Doctor ignoring pleas for help with sons seizures and claims they are headaches NOT seizures!!

Kate - posted on 04/16/2012

Just remember to go onto Epilepsy.com - you get great information from so many parents who have done so much research (something doctors hate) find out a lot about meds and reactions and you can even be a sounding board for someone else who is having bad night. Also - if you find he is sleeping all day (yep, we have done that as well,) or putting on mass amounts of weight or has a very bad memory - its the drugs and change him. You don't have to put up with it and you will find one that suits him perfectly. Watch for depression too - always watch for that one. Anytime my friend!!

Erica - posted on 04/16/2012

Just hearing the things oyu have said have made me feel A LOT better and you have given more information then the so called Neuro. At times I just wish I could shake the crap out of that doctor and tape his mouth shut just so he could HEAR me. i will not be taking my son back to him, EVER. Keppras, IS the name of the first meds that he placed him on. He took it that ONE time and I thought I would have to take him to the ER because he was asleep ALL day, woke for about an hour and slept the ALL night. they wanted me to give it to him in the a.m. AND the p.m. After that day, I said no. Your right about the EEG coming back normal. They said there was NO change for better or worse! I WILL be asking for a Sleep Deprived EEg once we are sent to another Neuro in the next county because I feel as if I am allowing him to suffer because of this quack doctor. Thank you for the advice and I WILL be using ALL of it to help me through this. Thank you once again!

Kate - posted on 04/16/2012

Couldn't you just jump across the desk and SLAP them....god that makes me so angry. My son has had every type of seizure. He has had ones just as you are describing. Sometimes kids pick at the front of their shirts - like there is fluff there. Sometimes they mutter - smacking their lips, sometimes it is just sitting in a daze - there are hundreds of different types. CHANGE DOCTORS. Try a valporic acid - I have tried everything and they work the best for us and have no side effects. No fog, no dizziness or weight gain - he takes two pills morning and night. You must always take them though.

An EEG will often come back normal - my son was having hundreds of seizures a day and his EEG was normal. Tell them you want - DEMAND - a sleep deprived EEG. Keep him up till midnight the night before and wake him up at 5 ish on the day (make sure it is booked early in the morning. That will give you the results so you can start dealing with this in a normal way. Don't be despondent - my son is an outstanding athlete, has made state in 5 different sports, a straight A student on honor role and principal list - epilepsy is not a life sentence. Just don't wrap him in cotton wool - big mistake so many make. Make sure he feels normal just like everyone else. Some people have big noses, some people have fat bums, you have epilepsy....:) Join an epilepsy forum - wonderful people can give you their experience. Ask for any help and talk to someone when times get tough for you - but DO NOT let doctors tell you it is nothing if you know it is.....give me a shout any time - once diagnosed life will go back to normal and is good again. oh - don't ever go on Keppra - (google Keppras Rage) and watch for twitches - if he is twitching in his sleep at all - jerking - it is a sign. You know when you dream your falling - that kind of thing.

Erica - posted on 04/16/2012

Thank you for responding Kim. First off I would like to say that I am VERY happy that your son overcame that. I know how stressful that must have been for you at the time.

My son doesn't shake or anything but if he is sitting and watching tv, he will "freeze up" in whatever position he was in and he cannot hold himself up. If I call his name, he doesn't respond. I try to move his arm and it is tensed in position. They only last about 30 seconds or so. Whatever he is doing, he freezes in that position. If he is walking and one starts, it's as if he is walking into the ground because he walks lower and lower...but only because he is losing all control at the time and is out of it. By then I run to catch him before he hits the ground. I will hold him in my arms until he comes to and after each seizure, he is EXTREMELY tired and wants to either sit down or lay down and rest or take a nap. He eyes are not focused, his mouth is just there and open, he whole body is tensed and cannot be stretched out, his hands just recently started to slightly shake and he doesn't respond when I call his name or look into his eyes. They have gotten worse and I KNOW they are some form of seizures but he will not listen to me. They once gave my son a liquid medication but I took him off of it because he was like a Zombie and slept all day and all night. He is up to 8 pills a day that is sprinkled over his food. His PCP once stated that a boy going through puberty can cause an increase in seizures as well as being extremely tired or sick. I sure hope this gives you an idea of which form of seizures this could be. THANK YOU SO MUCH!!

Kate - posted on 04/15/2012

Hi there - tell me what type of seizures he is having. What do they look like.

I went thru five months of the top neuro at the children's hospital telling me I had munchhausens proxy....so know how you feel. We went from me being mad, to my son being diagnoses as terminal with only a month to live - while he was having 1200 seizures a day. I changed to the Neurosurgeon and she discovered my son was allergic to the medication the other doctor had him on - 5 days and he was out of hospital and back at school. But my son has had every type of seizure - so if I can give any advice I will