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7 month old with unknown seizure disorder

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: 7 month old with unknown seizure disorder

Hi,

I am so sorry you are having to go through this. Seizures in a child that young have to be just heart-breaking for you. There is some good information on the home website, located at http://www.epilepsy.com/info/family_infants.html, that might help you out. I don't know what type of doctor you are working with, but i would suggest that you try to get her in with an epileptologist ( a neuro who specializes in epilepsy), if at all possible.

I wish you the best of luck, and please keep us posted. There are lots of wonderful people here on teh site that can help with information and lots of care and support.

((( hugs ))),
Barbie

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"We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

Re: 7 month old with unknown seizure disorder

Oh I am so sorry about your baby. Make sure they check out her magnesium, calciam, vit d, sodium, blood sugar level, b6, b complex. Also look into omega three fatty acids too can work wonders for some. Talk to your doctor about it.

Lisa
http://health.groups.yahoo.com/group/epilepsyapproach/

Re: 7 month old with unknown seizure disorder

We experienced almost the exact same situation with our 5 year old about 7 months ago. He was a zombie with the phenobarbitol...they have since changed him to trileptal & that has been the key for us. After his first seizure he spent 5 days in the hospital just trying to stabilize his medication reactions. All his test came back normal, but he was a mess. Patience and strong advocacy,... what you are describing shouldn't be okay for you or your pediatrician. Keep working together, you will get your baby back! :) Good luck!

Re: Re: 7 month old with unknown seizure disorder

Well they have taken her off of the Dilatin and she is doing much better; still not herself by far, but a lot more alert. The neuro plans to send her home on Phenobarbitol and Topamax, then slowly ween her off of the Phenobarbitol. Her EEG was normal. They did find bacteria in her blood and they put her on antibiotics (not in her spinal fluid). Could this have anything to do with her seizures? How safe is the Topamax?

Re: Re: Re: 7 month old with unknown seizure disorder

Do you know how your baby got the bacteria in the blood? I hate phenobarbital, I was on it for 28 years or so.
As for topamax it gave me seizures, but does not mean it will happen to your baby. I dont know much about babies and topamax.
But as for the bacteria, yes it could have caused the seizures.

Take care
Lisa
http://health.groups.yahoo.com/group/epilepsyapproach/

Please contact me at

Please contact me at sugar_70427@yahoo.com my grandson is having this same problem. when he was 2 months old he had his first noticable seizure. He has not been able to hold his head up. He was so alert now at the age of 6 months he is like a new born perhap we can help each other I hope to here from you soon

Re: 7 month old with unknown seizure disorder

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

Re: Re: 7 month old with unknown seizure disorder

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

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

My daughter had her first seizure at 2 months. Phenabarbatol SUCKS. Ask your doctor about Mebarol, its a cousine of phenabarb. Melody , my daughter was a zombie on penabarb. Dilantin kills the gums and can grow rapid hair growth all over the body. I know , I've been dealing with this for 14 years. Vlporic Acid is very good, but not for children under 2 years, it can hurt their liver. Melody did take valporic acid at a 14 months old because she had grand mal and petitie mal seizures. They check their blood once a week. She went 5 weeks without a seizure. That was a miracle. Although she lived with epilepsy she still lived, grew normally, My daughters scituation is very different, children can live with seizures and have a very normal life. My daughter ended up totally disabled at the age of 2. It took me years to find out why she seized for 8 and a half hours. No one has ever seized that long, nor have they ever lived threw one that long. I found out 2 years ago that Melody was born with a cleff palate that was never caught. Thats what happened to her. It's a long story. But she smiles and laughs even though she can't move any part of body. Hang in there. If you need to talk you can email me at cherylkettle@cox.net.. God bless you and your child, I will pray for you both.

Re: 7 month old with unknown seizure disorder

My baby had her first seizure right after she turned one. We are in the process of tests still, but it is heartwrenching, not too mention terrifying. My baby was also taken by ambulance, we thought she was choking. They put her on Clobazam, and at first she was very sleepy, but now she seems back to normal. My baby was very sleepy after her first few seizures, and was absolutely not herself at all. I felt sad that there was something terribly wrong with her, and that I wanted my baby back. But the medication she is on is working for her fairly well for now, and she is happy again. She even is starting to pull herself to a stand and let go! Good luck!

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