Anyone with seizure experience in babies

[ams3651]

forgive me for skipping but this same thing started with my son was 18 months. His fever threshold is only 99 degrees for a seizure. After having more than one they will be more suseptable, after they have them with no fever its no longer febrile. Fine a pediatric neurologist, if you are near a childrens hospital go there. My son is now 6 1/2 and hasnt had one in over a year. they can grow out of them between 3 and 6. But his is Epilepsy, have cat scan, mri, eeg done. My son had no found reason for his seizures, the tests found nothing with is actually very normal. Try to keep fevers under control with ibuprophin, record when and where the seizuers occur till you can get to the Dr. If they dont last more than 3 minutes and he doesnt stop breathing he will be ok. If they last more than 3 minutes call for an ambulance. Ask the neuro for an emergency medication if that ever happens again. We have only had to use it twice but it will help if it should be too long. Please find a good pediatric neurologist asap childrens hospitals are usually good at getting you in quickly and pm me if you have ANY question I can answer. Stay calm and comfort him while its happening, dont put anything in his mouth and make sure theres nothing he can hurt himself on. Watch him carefully, my son has had seizures while walking.

Also about getting upset, my son has done that too. His first day of preschool he was so excited he had one after only 2 hours there.

 

[coloradochick]

Hi Lucky,

Unfortunately we have loads of experience with seizures. My son is 9 and has had them since 9 mnths of age. He was very sick with what I thought was RSV at 9mnths but could never get to see the doc just the PA. So coming home from the 6th PA visit after being told that he was fine, nothing wrong, we pull into our driveway, I say "We're home buddy" turn around and he's seizing, just on one side. We call 911 by the time they get to the house it's both sides. By the time they got him to Children's and started doing the Spinal tap, CAT scan, MRI, etc he had seized for over almost 2 hours. And it's just gotten worse from there. We've been testing for 8 years now, been to Dallas, Detroit, have had numerous (approx 20-25) week long stays in the hospital to moniter his seizures. He's had a Vegus Nerve Stimulator implanted that has done NOTHING, he had a Corpus Callusotomy a year ago August (cut the CC that connects the two sides of the brain) and that did NOTHING. He's currently on 3 medications. Has tried every other med out there. He is the 3-5% that have intractable (I think that the term) seizures. It's been a very heartbreaking and depressing road. We we're told this last April that there's nothing more they can do for Colt. I walked out of there in a trance. I've seen his heart rate get up to the 190's during a seizure. We've been told that his little body will give out if he continues to seize like he does. Now you know why I left the hospital numb in April. All I can say Lucky is be your daughters advocate. Don't let her be a guinea pig for the neurologists. Seizures are still very much unknown to even the best of these docs unless something jumps out at them on the scans. We're now waiting to see our 4th neurologist at Children's but have been told that since they all work together and they're pretty much the only game in town we won't here anything different. Make sure they run every test possible. Don't get discouraged. Here's praying that your daughter is one of the lucky ones that the docs see something right away and they can take these horrible, devilish, seizures away. You will definitely be in my thoughts. I wish you the best. Keep your head up as you travel down this road. Keep us posted and if you want to talk just holler.

Cara

eta: fevers, the starts of cold, hot weather, or just plain having a good day Colt will have them so we don't know when he'll go into one.

 

[Lucky Ducky]

Mommathea : That's what her doctor had been thinking, except it's really called a vagal episode or syndrome. They start to cry and the vagal nerve( which helps send messages to the lungs to breath) gets pinced for some reason, then you get a child who cannot breath and they tend to pass out. It really is beyond the child's control. It doesn't happen every time they cry, get scared or hurt. Only here and there. It helps to clap your hands loudly to startle them out of it. However, in my daughters case it is getting worse. We stop the vagaling quickly, she goes back to breathing just fine only to go limp before starting to have a seizure.

 

[Lucky Ducky]

I'm very sorry that anyone else has had similar experiences, however I now have lots of questions to start asking in the morning. One nice thing is that she has never had back to back episodes. They've generally been spaced out. Only three have actually involved seizures because the startling her to breath had worked just fine. This has only been going on since the end of September but I just can't imagine how it must feel to have had to deal with this for years. The hope had been that she would out grow this before she'd turn three but with this getting worse...I just don't know.

 

[coloradochick]

Maybe the Vegus Nerve Stimulator would work miracles for you. Since they already suspect that's nerve is involved. Hopefully it is something that quickly diagnosed. Wish you luck...

 

[HennysMom]

My son had febrile seizures from the time he was a baby until he was about 6.... they are scary. Also just because your baby stopped seizing by the time you got to the ER doesnt mean they still couldnt test and do an EEG - it would still pick up all true seizure activity for a few hours following the seizure.

My SIL specifically works with seizure patients and performs EEG's amoung many other tests - as a matter of fact, I went into seizures from a med I was on (Neurontin) and even though I didnt have one IN the ER (it was on the way in the ambulance) - they still tested me and it showed that my brain was okay - that it was medication induced - so YES...they can test your child still.

I'd be screaming mad that they did nothing too! If they still refuse the next time she has one - MAKE THEM - its not their money, its YOURS and an EEG is certainly warrented. If they still fuss - immediately tell them you want to talk to the Hospital Resident - and then the President of the Hospital and Clinical Care, Social Worker, etc... keep going until you get the answers you desire. They should be doing everything for that baby possible to give you answers. "I dont know" isnt an answer...neither is "I think it could be" I want difinitive proof nothing is wrong with my child's brain and nothing less than that!

to you and baby...

 

[chick_newbie]

Quote:
Have you ever had episodes with your sugar being that low before or after? Your DH had a normal fasting blood sugar, but yours was pretty low. I am a lab tech and see several people a month that come to the ER with low blood sugars and they are almost comatose. Has your DS gotten better with his sugars? (I can't spell today, must be time for bed!) Just curious as we see so many in the ER.

sred98: I really hope that you find the answers that you are looking for. I know how scarey it is to have these siezures happen. There is a young girl, about 1 to 2 yrs old, that has been having siezures since she was about 2 months old. It turns out that she has something really wrong, and I can't remember right off hand what it is, and all the meds really aren't helping her too much. Luckily they live across the parking lot from the hospital so they usually just grab her and run in with their stocking feet and blankets. Hope you will let us know what you find out also.

 

[peepsnbunnies]

I personally don't have any experience with seizures, but my niece has a 10 month old baby girl, Jaycee. When Jaycee was 2 months old, she was diagnosed with a very serious heart condition involving the valves of her heart. Shortly after that she started having seizures and episodes of stopping breathing. After many trips to multiple doctors and a childrens hospital where they finally diagnosed her with a severe allergy to the baby formula she was on. Once they changed the formula, she has had no more seizures. She is still in very serious condition until she has heart surgery. They do not want to do it until she is at least 3 years old, but the valves in her heart have narrowed more and they may not be able to wait. Unfortunately the younger she is when they do the surgery, the riskier it is for Jaycee.
I don't know if your doctors have thought about allergies, no one thought about it here with Jaycee, and it took a couple of months to figure it out. I hope for your sake it is something as simple as an allergy. You and your family are in my thought and prayers.

Lisa

 

[NurseELB]

Lucky Ducky,

I know you said your insurance won't pay for a Neurologist without a referral, BUT- how far away from a children's hospital do you live? Check your insurance policy, but if I'm thinking right, if you are more than 50 miles away from your local doctor, and happen to have an emergency, you can be seen. YOU NEED TO GO TO A CHILDREN's HOSPITAL ER, IMHO.

 

[Lucky Ducky]

We live 75 miles from her doctor and almost 200 miles from a children's hospital. Her doctor called a Pediatric Neuro and he's going to see her in the morning( Thursdays happen to be his only day off). He'll go ahead and do an EEG tomorrow. Then schedule a CT scan in El Paso afterwards. Her doctor did warn me that this Neuro is the best in southern NM but that some families don't get along with him very well. I could careless what his personality is like as long as he can tell me what's wrong and isn't cruel to my child. I guess there won't be any quick answers but we are on the road to finding out more. Unfortunately, my Mom's cousin and his youngest son have epilepsy, so it is in my family! I've got to call my Granny later and find out if there is anyone else prior to them that had it or maybe it came from his father's side. His mother is my Granny's sister. My mom doesn't remember anyone else having epilepsy but maybe my Granny knows. My MIL is going to take off of work tomorrow to go with me to the neuro. She'll help with asking questions to get the answers, she's an RN and the Director of Nursing at our tiny hospital. She was an administrator for a home health company before so she actually knew a lot about the Vagal Nerve Syndrome.