panel, liver enzymes and a fecal calprotectin.
I think it was a good thing that she didn't have to start those suppositories right away because she got her period the week we were waiting for the reorder. Her periods start major pain problems and flare up her Crohn's. She would not eat for a full 24 hours because she was hurting so bad and didn't want to aggravate it more. She has lost weight with all of this and is down to 117 lbs again. :(
Another good reason to not have to start the new suppository yet is that that week Pumpkin had to do another video EEG. It was put on Tuesday morning the 15th. She may have had one event on Friday night the 18th, and finally had a for sure seizure on Sunday morning and was able to take it off and have it off for Thanksgiving. If she didn't have one, she would have had to put it back on all new on the 21st and leave it on another week! We had a lot of people praying that she would have a seizure so she could take it off! The tricky thing about Pumpkin's seizures is that she has them at night, and so it isn't always clear whether or how much of them she is having.
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This is her with her EEG set up. It was really itchy and uncomfortable.
She is a ham and didn't let me take her picture but took these selfies herself.
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Monday, October 31, 2016
Nasty food allergies: Pumpkin, Chocolate, Broccoli and Almonds
After my youngest daughter was diagnosed with a corn allergy, we finally started making strides towards health improvements for her. This got me wondering about Pumpkin and what might have been missed. I asked her allergy/asthma doctor about whether she had been tested for corn too. She hadn't. We set her up in June for further food allergy testing, but had to wait until October for the appointment. We had the appointment this last week, and discovered some shocking results. Unlike her sister, she is not allergic to corn. No, she is allergic to one of the mainstays of her diet: potatoes! Not only that, she is also allergic to broccoli, chocolate and almonds. We've begun the process of eliminating these from her diet, which isn't easy when you are already gluten intolerant, and many of the GF foods you enjoy have potato or almond flour as a substitute. From what I read, potato flour can also be found in cheese, modified corn starch, MSG, maltodextrin, yeast and other nonpotato type of words. So far, we have already seen improvement in her belly cramping, and I'm sure her diet isn't completely clean yet. Interestingly, the one night last week that she had the most abdominal pain was after she drank an Ensure before bed. Of course dark chocolate is the only kind she likes... Can you say homemade, potato free, corn free, gluten free, almond and chocolate free Thanksgiving? Hoo boy!
As I mentioned in a previous post, in October Pumpkin was also diagnosed with postural tachycardia. She was falling down and passing out sometimes. It has improved with increased fluid intake and intentional daily exercise. POTS (postural orthostatic tachycardia syndrome) is common in hypermobility syndrome. I think I will look further into MCAS in light of Pumpkin's recently discovered food allergies. I think MCAS tends to pop up in these patients too. Just wanting to cover all the bases.
This past month or so, Pumpkin has been having lots of abdominal cramping, anal sores, intermittent diarrhea, 5 lb weight loss and more joint pains along with the rest of her health problems. Her blood work, as usual, showed no elevations in crp or sed rate. CBC and CMP was also normal. She'll see GI next week. Her rheumatologist is having her increase her 6MP to see if it will help. Usually GI isn't very helpful, but we'll see what she has to say.
As I mentioned in a previous post, in October Pumpkin was also diagnosed with postural tachycardia. She was falling down and passing out sometimes. It has improved with increased fluid intake and intentional daily exercise. POTS (postural orthostatic tachycardia syndrome) is common in hypermobility syndrome. I think I will look further into MCAS in light of Pumpkin's recently discovered food allergies. I think MCAS tends to pop up in these patients too. Just wanting to cover all the bases.
This past month or so, Pumpkin has been having lots of abdominal cramping, anal sores, intermittent diarrhea, 5 lb weight loss and more joint pains along with the rest of her health problems. Her blood work, as usual, showed no elevations in crp or sed rate. CBC and CMP was also normal. She'll see GI next week. Her rheumatologist is having her increase her 6MP to see if it will help. Usually GI isn't very helpful, but we'll see what she has to say.
Wednesday, October 19, 2016
Orthostatic tachycardia
In the summer Pumpkin started experiencing dizziness. We noticed it when she had been on Lexapro for a few weeks for her depression. We played around with the dosing, and settled on a smaller dose in the evenings. In August and September she had multiple episodes of standing up and falling down as she started walking and passing out during the night. I thought the night episodes were seizures, but they were infrequent and as I never saw them, I wasn't sure. On the 30th of September, she went to the neurologist (their time to get an appointment is long), the doctor found that she was having a very fast heart rate increase when she went from lying to sitting or standing. The heart rate doubled from 55 to 110 from lying to sitting. She got into a pediatric cardiologist the next week, and he seemed to think it was normal "vasovagal syncope" and didn't even address the tachycardia. He recommended that she drink more. I talked with the neurologist's office about it, and she referred her to a different cardiologist that she was more familiar with. He, at least, took time to listen to us. He agreed that she was having postural tachycardia and recommended that she drink more and try to exercise 30 minutes a day. He said there are medications to help with it, but that they have side effects in addition to their positive effects. Pumpkin agreed to give the lifestyle changes a try first for a few months.
She is having consistent low back pain, RLQ abdominal pain and some diarrhea. She will see rheumatology, allergy/asthma doc and gastroenterology in the next month.
She got a super cute haircut.
She is having consistent low back pain, RLQ abdominal pain and some diarrhea. She will see rheumatology, allergy/asthma doc and gastroenterology in the next month.
She got a super cute haircut.
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| Pumpkin is in the top left corner with her tongue sticking out. She is at a friend's birthday party. |
Monday, May 16, 2016
Rough year, but almost done with Sophomore year
Poor Pumpkin has had a really rotten year.
Seizures: Starting in August at camp last summer she had two seizures two nights in a row. She was sent home from Camp Oasis because the seizures were too much for them to handle as a staff of GI nurses and doctors. At the end of the month she had an EEG, but it was normal. The next week she was having severe abdominal pain and so we took her to the emergency room. They kept her up all night giving her pain meds and doing testing. In the morning when the doctor came in to see her, he woke her up. As soon as he left, she had another seizure. While she was in the hospital she was kept on a video EEG for 24 hours, but she didn't have any more. She ended up having about 5 seizures between August and October, so we got in with a pediatric neurologist and she started her back on Lamictal. This has been a rotten thing for her because it effected her adversely with behavioral and emotional side effects. It was unclear what was causing these things because she was also on prednisone for a couple months. After getting off the prednisone, it was more clear that it was this medication, so the doctor cut her dose in half. That seemed to make the depression worse and ultimately she ended up in the hospital in April for severe depression. Currently we're weaning her off of that medicine completely, but the process is slow and the withdrawal has its own problems. She had another video EEG, this time for 4 days, in April while on the half dose, but, again, that showed nothing.
Abdominal pain: Between September and November she was tested and found to have small bowel bacterial overgrowth and was treated with Flagyl in October. After that treatment, her abdominal pain seemed to be as bad as ever. In November we got a c.diff and ended up going to the hospital and being put on prednisone. The c.diff came up positive and she was treated with a stronger course of Flagyl. At the end of January the prednisone was weaned. She finally has had some reprieve from the abdominal pain and no longer has diarrhea since the end of January. She is also keeping her 25 lbs that she gained on prednisone, for which we are happy.
In December she had her third hospitalization of the four since September. This was due to a blood clot in her arm. I'm pretty sure that I already posted about that.
For her depression, she was first tried on Effexor because that seems to work for her sister, but it was not a good match for her. She got abdominal pain and dizziness. They switched her to a low dose fluoxetine, which seems better, but she has no appetite most of the time. She seems to keep her weight, though, so we're just leaving it as is. I'm hoping that we can get her off of it once the Lamictal is completely weaned, but I do think she had some underlying depression from all her medical problems, and maybe it is best to leave her on it for awhile until she feels better emotionally and can find a remission in the area of depression too. These days she sleeps a lot, has insomnia at night, and is twitchy during the day - I attribute this to the withdrawal, but so often it is hard to tell.
I realized during her hospitalization for depression, that a big trigger to her symptoms and suicidality was school frustrations. I pulled her out of two of her classes that she was behind in, and she has done better in her remaining classes. The lamictal makes learning harder for her and makes writing overwhelming. She is being evaluated right now by the special education department to see if they can find anything they can recommend to make learning easier for her and to support her in her challenges for next year. Unfortunately, she has had to go home from school early on Friday and today due to other health related problems, so I'm hoping that she is not missing her connections with her learning specialists coming in to talk with her and evaluate her...
Her lymphedema is still mild, but not resolved. With her weight gain, her compression stockings have gotten too small. The lymphedema clinic is going to wrap her legs and do massage for the next 3-4 weeks, then remeasure for the stockings. I also hope to get her in the pool for her lymphedema and for her hypermobility syndrome.
She has had joint pains with activity more frequently, and I think it is overall because she is losing muscle tone. She seems to partially dislocate more easily. One day it was her foot after running around with her brother. Another day it was her elbow when she bumped it at school. It hurt for a day, then it popped and felt better. I have done a lot of research regarding Ehlers-Danlos syndrome and I am convinced that this is the reason she has all of her health problems, except perhaps the lymphedema. I'm not sure of the relationship there. In my research, however, I have found a connection to her abdominal complaints, seizures, depression, osteoporosis, thrombophlebitis, hypermobility (of course), joint pains. She is on a waiting list to see the geneticist in the next 6-12 months.
Seizures: Starting in August at camp last summer she had two seizures two nights in a row. She was sent home from Camp Oasis because the seizures were too much for them to handle as a staff of GI nurses and doctors. At the end of the month she had an EEG, but it was normal. The next week she was having severe abdominal pain and so we took her to the emergency room. They kept her up all night giving her pain meds and doing testing. In the morning when the doctor came in to see her, he woke her up. As soon as he left, she had another seizure. While she was in the hospital she was kept on a video EEG for 24 hours, but she didn't have any more. She ended up having about 5 seizures between August and October, so we got in with a pediatric neurologist and she started her back on Lamictal. This has been a rotten thing for her because it effected her adversely with behavioral and emotional side effects. It was unclear what was causing these things because she was also on prednisone for a couple months. After getting off the prednisone, it was more clear that it was this medication, so the doctor cut her dose in half. That seemed to make the depression worse and ultimately she ended up in the hospital in April for severe depression. Currently we're weaning her off of that medicine completely, but the process is slow and the withdrawal has its own problems. She had another video EEG, this time for 4 days, in April while on the half dose, but, again, that showed nothing.
Abdominal pain: Between September and November she was tested and found to have small bowel bacterial overgrowth and was treated with Flagyl in October. After that treatment, her abdominal pain seemed to be as bad as ever. In November we got a c.diff and ended up going to the hospital and being put on prednisone. The c.diff came up positive and she was treated with a stronger course of Flagyl. At the end of January the prednisone was weaned. She finally has had some reprieve from the abdominal pain and no longer has diarrhea since the end of January. She is also keeping her 25 lbs that she gained on prednisone, for which we are happy.
In December she had her third hospitalization of the four since September. This was due to a blood clot in her arm. I'm pretty sure that I already posted about that.
For her depression, she was first tried on Effexor because that seems to work for her sister, but it was not a good match for her. She got abdominal pain and dizziness. They switched her to a low dose fluoxetine, which seems better, but she has no appetite most of the time. She seems to keep her weight, though, so we're just leaving it as is. I'm hoping that we can get her off of it once the Lamictal is completely weaned, but I do think she had some underlying depression from all her medical problems, and maybe it is best to leave her on it for awhile until she feels better emotionally and can find a remission in the area of depression too. These days she sleeps a lot, has insomnia at night, and is twitchy during the day - I attribute this to the withdrawal, but so often it is hard to tell.
I realized during her hospitalization for depression, that a big trigger to her symptoms and suicidality was school frustrations. I pulled her out of two of her classes that she was behind in, and she has done better in her remaining classes. The lamictal makes learning harder for her and makes writing overwhelming. She is being evaluated right now by the special education department to see if they can find anything they can recommend to make learning easier for her and to support her in her challenges for next year. Unfortunately, she has had to go home from school early on Friday and today due to other health related problems, so I'm hoping that she is not missing her connections with her learning specialists coming in to talk with her and evaluate her...
Her lymphedema is still mild, but not resolved. With her weight gain, her compression stockings have gotten too small. The lymphedema clinic is going to wrap her legs and do massage for the next 3-4 weeks, then remeasure for the stockings. I also hope to get her in the pool for her lymphedema and for her hypermobility syndrome.
She has had joint pains with activity more frequently, and I think it is overall because she is losing muscle tone. She seems to partially dislocate more easily. One day it was her foot after running around with her brother. Another day it was her elbow when she bumped it at school. It hurt for a day, then it popped and felt better. I have done a lot of research regarding Ehlers-Danlos syndrome and I am convinced that this is the reason she has all of her health problems, except perhaps the lymphedema. I'm not sure of the relationship there. In my research, however, I have found a connection to her abdominal complaints, seizures, depression, osteoporosis, thrombophlebitis, hypermobility (of course), joint pains. She is on a waiting list to see the geneticist in the next 6-12 months.
Thursday, January 28, 2016
January News
Pumpkin is finally off of prednisone. She has been doing very well GI wise with pain mostly being during her monthly flow. She is having mostly soft stools. She has been maintaining her weight at 116 lbs. We're very pleased with this.
This week she got that bad sore throat with fevers up to 101. She now has a painful face and lots of snot to go with it. Of course we are doing our best to stay away from antibiotics. She did get a strep screen that was negative. She hasn't been able to eat for a couple days, but was taking Ensure and milkshakes. Last night the sore throat let up and she ate a couple bowls of chili and a bunch of other stuff! I'm hoping that she doesn't lose too much weight over it.
We are still waiting to get her referral from the geneticist in Park Ridge to see about her hypermobility syndrome. Twice they told me that it was in the process. It is so frustrating that it isn't happening.
This week she got that bad sore throat with fevers up to 101. She now has a painful face and lots of snot to go with it. Of course we are doing our best to stay away from antibiotics. She did get a strep screen that was negative. She hasn't been able to eat for a couple days, but was taking Ensure and milkshakes. Last night the sore throat let up and she ate a couple bowls of chili and a bunch of other stuff! I'm hoping that she doesn't lose too much weight over it.
We are still waiting to get her referral from the geneticist in Park Ridge to see about her hypermobility syndrome. Twice they told me that it was in the process. It is so frustrating that it isn't happening.
Saturday, December 26, 2015
On Being Mom to a Medically Complicated Child
I mentioned in my last post that Pumpkin had been having a sore throat. I took her in that week and her strep screen was negative. However, her sister's was positive. The following weekend, Pumpkin noticed that her left arm had a painful swollen vein in a place that she hadn't had before. Within a day or two it was very sore, swollen and painful.
I tried to get her in to see her doctor on Tuesday, the 21st, but they couldn't get her in and had her go to the ER. We were expecting an exam, ultrasound, and a prescription for antibiotics to send us on our merry way home. Instead, she was admitted for IV antibiotics (vancomycin) and observation. The ultrasound showed she had a big clot (9 cm long - about 3.5 inches) in her basilic vein, which, fortunately, is a superficial vein and doesn't pose any real mortality risks.
While in the hospital she saw many pediatric hospitalists and residents, a surgeon, and a hematologist. Heck, she even saw Santa Claus! Where she got the IV, she kept trying to start getting phlebitis with every infusion, and each time they had to flush the IV it gave her a lot of pain. We found that if we gave her hot packs during the infusion and kept the IV at a low tko rate at other times, she did better and the inflammation and induration of the vein got better. On the 24th they repeated the ultrasound and the clot had shrunk to 5 cm. They felt she was doing well enough to send her home.
All along they had told me that she would be changed to an oral antibiotic upon discharge. While in the hospital, she had been on vancomycin, which is used to treat resistant c.difficile. They had checked her stool for c.difficile, even though she is no longer symptomatic. It was still positive. This can be a false positive, but it didn't give us the reassurance that Pumpkin was no longer in danger of c.difficile. When they told me that they were going to send her home, they told me that she would be going home on oral clindamycin with Flagyl to help keep the c.diff at bay. In my practice as a physician assistant, there is one drug that is notorious for activating c.difficile, and that is clindamycin. For these people (the hospital docs) who have not been closely following Pumpkin, this seemed logical. For me, who knows that Pumpkin's original c.difficile was activated by a 10 day course of, none other than the very medicine to treat c.difficile, Flagyl! My head was spinning! After the doctor left, I processed this and came to the conclusion that although Pumpkin hated being in the hospital, was crying every time she got Vancomycin, and although it was Christmas Eve, her blood clot was receding and her c.difficile was not raring up. I'd rather deal with the meds that were currently working than switch to another med that had a very likely chance of putting her back in the hospital in another 2 weeks for c.diff! I asked for the doctor to come back and requested that she get an infectious disease consult or discuss the matter with Pumpkin's GI before going forward. She was very nice, and she came back an hour later stating that she had discussed the case with the infectious disease doctor, who told her to use cephalexin and no flagyl. I felt more at peace with this. As the pediatrician was still in the room putting the orders into the computer, she heard me sighing loudly. I didn't even know I was doing it until she confronted me a couple times wanting me to tell her how she could help me. I think I was processing the change and letting off stress. I didn't mean to make her uncomfortable. I wonder how many docs I drive crazy with my doubting, double-checking, bringing up concerns, etc.
We live in rural Illinois. My daughter's specialists are in three major cities and four different health systems. In the past 3 years she has been diagnosed with crohn's disease, osteoporosis, asthma, scoliosis, primary lymphedema (told to us by the physical therapist, not officially labeled by a doctor), seizures (which she has had since age 4), and most recently hypermobility syndrome and finally blood clots! This year alone she has seen 13 specialists - not counting all the ones she saw as an inpatient, been hospitalized three times (all since September), and has had scopes, testing for SIBO (small intestine bacterial overgrowth), an MRI of her lumbar spine and of her brain, ultrasounds of her legs and arms and neck for blood clots and swelling, xrays of her spine and sacrum, too many blood tests to count. She is on seizure medication, immunomodulator, and has been on steroids and antibiotics x 3, not to mention probiotics, essential oils, vitamins and nutritional supplements.
Today is the last day of prednisone. What will happen next? Will the Crohn's return? Will she react to being withdrawn too quickly? Will the c.diff return? When will the next hammer fall?
In the next three months she will see the hematologist regarding her clotting, her pediatrician for a hospital followup, her gastroenterologist, an immunologist (I hope), a geneticist to rule out Ehlers-Danlos, her rheumatologist for her joint pains and her neurologist for her seizures. She will continue to see her orthodontist until she gets her braces removed, have a follow-up with her asthma specialist, and followup with the orthopedic surgeon regarding her scoliosis.
Are all of her symptoms due to Crohn's, or does she have something else that is causing it all such as Ehlers-Danlos Syndrome, Immunodeficiency, or something else altogether?
Editing to add: Pumpkin isn't my only child. I have three other children, each with their own issues. One has major anxiety issues, one has bowel and bladder and weight issues, one has a tick bite that has swollen up a lymph node, and then there is my husband who in the last 2 months has fallen on a ladder from 12 feet up, possibly broken some ribs on another occasion, and today I took him to the ER because he screwed up his foot in a 4-wheeler accident.
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| Above is the area of inflammation and pain where her fingers are. Below along the arm is bruising she had after her last IV from getting PPN in the hospital when she had c.diff in midNovember. She'd had inflammation there for about a week, then it went away. |
While in the hospital she saw many pediatric hospitalists and residents, a surgeon, and a hematologist. Heck, she even saw Santa Claus! Where she got the IV, she kept trying to start getting phlebitis with every infusion, and each time they had to flush the IV it gave her a lot of pain. We found that if we gave her hot packs during the infusion and kept the IV at a low tko rate at other times, she did better and the inflammation and induration of the vein got better. On the 24th they repeated the ultrasound and the clot had shrunk to 5 cm. They felt she was doing well enough to send her home.
All along they had told me that she would be changed to an oral antibiotic upon discharge. While in the hospital, she had been on vancomycin, which is used to treat resistant c.difficile. They had checked her stool for c.difficile, even though she is no longer symptomatic. It was still positive. This can be a false positive, but it didn't give us the reassurance that Pumpkin was no longer in danger of c.difficile. When they told me that they were going to send her home, they told me that she would be going home on oral clindamycin with Flagyl to help keep the c.diff at bay. In my practice as a physician assistant, there is one drug that is notorious for activating c.difficile, and that is clindamycin. For these people (the hospital docs) who have not been closely following Pumpkin, this seemed logical. For me, who knows that Pumpkin's original c.difficile was activated by a 10 day course of, none other than the very medicine to treat c.difficile, Flagyl! My head was spinning! After the doctor left, I processed this and came to the conclusion that although Pumpkin hated being in the hospital, was crying every time she got Vancomycin, and although it was Christmas Eve, her blood clot was receding and her c.difficile was not raring up. I'd rather deal with the meds that were currently working than switch to another med that had a very likely chance of putting her back in the hospital in another 2 weeks for c.diff! I asked for the doctor to come back and requested that she get an infectious disease consult or discuss the matter with Pumpkin's GI before going forward. She was very nice, and she came back an hour later stating that she had discussed the case with the infectious disease doctor, who told her to use cephalexin and no flagyl. I felt more at peace with this. As the pediatrician was still in the room putting the orders into the computer, she heard me sighing loudly. I didn't even know I was doing it until she confronted me a couple times wanting me to tell her how she could help me. I think I was processing the change and letting off stress. I didn't mean to make her uncomfortable. I wonder how many docs I drive crazy with my doubting, double-checking, bringing up concerns, etc.
We live in rural Illinois. My daughter's specialists are in three major cities and four different health systems. In the past 3 years she has been diagnosed with crohn's disease, osteoporosis, asthma, scoliosis, primary lymphedema (told to us by the physical therapist, not officially labeled by a doctor), seizures (which she has had since age 4), and most recently hypermobility syndrome and finally blood clots! This year alone she has seen 13 specialists - not counting all the ones she saw as an inpatient, been hospitalized three times (all since September), and has had scopes, testing for SIBO (small intestine bacterial overgrowth), an MRI of her lumbar spine and of her brain, ultrasounds of her legs and arms and neck for blood clots and swelling, xrays of her spine and sacrum, too many blood tests to count. She is on seizure medication, immunomodulator, and has been on steroids and antibiotics x 3, not to mention probiotics, essential oils, vitamins and nutritional supplements.
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| This is a very happy Pumpkin in her Christmas Eve jammies, home from the hospital. She's looking pretty good and I hope and pray it lasts. |
In the next three months she will see the hematologist regarding her clotting, her pediatrician for a hospital followup, her gastroenterologist, an immunologist (I hope), a geneticist to rule out Ehlers-Danlos, her rheumatologist for her joint pains and her neurologist for her seizures. She will continue to see her orthodontist until she gets her braces removed, have a follow-up with her asthma specialist, and followup with the orthopedic surgeon regarding her scoliosis.
Are all of her symptoms due to Crohn's, or does she have something else that is causing it all such as Ehlers-Danlos Syndrome, Immunodeficiency, or something else altogether?
Editing to add: Pumpkin isn't my only child. I have three other children, each with their own issues. One has major anxiety issues, one has bowel and bladder and weight issues, one has a tick bite that has swollen up a lymph node, and then there is my husband who in the last 2 months has fallen on a ladder from 12 feet up, possibly broken some ribs on another occasion, and today I took him to the ER because he screwed up his foot in a 4-wheeler accident.
Tuesday, December 15, 2015
Weaning off prednisone and New Diagnosis: Hypermobility Syndrome
Currently Pumpkin is weaning off of prednisone and is starting to get some of her previous symptoms back, namely joint pains and abdominal cramping. She had one day of being pain-free in her abdomen (the day she went to visit the GI - three weeks after discharge), but now that has returned as well. Her stools have become more formed, but prednisone constipates her a little. She has gained up to 113 lbs altogether! If her symptoms return, she will have to go on the stronger Crohn's med.
She hasn't had any seizure activity for about a month. She is up to 5/8 of her total lamictal dose on the titrating up schedule. Thursday she will go up to 75 mg twice a day. She seems to be handling it well.
Ten days ago she had a little emotional crisis and she decided that hurting herself was preferable to the emotional pain she was feeling. She cried for at least half an hour when I took the book away that she was clobbering herself with and made her come in to my room so I could watch her. She's been much happier since that day though, thankfully.
On the 10th we saw a rheumatologist. He thinks she has hypermobility syndrome. It makes a lot of sense since it is common in kids with crohns. Interestingly, she has other symptoms that go along with Ehlers-Danlos syndrome (type 3), which is a genetic disorder, including osteoporosis, slow healing with scarring, stretchy skin, joint laxity and pain, insomnia, anxiety, flat feet (she wears orthotics). Twice in her childhood she has gotten so bad that she had to have OT to help her with postural problems due to low muscle tone, hand weakness, etc. It has interfered with her learning in a normal classroom at times (especially when her crohn's symptoms were out of control). I see other symptoms of EDSIII in my two other girls, so I've asked for a referral to a geneticist. Pumpkin is also being tested for other types of arthritis.
Since Saturday, December 14, she got a virus that her little sister has been fighting so that is muddying the water with more joint pain, fever and sore throat. She is starting to get over it and today finally didn't have sore throat. She is going to try to go back to school tomorrow. She had a strep screen today, which was negative as I suspected.
Friday, December 4, 2015
Hospitalization and Road to Recovery
The evening of my last post, I ended up taking Pumpkin to the hospital. Her c.diff came out positive the next day. She spent 5 days inpatient receiving IV steroids, antibiotics and TPN given peripherally. She started coming around. When they sent her home they gave her enough antibiotics (Flagyl again) for a total of 14 days, and put her back on prednisone. They also increased her 6MP by 25%.
Since being home she has gained weight from 98 lbs at discharge up to 11l lbs, yesterday! Her abdominal pain has resolved and she is having 1-2 formed or hard stools/day. She is weaning of the prednisone by 5 mg every 5 days.
She has been slowly increasing her Lamictal and has not had any more full on seizures, and has had an increase in partial seizures, but those are declining as we go up in dose.
Her leg swelling has come back.
Her face is swollen, with a double chin, and her acne is getting pretty noticeable. These things we attribute to her prednisone.
About half of her hair has come out, probably due to all her stress. She thinks it has stopped coming out, however.
Yesterday we went to followup with the GI doctor. She wants to see if her adjustment of 6MP has resolved her problem and is not planning on putting her on a biologic yet. She promised that if Pumpkin flares again she won't make us run the gammet again, but will change her medication right away. Pumpkin was pretty distraught about this because she doesn't want to have to get bad again.
Since being home she has gained weight from 98 lbs at discharge up to 11l lbs, yesterday! Her abdominal pain has resolved and she is having 1-2 formed or hard stools/day. She is weaning of the prednisone by 5 mg every 5 days.
She has been slowly increasing her Lamictal and has not had any more full on seizures, and has had an increase in partial seizures, but those are declining as we go up in dose.
Her leg swelling has come back.
Her face is swollen, with a double chin, and her acne is getting pretty noticeable. These things we attribute to her prednisone.
About half of her hair has come out, probably due to all her stress. She thinks it has stopped coming out, however.
Yesterday we went to followup with the GI doctor. She wants to see if her adjustment of 6MP has resolved her problem and is not planning on putting her on a biologic yet. She promised that if Pumpkin flares again she won't make us run the gammet again, but will change her medication right away. Pumpkin was pretty distraught about this because she doesn't want to have to get bad again.
Sunday, November 8, 2015
Doing terribly
Here's another update on Pumpkin:
She is still very sick.
Her symptoms are worsening.
She has diarrhea, no appetite and not eating, has back and intestinal pains and has now gotten weak. She is on day 5 or 6 of a heavy period passing clots. She is missing school (Monday and Friday, and I doubt she'll be up to going on Monday ). She has dropped her weight down to 96 lbs.
GI response: they are in disagreement about Remicade so it has not gone forward. They wanted her to try another medicine for SIBO, but it was $1500 and the insurance won't cover it. They decided to try prednisone again, telling us that she'd take 20 mg twice a day for 5 days to see if it would help and then go from there. She is on day two now. Of course we have concerns about this, mainly for 4 reasons: She already has osteoporosis, I think it lowers her seizure threshold, she ended up in the hospital at the end of September while finishing up a course of prednisone, and it alters her taste. She has given stool samples for c diff and fecal calprotectin to our local hospital yesterday morning.
On the seizure front, her new neurologist put her back on Lamictal. She is starting low at 25 mg and titrating up slowly. While I don't think it is causing her GI problems, I am thinking that it may be muddying the water. She does seem to have more abdominal pain, diarrhea and cramping since starting it on Oct. 29, but perhaps the course of the disease would do the same? I am anxious what doubling her dose on Thursday is going to do to her. Her seizures seem to me to be getting longer (2 min vs 30-40 seconds), but still not frequent. She had one or two seizures in October, that I witnessed, and one this month on the second of November which somehow took her from the bed to the floor. She chewed up her tongue pretty good that time. I am going to call the neurologist tomorrow to discuss stopping the Lamictal for a few days to see if that helps.
Pumpkin is emotionally depressed about all of her health problems and feeling so sick all the time. Last evening she was crying. The counselor she saw July-September didn't really work out, and we didn't reschedule since her hospitalization. I think we need to find another, and would especially like someone who works with kids with multiple health problems.
I don't remember Pumpkin being this bad since around the time she was diagnosed with Crohn's. She is skin and bones, weak and miserable, and suffering. Perhaps she needs elemental nutrition again. She seems to think eating makes her worse, so she is living off mostly Gatorade. The two days she did eat, she suffered for it the next day with increased diarrhea and pain.
We did get an appointment to see rheumatology December 8. We haven't heard anything regarding an immunology consult.
Regarding her leg swelling, it hasn't really swelled for a couple months. Pumpkin doesn't wear the stockings lately, and with the rest going on, I haven't made it an issue.
I think that about covers our last 10 days.
She is still very sick.
Her symptoms are worsening.
She has diarrhea, no appetite and not eating, has back and intestinal pains and has now gotten weak. She is on day 5 or 6 of a heavy period passing clots. She is missing school (Monday and Friday, and I doubt she'll be up to going on Monday ). She has dropped her weight down to 96 lbs.
GI response: they are in disagreement about Remicade so it has not gone forward. They wanted her to try another medicine for SIBO, but it was $1500 and the insurance won't cover it. They decided to try prednisone again, telling us that she'd take 20 mg twice a day for 5 days to see if it would help and then go from there. She is on day two now. Of course we have concerns about this, mainly for 4 reasons: She already has osteoporosis, I think it lowers her seizure threshold, she ended up in the hospital at the end of September while finishing up a course of prednisone, and it alters her taste. She has given stool samples for c diff and fecal calprotectin to our local hospital yesterday morning.
On the seizure front, her new neurologist put her back on Lamictal. She is starting low at 25 mg and titrating up slowly. While I don't think it is causing her GI problems, I am thinking that it may be muddying the water. She does seem to have more abdominal pain, diarrhea and cramping since starting it on Oct. 29, but perhaps the course of the disease would do the same? I am anxious what doubling her dose on Thursday is going to do to her. Her seizures seem to me to be getting longer (2 min vs 30-40 seconds), but still not frequent. She had one or two seizures in October, that I witnessed, and one this month on the second of November which somehow took her from the bed to the floor. She chewed up her tongue pretty good that time. I am going to call the neurologist tomorrow to discuss stopping the Lamictal for a few days to see if that helps.
Pumpkin is emotionally depressed about all of her health problems and feeling so sick all the time. Last evening she was crying. The counselor she saw July-September didn't really work out, and we didn't reschedule since her hospitalization. I think we need to find another, and would especially like someone who works with kids with multiple health problems.
I don't remember Pumpkin being this bad since around the time she was diagnosed with Crohn's. She is skin and bones, weak and miserable, and suffering. Perhaps she needs elemental nutrition again. She seems to think eating makes her worse, so she is living off mostly Gatorade. The two days she did eat, she suffered for it the next day with increased diarrhea and pain.
We did get an appointment to see rheumatology December 8. We haven't heard anything regarding an immunology consult.
Regarding her leg swelling, it hasn't really swelled for a couple months. Pumpkin doesn't wear the stockings lately, and with the rest going on, I haven't made it an issue.
I think that about covers our last 10 days.
Tuesday, November 3, 2015
So sick, GI doc taking forever!
Pumpkin finished her Flagyl/metronidazole with no improvement. Two weeks ago on October 20 she had an appt in the Chicago area with her GI. She was down to 102 or 103 lbs already. On the way she had to stop 3-4 times to use the toilet. The next two days she had fevers and severe diarrhea and abdominal pain. Her joints were terribly inflamed. She has improved since then to the point that she has gone to school 4 of her 6 school days, but usually comes home and goes right to bed. She has had blood in her stools, but now she says her diarrhea is like pure mucus. To me it looked like baby poo. She has had constant diarrhea whether she eats or not, and usually she doesn't eat. Yesterday her only intake was a cup of rice milk and some toast. Today she's just had Gatorade (1.5 glasses by 1:15pm.) Her GI wants to start her on Remicade or Humira, but she's running into some obstacles that she's yet to tell me. I am waiting for a call back from her. I've called 10-23, 10-27, 10-30 and today...
This morning she had another seizure. I don't think she'd had another since 10-8. At least not that I witnessed. She finally saw a neurologist on 10-29. She is starting her back on Lamictal. So far she's taken 25 mg/day. Today she is getting an MRI of her brain at The Princeton hospital.
This morning she had another seizure. I don't think she'd had another since 10-8. At least not that I witnessed. She finally saw a neurologist on 10-29. She is starting her back on Lamictal. So far she's taken 25 mg/day. Today she is getting an MRI of her brain at The Princeton hospital.
Sunday, October 11, 2015
Summer2015 Summary
Since our last visit, Pumpkin had scopes and pill cam in the spring, which were normal. They did not start her on any new meds, but called it IBS, which in my opinion means "I Be Stupid" and diagnosis the doctor, not the patient. It means they really don't know why they are still suffering. They gave her Anaspaz and later another antispasmodic that starts with a d, that isn't coming to my brain just now. Both were not really helpful, and both lowered her seizure threshold to the point of breakthrough seizures. Recently, she had a Lactulose breath test and was diagnosed with SIBO (small bowel bacterial overgrowth) and she is now on Flagyl (metronidazole) for 10 days. Hopefully that will cure her, or at least fix her GI wise for a long stent. A few weeks ago, she was hurting so bad that we had to take her to the ER. She got better during the night, but had another seizure while there, and had to stay for a 24 hour video EEG, which did not catch any more seizure activity. More on this later.
Pumpkin tried to work this summer, but her health problems and frequent abdominal pain proved to be too much. She frequently had to lay down, and one of her legs swelled up abnormally.. She had to have the following tests: MRI of her lumbar spine to rule out spinal shearing. It was normal. Two spinal xrays, one said scoliosis, but second one normal. She saw a neurosurgeon and an orthopedist, which ruled out those conditions. She had a leg ultrasound, ECG and saw a cardiologist for her swollen leg. It ended up that she has primary lymphodema in her leg and has to wear compression stockings on her left leg day and night for the rest of her life. She saw a lymphedema clinic for this, and had a few visits to Peoria to get measured and fit for the stockings.
In August Pumpkin went to Wisconsin for Camp Oasis. She loved it. However, she had recently seen her GI, who upped her antispasmodic to four times a day. She ended up having seizures two nights in a row, and they asked me to come get her. This made me incredibly sad for her, because she couldn't even get a break when she was surrounded by doctors and nurses at a camp for kids with Crohn's. Hindsight, I think the increased dose of her antispasmodic triggered the seizures. She continues to have seizures about once a week, but I can usually attribute it to some trigger: sleep deprivation, taking Flagyl, taking an antispasmodic, etc. She sees a pediatric neurologist at the end of the month to discuss her seizures.
This summer she had problems with her asthma. She was on prednisone for 12 days to help diagnose it. She seems to be doing well on Symbicort now and rarely needs her albuterol inhaler any more. She was finishing up her prednisone last month when she went to the hospital. The prednisone had made her constipated too, which is really abnormal for her. She also was pricked 69 times for allergy testing and saw the allergy and asthma doc 3 times over the summer.
Finally, I think, she also saw a counselor several times in August and September. I don't think we ever really connected very well with her, and with all her other stuff going on, we just stopped going.
I guess that
Pumpkin tried to work this summer, but her health problems and frequent abdominal pain proved to be too much. She frequently had to lay down, and one of her legs swelled up abnormally.. She had to have the following tests: MRI of her lumbar spine to rule out spinal shearing. It was normal. Two spinal xrays, one said scoliosis, but second one normal. She saw a neurosurgeon and an orthopedist, which ruled out those conditions. She had a leg ultrasound, ECG and saw a cardiologist for her swollen leg. It ended up that she has primary lymphodema in her leg and has to wear compression stockings on her left leg day and night for the rest of her life. She saw a lymphedema clinic for this, and had a few visits to Peoria to get measured and fit for the stockings.
In August Pumpkin went to Wisconsin for Camp Oasis. She loved it. However, she had recently seen her GI, who upped her antispasmodic to four times a day. She ended up having seizures two nights in a row, and they asked me to come get her. This made me incredibly sad for her, because she couldn't even get a break when she was surrounded by doctors and nurses at a camp for kids with Crohn's. Hindsight, I think the increased dose of her antispasmodic triggered the seizures. She continues to have seizures about once a week, but I can usually attribute it to some trigger: sleep deprivation, taking Flagyl, taking an antispasmodic, etc. She sees a pediatric neurologist at the end of the month to discuss her seizures.
This summer she had problems with her asthma. She was on prednisone for 12 days to help diagnose it. She seems to be doing well on Symbicort now and rarely needs her albuterol inhaler any more. She was finishing up her prednisone last month when she went to the hospital. The prednisone had made her constipated too, which is really abnormal for her. She also was pricked 69 times for allergy testing and saw the allergy and asthma doc 3 times over the summer.
Finally, I think, she also saw a counselor several times in August and September. I don't think we ever really connected very well with her, and with all her other stuff going on, we just stopped going.
I guess that
Thursday, March 12, 2015
Changes in Doctors, looking at possible changes in schools
As you probably read into my last post, I wasn't happy with the responses I was getting from our previous peds GI. He didn't seem to think that Pumpkin had a problem. Pumpkin wouldn't talk to him either because he was a man, and foreign and older. I think he intimidated us and we didn't really feel he was listening to us.
Last month we visited a new GI in Chicago. It is a much longer commute, but we liked her very much. She listened to us and brought us into what she was thinking and planning, which is right along the same track as I. I hoped that she would want to repeat her scopes and see that Pumpkin was not in remission and give us hope that we could make some changes in her regimen. She didn't have Pumpkin's records from her previous GI, but promised to look them over and planned an upper GI and colonoscopy, which we will do next week. She also is considering pill cam again, since that is what showed most of Pumpkin's inflammation last time. She seems to be treating Pumpkin as a whole and not just her numbers, which have never been very impressive. I'm thrilled!
Other IBD kids on the forums all seem superkids with amazing stories and seem to come through everything shining like some super hero. We're having more of a struggle when it comes to high school.
Pumpkin has always struggled to keep up with school. She is a bright girl and catches onto concepts quickly. Problem is: she is sick so often she has a hard time keeping up and when she gets behind she starts hating school and stops trying. She struggles mainly with two aspects of school: taking notes and writing. She is a slow writer. Getting concepts from her brain onto paper takes a long time. If you ask her the same question she'll tell you the answer orally without any problem. I will admit, I've been lax on making her do the written stuff, because I feel that it would be impossible for her to keep up with it all. Now she is finishing her freshman year and I hear her saying things like, "I don't think I can do ________" because I won't be able to go to college anyway. She thinks college will be too hard for her. I don't know how to help her. I brought her home this semester halfway through the year because she was so miserable. Granted she did pull off As and Bs last semester at her private school. However, the stress seemed to be making her Crohn's worse and worse. I'm glad now that she is only doing half-time school at the private school, because she has a colonoscopy coming up, starting Remicade (probably), etc. That would definitely put her over the edge.
We went last week and took a look at the public high school. My oldest daughter wants to transfer there for more opportunities for different classes. Pumpkin, on the other hand, is not so sure. I'm not so sure! It is so scary to make changes, especially when you don't know what it is like, and when your child's health may or may not be good... They aren't taking her homeschool class credits this semester (English, History and Biology) and so she'd probably have to do them over (or take remedial English - which sounds like a bad word to have on your transcript...). I'm not sure what to do. I have these options: 1. continue to do what we're doing - half-time homeschool, and half-time private school (I feel her education is lacking in the English department); 2. put her back in the private school full time (very stressful, but supportive staff); 3. try public school, and hope they work with me to find a track that fits her; 4. full-time homeschooling with an accredited program that she can do at her own pace.
Thanks for any advice or encouragement you may have!
Last month we visited a new GI in Chicago. It is a much longer commute, but we liked her very much. She listened to us and brought us into what she was thinking and planning, which is right along the same track as I. I hoped that she would want to repeat her scopes and see that Pumpkin was not in remission and give us hope that we could make some changes in her regimen. She didn't have Pumpkin's records from her previous GI, but promised to look them over and planned an upper GI and colonoscopy, which we will do next week. She also is considering pill cam again, since that is what showed most of Pumpkin's inflammation last time. She seems to be treating Pumpkin as a whole and not just her numbers, which have never been very impressive. I'm thrilled!
Other IBD kids on the forums all seem superkids with amazing stories and seem to come through everything shining like some super hero. We're having more of a struggle when it comes to high school.
Pumpkin has always struggled to keep up with school. She is a bright girl and catches onto concepts quickly. Problem is: she is sick so often she has a hard time keeping up and when she gets behind she starts hating school and stops trying. She struggles mainly with two aspects of school: taking notes and writing. She is a slow writer. Getting concepts from her brain onto paper takes a long time. If you ask her the same question she'll tell you the answer orally without any problem. I will admit, I've been lax on making her do the written stuff, because I feel that it would be impossible for her to keep up with it all. Now she is finishing her freshman year and I hear her saying things like, "I don't think I can do ________" because I won't be able to go to college anyway. She thinks college will be too hard for her. I don't know how to help her. I brought her home this semester halfway through the year because she was so miserable. Granted she did pull off As and Bs last semester at her private school. However, the stress seemed to be making her Crohn's worse and worse. I'm glad now that she is only doing half-time school at the private school, because she has a colonoscopy coming up, starting Remicade (probably), etc. That would definitely put her over the edge.
We went last week and took a look at the public high school. My oldest daughter wants to transfer there for more opportunities for different classes. Pumpkin, on the other hand, is not so sure. I'm not so sure! It is so scary to make changes, especially when you don't know what it is like, and when your child's health may or may not be good... They aren't taking her homeschool class credits this semester (English, History and Biology) and so she'd probably have to do them over (or take remedial English - which sounds like a bad word to have on your transcript...). I'm not sure what to do. I have these options: 1. continue to do what we're doing - half-time homeschool, and half-time private school (I feel her education is lacking in the English department); 2. put her back in the private school full time (very stressful, but supportive staff); 3. try public school, and hope they work with me to find a track that fits her; 4. full-time homeschooling with an accredited program that she can do at her own pace.
Thanks for any advice or encouragement you may have!
Saturday, January 31, 2015
January 29 Office Visit
So we went to see the GI again. He didn't seem at all concerned with Pumpkin's symptoms. He said she looks good because her weight is "10%-ile". I tried to point out that her BMI is not normal because her height is 94%. He seemed happy because the BMI was 14. I guess he doesn't look at percentiles like her pediatrician. Her BMI is "0%ile". He didn't have much to say about her bleeding after insisting that she must have been constipated, although she wasn't and hasn't been. He discussed meds to increase her appetite and nutritional shakes. He doesn't remember that she has done all that. He brought up G-tube. Not an option yet as far as we're concerned. He finally brought up an option I was hoping for - rescoping. We'll do it on Tuesday. I am hoping for a clearer picture of what is going on inside after 2 years of treatment. I don't expect a whole lot since most of her disease is in her small bowel where the scopes can't see it. I think we're ready for a major med change. Something has to be better than this. Remicade? Regardless, I am also doing research on some major diet changes.
Oh, and the "Calm" supplement seems to be helping. She is getting to sleep easier.
Oh, and the "Calm" supplement seems to be helping. She is getting to sleep easier.
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