Isabelle Has Infantile Spasms… Officially
Tessie and I just got home (mom is still at the hospital with Isabelle) so forgive me if this is short. It’s been a long day. But I wanted to give you a quick update.
As we had feared, the second neurologist confirmed after today’s long EEG that Isabelle does have infantile spasms, which I wrote about here: http://www.facebook.com/note.php?note_id=10150285379418351. (If you suspect somebody you know is having this type of seizures, check with a pediatrician about infantile spasms. Here’s more info: http://www.infantilespasmsinfo.org/) Since the first two courses of action didn’t do the job to clear them up, we move on to the big guns, the $100,000 drug I talked about here: http://www.facebook.com/note.php?note_id=10150311879968351) Infantile spasms by the way are also known as West syndrome. So now the kid has Down syndrome AND West syndrome. Down / West syndrome. Well… at least it sounds Country. That’s cool.
She is in the hospital right now to see how her body reacts to the drugs since they have some potentially nasty side effects. The drug could start working in as little as one day. Or it could take a couple of weeks. Regardless, she will be on the drug for the next 10 weeks. That means my wife and I will have to administer shots in her quads until around Christmas. Ugh. I’m not squeamish when it comes to needles. Heck, I have a ton of tattoos. But causing your child pain, even if it’s for her own good sucks.
Isabelle will be in the hospital for a few days, and the wife and I will be taking shifts to be with her. I’ll keep you updated as time (and my sleep deprived brain) allows.
As my good friend Alana Lynn reminded me this morning… don’t give up. Win the day!
R
