My son. A doctor finally saw what I was talking about.

amy&anthony Posted: Mar 03, 2005 05:32 PM

My son. A doctor finally saw what I was talking about.

Some of you know that Gabe was having some side effects to what I thought was the meds he was on for pneumonia. Well hes still having them after stopping the meds on the 19th. The doctor thinks he is having seizures and I have to take him to Schneiders Childrens Hospital in Commack. Do any of you know anything about seizures?

Janice Posted: Mar 03, 2005 05:34 PM

Re: My son. A doctor finally saw what I was talking about.

sorry, I am knowledge useless, but I will keep you in my prayers

LaurenluvsTJ Posted: Mar 03, 2005 05:36 PM

Re: My son. A doctor finally saw what I was talking about.

How old is he? Where is there a schieder's children's hospital in commack?

newnybride2be Posted: Mar 03, 2005 05:37 PM

Re: My son. A doctor finally saw what I was talking about.

Aww I hope everything turns out ok

BriBri529 Posted: Mar 03, 2005 05:38 PM

Re: My son. A doctor finally saw what I was talking about.

amy&anthony Posted: Mar 03, 2005 05:39 PM

Re: My son. A doctor finally saw what I was talking about.

He is 3 1/2. The doctor is going to call me after they figure out what doctor takes my insurance. I didnt realize there was something in Commack either but thats what he said or I misunderstood him. He also mentioned Stony Brook but said he liked Commack better. Is there a word that sounds like Commack? LOL

janet Posted: Mar 03, 2005 05:39 PM

Re: My son. A doctor finally saw what I was talking about.

i know a little about them my cousin got them alot... but somepne on here just had a post the other day because she was stopping meds she was taking for them due to a reaction if i rememebr right but i do not remember who it was, fm me if you like and i can try to help with what i know from my cousin, good luck and i hope everything gets better soon!

Danielle Posted: Mar 03, 2005 05:49 PM

Re: My son. A doctor finally saw what I was talking about.

I'm so sorry to hear about your son! I will be praying for him!!!

Jax430 Posted: Mar 03, 2005 05:58 PM

Re: My son. A doctor finally saw what I was talking about.

There are many different types of seizures. My nephew had seizures when he was 2-3 years old, and he has been on medication since. He's 5 now. Eventually, they might try to ween him off of it to see if the seizures have disappeared. However, there are so many different causes for and types of seizures that you're best off having a pediatric neurologist run some tests to give you a better idea of what's going on. What behavior is he displaying that makes you and your doctor think it is a seizure?

I hope everything goes well for your son.

amy&anthony Posted: Mar 03, 2005 06:01 PM

Re: My son. A doctor finally saw what I was talking about.

I wrote this all in a post before and I accidentally hit the back key and it dissapeared!! Grrr.

He:
rolls his eyes in the back of his head
jerks his head to the right
blinks real long and hard
blinks often
he also seems to get some dizzy spells.

BTW - he also has a rash on his face right now and the doctor said he doesnt really know what it is - it looks like broken blood vessels. He wouldnt worry unless it shows up elsewhere... :(

Sasha96 Posted: Mar 03, 2005 06:01 PM

Re: My son. A doctor finally saw what I was talking about.

I used to work with many children who had seizures. There are so many types of seizures. Please let me know if you want to chat and I can share what I know.

Some of the best advice I can give you is to video tape what you believe is a seizure and bring that tape with you to the doctors. Many parents I know have done this and it has been tremendously helpful!

Good luck and I wish your family and your son the best!

Jax430 Posted: Mar 03, 2005 06:03 PM

Re: My son. A doctor finally saw what I was talking about.

I'm certainly not a neurologist, but it does sound like it could be some type of seizure, or a tic. My nephew had the type of seizure where his eyes would roll back briefly..they're called absence seizures..he also had more severe ones though...I hope that it's nothing major for your son. Keep us posted

amy&anthony Posted: Mar 03, 2005 06:05 PM

Re: My son. A doctor finally saw what I was talking about.

Jax - yes, it happens briefly.. usually a few different ones in a row or so and then at times NOTHING...

Thank you everyone... The doctor said Schneiders will make us stay a whole day and video tape him all day.. I would rather video tape him myself but he said they need to measure brain waves during that time?

btrflygrl Posted: Mar 03, 2005 06:08 PM

Re: My son. A doctor finally saw what I was talking about.

seizures can be epileptic or merely caused by a high fever. I hope your son will be ok!! I'll be praying for you!!

Jax430 Posted: Mar 03, 2005 06:09 PM

Re: My son. A doctor finally saw what I was talking about.

Posted by amy&anthony

Jax - yes, it happens briefly.. usually a few different ones in a row or so and then at times NOTHING...

Thank you everyone... The doctor said Schneiders will make us stay a whole day and video tape him all day.. I would rather video tape him myself but he said they need to measure brain waves during that time?

They need to measure the brain waves to see if the brain waves are changing when he displays the symptoms. They can also tell what part of the brain is having the seizures, if it's on one side or both sides of the brain, etc. By figureing out what part of the brain they come from, they figure out what type of seizures they are and any possible problems that can arise as a result.

JodiBabe Posted: Mar 03, 2005 06:10 PM

Re: My son. A doctor finally saw what I was talking about.

I had epileptic seizures up until 4 years ago. It certainly sounds like some type of seizure and I really think your son would benefit from a pediatric neurologist. I didn't know Schneiders had a center in Commack. I hoe everything turns out ok.

ETA: It sounds like they want to do a video EEG. It is very easy. I had it done for 11 days prior to my surgery.

lvdolphins Posted: Mar 03, 2005 06:12 PM

Re: My son. A doctor finally saw what I was talking about.

Posted by janet

i know a little about them my cousin got them alot... but somepne on here just had a post the other day because she was stopping meds she was taking for them due to a reaction if i rememebr right but i do not remember who it was, fm me if you like and i can try to help with what i know from my cousin, good luck and i hope everything gets better soon!

That was me! I went through all the tests there could possibly be. Everything came back negative. The reactions started after I took and aleve or an advil. I had 2 episodes last year (Jan. and March) at 28 years old. I never, ever had a siezure before in my life.
Im off the meds as of this past tues. Yes, Im taking a gamble, but even the dr.s want to say it was an allergic reaction, however, they dont want to say 100% thats what it was. (Safety issues, I guess.)
I wish you and your family all the best. If you have any questions, plz feel free to FM me.
Hope all goes well.

mishandgerard Posted: Mar 03, 2005 07:23 PM

Re: My son. A doctor finally saw what I was talking about.

I do. I have epilepsy. What exactly is going on? You can FM if is too personal.

mish

Kosta's Kitty Posted: Mar 03, 2005 07:34 PM

Re: My son. A doctor finally saw what I was talking about.

Are you sure its not Sloan Kettering that you are referring to on commack rd. I know of no hosp in commack.
Hope everything turns out well!

luvsbob4603 Posted: Mar 03, 2005 07:37 PM

Re: My son. A doctor finally saw what I was talking about.

I had seizures when i was 11 months old till 1 1/2 years old. i been on med all of my life i am seizure free for 35 years well its going to be 35 years in sept. if you need to talk or need a number for a neurologist fm me i have a great doctor.