Update on Seattle appointment

Ok, so the appointment went pretty well, I think. The drive up there was good and we found it with no problems and with this being the first time I'd ever driven to Seattle on my own, this was a huge accomplishment! So we went in thinking they were just going to talk to us about the ketogeninc diet and really got much more than that. The neurologist went through everything with me from his birth on and unfortunately, because he is on the steroids right now, we would have to wait until he is fully off them before we can even talk about the diet. So in the next 2 weeks we will work on slowly getting him weaned off the steroids. Then she mentioned another drug that I had heard about, but that our neurologist kind of dismissed. The Seattle neurologist said she wants him to do a trial with this drug before the diet; in her opinion it's had good results and if we can stop his seizures, or decrease them dramatically, with the drug its worth the try. The down side with this drug is it can cause severe problems with his eyes. While on the drug he has to have eye appointments every 3 months, and it can also cause problems with the brain, so he would have to be monitored by MRIs. But at this point, she said if we can get the drug to work the risks are worth it and with increased seizures eye problems are also a risk, so either way we are faced with this problem. The most important thing about this neurologist is she took time to explain what she was doing while examining Aiden and had an optimistic attitude that there are other things to try and do to increase his quality of life. This was such a relief. Our neurologist now lacks that attitude and I believe so much can come from a positive attitude. One of the other things she mentioned was that it appeared that Aiden was bilateral which basically means one side of his body seems to be more stiff and affected than the other, and that means, or could indicate, that he has a malformation on his brain which could be the cause of the syndrome. And, again, its horrible to wish for something this horrible but if that is the case, he may, in the future, be a candidate for a hemispiherectomy; in some kids this can stop seizures and allow for some development, so I kind of hope this may someday be an option.

So much is happening: we now have appointments to be evaluated for therapies, an appointment for evaluation for the g-tube, and I got a couple referrals from the Seattle neurologist for a good neurologist at OHSU. After this last appointment with his neurologist, she basically screwed up his meds and if I hadn't been paying attention he would be getting double the dose he should be getting, so it's time to look for a new neurologist.

Aiden is doing really well since the 16th he has been eating all on his own, and has been acting like a normal baby! And we are down to 8-10 seizures a day which sounds like a lot but from the over 30 a day it is nice and I look forward to getting that number down even farther! And I dream of having him be seizure free!

The last couple days have been a little rough the steroid he's on has started making him irritable so he spends a lot of the day either just wanting to eat constantly, and just crying... it breaks my heart and so the last couple days I have spent holding him and trying to comfort him, I now know what it would be like to have a baby with colic. I just have to remind myself of the times where he didn't cry at all.

One of the other things were waiting for is to find out if our insurance will cover genetic testing that they are now offering in Chicago. Although it wont change anything it will let us know if our kids carry a gene or not....

So here's to another day and praying for everything to start fitting into place.

Thank you everyone for all the positive thoughts and prayers!