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Baby with Epilepsy ... Mom worried about Meds and Delays

Christine - posted on 08/27/2012 ( 2 moms have responded )

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Hello,



My baby is 5 months old and was diagnosed with Epilepsy at 2 months. He is on Keppra and I am worried about everything from the medication he is on to the mood swings/depression/suicidal thoughts he may have in the future. Does anyone have any positive stories about living with Epilepsy? Are there any good medications and outcomes that can give me some hope?



Thanks....

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2 Comments

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Christine - posted on 08/27/2012

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Annette, It does help. I find that I am doing all the same things you are. We have Early Intervention involved, with their OT and PT. We also have our own PT and OT that the baby goes to too so we are getting care twice a week. We keep logs of seizures, meds, exercises, and health conditions like if he has a cold or something. There is so much going on it get really overwhelming. We wanted to have a big family and with my son I am not sure if we would be able to do that because of the extra attention we need to give him. It is hard becuase all I think of is how my baby isnt like other babies..... its hard seeing the other babies in his daycare progess and crawl while he cant do anything.....now they want to fit him for a helmet :( I just dont know if we are winning or losing at this battle.... I dont know what I should expect for him in his new little life. Thanks for the hug :)

Annette - posted on 08/27/2012

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HI Christine, first let me give you a big virtual hug! This is a journey with LOTS of ups and downs. My daughter had Infantile Spasms at 14 months and we did Sabril and ACTH. Once her seizures were under control we began the Early Intervention route. She was found to have been 8-10 months delayed with her speech. We began speech therapy once a week for a year. Just at the year mark we were released with her being at or above age appropriate. She began having seizures again in June and we are currently on Keppra/Depakote and Trileptal. I daily struggle as I fear the same things in regards to the delays and side effects. I must say Early Intervention is key!!! Our neuro is very pro active in referring us out and has told me that it is very likely she will have a learning/process delay as we approach school age. He said it will take extra effort on our part with homework and tutoring. She just turned 3 in June and for all intents and purpose is very active and outgoing we just have to make sure everyone is one the same page in regards to her epilepsy. Also, I keep a daily journal with her wake up time, meds time and any seizure or unusual activity and her bed time. It can seem redundnat but as much as I tell myself I'll remember I can't and God forbid something happened that I had to call 911 I figure better to have it written down then having to try to recall something in an emergency. I also make any side notes I need for the dr in regards to medication side effects we see iin her. Don't know if that helps or not.

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