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.