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My 13-mo. old son w/ infantile spasms
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Hi All,
I am a new user to this website. My son was diagnosed with infantile spasms at 10 mos. old. He is currently 13 1/2 mos. I was very shocked with his diagnosis because he had been a healthy, normal boy since birth. Plus, I had no complications during labor. He has met all of his milestones (ie. rolling, sitting up, standing) and can walk up to 10 steps without help. He was getting 7-9 episodes (each episode can consist of 1 sudden jerk to 40 jerks) daily. His neurologist recommended Sabril 500 mg, taking 1 tablet a day and slowly increasing to 2 1/4 tablet. I saw a decrease in his seizure episodes during the first two weeks, but now the frequency has climbed up to 5-6 episodes a day. He's been on Sabril for almost 2 months now. I'm a bit perplexed as to why his body is not responding to the medication.
I understand that ACTH is another option for treating infantile spasms. Has anyone's child experienced good results from this medication??? How about the ketogenic diet?
Any information would be helpful and appreciated. Thank you.
A Very Concerned No. Cal Mom
Recent Comments on this Discussion
Ya its sad to see infants attacked with these sort of things.And i hope for their early recovery they should be kept under perfect observation and medication for a period of time.I wish they would recover soon.
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Ronda, we live in the Northwest and have considered going to Childrens Hospital in Seattle. We have a 9 month old with IS and have been to OHSU and UCLA. What was your experience like in Seattle? Thanks, Pam
My daughter was born with a very big head. MRI & CT came out normal. But, She began her infantile spasms about 4 weeks ago at 14 weeks of age. She is on ACTH for about 3 weeks now and her spasms tapered off first two weeks but now she developed another kind of seizure. They still don't know the cause of her IS. We are tapering off her from the ACTH. She is so much more fusser and not able to sleep. She is getting her seizure every two to three hours at night, total of 6-7 a day. Do you know any good neurologist around the LA area? How was your experience tapering your child off the ACTH? What are your doctors recommending the next step should be? If your child developed another kind of seizure, did the doctor recommend another kind of medication specific for the seizure? Any information would be so helpful.
Thank you
. my son was born on sept 16, 04 and I started noticing leg spasms at about 1.5 months. he probably was seizing before that but i was unaware of it. he is my third child. Aidan has had an eeg which did not show any seizures but showed epileptic spikes during the eeg. he has had some blood work and urine tests and an mri- all turned out normal. this is a very scary time for us all and i am so glad i found your posting. i do not know anybody else with a similar situation. . aidan has what they are calling partial motor seizures. we do not see the neurologist until jan 6th so i don't know whether we have more testing done. aidan is on phenobarbital and it is controlling the seizures so far.
how did they disgnose infantile spasms? i also live in northern california. i am new to this and am just trying to figure out and would ike to find others to talk to. i live in el sobrante.(near richmond) where are you? you can email me at jennettegay@sbcglobal.net
YOU CAN TLAK TO ME PETE NEW YORK,SON 9 MONTHS WITH INFANTILE SPASMS,HE IS CURRENTLY ON ATCH FOR 2 WEEKS,THYE ARE TOTALLY GONE FOR THE TIME BEING.
pETE
Please find a doctor that will give ACTH. My 13 month old started IS at 6 1/2 months. He was having 8 episodes a day and then each day after the FIRST ACTH injection, the episodes decreased by 1/2...4 the next day, 2, then 1, then 1 every other day. He was having 2 per week when his blood pressure went up. The doc switched to Valproic Acid. During the weaning off of ACTH and on to Valproic Acid, he had is last episode. His first was May 12 this year and his last was June 15.
If your son is developing normally now, it is crucial to get the seizures under control.
I was considering the keto diet if the ACTH didn't work but the diet is so so time consuming and very undesireable(I have heard) to the child and you would have to stick to it for over a year. Use that as a third or fouth option.
Best wishes