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Discussion Starter · #1 ·
My 4yo ds started having what I guess are petit mal seizures a couple of months ago. There are several each day, worse right before meals, so blood sugar is probably related. They are hardly noticeable, just a funny look in his eyes or maybe fluttering eyelids, (though once he stuttered through it) never lasting more than 3 seconds. It is most likely related to a bout of meningitis he had around his first birthday. I have done a little reading, but I have a lot of questions.

• I am planning to take him to his pede, but haven't rushed over there yet...I'm concerned that they will want to do a lot of scary (for the boy) tests like an MRI or a cat scan (i don't actually know what that is like). Should I be wary of too much intervention on this one?

• What is the likelihood that they might recommend anti-seizure meds? Since the seizures aren't really affecting his health or quality of life, the intense drugs sound like an unnecessary burden for his little liver and kidneys.

• Is he more at risk for adverse reactions to immunizations? Is he more at risk from a childhhold disease like chicken pox?

• I found an old thread with some nutritional and mineral recommendations, but i would love to know of any particular therapy that has helped other kids to deal with this.

Thanks so much for reading this and for any suggestions.
 

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I know how scary this must be, we just went through a roller coaster of a year w/Zoe. She had some really bad side effects w/the anti-seizure meds.

I don't have any particular advice, just ask as many questions as you can come up with. The epilepsy foundation's forums might be useful: http://www.epilepsyfoundation.org/Forums/index.cfm Get second opinions.

In any case, we learned that the docs really don't know how the brain works, and they don't know how the meds work. It is all trial and error, educated guesses. We were extremely frustrated w/Zoe's treatment.

(((((Hugs))))) for you and your family.
 

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My little sister had these after a bike accident and brain injury. She grew out of it.

I'm sure it must be very scarry. A gal here has a 2 month old little boy who started having seizures after he was about 20 hours old and they still have no idea why.

I would almost think at this stage they wouldn't give anti-seizure meds until they run some tests.

Are you sure they are seizures..I mean has he been "diagnosed" with them...not that that really matters. With my sister they did this test where she had to stay awake for 36 hours straight and then they did an MRI. it turned out her petit mal seizures were so minor that they weren't concerned.

An off chance thing might be this...don't think I'm looney either.... have you ever taken your ds to a chiropractor. We go for preventative maintenance. It only makes sense that if the spine is the track for the nervous system that if it is out of alignment it can cause problems....just an idea....

I hope thigns work themselves out
 

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Hi Mimi,

I have a few suggestions, as my son started having seizures at age 19 mos. and only just stopped having them 6 mos. ago at age 4.5. We have been through what feels like it all. We started with only natural therapies for the first two years, then last year started antiseizure meds. when it became absolutely necessary. I am happy to tell you that he is doing fine now, and that antiseizure meds can work, and do work for many.

Eli's history is too long to tell the whole story, but basically we had tremendous success with natural therapies (primarily diet and eliminating all sugars/sweeteners, but also chiropractic, chinese medicine, western herbs, bioset allergy elimination, nutritional therapy, and homeopahty) for 2 years, then his seizures got very severe and very frequent and debilitating (he started to develop a left hemiparesis - weakness on his left side - from his right-brained seizures) no matter what his diet or therapies were. That is when we finally agreed with the doctors to put him on meds. Finding the right meds and the right dosage of meds. took 8 months. He at one point last year (age 3.5) was having 20-30 seizures a day and couldn't walk and could barely talk. He was in ICU last August for 2 weeks because the seizures wouldn't stop. Finally they found the right med for him and got his blood level high enough, and he is now in kindergarten and is completely fine, and in fact he had mental assessments done and his IQ is at 99th percentile and is advanced for his age (not that I cared before about such things that much, but now with him I do!!)

The blood level of a medicine is key. Your child could be on the right medicine, but if the level isn't high enough, the seizures could remain the same or even be worse. This requires regular blood tests, which is a pain, but extremly important. Believe me, this is coming from someone who hated hospitals and doctors and would've done anything to avoid them.

As far as whether you can trust what your pediatrician and pediatric neurologist tell you, it depends on who it is. We went through a few doctors until we found the ones we have now. We LOVE the medical doctors we have now. They are very mainstream, and through Kaiser, it just took some time to find the right ones.

My son's seizures were all grand mal, so different than your son's situation. My mom had petit mal seizures as a kid, went on antiseizure meds, and then was fine.

My first advice is to not be afraid of the testing. Although MRI can seem scary for a parent who's child has never had one, it is a very benign and routine procedure that causes no pain to the child. My son has had 5 MRIs. They sedate children for them because they have to stay absolutely still and the machine is very loud. Our experience has been excellent and professional: they know what they're doing. I too was against MRI initially; it took me a couple of months to agree to it. I assure you it is scarier for the parent than for the child. All he will know is that he going to the doctor, and will either get poked with a needle for IV sedation, or else breath gas for gas sedation (our anasthesiologist is great, he tells Eli "you get to breath something stinky now" and two seconds later he's out), then he will wake up a half hour or so after the test is over, not even knowing or caring what happened. Even if they do gas sedation, he will still have an IV in him because they have to monitor his fluids throughout the test.

EEG is another test they might want to do. This is more a hassle than anything. Again this causes no pain to your child, they will just hook up a bunch of electrodes to his head and might want him to spend part of the test asleep so you have to sleep-deprive him the night before then help him get to sleep during the test. Not a big deal, I would not be wary of it at all.

I don't know how likely it is they'd prescribe meds at this stage. If he is having several each day, my guess is it's pretty likely. Just remember you are the parent and it IS up to you. They may make you feel like it's not your choice. Our first neurologist told us Eli "requires" medication, as if we had no choice. You may make the choice to put him on meds. right away, and that may be the best choice. But if your judgment as a parent says that you need to try other therapies first, do it. There is no harm in trying (though it costs money) and you can always go straight for the meds if you need to. The therapy I would try first is homeopathy. We had the most success with that. You need to go to a highly experienced homeopath WHO HAS CURED SEIZURES BEFORE (ASK!) and follow her/his exact instructions. I would also look seriously at diet especially if you are concerned about blood sugar. The biggest factor for Eli was always sugars. Keeping him on a hypoglycemic diet (no sweeteners or concentrated fruits, plenty of protein and good fats, no simple carbs...) helped him SO much for so long. We still have him on that diet somewhat, though he's less sensitive now. Other therapies may be worth trying too. Chiropractic and nutrition are big ones.

Children with neurological issues such as seizures can be at higher risk for negative reactions to certain immunizations. I forget which ones they are. Possibly DPT. Ask your doctor, they have to tell you. I'm not sure about chicken pox.

Please feel free to pm or email me if you have any questions. I'll send you my phone number if you ever want to call. I know this can be scary but you are not alone, and you are smart for asking these important questions.

Warmly,
Lori
 

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I just wanted to add one thing. While it's good to ask "why?", don't be completely dependent on an answer to that question. We worked very hard to find the cause of Eli's seizures, and while that led us to some very successful therapies in the beginning, we still don't know the answer, and don't need to. In fact, in something like 95% of childhood seizure cases, the cause is unknown. And that is OK. There is validity to just getting the seizures to stop, regardless of where they came from. There is a phenomenon called "kindling" (some doctors believe in it, some don't, but after seeing what Eli went through, we do) where seizures lead to more seizures. This process must be stopped somehow. If you don't know the cause, don't torture yourself trying to find it. When it comes to seizures, it is OK and very common to never know the cause. (And as someone who was all but obsessed with finding the cause, I can honestly say that at this point I don't care. I just know that the seizures stopped and I have my little boy back.)
Please don't let anything I said frighten you...Eli's case is far more severe than most seizure cases.
 

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I hope you'll get lots of information and make informed decisions. I do know people with success & I know people who have horror stories about meds. There are lots of alternatives out there that may provide relief naturally. You'll have to see what feels best to you as you go along.

I know when my ds had seizures the doctors didn't want to put him on meds unless it was "interfering with his daily life" or until there were more than 1 type of seizure. I guess that will really depend on the doctor you get.

As for treatments like MRI's, you'll have to choose. We did one with our ds. I'm not sure I would again. I guess it was good because it ruled out some things.

We also did EEG's, blood & urine tests.

My son had very intense seizures.....all different kinds. The doctors wanted to medicate, we chose not to & pursued natural rememdies. Eventually, we found that food caused his seizures. He has been seizure-free & healthy for 2 1/2 years.

Since you know your son reacts more before eating, it could definitely be related to blook sugar. My recommendation is to do lots of research before making any decisions.

As for the vaccinations, he could very likely react to them. If you feel strongly about having him immunized, I would suggest that you wait until you firgure out what's causing the seizures and get them stopped before immunizing.

We tried many different therapies. I think you have to find the one that fits. Some homeopaths have helped stop seizures, cranio-sacral therapy can too, as well as chiropractic. Alot of kids find relief in specialized diets. I think every person is different, so, like trying to find the right medication, you'd have to find the right therapy. We did all of those things plus iridology & used lots of herbs & nutritional supplements too.

I'm quite tired right now, but if you want help or other questions answered, pm or email me.
 

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Discussion Starter · #7 ·
BIG THANKS for answers, thoughts and support one and all. I will definitely take all these things into account. AND i will still be checking this thread often, so if you just found this thread, please tell me all you know! Thanks again.

i love this board.
 

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No problem Mimi. Also wanted to add that an MRI is important not only because it rules out certain very unlikely things like brain tumors (unlikely but still good to rule out) but also because it helps with diagnosis and with finding the right medication if necessary. For example with Eli, the focal point that was coming up in his EEG corresponded exactly to the focal point that developed in his MRI; this helped determine the right medication and told the doctors exactly where the seizures were occurring. This was useful information for us. If your son has an MRI now and it comes back normal (highly likely that it will), then it's not likely he would ever need to have one again unless his seizures got worse.

I definitely agree with L.J. that different people require different therapies. Going through something like this brings parental intuition and trust to a whole new level. You will know what to do.
 

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Mimi21, I unfortunately know nothing about seizures. But if I were you, I would move on your thinking about them being diet related......You might want to PM Hilary. She possibly has some info for you. Blessings for your ds's health.
 

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Discussion Starter · #10 ·
..how have people talked to their children about seizures? ds is just 4, and i wondered if anyone had an idea about how to explain why we are going to the doctor and what the seizures are about. thanks,
 

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I think that's a difficult thing because from what I know, most people who have seizures don't remember having them. My son has no recollection at all and when we talk about it he just looks at me like I have two heads growing out of my neck!

I guess you could tell your child that you've noticed him staring off & doesn't seem to hear you or be able to talk when it happens and because of that you are going to go meet a doctor who will probably want to do some tests to see if they can figure out why he's doing that. -- Or whatever
My policy with talking to kids is be honest & simplify as much as possible.
 

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That is a really good quesiton. Since Eli started having them at such a young age, he wasn't at the point yet that it made sense to talk about it with him. Had he started having them at age 4 it would be different. Eli definitely knew when he was about to have a seizure, and he knew afterwards that he just had one. He never could compeltely articulate what it meant to have a seizure (sometimes he'd say it felt like a part of his body was "turning' and he couldn't control it), he was always extremely angry afterwards. If your guy just doesn't even know it's happening...I like L.J.s idea of being honest. Your son's personality will dictate it too. Eli never likes to talk about it much, he'd get really mad. He knew and we knew why we were going to the doctor and he didn't want to talk much about it except to say we're going to get the seizures to stop.
 

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Discussion Starter · #13 ·
"Yes, meningitis can cause seizures, but usually, they happen at the time, not three years later."

Hilary, how do you know this? Can you hook me up with some medical research on the subject? The epilepsy foundation's webpage listed several possible causes, and the only thing that rang a bell was the meningitis. I am looking for all the documentable information I can find on the subject. Thanks.
 

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What Hilary said was accurate about anything cauing seizures.

My son started having seizures at 19 months & it was all food allergies & digestive problems.

I did have to keep a journal....what we ate, where we went, what ds played with, etc. and that was the only way we found out it was food allergies.
 

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Discussion Starter · #15 ·
My question was specifically about the relationship between meningitis and epileptic seizures. I want to read the science on the subject, specifically the time elapsed between the disease and the onset of seizures. I am not unaware of or unwilling to look at other causes - I would like to first rule this one out as a cause or not. It seems like it merits some investigation, being one of the listed causes on the Epliepsy Foundation's website, and an unusual feature of my son's particular medical history.

Hilary? Are you still out there?
 

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Hi Mimi, yes I had read too about the connection between meningitis and seizures. I also would not rule it out as the cause or a cause unless research or medical opinion warrants that. I do think it would make sense to ask your pediatrician and neurologist. They see hundreds of these cases all the time, and regardless of what treatment or testing route you choose, there is no harm in getting their medical opinion. Just my opinion. Medline is a good source for research articles. You could also contact the epilepsy foundation as you mentioned and they might be able to point you to the research.
 
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