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New and desperate for answers
Wed, 07/11/2007 - 12:05Topic: Parents & Caregivers
Our son began to have noticable seizures when he turned 6 months old. Previous to the seizure activity, his muscle tone is his legs was higher and he was having developmental delays. I.e. not smiling, no eye contact. We have had an MRI, metabolic testing, and genetic testing. We have also had a 24 hour EEG. All of the tests have come back normal aside from his EEG's. The EEG's show seizure activity but the background is normal. He tried phenobarb and had a reaction to the med. He is currently on clonopin and topamax. He seemed to be doing great but recently, his seizure activity has increased again. He is now 9 months old. We are so desperate to find out why he is having the seizures and if they were causing his developmental delay. I have to hope that they will one day get under control and that his development will continue to prosper once they do. Has anyone had a similar experience? Does it get any easier? How often did you have to increase the medication, specifically topamax in my son's case. Did you notice a correlation to your babies development and the seizures? Are they ever seizure free on a medication?
I appreciate any and all feedback. Best wishes, Sam's mom
Comments
Re: Re: New and desperate for answers
Submitted by Baby Sam on Wed, 2007-07-11 - 14:30
Thank you for the information. I just got off of the phone with the dr. and we are going to increase his meds. I am new to this site, do you have any idea how to find Carters mom? I am happy to hear that your daughter is doing so well. Did they ever determine the cause for her seizures? Since we got Sam's seizures under control the first time, he development took off, it was amazing. He is 9 months but he is basically at a 6 month level. While his seizures were at the peak, he was not with us at all. With that said, he has come such a long way in the past 2 months. We are thrilled. Thank you again for your response. I am so happy to find this site. Sam's mom
Re: Re: Re: New and desperate for answers
Submitted by littlebug on Wed, 2007-07-11 - 15:37
my daughters seizures were caused because of toxic mold.We only lived in the house for one year but it was long enough.She was so healthy before that.i will see if I can find carters moms email,other wise the only other way to find her is to go through the post until you find one from her and contact her that way.I hope raising the meds help.My daughter was having a rough time starting back in feb.it lasted for two months.Once we got the meds back at the right dose she to bounce backed and even improved drasticly in school.Good luck and let me know how things go for you
Re: New and desperate for answers
Submitted by littlebug on Wed, 2007-07-11 - 12:35
I am so sorry your baby is having a hard time.My daughter was two when she started having seizures. My daughter did well for awhile when she was first put on meds.She went almost eight months without a seizure. All of her tests have always come out normal.This use to be very fustrating for me.But it was finally explained that you can have normal test results and still have seizures.If shes not having seizure activity at the time it wont show up.The good part of that is that we no some day she will out grow having seizures.Now as she is getting older she seems to have them more often.We are currently changing meds so hopefully she will do well agian.She did have some deveplopmental delays but they were fairly minor,She had a problem with fine motor skills and had to repeat kindergarden.Try to find Carters mom on this site.I think she will probably be alot of help for you. I wish you the best of luck