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HELP PLEASE FOR MY 9 YEAR OLD SON!

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!

Comments

Re: HELP PLEASE FOR MY 9 YEAR OLD SON!

I'm sad to hear about your son, and sad that no one has written back yet. I'm mom to a 10-yr old boy with epilepsy.

 

I understand why your paeditrician wants your son medicated -- he is worried that the seizures will get worse and that your son might get hurt. However, I also understand your fears about Keppra. My son has never taken Keppra, but it has a reputation for making kids super irritable. My son was on something else (gabapentin) which caused similar fits of rage and they were a stuggle to deal with. Why did the physician choose Keppra as the first-line drug? I thought that trilepital was the usual first line drug for children. 

It make take some time before the Keppra gets the seizures under contorl. Until then, make sure he gets as much sleep as possible (i.e. early bedtime) , stays hydrated and try and keep him as calm as possible. 

(try to keep yourself as calm as possible as well)

 

Good luck

 

 

Re: HELP PLEASE FOR MY 9 YEAR OLD SON!

Hi, my daughter now 11 years old create her first grand mall after huge stress out we start from trileptol and her behavior dramatically change: from friendly smart lil angel she became aggressive(hit children smaller than her on playground,), anexaity(scary of a lot of thing), slow on her school work, her memory damage, but worst of all she became a cry baby depressed, sometimes she cry for 1 hour strait and we can not stop her crying(her record of crying was 5 hours). more then 4 years we were on trileptal periodicity increasing the dosage,when she was in 4th grade she refused to go to school due of her anexaity, we were on home schooling for one year, finally i was able to change our neurologist, the new one add depacen that improve her behavior and explain that all behavior problem was a side effect of trileptal, but trileptal help stop her seizure. Also while you are waiting for appointment it is really important sleep, stress free and its maybe help some diet try modify atkins diet for seizure(google it)
my best wishes

Re: HELP PLEASE FOR MY 9 YEAR OLD SON!

Rhoni - we were in your shoes about 8 years ago with our then 5 year old daughter.  Her epilepsy sounds very close to what Alex is experiencing.  She started with a giggle and turning her head, and it developed into full body and uncontrolled seizures after 4-6 weeks.  For the most part, her EEGs and MRI were normal (although the MRI showed a tiny area of "undeveloped" brain tissue).  It took a few months under the watchful care of Dr. Ajay Gupta at Cleveland Clinic to find the right meds  Keppra was horrible for her and didn't seem to work - we took her off of it immediately.  Trileptal (with Zonegran added after) was the combination that seemed to work.  Her seizures ended altogether 4-6 weeeks after she was in therapeutic range.  I'm not sure how to privately get you our contact information - if you desire we would certainly welcome a phone call from you.  Good luck.

Re: HELP PLEASE FOR MY 9 YEAR OLD SON!

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.

Re: HELP PLEASE FOR MY 9 YEAR OLD SON!

Hi Jsolem, I'm amazed with the knowledge you have.

Anyways, my brother who is 22 this year, had his first seizure like 6 years ago. Before his grand mal comes, he will have those signs like hands and legs twitch and sound made from him. So, the moment he falls to sleep, his seizure kicks in which usually last for around 5-10 minutes.He is on Epilim with 3 times a day and each time 3 dosage. However, my family and I want to reduce his intake and look for Chinese medical.

I must say although the Chinese medical helps but the moment he reduce his Epilim dosage, his twitch because his hands keep shaking if he takes too much. However, the Chinese Medical doctor did remind us that he cannot be expose to the sun for long or heat (exactly like what you mentioned), cannot smell leather or new paint (that will spark his brain electric), cannot take coffee, fried food and heat based food (that will cause the heat in his body) and that's all I could think of.

What we notice is that he loves playing video games but he can't play too frequently because of his epilepsy. He can't get too fatigue or exhausted but he is now active in basketball (which he learns to define his limit). He must have sufficient sleep and quality ones. Allergies... we still need to find out but so far so good.

Now, he is graduating but we fear that he would not be able to cope with the working world out there. We want to bring him for family travel but fear that the airplanes surrounding will affect his brain's electrolytes. We don't know what to do.

The only thing I could do is to let him be happy, support him and he is definitely a fine boy. Yes, I won't quit searching for the answer.

P/S: I'm now looking if surgery would help him.

Re: HELP PLEASE FOR MY 9 YEAR OLD SON!

Have you asked your doctor to appeal to the neurologists for an emergency appointment? One thing you can do, is go to the ER when he is having a seizure, or right after. If there is enough of a post-ictal, they might admit him and then you would get a neuro consult. I know it is hard. And most doctors honestly only know what they learned in med school about epilepsy, which is really not much.

Re: HELP PLEASE FOR MY 9 YEAR OLD SON!

My daughter developed seizure disorder following a round of vaccines during her third set of shots in her infancy.  They are triggered by her allergies (she has MANY allergies including carrots, rice, wheat, soy, squash, bell peppers, cows milk), heat and stress. I have heard that circulation plays a role in epilepsy, and when there is inflammation in the brain, this may trigger seizures. Make sure you are giving your child plenty of water, fresh food and not packaged foods. If he is allergic to any dyes, food additives or preservatives, this may also cause problems. Plenty of sleep as well. My advice to Mom is to find the triggers for his seizures, make sure he's getting enough rest and take time to make sure he is not eating any packaged food.  Monitor his meals and see if there seems to be a pattern after he eats a specific thing.  It is tedious and time consuming, but well worth it.  I suffered a lot to see my daughter going through this and she is currently on Keppra.  I have to get up early every morning and make her a fresh meal before I send her off to preschool and I go off to school. Dinnertime too. No breads whatsoever. I had to cut sugars out of her diet, and at school make sure she is not given anything when there are treats for other kids.  I have to provide alternative snacks for her.  I have also heard that coconut oil and omega-3 fatty acids help, as well as B-vitamins for the negative side effects of Keppra.  Chia seeds and ground flax seed are excellent sources of Omega-3 and Omega-6 and can be added to healthy shakes.  I would try taking wheat and milk out of the diet first, as these are major common allergens in our diet.  Don't let anyone make you feel like a crazy mom, empower yourself with the information available, and trust your mom instincts.  Doctors don't always have the answers and sometimes a mother knows best.  Good luck!

Re: HELP PLEASE FOR MY 9 YEAR OLD SON!

My daughter developed seizure disorder following a round of vaccines during her third set of shots in her infancy.  They are triggered by her allergies (she has MANY allergies including carrots, rice, wheat, soy, squash, bell peppers, cows milk), heat and stress. I have heard that circulation plays a role in epilepsy, and when there is inflammation in the brain, this may trigger seizures. Make sure you are giving your child plenty of water, fresh food and not packaged foods. If he is allergic to any dyes, food additives or preservatives, this may also cause problems. Plenty of sleep as well. My advice to Mom is to find the triggers for his seizures, make sure he's getting enough rest and take time to make sure he is not eating any packaged food.  Monitor his meals and see if there seems to be a pattern after he eats a specific thing.  It is tedious and time consuming, but well worth it.  I suffered a lot to see my daughter going through this and she is currently on Keppra.  I have to get up early every morning and make her a fresh meal before I send her off to preschool and I go off to school. Dinnertime too. No breads whatsoever. I had to cut sugars out of her diet, and at school make sure she is not given anything when there are treats for other kids.  I have to provide alternative snacks for her.  I have also heard that coconut oil and omega-3 fatty acids help, as well as B-vitamins for the negative side effects of Keppra.  Chia seeds and ground flax seed are excellent sources of Omega-3 and Omega-6 and can be added to healthy shakes.  I would try taking wheat and milk out of the diet first, as these are major common allergens in our diet.  Don't let anyone make you feel like a crazy mom, empower yourself with the information available, and trust your mom instincts.  Doctors don't always have the answers and sometimes a mother knows best.  Good luck!