There's alot to tell.
At our 3 month EEG Janna was diagnosed with Infantile Spasms and we started on Vigabatrin. I was not in the mood to update the blog, I wasn't in the mood to do much else but bury my head in a pillow but hey - no time for that really when you're caring for an infant with a serious chronic condition.
The medication seemed to be doing it's job, we were getting Janna back. Still no real smiles and she was very floppy but we were seeing her more focused which was a bit of a relief. But a few weeks later I noticed some strange, very subtle rhythmic movements she was making with her arms and legs. I called Neuro, we had an emergency EEG and It turned out Vigabatrin wasn't our wonder drug. Janna was still having a large number of seizures.
We were admitted to BCCH and a new drug was added to the regimine; Nitrazepam. The idea was to completely wean Phenobarb (which she's been on in low dose since NICU) and begin a wean of Vigabatrin and introduce nitrazepam.
At first she had a cocktail of all three. This basically turned her into a drooling rag doll. Another side effect of the Nitraz is incoordination of suck and swallow so it became impossible to bottle feed her. She was incredibly floppy and sleepy but we were seeing more focus from her when she was awake and we were not seeing as many seizure clusters from her. Once the levels for Pheno and Vig came down, she was fitted with an NG feeding tube I was shown how to manage it and we procured the necessary equipment for interal feedings; we were released with a plan for weaning two of her anti-convulsants and continuing on with the Nitrazepam.
The wean started well enough. We even began some vision therapy. (We'd discovered during our Ophamology referral in-hospital that she has a Cortical Vision Impairment) but when we stepped down to only 125mg of Vigabatrin per day, on the third day - we began seeing an increase in seizure clusters and the duration of each was longer than we'd seen since we'd started the Vigabatrin. I placed an emergency call to the resident Neuro on call at BCCH, chatted with him and it was decided that we'd step back in our Vig wean to 250mg per day and keep the Nitraz steady until our follow up EEG scheduled that week.
So fast forward to that EEG - we found she was still having seizures and many of them were very subtle with almost no outward signs. In total neuro counted 30 in a 30 minute EEG time span. That was last week.
Our next plan of attack is to up the nitrazepam and keep the Vig at the same dose. We were to try this for a week and follow-up report to neuro. If we are still seeing outward signs of seizure, we'll arrange to be admitted to BCCH again and start low-dose ACTH.
One positive thing that came out of last week is that we were introduced to Canuck Place. Janna is now officially a "Canuck kid" and we'll have access to that resource when we need it.
As of today, I'm starting to feel a bit cautiously optimistic that the Nitraz and Vigabatrin might just be helping. She's regaining some head control and I counted less seizures today.
Hopefully this trend continues.
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