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
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
