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5 month old having seizures- on Keppra
Tue, 07/17/2012 - 11:30Our daughter began having seizures about one month ago, and has never gone more than 8 days without having one since.
Ped-neuro tried phenobarbitol and ACTH- Baby still had seizures after a few days. She has had an MRI, 3 EEGS (one at home) and both blood and urine drawn. STILL no answers. We have been on Keppra for a week and this morning she had a seizure where all she did was stare and blink. She is being tapered off ACTH, and we are going to try administering vitamin b6 soon.
Its so hard to watch, as Rosie had no health issues up until one month ago and is not smiling like she used to. She also seems to have lost both head and neck control.
Does anyone have a story similar to mine and/or recommend any coping or medicinal advice?
Thanks!!
Comments
Re: 5 month old having seizures- on Keppra
Submitted by rosiesmom on Wed, 2012-07-18 - 15:04
Thanks, Raegan (or is it Raegan's mom)?
I have been writing down everything. Additionally, Rosie wil be starting OC next week. They are now tapering her off the Keppra and and ACTH, and we are trying Depacote.
Since many of her meds had to be put in a bottle with breast milk, she now refuses a bottle of anything from anyone.
Feel free to keep any suggestions coming my way.
How has your daughter been responding to medication?
Thanks, Raegan (or is it Raegan's mom)?
I have been writing down everything. Additionally, Rosie wil be starting OC next week. They are now tapering her off the Keppra and and ACTH, and we are trying Depacote.
Since many of her meds had to be put in a bottle with breast milk, she now refuses a bottle of anything from anyone.
Feel free to keep any suggestions coming my way.
How has your daughter been responding to medication?
Re: 5 month old having seizures- on Keppra
Submitted by RaeganGrace on Tue, 2012-07-17 - 21:26
First off let me just say I am sorry. It is a very difficult thing to observe. At least for me it was. I would say to just journal/document EVERYTHING and to video often. Videos have always helped our neuro when something new has shown up. Our daughter now 3 was dianosed with Infantile Spasms at 14 months and we did Sabril and ACTH toghether to control the seizures. Follow your "mommy gut" and ask as many questions as you need to. Start looking into possible Occupational Therapy if you are concerned with muscle loss. Early intervention is a huge support! Hugs to you momma!