chickenpatty Posted August 28, 2009 Share Posted August 28, 2009 My ds (age 7) was diagnosed w/absence in February. He has dozens a day, some lasting as long as 40 seconds. Upon the pediatric neurologist's recommendation, we have tried Depakote and Zarontin (sp) (not at the same time - first the Depakote and when that wasn't working out well, we switched to Zarontin), starting off with smaller doses and working our way up. But, even at small doses, he became so tired that he spent much of the day laying on the couch. He was also very cranky. The Zarontin also gave him stomach aches and dizziness. Because the dosage was still low, he was still having seizures, too. So, under the neuro's reluctance guidance, we have taken him off everything, and of course, he is still having siezures. Have any of you tried anything natural that has helped? All of the prescription meds have such horrid side effects that it almost seems better to just work around the seizures, even though they are so frequent. Any advice? Quote Link to comment Share on other sites More sharing options...
Ottakee Posted August 28, 2009 Share Posted August 28, 2009 Are you seeing a top notch peds. neurologist? If not, get one. I honestly don't know how to treat seizures naturally (unless there is a known outside cause you could treat) but there are LOTS of other medications that might work with few to no side effects. My 13dd is on Tegretol and Lamictal while 12dd is only on Lamictal. Not sure if either is indicated for absence seizures but they are very helpful here. We tried Trileptal (cousin of Tegretol) and it was terrible. I hate that it is such a trial and error thing but that is just the way it is. The doses can also vary so much from child to child as my 13dd (smaller than 12dd) take 600mg of Lamictal a day while 12dd take 100mg of Lamictal a day and they have very similar blood levels. Quote Link to comment Share on other sites More sharing options...
Mom2GirlsTX Posted August 28, 2009 Share Posted August 28, 2009 I'm going to second getting a second opinion. My daughter takes Trileptal and it has helped her so much. It did take awhile for her to get used to it. If you can, get another opinion... Quote Link to comment Share on other sites More sharing options...
sheryl Posted August 29, 2009 Share Posted August 29, 2009 My ds (age 7) was diagnosed w/absence in February. He has dozens a day, some lasting as long as 40 seconds. Upon the pediatric neurologist's recommendation, we have tried Depakote and Zarontin (sp) (not at the same time - first the Depakote and when that wasn't working out well, we switched to Zarontin), starting off with smaller doses and working our way up. But, even at small doses, he became so tired that he spent much of the day laying on the couch. He was also very cranky. The Zarontin also gave him stomach aches and dizziness. Because the dosage was still low, he was still having seizures, too. So, under the neuro's reluctance guidance, we have taken him off everything, and of course, he is still having siezures. Have any of you tried anything natural that has helped? All of the prescription meds have such horrid side effects that it almost seems better to just work around the seizures, even though they are so frequent. Any advice? Patty, There are a few of us here who have kids with epilepsy and specifically absence seizures. My 10 dd had a seizure in Mar 07 and it resulted in absence seizures. She is not seizure for 1 1/2 years this next week we're going into!!! I second the other Moms. Go to a top notch pediatric neuro. It's imperative that you CONTINUE with zarontin. It sounds like you may have not tried for a long enough period of time. Yes, my dd got sick, threw up for a couple months, this and that, BUT.............. w/o the meds we were told she could die. It's like starving the brain. It's so hyper it's close to burning out. You MUST calm the fire through meds. As O said, there isn't anything natural that we know of. HOWEVER, as O said, supplements, vitamins, etc. Here's what I've researched and found: EARLY morning sun B6 at 50 mg. (our neuro approved this) Vit D....OK with n Fish Oil of purest and best quality (n recommendation) Melatonin if/when he has trouble sleeping (n approved) Gentle back rubs, light message therapy Gentle music Calm, peace, harmony Continue demonstating your love and acceptance of him PRAYER! Also, I'd start him on Zarontin again, slowly increase. Ask if Lamictal can be added. My dd uses these 2. Lam did not stop the seizures. It was shortly after she started Z....boom they stopped. Please know the earlier you "treat" this, the better the outcome, usually. And, not to overwhelm you, but our n told us that it is VERY common for a sister issue to accompany the epilepsy. Usually it's behavioral. Likewise, the earlier the treatment, the better it will help your ds. HTH. If you like, pm me. Sheryl <>< Quote Link to comment Share on other sites More sharing options...
Sasharowan Posted August 29, 2009 Share Posted August 29, 2009 My 2 middle kids started seizure activity when young. dd was almost 5 and had either grand mal or petit mal seizures (I'm not sure which) that they controlled with Trileptal. She would have break through seizures (both mal and absence) every 3 months or so and they would increase the dosage. Then she stopped having them, went 2 yrs free and has now been off the meds since last Nov. and 3 yrs since she had a seizure. Trileptal had few side effects and going off the meds, she got hyper for a bit but has calmed down now. ds started with grand mal seizures at 3 (about 6mos after dd started), got put on Tegretol which controlled the seizures but made him very sleepy. He is the one that will get dopey on Tylenol anyway, but I was very glad we were already homeschooling and could work around that. He would go over a year, then have a break through. He made 2 yrs seizure free last spring and is on a step-down program now to wean him off the meds. Tegretol has shown more side effects on him and I am eager to have him off and able to learn. It bothers him that Sis is so far ahead of him in school, but the meds have had a major fogging effect on his brain. I jusggled his med schedule so that he got at least an hour in the morning for math and reading before getting a fresh dose to cloud his mind. I figure it will be at least 6 mos. before we start to see what he'll be like without the meds. I know we'll need some sleep training since he hasn't gone to bed withoutmeds since he was 3. and he is 8 now. Just some info on other meds available. Quote Link to comment Share on other sites More sharing options...
Jan in SC Posted August 30, 2009 Share Posted August 30, 2009 Trileptal helped my child. Good luck! Quote Link to comment Share on other sites More sharing options...
Guest Posted September 2, 2009 Share Posted September 2, 2009 My ds (age 7) was diagnosed w/absence in February. He has dozens a day, some lasting as long as 40 seconds. Upon the pediatric neurologist's recommendation, we have tried Depakote and Zarontin (sp) (not at the same time - first the Depakote and when that wasn't working out well, we switched to Zarontin), starting off with smaller doses and working our way up. But, even at small doses, he became so tired that he spent much of the day laying on the couch. He was also very cranky. The Zarontin also gave him stomach aches and dizziness. Because the dosage was still low, he was still having seizures, too. So, under the neuro's reluctance guidance, we have taken him off everything, and of course, he is still having siezures. Have any of you tried anything natural that has helped? All of the prescription meds have such horrid side effects that it almost seems better to just work around the seizures, even though they are so frequent. Any advice? My dss(10) was diagnosed with absence seizures when he was 4 years old. We had to drive eight hours to see his neurologist who did numerous EEG's and prescribed every possible medication to him. He was literally having hundreds of seizures that lasted approx. 3-10 seconds everyday. NOTHING they did worked with him. He continued to have hundreds of seizures everyday, regressed dramatically, and had horrible side effects from the medications. This went on for five years. Last year I was desperate to help him and I had been hearing all sorts of recovery stories from people who ate a Raw Foods Diet. Raw Foods Diet is only eating fruit, vegtables, nuts, seeds, and sprouted grains. It sounded very unusual to me...but I was desperate for something to help him. We started the diet overnight...and about three months later he was seizure free for the first time in five years. From all my research I believe his seizures were due to a build up of toxins in his body polluting his brain. The Raw Foods Diet is very powerful at detoxing the body. We are now following a combination of Body Ecology Diet and a Raw Foods Diet. I HTH! Our ds has been seizures free for a year now. Quote Link to comment Share on other sites More sharing options...
EKS Posted September 2, 2009 Share Posted September 2, 2009 He is the one that will get dopey on Tylenol anyway... This is totally off topic, but I have always noticed that I get sleepy when I take Tylenol but I just thought that I was imagining it. Is this really something that happens to other people? Quote Link to comment Share on other sites More sharing options...
Sasharowan Posted September 3, 2009 Share Posted September 3, 2009 This is totally off topic, but I have always noticed that I get sleepy when I take Tylenol but I just thought that I was imagining it. Is this really something that happens to other people? This happens to my ds8. None of the rest have this reaction. He seems to be super sensitive to meds. Quote Link to comment Share on other sites More sharing options...
dragons in the flower bed Posted September 3, 2009 Share Posted September 3, 2009 Have any of you tried anything natural that has helped? All of the prescription meds have such horrid side effects that it almost seems better to just work around the seizures, even though they are so frequent. Any advice? I have never found anything natural that works. Are these the first two meds you've tried? It's true that they all have side effects, but not for everyone; also, side effects like lethargy can lessen over time. I'm surprised your doctor doesn't want to keep trying different anticonvulsants until he finds the one that your child doesn't react badly to. For example, Phenobarbital and Depakote are horrid for me, one causing extreme hyperactivity, the other apathy and lethargy. But Tegretol works. It took my body five weeks to adjust to it, but it does work okay now with minimal side effects. I'd advise you to keep trying because the more seizures he has, the more he will have. Quote Link to comment Share on other sites More sharing options...
Laurie Posted September 3, 2009 Share Posted September 3, 2009 Just so you know, I don't have any experience with seizures. I remember seeing a report on tv about the Ketogenic diet for epilepsy. The children were being very carefully monitored by doctors and dieticians as they started the diet. Magnesium is also supposed to be helpful so maybe that might be part of the success of the raw diet that Summer described. I keep a list of some good food sources on my refrigerator: dark green leafy vegetables, whole grains, nuts, legumes, poultry, sunflower seeds, Brazil nuts, peanut butter, cashews, almonds, oats, molasses, hot/tangy spices, cocoa, wheat germ, sea salt (I found my info. in The Magnesium Miracle by Carolyn Dean MD, ND) Quote Link to comment Share on other sites More sharing options...
momto4kings Posted September 5, 2009 Share Posted September 5, 2009 My in-laws were doing masking with their son, as described in "What to do about your brain-injured child". He has been seizure free for many years now. Quote Link to comment Share on other sites More sharing options...
Mom22ns Posted September 7, 2009 Share Posted September 7, 2009 My son had success with Tegretol and when it made him too sleepy, we switched to the extended release version Carbitrol for absence seizures. Seizures do feed each other as a pp mentioned and they can also cause loss of memory, loss of developmental stages... so many losses. If you want to try natural processes, try. But try hard and fast. If they don't work, get back to a really good pediatric neurologist and get help. We are organic and for autism we spent many great years GFCF and it really helped. I don't want you to think I don't support natural remedies - I do. I just saw the damage that seizures did to my child and how much recovery time it took. Be careful. Quote Link to comment Share on other sites More sharing options...
Guest jackdean Posted October 15, 2010 Share Posted October 15, 2010 Hi ottakee, Please have a look at side effects of Tegretol. You will be able to figure out if are affected with it. http://www.internationaldrugmart.com/tegretol.html Quote Link to comment Share on other sites More sharing options...
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