Epilepsy Families: Aiden's Journey

Family number FOUR in our lovely series! I hope you are learning something. Every person who deals with Epilepsy does so, differently. Why, you ask? Because seizures affect everyone differently.

This is Bridget... Her son Aiden has been through a lot of what Renn has gone through, but with much worse situations. Intractable Epilepsy means that most (if any at all) AEDs will not work to control seizure activity. Generalized Epilepsy means that the seizure activity is stemming from both hemispheres of the brain, making surgery impossible.

Aiden, has both.

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Christmas 2012 was such an awesome time for us. Our twins where healthy happy 4 year olds enjoying all their gifts from Santa. Aiden had difficulty with speech and was placed in speech therapy when he was 3. Otherwise, he was a happy, go lucky kid. Then January 2013, our lives changed.

My parents are our caregivers while we work, and when I picked him up they had told me that they thought he had a small seizure. I thought maybe he had a febrile seizure because he had a few in the past, but nothing for 2 years. But he didn't have a fever this time. I took him home and that evening he had one on me. He slumped over, had facial twitching, and drooling. My husband and I decided to take him to the ER. His blood work was negative, and head CT negative. They told us to take him home and just watch him, and we would need a Neurology referral. He had a few more the next day, so we took him to a larger hospital 45 minutes away. Basically, the same thing, but we got a Neurology appointment for that Monday.

The Neurologist did an EEG and it definitely showed seizure activity. He was diagnosed with Intractable Generalized Epilepsy. He was started on Keppra, but needed to be increased several times without success, so she placed him on Lamictal, then Onfi. Nothing seemed to work. 

We kept dealing with med changes for months, but the seizures kept getting worse. He started having Drop Seizures (sudden fall to the ground). He was having 10-15 a day in addition to the other ones. It was so bad, we got a protective helmet because he would fall from a standing position without any warning. 

Aiden was placed in the hospital in June. We spent 2 very long weeks there. Trying Dilantin and Vimpat, but it wasn't helping to much. They started Zarontin. They finally got him to a level they felt comfortable for discharge. When we were discharged, I just sat in cried, because this was not the same little boy. He walked around like a zombie. His speech was worse. I didn't know how we were going to get through this. 

Months went by with some improvement (only 3-5 seizures a day) but then the seizures started increasing again in September. He was placed in the hospital again. By this time he was in Preschool and his teacher was so awesome! She came to cheer him up in the hospital. The ended up started him on the dreaded Depakote. I can remember him having a seizure in the wheelchair when he was getting discharged. They told us it would take time to get the Depakote built up.

The next couple of months, meds were increased and increased to try to keep his seizures under control. He was doing the best he could in school. My husband and I decided we needed a second opinion. This was our little boy and we need to make sure there is nothing else that can be done. Plus, Aiden's poor twin sister was spending a lot of time with Grammy & Poppy between appointments and hospitalizations. I'm so fortunate to have such wonderful parents. 

Cleveland Cavilers visit Aiden!

We received an appointment with Cleveland Clinic. They scheduled us for a 5 day EEG monitored admission. First thing they said is, "He is on too many meds. It may take time but we need to find the right ones and wean off some of the others." 

They decided to try to wean the Keppra. They started by cutting it in half, and he had the worst seizure I've seen, and they said it was probably the quick change. The doctors were awesome though. He was having a lot of activity in sleep so they put him on Valium at bedtime. We felt good upon discharge because we had a great plan, and he was referred to genetics as well. 

By our follow up, he was completely off the Keppra, and seizure activity was decreased. After genetic testing, they discovered he had "XYY syndrome" which could be some if the reasoning for his developmental delays. Plus he had a missing piece of DNA. So, my husband and I recently had genetic testing to see if either of us had the same missing piece. If so, they said it probably doesn't have a link to Epilepsy because my husband and I are fine. Turns out my husband did. So, we have an appointment to discuss where we go from there. They are trying to figure out why he had Epilepsy. 

Things were going pretty well, but he was still having some seizures. Our local neurologist had a 24 hr EEG scheduled for February 2014. It turned into 5 days. He was having 20-30 seizures in his sleep without any external symptoms, so we couldn't even tell. He was started on Banzel. I thought, Great, here we go again. I immediately called Cleveland and they said it was okay.  

I couldn't believe the difference the Depakote increases and Banzel increases have made in Aiden. He has not had any daytime seizure and only occasionally does he have ones in that bring him out of sleep. He is talking more, speaking sentences, more words are understandable, and his coordination is better.   

We just had a follow up this past Monday, in Cleveland, and we are going to try and wean off 2 of his meds since he has been on them for a while. Because they have seen the most improvement with Depakote and Banzel, we are leaving those along with the Valium at bedtime. And, since he has been on Zarontin and Droskote for so long, she wonders if they are really having much impact. She said the only way we will know is if we try. We are starting with Onfi. It will take 8 weeks to wean him off, and if it goes well, we will try Zarontin. Their goal is a couple meds at a time, and eventually to get him off all these meds. I'm nervous but willing to try. Say a prayer that it works.