There are a number of issues that have arisen since the Epilepsy diagnosis. We're still waiting on the sleep study (recommended by the Anesthesiologist who saw breath-holding during the MRI) which is on hold until her cough clears up. Sophie's pediatrician is still trying to clear up her cough (which the sleep doctor said needs to be cleared before we can do the sleep study). And the transition into Kindergarten has been challenging, to say the least.
For the cough, we've tried antibiotics (did nothing), an inhaler (seemed to work), zyrtec (made her super tired and caused a phone call from the school nurse suggesting we try Claritin which is non-drowsy), Claritin (seems to be allowing more energy and a better mood but since it seemed to be working the doctor suggested we wean the inhaler), and next is Singulair (since weaning off the inhaler has caused her cough to come back...today). The irony of the cough returning is that I called the pediatrician today to tell her things are going well with weaning from the inhaler only to come home to gurgly (this is the best description I can come up with) breaths and wet coughs. The irony squared is that I also scheduled her sleep study today thinking the cough was under control. If we can keep the date, it's going to be next Saturday night.
On to the Kindergarten issue. Sophie has a late summer birthday, July 22nd to be exact, and Joe and I waffled a lot about holding her back. Unfortunately we got the Absence Seizure diagnosis after she was enrolled and pumped to start or we might have held her back recognizing that the seizures often cause a learning disability until diagnosed and she'd be starting not only much younger than many in the class but also behind academically--not to mention that she's very introverted (not a bad thing, but makes transitions difficult). Because she was so pumped to start Kindergarten we went forward with it hoping the seizures would be controlled by the time it began but they weren't and the medicine has been hard on her.
The school/teacher has been great about accommodating her constant hunger which was the side-effect of the Depakote that the doctor warned us of when she began at 125 mg. Now that she's at 625 mg she has a constant need to eat and the teacher allows to sit at her table and snack whenever she needs to, but now her behavior has become a concern too. She called yesterday and we talked for about 30 minutes about Sophie's needs as a student. We had a very positive conversation and got on the same page about tactics for helping her thrive.
Feeling really good this morning after thoroughly covering all these things before school today, I can say it was less than pleasing to have the Principal call me this afternoon! I knew after talking to the teacher that there had been a team meeting including Soph's teacher, her literacy teacher, the social worker, speech pathologist, and principal regarding Sophie's behaviors and needs but I did not expect the Principal to call.
The call was to let me know that 1) They're working hard to be pro-active with Soph and find solutions before anything becomes a problem. That the communication is not a sign that things are going bad but that they're working hard to accommodate her special needs and learn how best to respond to her personality. And that 2) Should we be thinking of pulling her from Kindergarten, they would hold her spot at the school-of-choice until next year. (I may not have mentioned you have to win the public school lottery [literally fill out a five page application and then be picked out of a hat to be one of the lucky 22 out of hundreds of applications] to be accepted into her school). She made it very clear that this is not their suggestion of what we should do, but that it had happened before where parents whose children had an "immature nature" felt they couldn't pull out of Kindergarten because they'd lose their spot.
So, here we are. I wouldn't even say her seizures are completely gone, I think I saw one at dinner tonight. And thanks to the Epilepsy we have many, many more problems to deal with. This is never how I expected Kindergarten to go. I just pray that in 6 months, I'll look back on all this knowing I made it through such a hard time with faith and trust.
