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.
