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New here....parent to child with uncontrollable seizures.

Hi y'all. I'm Katie. My 5 year old Connor, has a severe brain malformation and has uncontrollable seizures. He has numerous myoclonics, a tonics, and absence everyday. He has regressed very much developmentally in the past few years. he is currently on keppra, topamax, vimpat, and onfi. I'd love to hear any and all stories of parents in similar situations. Thank you!!!

Comments

Poor kid poor you, well i may get flammed for saying this but here goes, my Neuro the visit before last did say to me that if you have a seizure on a medication then that medication is no good, Vimpat is still on trial and they give a 5 year old it no no no, goodluck and watch your boys diet

Hi katie. Have you investigated a ketogenic diet. A lot of work but may be the answer. Also, just curious what is his brain malformation called. If you don't mind me asking.
Matt
dad to sam (age 11)
left temp epilepsy
retro flexed odontoid
chiari malformation

Katie, I have an 8 year old boy with uncontrollable seizures - 4 meds and he still has seizures everyday.  We tried the keto diet, helped some but caused other problems.  He is no longer on the diet.  All I can tell you is to love him and treat him like any other child.  He is going to have seizures but don't let that stop your life and his life.  Send him to school, take him on trips, go out to dinner.  I promise you that type of therapy helps.  You will see!

Best wishes and God bless.

Angie

 

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