Saturday, November 18, 2017

EDS, Gabapentin, Not Eating

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, 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.

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!

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!

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).

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.

Sometimes I am happily spinning my numerous plates on various levels and all of them are doing their thing.  Each one represents one of my children's many issues.  For Pumpkin, I have many plates spinning and they are all very close to one another.  If one plate gets a little bit out of balance, the other plates too start to wobble.  If I can't get the one plate spinning well again, the others start slowing down or threaten to crash.  Crashing plates is VERY BAD.

Pumpkin's plates are her Crohn's, her weight, her seizures, her POTS, her depression, her appetite, her high school tolerance.  They are all interconnected.  You get the picture.

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? 

The alternative the pediatric neurologist is looking at is VNS (vagal nerve stimulator).  It is implanted into her chest and wires wrap around her vagal nerve sending impulses that prevent or abort a seizure.  Two things bother me about this.  One is that Pumpkin probably has a connective tissue disorder, Ehler's Danlos type I or III.    Surgeries are not recommended due to healing issues.  The second concern I have about her having a VNS is that Pumpkin has needed a lot of MRIs.  MRIs for her brain, her GI tract, for her joint issues.  I am pretty sure that she wouldn't be able to do more MRIs if she has a VNS.  CT scans are the alternative and they make one get a lot of radiation.  Ugh! Ugh!  Ugh!

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?