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People are always asking me on my Autism Daddy Facebook page & blog…
Why don’t you try the GFCF diet for Kyle’s autism?
Have you considered the Ketogenic diet for Kyle’s epilepsy?
And for a few years this story was making the rounds on social media
and after seeing this people were always asking whether I would consider marijuana to treat Kyle’s autism.
And more recently people are always sending me links to the Charlotte’s Web story like this one from CNN.com
Marijuana stops child’s severe seizures
 |
| http://www.cnn.com/2013/08/07/health/charlotte-child-medical-marijuana/ |
and asking why we don’t try medical marijuana for Kyle’s seizures.
And I’ve touched on each of these… the GFCF diet, the ketogenic diet, and marijuana for autism & epilepsy… in previous blog posts, but I wanted to write a more “official” one where all my opinions and thoughts would be in one place.
So here goes…
GFCF Diet for Autism
We tried the Gluten Free Casein Free diet for almost 18 months when Kyle was about 3 years old. I’ve written about this before. We saw absolutely, positively no improvements. In fact it was while he was on the GFCF diet that he regressed and went from mild PDD-NOS to severe, classic autism. Do I blame the GFCF diet for that huge, late regression? No. Do I think the GFCF diet helps some autistic kids? Yes. But as I’ve written before (read):
Autism Is Like A Cough….What I mean by that is, there’s probably 20 things that make you cough (cold, flu, pneumonia, bronchitis, etc). And each of those 20 things have a different treatment, a different way to make that cough disappear.
In the same vein I think there may be 20+ things that bring on autism, or autistic symptoms or whatever you want to call it. And there may be 20 different ways of treating that autism.
And we spent the better part of 4 years trying to find the right treatment to “unlock” my son Kyle and help him make some improvements.
We tried the GFCF diet for over a year (close to 18 months according to the wife’s recollection) and saw no improvements. So our kid doesn’t have the Gluten / Casein kind of autism. We crossed that off the list.
So after 18 months on the diet it was obvious that Kyle was not the kind of kid who’s cough can be helped by the diet. And before you go there… yes, we were strict. For those 18 grueling, expensive months the king was completely Gluten Free & Casein Free and zip, zilch, nada, no improvements whatsoever. Plus it was around the end of the GFCF experiment that Kyle starting losing weight and having feeding issues (read). So GFCF Diet? Been There, Done That, Bought the Tshirt…. Not going back there again.
Ketogenic Diet for Epilepsy
From wikipedia:
The Ketogenic Diet is a high-fat, adequate-protein, low-carbohydrate diet that in medicine is used primarily to treat difficult-to-control (refractory) epilepsy in children. The diet forces the body to burn fats rather than carbohydrates. Normally, the carbohydrates contained in food are converted into glucose, which is then transported around the body and is particularly important in fuelling brain function. However, if there is very little carbohydrate in the diet, the liver converts fat into fatty acids and ketone bodies. The ketone bodies pass into the brain and replace glucose as an energy source. An elevated level of ketone bodies in the blood, a state known as ketosis, leads to a reduction in the frequency of epileptic seizures.
Basically it is an extremely restrictive diet that helps reduce seizures in about half of the epilepsy patients who try it.
In my blog post about our decision to get the VNS surgery for Kyle’s seizures (read) I explained why we won’t try the Ketogenic diet on the king.
And I know what you’re thinking and many have asked. “Have you tried the Ketogenic diet?” “Wouldn’t you try the diet before opting for surgery?”
And my answer is no, not for Kyle. If you’ve been reading my page for awhile you’ll know that Kyle had major eating issues. He stayed the same weight for almost 3 years and his diet was extremely limited. And we had to force him to eat every day and it was excruciating.
But since November 2012 he’s put on over 25 pounds, probably mostly due to a side effect of one of the anti seizure meds he’s on (depakote).
This is a side effect we welcomed with open arms! The king now has an appetite! He’s trying new foods! He looks the healthiest he’s looked in years!
To put him on the Ketogenic diet, which is one of the most restrictive diets out there (kinda like a much much stricter, modified Atkins diet) would be tough.
If my kid was verbal and understood why I was denying him all the foods he loved it would be extremely difficult. To deny my nonverbal autistic kid the foods he loves and he doesn’t grasp the reason why is (in my opinion) virtually impossible and kinda cruel.
So in the wife and my opinions, the diet is off the table. You may not agree with us, but we stand by that.
Marijuana for autism & epilepsy.
I have no problem whatsoever with using marijuana to treat autism or epilepsy.
I have no problem whatsoever with using marijuana for other medicinal purposes.
Heck I have no problem whatsoever with people using pot for recreational purposes. Legalize it nationwide! Toke up. I’m all for it.
And I do think it can help lots of kids with autism and probably even more with epilepsy. But I consider marijuana like any other drug or med. And I’m going to use it on my kid only under a doctor’s supervision.
And for autism and aggression we’ve tried other meds in the past and had some success with klonopin with mr Kyle. If and when that stops helping and he needs something else to control his aggression we will talk to our psychopharmacohsu about trying marijuana or CBd oil and see what she says. Knowing her she will be ok with a trial but she may have a med or two that she wants to try before we go that route.
And the same thing goes for epilepsy. We’ve tried 3-4 different epilepsy meds and in our minds marijuana is on the list of things we’d try next.
Basically I’m treating marijuana like any other med or supplement and I’m not putting it above other pharmaceutical medicines that have been around a long time and may have a better track record for fighting autism & epilepsy.
But marijuana is all natural, you say?!
My dad used to love that argument and say cocaine is all natural, poison ivy is all natural. Just because something is all natural doesn’t always means that by default it is better or safer.
And just because it’s all natural doesn’t mean it doesn’t come with it’s own list of possible side effects.
I’ve written about this a bit before (read) when I wrote:
And I know that many people are afraid to go the prescription drug route. They are more worried about side effects or long term effects when it comes to prescription drugs. But just because some thing’s natural doesn’t mean it can mess you up just as much as a prescription med. Do a google search for any of the DAN dr supplements (GABA, 5-HTP) & side effects or even St Johns Wort & side effects or long term effects and the stuff you’ll read is just as scary as the prescription stuff.
I’m not saying I’m against that stuff. It may work for you. But just don’t tell me that it’s safer than my prescription because it’s “natural” or a “vitamin”
And also please note that when I mentioned marijuana treatment for Kyle’s epilepsy to Kyle’s neurologist and referenced the Charlotte’s web story that y’all keep sending me (see I do listen to y’all!), our neurologist, one of the top neurologist’s in the country had no problems with it and adding it to the list if things we might try for Kyle and mentioned a cbd trial that he might be able to get us into.
But then he was quick to point out that the girl Charlotte, had a very specific, extremely debilitating type of autism called Dravet Syndrome. They have 100s of seizures per day. And my doc mentioned that most of the early success stories about epilepsy and marijuana are about kids with that specific type of epilepsy.
My son Kyle does not have that type of epilepsy. Yes, he kinda has seizures every day, but only a few… and they do not mess with his quality of life that much.
So long story short, we would definitely consider medical marijuana for autism & epilepsy, but we are not rushing into anything or moving to Colorado tomorrow. If our situation with Kyle’s agression due to his autism was more desperate or if he were having 100s of seizures a day, who knows, we might be living in Denver right now…
That’s about it. That’s about all I have to say about the diets & marijuana.
And if you’re looking for my stance on other DAN Doctor / Bio-medical Treatments for Autism you can peruse the following old blog posts of mine.
Biomedical / DAN Dr Treatments We Tried On Kyle With No Success… in no particular order…
The Hardest Thing To Write About — my son’s initial autism diagnosis & late regression
Should I Be More In Touch With My ASD Son? — misadventures in biomedical
Enjoy!
🙂
THE END
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I am the mother of a 25 year old son on the spectrum and I understand fully what you are saying about the things you try and don't try. People often don't understand that after all of the advice, suggestions and other ideas that in the end, you, your wife and your son are the ones who have to live with the consequences of what you choose to do. When one of the people making a suggestion also offers to come over and help deal with the fall out, then I am more likely to listen but with most people, they don't get it and think that following a preset plan will fix everything and that the parents just aren't trying hard enough.
I haven't seen an entry from you about the following topic, so my apologies if I'm repeating something you've already tried. After observing your videos and reading some of your blog entries, I was wondering if your son is bothered by certain smells in his environment. My son and I both have sensory issues and I noticed within the last year that I find it easier to eat fruit after it's been chilled or frozen. I realized that the smell is reduced, which also reduces the taste, so it makes it easier for me to eat.
After seeing your son holding his breath and eating in one video, it made me wonder if perhaps he is being bothered by certain smells, which makes it difficult to eat. Colder weather might also help because that would dampen all smells. I suspect you and your wife have probably thought of this already but just in case I thought I'd offer my observation one a possible reason for why he has problems eating at times.
My moms got epilepsy (probably some aspergers too)…im an RN….my ASD son doesn't have epilepsy yet…give it some time…you never know…. Klonopin could be messing around with your son's seizure threshold. My mom's been trying to wean herself off it for over 6 years now. Keppra is finally getting her seizures in order after a LIFETIME of odd, rare, seizures of all different types. Not sure if its been okay'd for kids yet but worth looking into. She doesn't get any of the side effects that cause people issues that make others stop wanting to take it, but she's not underweight either. However, if your little man is still having daily seizures on depakote, it may not be the best med for him. I'm going to bug her about the ketogenic diet…not sure if she's tried that. Sounds aweful.
Klonopin is actually a benzo, not an anti-seizure medication so it won't have any effect on an Epileptic's seizure threshold. It is a safe medication to to take. It is what they give to stop a seizure. (benzos, not Klonopin specifically.) I have had Epilepsy for most of my life.
Just thought that you might find that useful.
Nice Summary – I am one of those parents who is always getting stories sent to me too – my father especially loves to send me articles on things he thinks we should try. I have gotten to the point where I just smile and nod and keep doing what works for us.
We did a no additives, no preservatives, no food coloring diet for about a year when our daughter was young and we DID see results, but it was very hard and we started to get lazy about it – fast forward 8 years and she now eats like a normal teen but it doesn't effect her behavior anymore. Diets can help, but as you said, every child is different and what works for one isn't going to work for all.
Great post – definitely a sharer. 🙂
I respect all of your choices. I especially respect how you do not get on a soap box about each of your choices. You state them and explain. When our son was first diagnosed, I decided that something had to give in the whole scheme of things and I decided that it was his diet. I knew it was going to be the hardest thing to change, and he was healthy and growing despite his limited food choices, so we let it be for a while. About two years after starting ABA, I knew it was time to expand his choices. So, I told my husband and older son that if they couldn't handle my discrete trials to try to get our guy to eat new foods (which would often result in our kid vomiting, screaming, throwing plates, etc.), then they should just eat in another room because I wasn't giving up. I wasn't going to watch our son eat just oatmeal and French toast for the rest of his life. We were able to expand his diet, but still to mostly high carb foods. However, as our son's language and reasoning skills developed over the years, I was able to explain to him how we would let him eat chicken fingers and fries every day, but that they would have to be the ones I made, not the ones from packages. It took a few recipes, but we achieved a balance and at least they were from scratch and not processed. Fast forward to when he turned 16 and just decided one day (he could tell you the exact date because he tells me every year and I still can't remember) that he was giving up sweets (he really was a sugar addict) and was going to lose weight. And, he did. He completely stopped eating sweets, cut back on his portions (but kept his same diet of tortilla pizzas, chicken, fries, yogurt, cheerios, homemade blueberry waffles and muffins), and got a little obsessive about exercise (he has OCD, too). It took him 2 years to lose 65 lbs. He has maintained 60 lbs. of that weight loss over the last year and a half and has also agreed to letting me dip his chicken into pureed squash or zucchini (then covered with crushed corn flakes and baked) so he could get vegetables in his diet. It took eighteen + years, but with tons of intervention and good old fashioned maturing, our son was able to make these decisions on his own and we figured out how to fit it into his life.
You might the like movie Fear And Loathing In Las Vegas!