Today I'm honored to have my friend, Nicole, guest-posting about her son, Ethan, and their experience with Infantile Spasms. This post was a year in coming, but totally worth the wait, especially if the information she provides here can help even one family through this devastating condition. I'd like to add, here at the beginning, that one excellent resource for information and support for Infantile Spasms can be found at the following link: http://www.infantilespasms.com/forum/
Thank you SO much, Nicole, for sharing your story and your beautiful little boy!
My name is Nicole, and five years ago we had a little boy who we named Ethan. He was born with an extra little love as we called it, also known as Trisomy 21, although that is not the reason for my post. When he was 11 months old he was diagnosed with Infantile spasms, a form of epilepsy. I am not going to write all the facts, but give you our story because just in the 4 years Ethan was diagnosed things have changed from what I understand. I just want someone to know, if they happen to read this, that it is a hard road, but know that it is not all as ugly as the doctors may say and that there are other families out there who were or are in your shoes. There are great resources - the Epilepsy Foundation, for one, and a few Yahoo groups as well.
To those of you not familiar with this, please do us one favor and never, ever give up on a child diagnosed with IS. When you read about IS on the Internet it is not pretty, the outlook is ugly and grim. We would not give up and neither did Ethan.
We needed to start medications quickly to TRY and control these monsters. In Ethan's case, they were quick head nods that we first thought were just due to his low tone. He would have 3-10 at a time, which could last for a while. And all during this time, they were stunting the achievement of his milestones.
We immediately started medications, and if you are not familiar with seizure medications, let me tell you that what they can do to a child's body is unbelievable. Medication after medication, we would see the seizures worsen and Ethan be less and less himself and very out of it. Finally, after 3 months of failed medications, we went to ACTH therapy which is a steroid injection we had to give him every day in the leg. This particular therapy made Ethan very bloated, and he would only sleep 4 hours a day. However, Ethan would still smile and laugh, which made this so much easier to get through. We thought at about week 3 we had seizure control - we hadn't seen any, then all of sudden they came back and with a vengeance.
We immediately had to stop the ACTH and go to what doctors were calling our last hope, the ketogenic diet. No joke, with this diet you have to measure everything to the gram. All fats. I couldn't believe what I was putting in my kid. The amount of mayonnaise, oil and butter was just disgusting, but you have to do what you hope works. While on the diet, Ethan got lipid pneumonia due to the oil getting into his lungs. Seizure control was better, but not fully controlled. After about 4 months on the diet, Ethan was becoming very sick. Throwing up. Blood work was so abnormal that after his third hospital admission we only had one choice but to take him off the diet, the one thing which seemed to be helping. I remember crying in the neurologist's arms, knowing this was our last hope, asking what is going to happen to him now? There has to be a miracle drug for our little guy.
Our neurologist told us if we didn't get the infantile spasms under control by age 2 our outlook wasn't good. But we were not giving up! After stopping the diet Ethan was put on Depakote which seemed to help, but we never had full seizure control. We had some bad days and we added Banzel to the mix. For us, this seems to be the right mix. Ethan was just having tiny little head nods as he was falling asleep, which is common with kids with IS. We would take that.
His EEG was showing some activity but no seizures - just activity that happens before a seizure and no hypsaarthmia which is Infantile spasms.
We can say today we have not seen anything at all since March of 2012.
Ethan will be 5 in a few weeks. He just started walking, and yes, he may be well-behind his peers, but Ethan has taught us so much these last five years.
One of our favorite quotes is, "a journey of a thousand miles began with a single step." That's our Ethan! He will get there and it will be in Ethan time and style. Nothing better than that to us.
Please enjoy this video - it is our buddy walk video for this year.