What We Have Tried With Cole

Cole started by taking Phenobarbitol after his second seizure and hospitalization. It is one of the only choices for very small children. We stayed with that drug, on multiple doses, for a year. As parents, we did not like the side affects and he continued to have seizures. We started to taper with the consent of our neurologist to see if we could get to a point where Cole was more alert. During the very slow taper, Cole started to develop absence and drop seizures. We changed to Keppra in September of 2009. He was finally old enough to try it and I had been on Keppra longer than any other drug in my adult life. He is now on 4mL twice daily. We just increased his dose starting in February.

We were worried about Cole's development because he had not started using words. He just babbled a lot. We got his hearing tested and found that he has perfect hearing.(he can hear an airplane from inside the house) We had a speech therapist evaluate him and he is now enrolled in the Early Intervention Program with the school district. He has a Speech Therapist and a Teacher that each come to the house at least twice a month to work with him. He has made great progress since he started this treatment in January 2010. It is a great program at low cost to the parents. Some people even qualify to get these services for free. You can get information here if you live in Salt Lake County.

We tried an alternative therapy at the University of Utah hospital called neurofeedback. Insurance does not cover it and the treatment is very expensive. I knew that if medication didn't work for me, it was most likely not going to work for Cole. After 5 months of going to the hospital at least twice a week for neurofeedback, we stopped treatment. It was not working for Cole and was really expensive. This treatment has not been used a lot with small children who have seizures, but has been very successful with other ailments.

We tried homeopathic treatment for a short period of time with Cole. We did not see any results and due to having so many treatments at once, we discontinued it.

Cole's most recent EEG in February 2010 has shown more abnormalities and that his absence seizures are increasing. Cole is on the maximum dose of Keppra for a child his age. He does not have a lot of major side effects, but continues to have seizures. Brian and I feel that it has lowered his seizure threshold because he went for many months without a grand mal after being on Keppra. We have decided that our next step is to put Cole on the ketogenic diet. His neurologist concurs and has put multiple kids on this diet with good results. He is on a waiting list and will probably go into Primary for 4 days to start this diet sometime in April. It is going to take a huge commitment to do this, but anything is worth the possibility of not having seizures.