HELP PLEASE FOR MY 9 YEAR OLD SON!

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My son Alex began small twitches in his left hand & giggled for a few seconds. After a week it grew into 10-15 second seizures- his left hand up in the air with extreme tension/muscles & shaking while he made sounds like giggling/hyperventilation. In week 2 his both arms flew up, shaking more, seizures more frequent & he began stumbling backward & sometimes falling. After week 3 his entire upper body shakes- his arms out & flexed with so much tension it's like he's hanging from a monkey bar trying to pull himself up. He falls every time and his legs are beginning to extend out & shake also! They happen 4-9x a day plus 2-3 in his sleep as well and he hits his head nearly half the time he falls! WE NEED HELP! He has had a EEG & MRI as well as blood work that has come back as normal. His sleep deprived EEG results haven't come back yet but I expect them to be "normal" as well. I fear these seizures are getting worse. He has been on a low dose of Keppra for 2 weeks- we just doubled his dose a week ago now but there has been no improvements whatsoever. I fear these Keppra side effects as much as the seizures themselves- memory loss, depression, fits of rage etc. He has had some emotional outbursts and crying but its hard to tell if it's due to the stress & nightmare of what he & our family are going through. We live in Ontario Canada- there is a 6 month wait to even see a Neurogist- until then we are expected to drug our child without any diagnosis whatsoever- does this make sense? The paediatrician knows very little & has nothing but a prescription pad! **Has anyone had their healthy happy child just mysteriously develop epilepsy? He is a twin & his sister hasn't any of this. **Has any natural alternative therapies helped? We are desperate for answers.. this fear and anxiety is crippling our family and as parents our fear is certainly not helping our son. We need help!

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Re: HELP PLEASE FOR MY 9 YEAR OLD SON!

Submitted by jsolem on Wed, 2013-05-01 - 23:37

Rhoni -

My daughter actually had night-time seizures (primarily) and they wanted to just pop her on meds right there in the emergency room the first time she was there. I declined the medication and proceeded to check into things that may cause seizures and things that may prevent them, or lessen their effect. This is what I found and hopefully it will help you some.

She seemed to have seizures when her body was unbalanced in electrolytes. When she did a lot of activity outside or in school I would give her one of these things: pedialyte, pedialyte popsicles, electrolyte water, HEED runner's electrolyte, and best of all (but many don't like it) Coconut water (not milk).

She had seizures when she would get too tired or stressed. So I started putting her to bed much earlier, having her take naps if she was going to be up late, giving her massages, and taking her to a good, calm, quiet, Healing Touch practitioner for relaxation (also the one that was able to detect that my daughter's electrolytes were off)

Most of us are Omega-3 fatty acid deprived - that controls many things in our bodies. This is something important for seizures and has been shown to remove many problems of the body including inflammation. It should be a purified form - like one by Nordic Naturals that includes both EPA and DHA together.

I also learned that most of our food is enzyme deprived. Which is what allows our food to be digested and the minerals our body needs to be absorbed. There are chewable enzymes available at the drug store. Probiotics is another one.

I saw was the amazing effect the Adkins diet had on some people - I started adding more plant proteins to my daughters diet, in shakes, in salads, wherever I could get them in. And especially before potentially stressful times. It seems to hold her blood sugar more steady, without the fast drop that could cause more stress in her body and brain. (We all know how a sugar rush and a sugar crash feels.)

Then the more research I did - the more I saw and heard that many seizures are occurring because there is something stressing the body, something that the body can't handle, and so the electrical storm goes off in the brain to shut the body down and give it a rest. It could be mineral imbalance, electrolyte imbalance, allergy, heart murmur, sleep apnea (from enlarged tonsils,) head injury and maybe an undetected concussion at some point. It could be a low simmering infection somewhere the body. The seizure seems to be a clever mechanism of the body telling us there is a problem that needs to be addressed somewhere.

My daughter's main trigger seems to have been her enlarged tonsils and sleep apnea, which puts stress on the whole body. When she started her main growth spurt at age 8, and she was tired because it was the holidays, and she was getting too much junk food (sugars and fats) because of the holidays, it was the perfect storm for her to get a form of epilepsy call Benign Rolandic (BRE.) When I think back to the year before her seizures started, she had a round of strep at the beginning of the year that put her in the hospital because her tonsils were already so big that, with the strep, grew so large they closed off her airway and they took her by ambulance. This last August 2012 (age 10) we had her tonsils removed just to keep the threat of another hospital visit away and her seizures stopped completely. She no longer snores and she breathes so quietly that I have to go in to check on her, putting my hand really close to her mouth so I can feel the breath coming out. *My point here is - check for physical stuff on your own with the regular pediatrician. Blood work, check the heart, check the throat, check for apnea, check for nutrition. Keep checking everything you can possibly think of until you find what is causing the brain to short circuit. All the nutritional stuff just helps keep the seizures down to a minimum. I don't know - it may help some seizures stop completely, especially if they are being caused by a severe allergy to something.

Here's a little bit of peacefulness sent your way and lots of prayers for a solution to be found. And also for any desperate parent that may be reading this - I know you will find the answer. Don't ever quit searching on your loved one's behalf.

Rhoni - My daughter actually had night-time seizures (primarily) and they wanted to just pop her on meds right there in the emergency room the first time she was there. I declined the medication and proceeded to check into things that may cause seizures and things that may prevent them, or lessen their effect. This is what I found and hopefully it will help you some. She seemed to have seizures when her body was unbalanced in electrolytes. When she did a lot of activity outside or in school I would give her one of these things: pedialyte, pedialyte popsicles, electrolyte water, HEED runner's electrolyte, and best of all (but many don't like it) Coconut water (not milk). She had seizures when she would get too tired or stressed. So I started putting her to bed much earlier, having her take naps if she was going to be up late, giving her massages, and taking her to a good, calm, quiet, Healing Touch practitioner for relaxation (also the one that was able to detect that my daughter's electrolytes were off) Most of us are Omega-3 fatty acid deprived - that controls many things in our bodies. This is something important for seizures and has been shown to remove many problems of the body including inflammation. It should be a purified form - like one by Nordic Naturals that includes both EPA and DHA together. I also learned that most of our food is enzyme deprived. Which is what allows our food to be digested and the minerals our body needs to be absorbed. There are chewable enzymes available at the drug store. Probiotics is another one. I saw was the amazing effect the Adkins diet had on some people - I started adding more plant proteins to my daughters diet, in shakes, in salads, wherever I could get them in. And especially before potentially stressful times. It seems to hold her blood sugar more steady, without the fast drop that could cause more stress in her body and brain. (We all know how a sugar rush and a sugar crash feels.) Then the more research I did - the more I saw and heard that many seizures are occurring because there is something stressing the body, something that the body can't handle, and so the electrical storm goes off in the brain to shut the body down and give it a rest. It could be mineral imbalance, electrolyte imbalance, allergy, heart murmur, sleep apnea (from enlarged tonsils,) head injury and maybe an undetected concussion at some point. It could be a low simmering infection somewhere the body. The seizure seems to be a clever mechanism of the body telling us there is a problem that needs to be addressed somewhere. My daughter's main trigger seems to have been her enlarged tonsils and sleep apnea, which puts stress on the whole body. When she started her main growth spurt at age 8, and she was tired because it was the holidays, and she was getting too much junk food (sugars and fats) because of the holidays, it was the perfect storm for her to get a form of epilepsy call Benign Rolandic (BRE.) When I think back to the year before her seizures started, she had a round of strep at the beginning of the year that put her in the hospital because her tonsils were already so big that, with the strep, grew so large they closed off her airway and they took her by ambulance. This last August 2012 (age 10) we had her tonsils removed just to keep the threat of another hospital visit away and her seizures stopped completely. She no longer snores and she breathes so quietly that I have to go in to check on her, putting my hand really close to her mouth so I can feel the breath coming out. *My point here is - check for physical stuff on your own with the regular pediatrician. Blood work, check the heart, check the throat, check for apnea, check for nutrition. Keep checking everything you can possibly think of until you find what is causing the brain to short circuit. All the nutritional stuff just helps keep the seizures down to a minimum. I don't know - it may help some seizures stop completely, especially if they are being caused by a severe allergy to something. Here's a little bit of peacefulness sent your way and lots of prayers for a solution to be found. And also for any desperate parent that may be reading this - I know you will find the answer. Don't ever quit searching on your loved one's behalf.