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worried Mom of 11 year old with complex partial seizures

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Old 07-24-2009, 12:09 PM   #1
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Question worried Mom of 11 year old with complex partial seizures

Hello all I am New to the Epilepsy board, and a Mother that is worried to death about my son,I know this is a extremely long post but please bare with me I am at the end of my rope and need some advise from parents that have had the same experience, here is a little information he is 11 years old and very active 6th grader. His birth weight was 8 lbs 1.5 oz although a good size baby he has always been on the small side, he has in the last few moths put on about 15 lbs. The only health problem he has had since birth is asthma that he was diagnosed with when he was 2 that only flared up when he had an infection or was sick, over the past few years the number of asthma attacks has dropped off. Back in April his teacher told me of some concerns she had saying he would zone out and talk about things that didnt make sense he has a very funny personality so I thought he was just being a class clown, I had never noticed these episodes at home, then in May he started doing it at home also. He would get a blank look and wasnt responsive and start making a humming noise the episodes lasted from 30 sec to a minute, after he would be a little disoriented for 10 minutes or so and then be really tired. I took him to the pediatrician 3 times and all 3 times he blew me off saying he had ADHD and kids with that have trouble with holding thoughts in so whatever he was thinking is what came out, I wasnt buying that I know my son and I knew in my gut that wasnt the case, I am also a licensed Practical Nurse so have some medical background so I started researching it myself and when watching videos of kids with complex partial seizures it was like watching my baby. I made an appointment with a pediatric Neurologist but of course the wait for that was months his appt is Aug 13th his episodes as we call them have increased from 2 or 3 a day to somedays 7 or 8. I started keeping a journal of the episodes to see if maybe something was triggering them, but they come at all times when he is doing a variety of things when he has eaten and when he hasnt. I read that some patients with diabetes are prone to these seizures, Now over the last month I have noticed he has had excessive thirst, hunger and urination which I know are signs of diabetes, I checked his blood glucose yesterday about 2 hours after eating a sausage egg and cheese buiscuit and it was 131. and last night after not eating anything it was 108 which I know is within normal but at the high end of normal, Has any other parent experienced this with a generaly healthy child for them to start having CPS out of nowhere? And how many episodes are too many in a day? Should I take him to the Emergency room after having so many? They dont last but a minute and he may not have another while we are there so is there anything they could do for him? I was thinking that a referal from an ER visit may get him into the Neurologuist faster. I am so worried that something bad will happen before he gets to see the specialist.Sorry for the long post and any information or advise will be greatly appreciated thank you so much for your time.

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Old 07-24-2009, 07:10 PM   #2
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Re: worried Mom of 11 year old with complex partial seizures

Hi Twina77: Everything you say is alarming. There are many reasons why this could be happening. Do you know if he's ever had any head trauma? At school, in gym class, getting punched by other kids? Does he watch a lot of TV and use video/nintendo games. The electro magnetic fields from these could trigger stuff. Some video games tell you right on them that if you have epilepsy you shouldn't play them because they tigger seizures. In school I would point to the fluorescent lighting! Big trigger!!!! Food can also be a problem. MSG is in a lot of food we eat. It's a trigger. Chinese food we all know has MSG. Is he under alot of stress? Puberty can put undo stress on the brain. He definitely needs to have an EEG, CT Scan, and MRI to rule out any tumors or blockages that could be causing these seizures. It's good you're keeping a journal of the episodes because the doctor will be able to use that info to help you. The blood sugar thing could be an issue, too. I've heard of diabetics having seizures when their sugars get too low. I have a 10 yr old type 1 diabetic but he had ketoacidosis when he came down with strep throat. That threw his immune system overboard. I wouldn't rule it out though. All avenues have to be addressed to find out what's going on. I'd agree that if he has another episode before the 8-13 appt. to go to the ER. It might cost you a bit of money for the fees but you'll get a head start and the neuro will have some info by the time you see him. I would suspect that they will put him on AED's. If they do, be careful of allergic reactions. I hear more and more about kids getting epilepsy and diabetes. It's epidemic! Who you really need to see is a neuro-endocrinologist. They can deal with both sides of the issues. Most doctors are quick to give a RX instead of getting to the root of the problem. That's really sad that you're an LPN and you got no satisfaction with your pediatrician! If you find a good neuro/endo then you won't need to deal with the pediatrician on this. Do you have a good children's hospital near you? That's where you'd most likely find one. Don't give up and go with your gut instinct. MOTHER KNOWS BEST! Another thing I would recommend is to have neurotransmitters tested and also a blood test for toxic and non-toxic elements. See what his magnesium levels are, etc. Does he drink alot of diet soda? If so, the aspartame is poison to your neurotransmitters. It lowers the level of Taurine in you. I've been taking Magnesium, Vit B6 and a B12 Stress Complex and I believe they are all helping me. I'm in a different situation though. My seizures are from menopause. However, vitamins and minerals could do a load of good before you get hooked on AED's. Try to work with the doctors but if you're not happy then keep searching. There is loads of info on these boards if you have time to go through them. Good Luck. Stay strong and have faith that it will all work out.

Old 07-24-2009, 08:05 PM   #3
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Kat2u HB User
Re: worried Mom of 11 year old with complex partial seizures

My daughter had this type seizure when she was 6 years old.I was told by doctors she was faking.I did research and pushed for a MRI scan. She had a brain tumor! Needless to say after surgery and radiation she has done well.
But I did have to push them to look for the problem. And Im glad I did

Old 08-12-2009, 04:54 PM   #4
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twina77 HB User
Re: worried Mom of 11 year old with complex partial seizures

Hello all well his appointment was scheduled for the 13th of this month they called and cancelled and resheduled for Oct but with some complaining and aggression our Dr ordered an EEG that was done yesterday he had a seizure during the test. I worried all along that even with him having so many daily that he wouldnt have 1 at the Dr but he did, they said it usually takes 7 to 10 days for the results to be available but I got a message already today saying that the Dr wants me to call so we can discuss the results. so now I am anxiously waiting to hear back from him.

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