Well Cameran's appt went well yesterday although not much has changed. We are to stick with the Vigabtrin for atleast 6 more weeks and if still no changes we are to begin with the weaning and move on. He says we can go up on it 1 more notch being 750mg twice daily. Again there will NOT be another EEG unless things get better.
Another thing discussed was her sleeping and snoring. This raised concern when we told him how much she awakes during the night even though we are giving her Melatonin to help her sleep. So he had us raise it last night to 2mg to see if it helps and it did. We just hope it
continues!She also snores really loud so it raised a question to him of Sleep Apneia(sp??) so we are to do a sleep study in a month or so. He mentioned an EEG during a night's sleep to see if theres any activity that could be waking her up at night. These times she is waking up at night vary from 2-4 times a night and she gets all rowed up to play. So he wonders if this lack of sleep is playing roles in her daily seizures.
He also looked at her tonsuils since she has been doing this heaving breathing and holding breath that he picked up on while we where there. He says she doesn't have enormous tounsils but they are very large so maybe another possibility to all the snoring.
On another note they where very excited to hear her babbling. A great sign of moving in the right direction! She was letting it role while we where there it was too cute! You can't really make anything out its just really loud noises and lots of Yahhaeee Woohhooo Dayayas....if you understand any of that let me know : ) We love it!
Cameran's Neuro has many patients w/ IS and says her has been the most difficult.....Why???? He doesn't know! Thats what makes Infantile Spasms so hard to figure out since all the kids respond differently to the meds no matter how alike their cases are. Only one of his patients with IS has a reason to his(TS) and they recently got control with the Vigabtrin all the other patients(12) with IS with no cause are seizure free with some of the same meds we have tried. I just don't understand it! I so wish we could get these things stopped!Cameran goes back on August 25th for her follow-up so we hope to have some great progress by then!
1 comment:
Michaela is also going for a sleep study in August, and I think it's a good place for a lot of IS/LGS kids to start. I mean, how many have sleeping issues (and even extra szs) that can be resolved? I sure hope Michaela AND Cameran can see a decrease in seizure activity through something as simple (compared to the rest of life!) as a tonsilectomy! Wouldn't that be great!
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