advice about treatment of my 7 month olds seizures

[bachara77]

I am adopting a 7 month old boy who has been diagnosed with epileptcy, cerebral palsey, blind, and tenativly as having touret and ms. I have had him since right after he was released from icu in April. He was born with no prenatal care to a 16 year old self confesed drug user, with a birth weight of 6lbs 12 oz. He was born 12-14-09, admitted to the hospital 2-14-10 not breathing and his heart had stopped. He was transfered to a larger hospital and placed in icu for 2 months. While on life support for his organs failing he had multiple strokes and began seizing.The doctors also said he had meth in his system and the mom admited to cupping his mouth and blowing the meth in his face. We are seing an eptologist and he is on 5 mls a day of phenobarb and 3 mls 2xs a day of kepre. He sleeps 20 or more hours a day and still can't roll over or support his own head well. He has had many eegs and been in the pemu for a 24 hour eeg that showed over 40 seizures an hour. Since I got him that has reduced to 3 or 4 five second long or less seizures an hour. He does have 3 or more episodes of uncontrolable arm lifting and yelling a day. These sessins last between 15 and 30 minutes each. I HAVE READ A LOT ABOUT THE PHENOBARB AND WONDER IF THERE IS A BETTER MED TO USE. I would love for him to be awake more and begin to learn and develop. At this point he is like a newborn. He is my only epileptic and I have no prior experience with a drug/abused infant.

[patty2584]

I'm an ER RN and have seen several children like this. Just love him! I am sad to hear and see what people can do to unborn and the living. Follow your MD's advise. Keep him on a schedule. Congratulations for the weight gain! Little guy has a hard long road ahead and so do you, I am glad you are there for him. With so many seizures an hour it is very scary probably for a doctor to be switching and changing medications around. I can certainly understand their hesitancy. Don't be afraid to ask the question to the doctor(s) though, and pass it by your pharmacist. Good luck, and thanks for being a mom!

[bachara77]

I forgot to mention he was 4 lbs under his birth weight when he was brought in an 2-14. The drs said it was failure to thrive. They tested his ability to suck and said there was nothing wrong other than lack of being fed. He is now 18 pounds and 22 inches long.