Running out of options
 

Ok this is kind of a long story but we are running out of options and I am not quiet sure what else to do. My daughter is 2 and a half almost 3 she was diagnosed with epilepsy at the age of 8 and a half months. She has been on all of the drugs for children imaginable. She was recently just taken of the ketogenic diet cause it was not working. Her neurologist says that her condition is most likely idipathic yet they have only done the neccessary test. Blood and urine, eeg/ video eegs, cat scan and mri, and that is it. We have asked lots of times what test are out there to see if we cant find any problems that could cause that and he just replies 90% of epilepsy patients are idiopathic. Well frankly i am getting tired of it. My question to whom ever can answer is there a possibility that allergies or heart problems could make her have seizures. Her seizures range from drop to grand mall there are times when she loses her bowels and then there are time when she doesn't. There are also time that she really doesnt have a postictal phase and there are times where it rediculus how postictal she is. we spoke with her Doctor today and he said that there is no possible way that a heart condition would be doing this to her. Which doesnt make sense to me. I have a feeling that something is going on with her heart but am not quiet sure. She was born pre maturly and so I thought it was just because of that. let me explain what I have observed. Even when she is not seizing she has a somewhat irregular heart beat. It beats hard and odd. My one year old has been a confirmation of my suspitions. Also when she was born she had a very hard time keeping her food down. Is there any possible way that she could have an immunity disorder and that could cause seizures? We are sure what to do anymore and this is really begining to take a toll on my husband. If anyone has any insite please reply. We need help.

Hi Felisha,

Welcome to the forum! I'm sorry to hear that your daughter has been having sz. and that the diet didn't work. My advice to you is to get her to an Epileptologist if she hasn't seen one yet and be sure to go to an Epilesy Center which are often found at University Hospitals or big hospitals. You are correct heart problems can lead to sz. as well as when a person is sick with a cold or stomach bug because the illness messes up a persons body chemistry and can trigger sz. I don't mean to be rude but if I were in your place I would get a second opinion because I don't think this Dr. is updated on causes of epilepsy. You should have the Dr. order a PET scan along with a SPECT scan this will show what area of the brain is the most active and triggering sz. I would also order a special e.e.g. where they would flash different color lights one at a time your daughter may be photosensitive which means certain colors are triggering sz. for her. Another test they can do on her is audio and visual testing to see if certain sounds or colors and pictures are causing the sz. I've had epilepsy for 39 yrs. and I was 10 when I began to have sz. so I understand what you are going through. Keep your daughter away from anything with nutrasweet (aspartame) in it like diet soda and keep her away from cell phones because they have proven that both aspartame and cell phones can trigger sz. for many people causing to much electrical activity in the brain. If I may ask does your daughter sleep well at night? If she doesn't she may have a sleep disorder like sleep apnea and that can cause epilepsy for some people. I've found taking vitamin B12 once a day the biggest help to reduce my sz. Tell the Dr. you want a DNA test done on your daughter by doing this they can find what AED (sz. med) will work the best for her with the least side effects. It could have been some of the medication she was taking for her sz. that caused the problems with her stomach. This is what happened to me while taking mysoline (primidone) for over 20 yrs. the drug ate up the lining in my intestines and I had to see a gastro specialist to get things straightened out. Also take note of the weather if a low pressure is coming in sometimes that will trigger sz. for a person. I wish you and your daughter the best of luck and May God Bless You!

Sue

Hello and Welcome to NeuroTalk!!
 

Felisha,

Hello and welcome to NeuroTalk. Happy to see you came to be a part of our group. There are great number and caring fellow members here to assist you. It is so sad for little ones to come across this in a small as her. Please give her a great big :hug: for me. And also keep us informed.

Our shoulders are here for support in many ways. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene :hug:

Please you need a specialist in Children's care.

First lets help you find a Children's hospital for the Epitiologist
that was suggested.

If you would like to give us your location, It could be even
just your state.

We can help you locate the right Hospital to look for this doctor.

Also ask some friends, if they go to a specializing hospital.

Donna:grouphug:

Hi Felisha,

Sorry about your daughter. Can't imagine how worried you are. I have epilepsy and Celiacs and I know for me whenever I get "gluttened" I will have a seizure - as a result of an auto-immune reaction - the damn stuff goes straight for my poor brain. I've been on a pretty hardcore Celiac diet with no grain whatsoever for several years now which has really helped and I take minimal medication. Might try starting there - could be caseine also. With all the stuff they do genetically with food nowadays there are so many things that could cause an adverse reaction.

You should also get her checked for PFO (heart) also.

My heart is with you!