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New Study: Traditional & Non-Traditional Treatments for Seizures with Autism

Eeg Countless families are rocked by the combination of autism and seizures.  More research is welcome indeed. What has been your experience with anti-epileptic drugs for your child's seizures? Click HERE to  read the full document.

Traditional and non-traditional treatments for autism spectrum disorder with seizures: an on-line survey. Richard E Frye Swapna Sreenivasula< James B Adams BMC Pediatrics 2011,37doi:10.1186/1471-2431-11-37

Abstract (provisional)

Background

Despite the high prevalence of seizure, epilepsy and abnormal electroencephalograms in individuals with autism spectrum disorder (ASD), there is little information regarding the relative effectiveness of treatments for seizures in the ASD population. In order to determine the effectiveness of traditional and non-traditional treatments for improving seizures and influencing other clinical factor relevant to ASD, we developed a comprehensive on-line seizure survey.

Methods

Announcements (by email and websites) by ASD support groups asked parents of children with ASD to complete the on-line surveys. Survey responders choose one of two surveys to complete: a survey about treatments for individuals with ASD and clinical or subclinical seizures or abnormal electroencephalograms, or a control survey for individuals with ASD without clinical or subclinical seizures or abnormal electroencephalograms. Survey responders rated the perceived effect of traditional antiepileptic drug (AED), non-AED seizure treatments and non-traditional ASD treatments on seizures and other clinical factors (sleep, communication, behavior, attention and mood), and listed up to three treatment side effects.

Results

Responses were obtained concerning 733 children with seizures and 290 controls. In general, AEDs were perceived to improve seizures but worsened other clinical factors for children with clinical seizure. Valproic acid, lamotrigine, levetiracetam and ethosuximide were perceived to improve seizures the most and worsen other clinical factors the least out of all AEDs in children with clinical seizures. Traditional non-AED seizure and non-traditional treatments, as a group, were perceived to improve other clinical factors and seizures but the perceived improvement in seizures was significantly less than that reported for AEDs. Certain traditional non-AED treatments, particularly the ketogenic diet, were perceived to improve both seizures and other clinical factors. For ASD individuals with reported subclinical seizures, other clinical factors were reported to be worsened by AEDs and improved by non-AED traditional seizure and non-traditional treatments. The rate of side effects was reportedly higher for AEDs compared to traditional non-AED treatments.

Conclusion

Although this survey-based method only provides information regarding parental perceptions of effectiveness, this information may be helpful for selecting seizure treatments in individuals with ASD.

Lee Silsby logo 09 The treatment category is sponsored by Lee Silsby, the leader in quality compounded medications for autism.

Comments

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My daughter is 13 years old and suffered her second grand mal seizure.She was diagnosed with autism at the age of three. Her first seizure occured when she was 5 years old and hasnt had any in 8 years. Recent eeg showed underlying seizure disorder/epilepsy. We have opted not to put her on seizure meds due to the long lapse between her seizures and worry about side effects as well. Can anyone offer any alternative advice regarding therapy and treatment please?

I agree Suzanne, and that should include EEG's as they sleep.

My son was HFA. At age four he regressed and I was told by his ped "that's just the Autism" for two years. At age 7 his behavior therapist told me to ask for an EEG. Turns out he had an abnormal EEG, Petite Mal Epilepsy 24 hours a day, affecting the entire brain. By this time he was severely Autistic. Valproic Acid and Prednisone have been his miracle (yes, we did try biomed). His Autism is now moderate. IMO, every child with the Regressive form of Autism deserves an EEG. Period. Pediatricians need to get educated on this issue NOW.

My son has seizures at night. We are able to control the seizures by:
1. sticking to strict bedtime schedule and not letting him get too tired.
2. gfcf diet
3. eliminating processed foods and thus potential glutamates in those foods
4. calming supplements at bedtime: GABA, valerian, chamomile, vit E, melatonin

This combination has allowed us to keep him off AEDs.

At his worst, my grandson was fitting all the time; (this showed up on ECG scans). Medication for his epilepsy helped, but with small children the exact dosage is more or less a 'trial and error' business. Too much and he was a 'zombie' at school. Too little and the fits continued. I cannot relate the name of his medications to any of the names above, (We live in the UK), but I expect they are chemically similar.

Eliminating gluten and casein from my grandson's diet made an immediate difference, both to the frequency and severity of his epileptic fits. This was recommended at the time by paediatric clinicians, who referred us to dieticians. We soon realised that monosodium glutamate and artificial sweeteners like aspartame also promoted fits and associated behavioural problems, as did other additives like food colorants.

I realise that there is presently a great deal of bad publicity about what our 'learned' medical and pharmaceutical establishments call 'alternative' measures. This is just another attempt to protect the interests of the big pharma and chemical industries.

Gluten free diets have always been prescribed for coeliac disease. Rice and corn flours are perfectly acceptable and healthy alternatives for wheat flour, and there is no reason for anyone to criticise parents for feeding children these alternatives.

Casein is another matter entirely!! Milk for children is almost as much an establishment 'religion' as are the vaccines!! My advice to parents contemplating removing milk products from their children is to seek proper professional dietary advice before proceeding with this. Parents get told by the medical establishment that they are depriving their children of calcium, but this is nonsense!! Soya milk substitutes for children are usually fortified with calcium, (check the label), and this very common element is present in a wide variety of foods, not just dairy derived ones. In any case calcium deficiency is usually associated with vitamin D deficiency NOT calcium deficiency. This is why professional advice about the child's ENTIRE diet is so important.

As far as food additives are concerned, they are very hard to avoid in processed foods and drinks marketed at children. This is very BIG business and even my grandson, now 18 and an adult, adores Coca Cola, even though he suffers after it; but he is old enough to make his own decisions now!! He still has epilepsy, and always will have. It is controlled by medication and monitored by the neurologists.

I hope this is helpful.

AGE 2- uses opposite word of what he means (says inside instead of out, Mom meant Dad, he/she etc...), night terrors, Mom diagnosed w/ thyroid problem. Around AGE 3- outbursts/O.C. , head cracking or stabbing sensation, eating difficulty (obstacle in throat?), "wiggley legs", temporarily can't raise himself to sitting (neck?), sensitive to light and sound. AGE 3- weak fine motor skills. AGE 4- vocal tic, night terrors with either urge to urinate or throat problem waking him up, chronic throat problems (no strep on testing), throat hurts when eating and when emotional, attention problems at school.

AGE 5- MRI and EEG testing show small brain cyst, small tumor etc... and seizure activity so started on drugs
Started on depakote (valproic acid) which the neurologist keeps him on in combination with other drugs through out what turned out to be 2 years of drug use.
Learn from parents about food allergies so tell husband to ask neurologist to test- tested for everything, but food...misunderstaning.
Valproic Acid seems to halt absent seizures and night terrors, but after 1/2 a year we find out the reason he is hungry but has difficulty eating was because valproic acid made his food taste bad, overly tired- wants to be expelled because teacher won't let him rest, frustrated easily and weeping when printing name, urgent and frequent urination, looks sad in eyes- Bad Blood work- (high ammonia) so I decided to stop folic acid sup. that neurologist started him on a month ago, neurologist later agrees. Start Valproic Acid w/ Tegretol, but side effect to tegretol- rash where sun hits. 1 1/2 months go by just on valproic acid and then we have 3 major days of new seizure activity - when emotional he has problem lifting head when trying to sit up, next day when emotional running around clockwise while his eyes were fixed looking to his far left- dizzy, but fun for him, third day when eating snack says killing my brain, killing my brain and laughs embarrassed of what he said- he explains his head was cracking, but not
upset (not painful) like 2 prior episodes during pre-school and 1 at home- neurologist says these are seizure headaches...same evening has unusual and bad headache (Advil), tingley legs and all over tingling and he thinks he can't walk, afraid, hungry so eats, but asked me to feed because of trouble lifting arm and then feels better, later feels vibrations in head that tickle him. He feels so good he starts running around playing, but again has a severe head cracking sensation and later a bowel movement. Next day he feels the vibraions in his head again during breakfast and then he is better. The fourth day the neurologist reduces the valproic acid and adds Topomax and schedules EEG and put on diet (Take 3 big gulps of gatorade in the morning before rising and lay down for another five minutes. No chocolate or caffeine. Eat every 2 - 3 hours. Carry a bottle of gatorade around at all times. Give a big snack at night like ice cream (high fat - has to do with adrenaline))
Find out he has homocystiene mutation
1 week later results from a test I requested the pediatrician do comes back- has indicator for celiac so get referral to GI Specialist, but Ped. calls strongly urging us not to go through w/ meeting w/ GI specialist. I explain that celiac could cause the seizure activity and he had all the other symptoms. The G.I. specialist's blood work comes back negative for celiac.
A few months later he is constipated and referred to neuro surgeon because anti-seizure drugs are not treating seizure activity, he is also put on lamictal, topamax and depakote.
One time he was eating and emotional and could not lift his head off his shoulder for a couple minutes.
A couple months later switched to depakote and lamictal only.
Unable to learn at age 6 in Kindergarten (was held back in pre-school) and increasingly aggressive behavior.
At neuro surgeon appt. the Dr. is not convinced that he is having seizures and doesn't think he should have been put on drugs in the first place. Makes appt. for a 2 day video EEG off drugs to capture tic and abnormal brain activity, but EEG comes out normal and I notice the day before this EEG he is ticing severely after drinking milk so I decide to stop giving him milk (severe allergy???)
He experienced his last tic during that EEG and has been off drugs and milk ever since (3 years). Pediatrician says it is O.K. to stop milk because he should get enough calcium from his rounded diet. After that EEG he had a complete recovery. He no longer requires an IEP as of 2 weeks ago. He just turned 10 and has not been to a Dr. for 3 years. He never regressed into Autism Spectrum nor ADD.

What this survey found is exactly right from what I obseverd from my personal experience. Side effects of seizure medicines were all significant.

My son's neurologist - NOW - NOW - NOW says my son will be epileptic for the rest of his life. This is after being told again, and again, and again, and again between the ages of 2 to 17 he was not epileptic.

I would have put my son on the ketogenic diet as a child, if I had known for sure. I even went as far as buying the book, reading it through, and putting him on it half way. But to do a diet like this you have to have the support of all the family and it is hard to get that support when the docs says it febrile seizures or no seizures at all - you crazy mother! Nope, no dignosis of epilepsy, here! I think the ketogenic diet as a child would have cured him.

1st medicine phenyol barbitol; After his first all night long seizure as an 11 month old, and an EEG showing up abnormal brain activity as he fell asleep he was put on this. It made him hyperactive. He was on the go just to be on the go. However, It did not stop him from having his second grand mal hour long seizure, about six weeks later (after strange spike in temperature, out of nowhere) It was the second go around for atypical Kawasakis. He stayed on the same dose of phenyol barbitol untill the age of four years old. As soon as he came off of it, there were lots of strange episodes of not responding when spoken to and starring, biting his tongue, - this only became worse the older he got- increasing untill he was jerking almost constantly.

2nd medicne Depokote: Age 17 finally had an EEG that showed abnormal brain activity as he went to sleep (How many morons are in the medical profession anyway? ) The neurologist wanted to put my son on Depokote; and I refused Depokote because I read enough about my husband's acquired mitochondrial cytopathy to know they warned not to use it. Plus, I had seen it results on my mother-in-law. I walked out of his office with out any medication and scared.

3rd medicine Dilantin: My son was put on Dilantin, after he almost fell down the stairs a few weeks later after the neurologist let me walk out of his office without anything. I guess he had time to look it up about the Depokote. Dilantin worked wonderfully. He was on it for two years, before we started trying to get him off of it. There were no other behavioral side effects. I got to see my son for who he was meant to be. He was great! It does however effect them physically instead of mentally. Dilatin does coarsen the facial features, swells the gums, weakens the bones, gives a hump back if you continue to use it. Well it had swelled up his gums, and I do think that his lower jaw grew more than it should have.

4th medicine zonnagram: Zonnagram was the next try.
It stopped his seizures just fine.
He lost weight and looked great too!
His attention was great and did not need attention deficit medicine.
However:
It made him very irratible, so irritable that he actually talked a lot, and for once I just soon he was quiet because he would say some very hurtful things.
He was also very depressed. As he slowly stopped the Dilantin and slowly took more zonnagram - the more depressed he became. He became so irritable and depressed that he acutally thought that maybe our new house was on an Indian burial ground and he could just feel the evil. He asked all the time what I had done to his sweet mother??? I am not sure what he thought that perhaps I had taken over his mother's body, or I was no longer his mother, or an evil spirit had taken over his mother's body or what???? Though he would never ever hurt me, my husband and parents were concerned. After he was on the full dose for about a week he told me that if he had to feel like this that there was no point in living. He said that it was worse when he was at home, but not so bad when he was away. I told him that was how depression works, when you are at home and not distracted, depression is worse. That was why people that have lost someone and are grieving are not suppose to be left alone.

5th medicine Lamicatal: lamictal was great, this was after zonnagram. After he had been on it for a couple of weeks he told me one morning that he was able to let go of all his anger and it felt great. However, one morning he took his medicine and he complained of his skin on his neck burning, prickley. All of his neck right on down to his chest and back was very red - including his ears. He took it again that night and thirty minutes later his neck again turned red and we went back immediately to Dilantin. It is Steven Johnson syndrome and if he kept taking it he could die, or get very sick and end up in the hospital. However, his sister has been on it for a year, and so far she has had no problems with it.

6th medicine Keppra: When changing from Dilantin to Keppra - the more he took of Keppra and the less of dilantin the more myclonic jerks he had. God was with me here - that is all I can say. Bible, "First James" says that if you ask God for wisedom he will give it - well God must have in this case.
I stopped the Dilantin all together went directly to Keppra - no slowly going off of one and slowly going on the other. He did fine???!!!! Now why I would think that putting my son fully on a medicine that the more he took of it, the more break through seizures he was having; and off the Dilantin that did control his seizures, I have no idea! Maybe because the neurologist said this was that last drug he had to give??? But it turned out that the combination of Dilantin and Keppra was the problem, for once he was on all Keppra he was fine. What side effects he has??? Well I am not sure what his real personality is anymore. He is not as laid back like he was at 17 or 18, he is also more obsessed with his interest. He gets aggravated (not really mad) easier. Some
times it makes him irritable but not always. I think he has aneixty that he keeps hidden, he thinks a man should not show fear, but he is anxious about life in general, so he likes to stay in his room and at home.
There are medicines for anxiety I am told - but we are not going there.

We are on the Atkin's diet and have been for four years. We were for a very long time on the 15 carbs a day then finally on the 20, now we are more like on slow release carbs.

Everyone is diffent or so they say. But I hope this information may help some one out there.

i would love to hear more my daughters have seizures and autism she is 9 any info would help thank so much

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