Question about testing

findacure

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My daughter had her first seizure (4 in 24 hrs) 2 weeks agao. Then had 2 more a couple days ago while on 2000m of Keppra. When she first got her seizures a CAT scan, MRI and VEEG was done. Thank god Cat and MRI were normal. While on VEEG no seizures but doctor said spikes while sleeping. Put her on Keppra and sent home. I want a second opinion and line in the Norther NJ NYC vacinity. Looking for the best neurologist of epileptologist available. Any referrals would be appreciated. Also other than the testing already done what other test do you recommend she get. I want to make sure eerything possible is checked out.
 

Endless

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One of your better chances chances of getting a good neurologist is to see an epi (seizure specialist) at a regional epilepsy center. Here's where you can look for one near you:

http://www.naec-epilepsy.org/find.htm

As for tests, it's important to rule out the more common non-epilepsy causes of seizures. Your doctor will have wanted to order full blood panels (tests), some heart tests if her blood tests indicate it. You may want to check her out for allergies, starting with the simple blood test. The history your doc takes from your daughter would indicate where to go from there.

As a middle-aged adult, I had blood tests to check electrolytes and vital organ functioning, my heart checked out (EKG and ultrasound), sleep study, allergy testing, neuropsych testing, a biopsy to test for celiac's disease, and eventually a lumbar puncture (wouldn't recommend that last one to anyone unless unavoidable).

If you strongly suspect sensitivities to foods, glutens, chemicals, yeast, etc., you can try an elimination diet. It's free, though tough for kids to stay on.
 

findacure

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Yes. I think we are looking to go to columbia comprehensive epilepsy center in NYC. I will be asking about all the tests you mentioned. Thank you very much.
 

findacure

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she reached puberty early at 9 so I am guessing it may not be but I am very new to this.
 

findacure

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I will tel you this. She is having issues with her cycle. She is very irregular and does not get it for months then has to be given progesterone to trigger it. Last time she got it for a few weeks and was very anemic and had to be given high doses of iron.
Now if she does not get for 3 months we are to give her the hormone to induce it. So I think there may be things going on with her hormones that need to be looked at. It is very coincidental that at the time she is having issues with her cycle she is now getting seizures. She was also diagnosed with being polycystic ovaries. My sister has that condition also. just something I want them to look into. When I told neurologist we got at hospital she said hormones would not casue it but I want another opinion.
 

momof3boys

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I will tel you this. She is having issues with her cycle. She is very irregular and does not get it for months then has to be given progesterone to trigger it. Last time she got it for a few weeks and was very anemic and had to be given high doses of iron.
Now if she does not get for 3 months we are to give her the hormone to induce it. So I think there may be things going on with her hormones that need to be looked at. It is very coincidental that at the time she is having issues with her cycle she is now getting seizures. She was also diagnosed with being polycystic ovaries. My sister has that condition also. just something I want them to look into. When I told neurologist we got at hospital she said hormones would not casue it but I want another opinion.
When I was in the 6th grade, so around the age of 11 or so.... I started to have hormone changes which caused me to gain alot of weight. I didnt start my first period til the age of 14, but I went for months without a period. My longest I recall having no period was for 18 months. Finally, at the age of 18, I went to see a specialist who knows all about PCOS, Polycystic Ovarian Syndrom. She dx me right away. I was put on Glucophage XR 1500 mgs each day before my supper and she also had me take a birth control pill to help get my cycles regular. From that point on, I started having a regular cycle. To this day, I still take the glucophage. Its helped me out with just being able to have a period each month, and also so many other things too.... like my weight control, and the other symptoms PCOS can bring.

If you have any questions about PCOS, feel free to ask me anything! I hope you can find answers for your daughter. I remember when I was her age, I went through alot of hard times in life. I wish at times I didnt have to go through it, but looking back, Im thankful for my mom, she helped me get through alot of those things!
 

RobinN

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My daughter was 14 when she had her first seizure.
I kept the thought in my head that my daughter had been fine for 14 yrs. I needed to return her body to that state. We tried medications (4) and it made her life spiral out of control with terrible side effects. So I went alternative...

Hormones have played a role in her seizure activity, and we are working to balance them naturally

Making nutritional changes has raised her seizure threshold, so that she has bone as long as 8 months seizure free. She is learning to make better choices.

Managing blood sugar levels is also a major part of the plan. She has tested hypoglycemic, (after 4.5 yrs) and recently her blood work says she is high risk for diabetes.

There are a lot of reasons that one can have seizures. Remember E is only a label.
The doctors are treating the symptoms and not the cause. Of course not every one can figure out the cause, but if you do, you can work on raising the threshold.
 
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As a Mom--you know your child better than anyone. Yes-seek the 2nd opinion. If you don't, you will always wonder "What if I...". If you get the same answer, once or twice more, then you'll feel more comfortable. Get copies of ALL testing you've already had done, including MRI scans and a copy of the EEG itself for 2nd opinion review. Get any thing which is repeated. Make sure you get them back. This will save you time, money and most likely unnecessary repeat studies. Good Luck!!
 
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