Thursday, June 11, 2009

Ian Update

I think it has been a while since I have really updated on Ian's progress. I know I mention things here & there but I wanted to post something just about him & what he has accomplished.

As many of you know, he got sick w/ the flu back in January. About 3 hrs after we had put him to bed, he woke up & was having difficulty breathing. 15 minutes after that, he started to seize which ended in an hour long ordeal, a trip to the hossy in an ambulance, & a very long night to later find out it was the flu along w/ a febrile seizure. They said he had a complex febrile seizure. He was allowed to come back home 2 days later on Saturday. The following Tuesday he had another seizure but it only lasted 3 minutes. We were going to the pediatrician anyway so we went about our morning & told her what happened.

Apparently it isn't abnormal to have another seizure w/i the same illness. The difference is that Ian became very lethargic after the 2nd one & was no longer able to guide food to his mouth, sit up or roll over, things he had been doing for quite some time. I called the pedi the next day & she reassured me that it was the flu that was kicking his ass.

Long story short, I insisted that Todd take him to the ER once again but this time to one of the best children's hossies in the nation. They admitted him IMMEDIATELY & 2 days later a verdict came in. They diagnosed him by exclusion (meaning they couldn't find anything else wrong w/ him) with post-infectious cerebellitis. They ruled this through a series of tests (CT scan, MRI, spinal tap & x-rays) which were checking for meningitis, encephalitis, epilepsy, etc. Everything came back amazingly normal which gave us comfort to know there were no long term consequences.

Basically his immune system attacked his brain. His motor skills were lost, all of them. His muscle tone was "floppy" meaning they didn't have any power to sit up or roll over or anything else. Not only that, he would try to move his body & rather than it doing what his brain was telling it to do, that part would move spastically. Having this happen to a 9.5 mth old is VERY rare, so rare that his attending hadn't seen a baby w/ this since her residency. They couldn't even tell us what to expect or how long his recovery would be. Not only that, there isn't much out there on the net that gave us anything to go off of.

Instead, he was referred to Early Childhood Intervention b/c he was now officially developmentally delayed. Luckily, Ian was recovering quicker than any of us expected. It has been a long road.

Let's celebrate his accomplishments! My sweet boy (anyone that knows him will say he has the best disposition of the 3 babies, so kind & sweet, always w/ a smile even when he was his sickest) is now able to crawl on his hands & knees, sit from laying, pull to standing on anything, & has been working hard to stand on his own. He is still a bit shaky when he is standing, a neurological side effect that he should outgrow. He was in shoes for 2 mths straight to help him w/ balance & stability & has now been given the go ahead to not wear shoes in order to strengthen his feet/ankles. We are hoping to avoid braces BUT if he needs them, we have no problem getting them.

He has made up much of the ground that he has lost. He is vocalizing more & trying to mimic sounds & actions. He can now feed himself quite well which is a blessing in itself b/c it was very hard to see the girls becoming so advanced & leaving him behind. This boy has really been to hell & back. I couldn't imagine thinking one thing like moving my arm & then it doing something completely different.

If it hadn't been for the wonderful team of neurologists that were pouring over his file after hours & calling us from home w/ their thoughts on what was going on, we may have had a much worse situation on our hands. All it took was 2 rounds of steroids to stop the antibodies from attacking his brain. What a simple solution for such a complex problem.

I'm putting some links that explain further what Ian went through. It is expected that he will make a full recovery & be right on track developmentally. I want to remind people of what we went through & let them know that you have to follow your instinct. I *KNEW* something was wrong w/ my little boy. I agonized over it for 5 days. I wish I hadn't waited so long but I thought that our pedi knew what she was talking about. Turns out that she never had a patient that experienced post infectious cerebellitis (or post infectious ataxia). We don't blame her & still go to her. She even asked me to keep a log of his developments. She now has a copy.

Post Infectious Ataxia
Febrile Seizures
Types of Febrile Seizures

I hope this will give others the opportunity to be introduced to cerebellitis b/c God knows I knew nothing about it, not even febrile seizures. Give your loved ones an extra kiss & squeeze tonight.

Pictures as always!

Ian chillin' out, mommy's view.

Gabi & her ever present cheesy smile.

Sofi from mommy's point of view.

1 comment:

Karen said...

go Ian! Thank you for the update. He always looks so sweet in his pictures.