Camille's_Mom
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Hello all. I'm brand new. I was referred by someone on another site.
I have several questions and concerns...please stick with me as my thoughts are sometimes sporadic.
My little lady, Camille, was born with epilepsy. She was actually diagnosed at 2 days old, but I noticed facial twitching before the nurses showed concerns about seizures. I chalked it up to her being a new baby and didn't think she was having seizures. Anyway, she was taken by helicopter to the nearest children's hospital where she spent 9 days in the NICU. Over the next few months, she was in and out of the hospital...sometimes spending as little as 2 days, others spending as many as 5 or 6 days. We were living with my parents in Missouri when she was born because my husband quit his job in Iowa...partly because of my pre-eclampsia and after we moved, my gestational diabetes. That aside, she hasn't been to see a neurologist in a while. We now live in Indiana. We've been here since May. She's been to one neurologist since...well, I can't really remember. February or March I believe. The doctor we saw up here was fired by my husband. We were very dissatisfied. She goes to see a new doctor on January 9. My main concern is Cam's (my daughter
) development. Her original doctor said her Phenobarbital would impair her developmentally. I never thought it would do the things it's done. I'm terrified it's not going to get any better. I guess I should say what her medications are: Phenobarb 5mL/twice daily--Keppra 2mL/twice daily--Trileptal .75mL/twice daily. Since we haven't *really* been to see a doctor in such a long time, her medications have stayed the same as far as dosages for several months. Reading the horror stories from medications and sudden unknown death, I really want to change her medications as much as possible. I've looked into medical marijuana in hemp oil form. I couldn't find much information on that. I know it's not legal in Indiana, but we are quite literally on the Michigan border and it's legal there. If we have to move a few blocks in order to get her medication that has lesser side-effects, then we'll do it. I really **very badly** want her off the Phenobarb. Does anyone know of any meds that she can be on that won't hurt her as far as development goes? And that doesn't have horrible side-effects?? I don't know much about Ketogenic (spelling?) dieting, but I'm willing to give it a try. We have problems when it comes to seeing her doctor, though. My husband works for the railroad and we only have one vehicle, so I'm vehicle-less when he goes to work. And he's usually gone for at least 36 hours at a time. Our new doctor is in Indianapolis. If we were to try the ketogenic diet, would we have to check in very often? Again, I don't know very much about this kind of thing. Honestly, and this is going to sound bad, but I'm not even sure what type of epilepsy she has. The doctors go so fast when they explain things that it's hard to retain a lot of it. :/ Back to her development...she turned 14 months old on December 28 and she can't even hold her own bottle. She's very slowly learning to use her hands, and she's starting to master rolling over. We have a physical therapist that has seen her twice so far, but she's going to start coming twice a month to our apartment. Is there anything at all anybody can suggest??? I don't want her to get too far behind, and I really don't want anything with bad side-effects. I can't lose my little princess, and I will fight to the death before I see that happen. Please help. :'(
Thanks for reading this novel,
~Heather



Thanks for reading this novel,
~Heather
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