So out has been over a week and we are still working on getting Aidens formula. And I have seen what not being on it is now doing to my sweet boy and it angers me! Spots all over his tummy that are red and sore and weeping, sore red butt, puking and just fussiness... Why is it such a problem to get this figured out? The insurance has denied it and even being double covered, the state won't pay for it unless he's on a feeding tube... Really what is the difference? You would think it would help prevent other health issues??? Uhhh it just angers me! Lol ok rant over for now...
I'm starting this blog to keep family and friends updated on our little man Aiden's progress through his fight with Ohtahara syndrome.
Wednesday, May 23, 2012
Thursday, May 17, 2012
General update 5/18
So this is going to be a long update lol it seems like a lot has happened and I keep slacking on updating this.
So our little squishy is officially a year old!!! I just cannot believe it! We had a great birthday at a local park. It was layed back, the kids were able to just run around playing with bubbles and having fun with no worries. I didn't have to worry about cleaning or feeling like it was too crowded. We ended up doing a pinata and the kids loved it ;p Aiden got to taste some of his cake ;p
So thank you to everyone who made the trip out to help us celebrate !!
Things have calmed down as far Aidens seizures. He is now officially on just one seizure med and the seizures have stopped. Wahoo!!! It was a little difficult there in the beginning as he was having up to 2 a day and a couple of them reached almost the point where we had to use the rescue med. Very scary but things have gotten better and we are back to being seizure free!
We also had a feeding appointment and they decided to thicken up his formula more, and to have us try a hypoallergenic formula. it was an AMAZING change! within less than a day he was a completely different boy he spent the whole day without crying, he was happy and playing, he didn't throw up at all, and his spots on his neck and stomach that had been there for 6+ months were going away. Well if it was only that easy lol so I started the steps to change everything with wic because this special formula cannot be bought over the counter and is $50 + a can. Well of course it cant just be that easy... none of the pharmacies carry it or can order it and I'm getting the run around ... and until we get it figured out he has to go back to his old formula and have already seen a regression in all the improvements we had seen. But I'm excited once we do get it all figured out and we get to see that happy boy again!!
I also had anther thing kind of cool happen.. I read a book regarding autism and vaccines and kind of had a realization that there may be a connection within our family regarding autism and Aidens os. So because he belongs to a study out of Boston Children's hospital regarding os I was able to call and talk about the connection with their geneticist. And she did say that autism and epilepsy do overlap and that i was not crazy to think there may be some connection within our family that effects the boys .. So I'm hoping with that that they may find the cause of Aidens os during their study and it can provide us with some answers.
I'm excited for the future and what is coming .... :p
So our little squishy is officially a year old!!! I just cannot believe it! We had a great birthday at a local park. It was layed back, the kids were able to just run around playing with bubbles and having fun with no worries. I didn't have to worry about cleaning or feeling like it was too crowded. We ended up doing a pinata and the kids loved it ;p Aiden got to taste some of his cake ;p
So thank you to everyone who made the trip out to help us celebrate !!
Things have calmed down as far Aidens seizures. He is now officially on just one seizure med and the seizures have stopped. Wahoo!!! It was a little difficult there in the beginning as he was having up to 2 a day and a couple of them reached almost the point where we had to use the rescue med. Very scary but things have gotten better and we are back to being seizure free!
We also had a feeding appointment and they decided to thicken up his formula more, and to have us try a hypoallergenic formula. it was an AMAZING change! within less than a day he was a completely different boy he spent the whole day without crying, he was happy and playing, he didn't throw up at all, and his spots on his neck and stomach that had been there for 6+ months were going away. Well if it was only that easy lol so I started the steps to change everything with wic because this special formula cannot be bought over the counter and is $50 + a can. Well of course it cant just be that easy... none of the pharmacies carry it or can order it and I'm getting the run around ... and until we get it figured out he has to go back to his old formula and have already seen a regression in all the improvements we had seen. But I'm excited once we do get it all figured out and we get to see that happy boy again!!
I also had anther thing kind of cool happen.. I read a book regarding autism and vaccines and kind of had a realization that there may be a connection within our family regarding autism and Aidens os. So because he belongs to a study out of Boston Children's hospital regarding os I was able to call and talk about the connection with their geneticist. And she did say that autism and epilepsy do overlap and that i was not crazy to think there may be some connection within our family that effects the boys .. So I'm hoping with that that they may find the cause of Aidens os during their study and it can provide us with some answers.
I'm excited for the future and what is coming .... :p
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