Anyone with seizure experience in babies

[Lucky Ducky]

Last night was one of the absolute worst of my life. Before I get to that though I'll add some background info. The week after my youngest daughter's 1st birthday she had a seizure. About two hours before she felt a little warm and was fussing, so I checked her temp (99.3) and went ahead and gave her some Motrin, just in case. She had been throwing up in the night and morning, so I figured her stomach was probably crampy feeling and the Motrin would help. Well, later my oldest daughter wouldn't give her a toy and the next thing we know the baby is laying in the floor blue faced, drooling, convulsing and making funny noises. I laid her on her side and it was over in less than 1 minute. I rushed her to th e ER, only to be told by the Dr. that I must be wrong there was absolutely no way she had a seizure. I am not an idiot. I told him exactly what had happened and if that didn't sound like a seizure then what was it. He back up his thinking and said it did sound like one. They could find anything wrong with her and we went home. I took her to her doctor the next day and he said that maybe it was a febrile seizure but that those usually involve a very high fever( 104 or higher). We talk and figured it was probably a fluke but would keep a look out for any more. The following week she had another episode without the twitching after not being allowed to play in her granny's purse. Back to the doctor we go and now he thinks she had a Vagal episode in which she cries and then is unable to breath and the Vagal nerve gets pinched and viola fainting baby.This differs from a child who holds her breath until they faint over not getting what they want in that children with this have no control over when it will happen. We are supposed to catch it early and make lots of loud noises to startle her and activate her breathing again. She should grow out of that before she turn 3 years old. However, we ended up in the ER again last night because she had one of her episodes and we get her back to breathing and immediately after she went limp, then stiffened and had a grad mal seizure that lasted for almost 10 minutes. It was all over just before we got to the ER, except for this time she didn't just fall asleep and bounce back out of it. She seemed unable to move her arms and legs for more than 30 minutes! She screamed and her heart was racing. She would start to calm down only to start screaming again as if she was in massive pain. The ran what test they could, we live in a small town and the hospital here is tiny. They found nothing. All they could tell me is that it sounds like it is getting worse and to get her doctor to refer her to a pediatric nurologist(I know I spelled that wrong). Her doctor can't get her in today so we have an appt. to take her in first thing in the morning. I'm scared to death that something is really wrong. She 's fine this morning but... who knows? I just was wanting to see if anyone here had ever had a similar experience and any info that they could share. Did I mention that this scares my to death? It scares her older sister even more, sne's 7 years old and when it happens she cries hysterically. She's afraid her sister is going to die! Thanks for listening! Any help is appreciated.

 

[mom'sfolly]

I'm so sorry you are going through this. Reading your post gave me goosebumps. I don't know anything about seizures in babies, but I wanted to let you know that someone is "listening". I think the pediatric neurologist is your best bet to find out the cause. My neighbor's son has a seizure disorder, and they fight to keep it managed. He is just five and has been having them for at least 3 years, but he is supposed to grow out of them.

Thinking of you, and yours..........

 

[KatyTheChickenLady]

Oh honey, I have no seizure advice for you. But I will say this; get in your car and go straight to a big city hospital - no matter what the cost. If you gotta sleep in the car then sleep in the car, but get that baby to a doctor who knows what is going on. We will all be worrying about you so keep us posted.

 

[spookyevilone]

I do. My cousin had them as an infant - she had a seizure disorder. You need to get her to a hospital that can do a lumbar puncture (spinal tap). It could be anything from B6 deficiency to a misfire in brain development. It sounds like they're getting worse, so run don't walk to a neuro. Also be aware - they may not find anything. This doesn't mean there's anything wrong, it just means the problem's too small to see on an MRI. They can give antispazmodics, which should help.

Document the seizures. What time did they happen, what triggered them or what happened right before them, what symptoms did she have, what were the after-effects. The neuro will want that info.

Good luck. Poor baby

-Spooky

 

[sred98]

Well, this might not help you much, because it sounds like your DD might be different than my DS was, but we had something similar.

My DS had a febrile seizure when he was about 1 1/2 yr old. Scared us to death. I had them when I was little, so the dr. said it runs in the family.

After that, for almost a year, we had episodes where I would find him passed out cold on the floor. I checked his breath for poisons (bleach, etc) and found nothing. Couldn't wake him up. I put some sugar under his tongue and he woke up. I took him into the dr. and they checked his blood sugar. His fasting blood sugar at 1 1/2 yr old was 130. Dh and I took ours to compare. DH was 70, mine was 35. Turned out DS was borderline diabetic.

He passed out in a restaurant once, because it was DD's birthday, we had been eating cake and ice cream at her party. I made them quit eating junk about an hour before we left. At the table, while we were waiting for our meal, he goes face down on the table and wouldn't wake up. We gave him more sugar under his tongue, and then crackers when he woke up. We just had to monitor his food. He is ok now. Before he was diagnosed, he had EKG (heart) and EEG (brain) tests.

Sometimes low blood sugar can cause kind of seizures. I'm not saying this is what your DD has, but you do need to have her heart and brain checked. I hope that you find out what is causing this. Please keep us updated.

Shelly

 

[horsejody]

I would definitely get to a specialist. One of my co-worker's son had a tumor that almost killed him as a child. He had surgery to remove it. He lived but his motor skills were impaired, and he has occasional seizures. My dog has seizures that are terrible to watch. I know that it would be even worse to watch that happen to your baby. Seizures have what is called a kindling effect. The more you have, the more you are prone to them. The baby needs help before damage is done. Implore the specialist to look at her sooner.

 

[Lucky Ducky]

I wish I could just go straight to the neuro specialist BUT unfortunately I have to get the referal from her doctor or insurance will not pay. My husband is the sole provider for our family and as much as I would like answers right now, we would never be able to pay the bill. Tomorrow we'll see her doctor and get the referal and hopefully we'll be able to get an appt. with the specialist very quickly. We have an excellent children's hospital in Albuquerque 2 1/2 hours away and I will get there at the first available opportunity. It' killing me to wait even until tomorrow but ... I really have no choice. Luckily for us, my MIL is a RN( so are 2 of my husband's aunts) and we're living with the ILs until our well and septic are finished on our property. So we have our own live in nurse. I'm hopeful that her doctor will also place the call to the specialist tomorrow morning to help with getting a faster appt. He is a really good doctor and I know he'll get it done. Thanks for feeling my pain, your kind words and any advice.

 

[PostalChick]

My experience with seizures in babies is febrile seizures-I don't think any of your dd's sound like that, even the first one.

Can your doctor see her today-can he at least call a neuro today? Honestly, three seizures in the last week is a bit alarming. I think she needs a full workup immediately, like, today or tomorrow. Can your mom try to get your dr to get her in today? especially since she was in the ER last night. You might also call your insurance company and see if you can get her in to the big city hospital-explain her seizures all this week, maybe they can bypass the referral.

I don't mean to sound so pushy-but I think you might need to get a bit pushy with the dr, in a nice way. Good luck-this must be so scary.

 

[Rhett&SarahsMom]

Oh I can't imagine how scared you all must be.
No idea on the seizures but you are in my thoughts

 

[mommathea]

have you heard of held-breath syndrom? It is different from a baby or child who holds their breath on purpose because they are mad.
It is when on the outcry it is so long that it causes all the air to go out of their lungs and they pass out and sezure like sypmtems happen.
My 2yr old started doing it when he was 6mo old. Sometimes he will pass out several times durring a 'crying fit' the last 2x it was triggered by brainfreeze from eating icecream.
The dr said he would grow out it it by age 6. IT is the scariest thing in the world.

One of my friend's daughter has it very severe and has had to be hospitalized with a pacemaker to help. Do everything in your power to get a straight answer from your doc. Sometimes drs won't diagnose it unless they see it happen.