Friday, October 8, 2010

Hell Week

     Well, this has certainly not been an enjoyable week. B developed a high fever last week, which I assumed indicated she had a cold, since both Andrew and I had bad colds the week before. Then, last Saturday I woke to her having a long (2 minutes) Complex Partial in bed next to me. That would be the reason why I sleep with her. Vomiting and heavy drooling present a choking hazard.
     On Sunday her face turned brilliant red and swell up and she still had a high fever, but didn't seem to have other cold symptoms.  Sunday night, around 2 a.m., I became concerned that she actually showed a reaction to her meds, the new ones we had just started her on, Tegretol. I feared she might have Stevens-Johnson Syndrome, a horrible necrotizing skin disorder that people can develop from plenty of different medications, but has more links to specific types, like anti-convulsants. I have been told every time she starts or comes off a med to watch for it.
     I phoned the nurse's line, but the nurse, who I found to be very kind, couldn't really offer direction. We both decided to wait until the morning to see how B felt.
     In the morning she had a rash all over her torso, arms, and up her neck onto her chin. I had a mini panic and got her into the GP in an hour. He agreed that she had an allergic reaction, although he couldn't say for sure either way if she might have Stevens-Johnson. I felt better though, having seen him. The visit was followed by some phone calls to the neurologist, who asked that I bring her in right away, but since that proved impossible, we agreed to have an appt. on Thursday morning. We had actually originally had an appt. Thursday morning, but since she had seen him just two weeks previously, that appt. had been cancelled. Obviously, all this had been a plot by her to keep her commitments. :)
     On Thursday she actually had three appointments, 9 a.m. at Children's Hospital, her GP at Hastings and Slocan at 10:30, and an appointment to meet her new counsellor at Child and Youth Mental Health at 2. What a hard and tiring day.
     The neurologist has now prescribed Topamax, which belongs in a different drug family, so hopefully she won't have an allergy to it. She's on the mend, but has already had two seizures today, so I've given her an Ativan, which she has been prescribed for Anxiety, but they use it for treating seizures, too. I don't want her going into Status Epilepticus today, as I feel quite done with doctors this week, thank you. They are nice people, but, yeah, we've quite had enough. 
     But let this demonstrate that I KNEW something more had happened BEFORE she developed the rash. Parents KNOW their children, so do not EVER hesitate to be pushy and demanding in getting them help, and ALWAYS follow your instincts. No doctor is ever going to get angry at having examined a healthy child, not if they are a good doctor. If they do, then they are not a good doctor, get a new one. B's doctors are great.
     One thing that worries me about the Topamax is that it induces anorexia (not anorexia nervosa), which she has already had from the Lamotrigine and which she had just recently recovered from somewhat. Oh well, high calorie, fat, and protein kid friendly snack and meal ideas are appreciated.
     I am quite tried and pretty grumpy today. I think Andrew has hidden himself away to avoid my grumps.

1 comment:

  1. I know there's nothing I can say or do to make things easier for you right now, but I'll be thinking of you both and hoping things take a turn for the better very soon. It sucks being so far away from people I care about!