When Bridger first starting seizing he honestly looked like he was trying to poop. It seemed so natural yet it became repetitive and that is what soon worried me. I asked people's opinions and they said it just seemed like he was doing those cute baby reflexes. I thought maybe I was crazy! I brushed it off until I noticed his eyes. His eyes flickered to the right, I knew something was wrong, This all happened within like 48hrs!
We fortunately have a great family doctor who sent us quickly to Primary Children's. There we learned after hours of Bridger being hooked up to an EEG...
As parents we began to do our research. It was shocking what we discovered. Infantile Spasms is defined as "catastrophic childhood seizures." Try swallowing that! Not only that but most children will end up developmentally delayed and go on to have other problems with seizures regardless of their recovery with the Infantile Spasms. Ouch.
Talk about two terrified and infuriated parents!
How dare they not tell us!
Our poor baby...
Why didn't they explain this?
Why him...
How many problems will he have?
He was so perfect...
How can they be so confident?
...
Why?
Frightened as we were we took a leap of faith on the neurologists' confidence and went forth with Bridger's treatment on the steroids.
Bridger's seizures worsened within days after leaving the hospital. His body would literally crunch in half. He would have at least eight seizures and they would last anywhere from 5-20 minutes. By the end of the day he would be hysterical.
We called the neurologists and they only said: "Let the medication work into his system"
So we waited...then Bridger's left side stopped responding. He would no longer look or track to his left. His left hand became drastically weaker and he would no longer bear weight on his left foot.We panicked.
We spent a full day calling the neurologists. When they finally contacted us they stated that-this-was-normal!
Normal? Are-You-Crazy? This was not enough for us. We fought with them. So they increased his steroids and gave us another medication called phenobarbital. They hoped within another two weeks he would be seizure free.
Bridger's seizures did slowly became less severe and the amount decreased down to five a day. The steroids never did get rid of the seizures though. The doctors took another EEG to see if there were any other problems they could locate that could be the cause of the continuing seizures. They did not find anything.
Bridger tracks and looks to the left now but his hand is curling and he will not use it to hold onto things. Because the steroids did not stop the seizures the neurologists laid out several other options for us to chose from.
Fortunately I had done a lot of research since this started.
We chose to do a medication called Vigabatrin and combined it with the steroids. This is a risky medication but...as of July 1st 2013 at 1300 Bridger seizures stopped.
I think mommy's do know best.
This medication knocked Bridger out. He was like a zombie. He only laid there and moaned. When he did wake up a little bit he looked all "stoned" out. We later found out the Bridger was being WAY overdosed which explained the zombie like attributes.
Bridger made a lot of progress. He started smiling again and his left side loosened up. During this time our wonderful new doctor agreed that Bridger's left sided weakness was concerning and ordered us another MRI. They found a subdural hematoma that led to a lot more drama and frustration in our life with Primary Children's. The subdrual did go away which was all we really cared about in the end. He was still smiling and chatting up a storm (screaming really).
Unfortunately after only 2 1/2 months of seizure freedom Bridger's seizures returned. We were devastated to say the least. We went straight to the full dosage of phenobarbital, keppra, and started ACTH shots. Nothing seemed to stop the seizures. Bridger began to disappear from us again smiles and all.
Fortunately with a little bit of what I'd like to call a miracle and our amazing doctor we knocked Bridger out for a couple of days with phenobarbital. The doctor wanted to hospitalize us but we wanted to wait until Bridger woke up. When Bridger woke up he had the goofiest smile on his face. It was like he was saying "I'm baaaack!" It was truly a miracle.
Bridger has been seizure free since October 24th, 2013. He has been weaned off of Vigabatrin but is still on phenobarbital. I don't know if I will ever have the courage to take him off of it. The doctor says it is like his body has a phenobarbital deficiency.
Now for Bridger's progress. He has come so far. You can't tell that he has a left sided weakness anymore. He eats real food, he thinks he is too big for a bottle and will only drink out of straws or big kid cups. A couple days before his first birthday he learned how to crawl and he just recently started walking. He refuses to actually walk though because crawling is apparently much easier. He rarely cries but whines a lot. He is at the level of a 6 month old with speech but I know someday he will say mama and dada and I LOVE YOU. I think we're getting really close to kisses now too. Until then he'll just have to cry through all of mommy's kisses. He loves to "flick" things (handles, other kids binkies, zippers, dishwasher lids...) and he LOVES to play in the water.
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| Just flicking the dishwasher lid |
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| He won't even swim in the floaty anymore, he is TOO big for that! |
This is Bridger's story with many chapters to share. He's a miracle and a handful. He can drive this mommy crazy but I wouldn't have it any other way. I'd take this Bridger over the bloated and grumpy Bridger any day!
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