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.
Monday, May 16, 2016
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.
 |
| 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.
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