It is too early to be sure but, it seems that the new med is working. We've seen a few seizure type events but, they stop before they seem to get "full-blown". I'm sure that doesn't make much sense but, it is encouraging for us.
We are still waiting to hear about the cost for Sabril. We're sure something will work out but, it has been a stressful time! I found out through the message boards that many families qualified that didn't think they would. I also found out that you can by it, from Canada, for about $300 a month. $300 isn't chump change but, it certainly isn't $1,000!
We are anxious to see if the diet is going to work. I can't believe Oliver will be on it in less than 1 week! I'm trying not to think about how challenging it is going to be for me, in relation to meal planning, etc. I feel like the first month or two will be the worst and then we'll all get the hang of it. I am hoping I can solider through it and before I know it, it will be no big deal. All the people I know on special diets have said this is usually how it works. I am sure, if it works, there will be NO better motivation to keep going! The idea of a seizure free, med free, child is almost more than I can imagine at this point.
Oliver's awesome speech therapist (Laura Graff, for those who know her) introduced us to these animal flashcards. We try to spend a few minutes on these each day along with other activities to help Oliver with his speaking skills.
1 comment:
Hi Lanier Family! My name is Kamzin Hostetler and Caroline Dugas introduced you to me with a link to your blog. My husband's name is Galen and we have a 4 month old daughter named Riley.We just arrived home yesterday from the Cleveland Clinic Hospital in Cleveland, Ohio where she was diagnosed with TSC. She is on Clonazepam currently but we're waiting for her prescription of Sabril to arrive any day now. As you can imagine, we're still in a whirlwind effect and processing our information overloaded brains. I'm so sorry that you're going through this too. But I'm so encouraged we're not alone. It's really scary!! It's so frusterating to have your baby learning and growing so well; smiling, cooing, pouting, holding her head up LAST WEEK to being in basically a newborn state again.We went to the dr's and the emergency room with videos of the infantile spasms but were diagnosed with "acid reflux" and "just reflexes". It wasn't till the night we came home from the ER I decided just to google "infant spasms" and up popped a pageful of videos of the same exact thing I saw with my daughter every day. I don't want to trade one set of problems for another with these meds but as I said we're still in a whirlwind and I didn't know what else to do at the time. If nutrition can help I'm all for it. Needless to say I'll be following you closely! Thank you for your testimony! I am so blessed and encouraged! God bless you!! ~Kami
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