Anyone with seizure experience in babies

[mychickensrock]

Hi Lucky! I just found this thread. First, I am so sorry you are having to go through this. I hope you get answers. I have seizures. Mine are/were caused by an AVM (which is a brain abnormality). One thing I know from my own research is that seizures can take MANY forms. When my daughter was maybe 1 1/2 she too had a few seizures. No fever or anything. She was sitting in a chair and just went blank, started screaming bloody murder, and her eyes were racing back and forth. Talk about scary. At that point in my life, I'd already had 2 brain surgeries. I was for sure she had what I had. Luckily there was a pediatric neurologist in the practice with my neurolgist, so she got seen super fast. I guess, because of MY history, they took it all really seriously. She had an MRI that day. They never found out what caused them. I think she had a total of 3. She's 8 now and has never had any other issues with it. As for medication, from experience, if they put her on anti-seizure meds (especially Tegretol) make sure to give her multivitamin and LOTS of calcium. I am 31 and have much early bone loss thanks to many years of Tegretol. Do research on the meds. Best of luck! Prayers for you all

 

[Wifezilla]

Does lamictal have the same problem? I know there is the steven-johnson syndrome possibility, but that is very rare.

 

[mychickensrock]

Quote:
I took that for a very short time. I'm allergic to that one.

 

[I have WHAT in my yard?]

Lucky, I am sure you are very scared right now. I have no idea what could be wrong, I just want to share this story with you.

When my niece was born she was quite early. She was on an oxygen feed for a long time. The oxygen damaged her brain. Or so they said.

She had seizures. The doctor's didn't believe my sister either when she told them Emily was seizing. (I don't know why, given her history) But, when they did find them they told her that the seizures where damaging her brain even more. It was horrible. They told her to put Emily in an institution that she would never walk or talk or know her mother.

My sister refused to believe them. She took her home and the whole family (heck the whole neighborhood) got involved in her therapy. She had seizures off and on for most of her life.

But, the little girl who wasn't supposed to walk is on the dance squad.
The little girl who wasn't supposed to talk speaks three languages.
The little girl who was never supposed to know her mother is in her third year of college.

She is doing great. She still takes meds, but she hasn't had a seizure in years. We went to her dance recital this past spring and I am sure no one in the audience could understand why my sister and I were crying throughout the whole thing!!

I am sure you are scared, but have hope, children are amazingly resilient!

 

[Lucky Ducky]

Well her doctor was right, the neuro doctor is difficult. He's one of those it's his way and couldn't possibly be any other way. He scheduled her an EEG for next Thursday but he's POSITIVE that it's unnecessary! It his esteemed professional opinion she's holding her breath on purpose just to get her way. Her doctor who has seen her since the day she was born thought it was Vagal syndrome in which she has NO CONTROL over when and where she'd have one. The neuro was berating his on staff before we even went in there and needless to say it was a definite sign of his pesonality. I can take it as long as we get the tests done. He's supposed to be the best. He says that when my 16 month old baby girl has an episode I am to leave the room and do NOTHING, even if she has a seizure!!! That is sooooo not going to happen. I live with my child and know her wayyyy better than a doctor who spent all of 15 minutes getting background info and acting condesending because he is all knowing. I admit he went to school for a long time and knows more than I do about the brain. However, not all of these episodes are preceded by her getting mad, some are when she's tired, scared or hurt. He thought she should be having them everytime she gets vaccinated but she doesn't. I can't she how she could be doing it on purpose, she is absolutely TERRIFIED after one happens. After the EEG gets done we go back on the 20th to see him. I'm waiting to see the results before I make the decision to switch to the other neuro. The other one doesn't deal with a lot of kids. Plus it could be that listening to this doctor before we even went in there colored my view of him. All I know is that my husband would NOT get along with this Man AT ALL. So we're stilling waiting. Thanks for sharing your experiences, even though it's scary, it does help to know we're not the only ones dealing with this.

 

[ams3651]

i went thru 2 pediactric neurologists before i found the one we have now. I didnt like their arrogant attitudes and if Im supposed to trust this person I have to respect them. Is this at the Childrens hospital? They should have a couple of them on staff. Make sure to get a second opinion even if its just to send a copy of the records to another Dr. If he's that arrogant he may not read them properly because he doesnt want to see hes wrong.

 

[coloradochick]

Lucky go with your gut instinct on this. You could end up being under this doctors care for some time until things get worked out. If he truly is an arrogant jerk and its his way or no way that's hard to work with. We have an appt the 12th with our 4th neurologist. Not near enough research is put into seizure disorders. I hope someday it will be a priority. Good luck on the EEG.

 

[mom'sfolly]

A video cameral might be your friend. Follow your instincts with your kid, rather than his advice when she seizes, but get someone to tape what happens. Your description of what is happening can't show the doctor what is going on. Maybe if he can see how it works with her it will help. Unless she has a seizure in the office, he can't see what is happening.

Best of luck with the EEG. Thinking of you.

Karen

 

[Lucky Ducky]

My husband whipped out his cell phone and recorded some of it while it was happened. Our phones only record for 30 seconds and he did it 2 times. So we had 1 full minute of the last episode and he wasn't interested in watching it.

 

[mom'sfolly]

Sorry to hear that. I hope the EEG shows something. Even if this guy is the "best", he might not be the best for you. Or maybe the guys been watching too much House.