Infantile Spasms- Epilepsy Awareness

I wanted to write a post about the type of Epilepsy Maddie was diagnosed with. I know you're thinking this sounds like a very boring post, and you still may feel that way at the end. But I urge you to stick with me, you could be a big help to someone by learning some info about Infantile Spasms.

First, let me say that I absolutely hate that they are called spasms, because that does not relate to how bad these seizures are for children. Spasms sound harmless and IS (Infantile Spasms) are everything but, harmless. They get the spasms name because they appear to be a body spasm. Maddie's IS represented itself by her arms flying above her head and her eyes floating up with each spasm. These spasms happen in clusters, that last anywhere from 2-3 minutes. So they can have close to a hundred seizures in this one cluster. While Maddie was in the hospital she had a cluster that lasted 9 minutes, I can't count how many seizures she had it that one set.

When she first started the movements it looked like a motor reflex. It wasn't her violently shaking, it was very suttle. I noticed that they would happen when she was tired, or waking up from a nap. As the days went on, the spasms were more profound and she would cry and grunt while having them. At this point we were already in the hospital.

The worst part of IS is the awful affects it can have on their brain. Infantile spasm are defined as a, catastrophic type of Epilepsy. Not just a little "spasm" of the brain. IS usually starts to show it's ugly face around 4-8 months. Madilyn was 5 1/2 months old. 

They confirmed her diagnosis of IS by doing an EEG, which measures the brain frequencies. Her EEG showed a pattern that told them she did have IS. When were told the news we had no clue what this was. They gave us information on it and we did our own research as well. Not until a day later did we also get her TSC diagnosis.

These are some of the facts we were given when she was diagnosed. 

Our daughter would more than likely be challenged with normal milestones. Only 1/4 of children with IS will have a "reasonably favorable outcome". The other 3/4 are expected to have severe delays. We heard the word mental retardation numerous times during her hospital stay. (I hate that word and now have witnessed how hurtful it can be.) The estimated mortality rate by age 3 was 6%-33%. 

Those are just a few of the things we heard. 

The reason I am even going over all this is because many times IS can go undiagnosed, because it's very rare. We had a pediatrician not diagnose Maddie because he didn't even think about IS. He sent me home with Maddie saying he would refer her to a neurologist but he didn't think it was anything. Thankfully, I trusted my gut and we took her to a children's hospital. The quicker these seizures are under control, the better. Maddie had her seizures under control within 10 days of the first spasm. This is not always the case, there are some who never get full control of the seizures. We were very fortunate to have a Neuroloigst who diagnosed her quickly and helped us pick out a treatment plan. Because she also has TSC, our best option was Sabril. Unfortunately, this medicine also has a side effect of possible peripheral vision loss. Our options were small and we had to be quick. Every spasms she had was taking away something from her. 

Awareness is needed for Infantile spasms. If a doctor can't even see the possibility of these very damaging seizures, how should a parent know?! I hope you will take the time to make yourself aware of this very rare and damaging type of seizure. You could be the key to someone's baby getting diagnosed quickly. 

For those of you who stuck around, thank you. I know it's not an exciting topic, but it's one that means a lot to our family. Don't forget to wear your purple tomorrow to show your support for those fighting with all types of Epilepsy.