Wednesday, February 2, 2011

Another issue?

Well we got some not very good news on Monday....well we're not sure if it's good news or bad news really. We saw his neurologist on Monday and she thinks Nick might be having infantile spasms. Apparently, his MRI showed that a certain structure in his brain is abnormal and it increases his chances of having seizures. I am quite frustrated about this, not because of what might be going on but because we were never told this. He had an MRI while he was in the NICU at Children's that showed them this back in August! Why are we just finding this out now? I wish we had known so we could have been watching for signs if he was having a seizure or something else going on. Let me explain why the doctor thinks he might be having them, sometimes Nick seems like he is startling by wailing his arms suddenly in the air, he jerks his arms a few times then gets a terrified look on his face and sometimes he will cry. I've heard of other babies with special needs having balance issues and I thought that maybe Nick just felt like he was falling so I kinda hold my hand firmly on his chest to let him know he's okay. He usually is okay afterwards but I never thought anything else could be going on....if only I knew. He has been doing this for probably at least two months. The doctor also explained that these are pretty serious type of seizure that is usually developmentally destructive. If he is having them he will immediately be put on meds and will be put on a special restrictive diet called a Ketogenic diet, which requires hospitalization initially to make sure he does okay on it.

Please pray for our little Nick.
It's so hard to imagine anything else going on but we know that God has his hand on our little one and is watching over him....


  1. Oh Laura that is so scary. Tons of prayers and good thoughts coming Nick's way!

    We too are getting so frustrated by getting information about Mason after the fact. I actually lost it a tiny bit with the Dr's the other day when I found out they had done the MRI because they thought May had suffered some brain damage from lack of oxygen (it turned out to be fine). I was so angry to only find out because I overheard them talking about it in report.

    Thank you so much for posting about Nikolas failing the hearing test too. It gives me a little hope that May will have at least some ability to hear. We are to be re-tested a month after we get discharged. Fingers crossed.

    Mason is slow to gain weight too. It's funny everyone thinks Mason is much bigger than he really is. When they see him in person they are shocked by how small he is. I guess our boy's big cheeks make them look larger than they are. :)

    So far he's absorbing his feedings well but he failed the OT eval with the Pigeon nipple so it's Gtube for us.

    Be well Nikolas. Mason and I are sending so much love!

  2. Thanks so much. Oh now I see PBJ is already friends!

  3. sharing...

  4. PS I've heard great things about the Ketogenic diet from the UCLA special ed school

  5. thanks... check out Signing (Rachel Coleman). The boys love it to complement what I teach him as it took us a while to get into it. The songs are so catchy and fun and it makes learning ASL beautiful. It's the only thing we watch (DVD) as we don't have TV and the presenter's like a 2nd mum to Reuben