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7 month old with unknown seizure disorder
Tue, 12/27/2005 - 22:11Topic: Parents & Caregivers
Hi, I am looking for any advice out there. My 7 month old daughter had a full body seizure approx 1 month ago. She was taken to the children's hospital via ambulance. The seizure lasted for 19 mins, valium was given to stop it. She was admitted to the hospital. Her CT, spinal tap, EEG and blood work were all normal. She was released and didn't have another seizure for 2 weeks. The 2nd, 3rd and 4th seizures were isolated to either her right or left side of her body and her neck and head. She was sent home after the 3rd seizure on Phenobarbitol and her dosage was increased after the 4th seizure. She had a 5th seizure on Monday that lasted for over 2 hrs. She was hospitalized and she had a normal MRI and we are still waiting for the results from the EEG. She is on Phenobarbitol, Dilatin and a third drug that I am not sure of the name of. She can't hold up her head and she can't even look at me. I feel like I have lost my baby and I am not sure what to do to help her. Thank you
Comments
Re: Re: 7 month old with unknown seizure disorder
Submitted by jennifer28 on Thu, 2006-01-26 - 20:05
I read your site and Ithought I would know what to say since my daughter stated the same way at 3 months.At first they did all the same tests EEGs CTs spinal EKG and every thing was normal They said ''every child can have 1 unexplained seizure''.When Icame back 1 week later they tried her on phenebarbatol, she is now almost 3 and they are in between diagnoses I just try to take a day at atime and love her for who she is. Boston's childrens hospital has been great for 2nd opions! I first saw Dr. Janet Soul (neo-natel) she was great next se referred us to Dr. Blaise Bougise he is wonderful distinguishing different types of epilepsys I wish you all the best and just hang in there!
Re: 7 month old with unknown seizure disorder
Submitted by Tommysmom on Fri, 2006-01-27 - 10:37
I know exactly what you are going through! I have a 7 month old boy who was diagonosed with infantile spasms at 5 mo. His seizures seem a little different than your daughters but as one Mom to another I understand your feeling of helplessness. My son, Tommy was first put on ACTH for almost 2 months. It made him very cranky and he didn't sleep well. He also gained alot of weight. He is now on Topamax and Kolonopin. He is still not seizure free but his disposition seems better. The doctors do not know why Tommy is seizing. All of his test also came back normal. If you have more questions about the Topamax feel free to email me at zeets30@aol.com. Good luck to you and your daughter. - Patti
Re: 7 month old with unknown seizure disorder
Submitted by rootbeergirl16 on Sat, 2005-12-31 - 00:12
My heart so very much goes out to you. I am so very soory for what you are going thru. I think you might want to seek a second opinion on the medications your little sweet angel is on. I know that for my daughter whom is 9 I sought out three different opinions and finally found a doctor with whom i was comfortable with and was willing to treat my child as a viable human and not a disese. You also might want to talk to you pharmasist and double check that you are not over medicating. I am wishing you and your family the best and there are so very many people here that will help support you and offer a shoulder to lean on. Always Pam