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Any reassuring stories? 6 month old with complex partial seizures

My 6 month old grandaughter has been having seizures since 2-3 months of age. They have not found a reason and are continuing to do testing and medication adjustments. She also has hypotonia. While on Trileptal and Phenobarb and lots of Ativan recently to control clusters of seizures she has been asleep most of the time (for 2 months!). They have just discovered (video EEG and PH probe) that a lot of what we thought was seizure activity is actually reflux. As a result we hope to drop the Phenobarb and will not be using the Ativan. We hope she will wake up and start moving along in her developement. Please share any hopeful stories I can share with my daughter and son in law. We are aware of all of the scary possibilities and my daughter really needs some light into this nightmare. Thank you for your thoughts. Pam

Comments

Re: Any reassuring stories? 6 month old with complex partial sei

Have they done any metabolic testing? Sometimes the reflux, hypotonic state and seizures can be caused by metabolic diseases or conditions. We are doing that with my son right now. If I were the parent of this child, I would ask the dr to get organic acid levels (blood and urine) done and read by a metabloic genetics dr. Good luck-hope it's just reflux!

Re: Re: Any reassuring stories? 6 month old with complex partial

Jolieweng...Thanks for your reply. How old is your son? We have ruled out reflux. Her seizures are very focal in the left temporal lobe and she is soon to be worked up to see if she is a surgical candidate. She has had all of the metabolic testing done including the organic acid levels and all is normal so far. The metabolic specialists don't think her problem is metabolic. (she has seen two so far). Has anyone had experience with a baby with this type of focal seizures? Or with surgery on a baby? Thanks again. Pam

Re: Re: Re: Any reassuring stories? 6 month old with complex par

Hi- we have a 7 month old with partial complex seizures since @ 1 week old. We were hopeful that it was reflux, but after the metabolic work up, spinal tap and countless EEG's, MRI's and PET scans, they still can't find out what is wrong with our Maggie. They are talking surgery, but we are afraid to let them operate on something no one quite knows what it is yet...Good luck. If you'd like to talk further, my e-mail address is tipye2@gmail.com. Also, not sure what area you live in, but we go to Johns Hopkins in Baltimore.

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