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Old 07-10-2012, 07:42 AM   #1
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Going back to low carb to support my son....

Some of you may know I have a 15 year old severly autistic son. He has in the past 2 months developed daily seizures (up to 4 per day). In the past he has had 4 big seizures that have landed him in the hospital, these new seizures are different, they only last about 15 to 30 seconds and the poor child looks scared out of his mind, he stops breathing for the length of the seizure unless his teachers or myself verbally remind him To breathe (dosn't work most times but sometimes it does). He has had an MRI which showed a dark spot on his brain which shows where the seizures are originating from. He has had a 24 hour EEG which showed not only the small seizures but also "spikes" which are even smaller seizures which we do not see. He has been on Keppra for the past nine months (to control/stop the big seizures) but it doesn't seem to be working to block these new smaller seizures and it turns Zach into "Zombie Zach", he just isn't himself anymore, he is tired and barely eats....I have only seen him genuinely smile 3 times in the past 2 months.

We had an appointment with Zach's Neurologist yesterday and he approved not only coconut oil (I just started him up again 2 days ago with 1t two times per day and he already seems to be talking a little more!), he also encouraged Atkins or if that would limit foods too much low glycemic foods added in which I totally agree with. We were going to try a new anti seizure medication but the drugstore called and said it was backordered for who knows how long. I'm hoping the diatary intervention and coconut oil with both help reduce the number of seizures, four a day may not seem like a lot but it takes a lot out of him. So, I'm also going to follow low carb with low glycemic thrown in for a bit more variety, I'll miss my twinkies but I want to support Zach. I will still most likely be following JUDDD while doing this (probably forever!).
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Old 07-10-2012, 07:46 AM   #2
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I sure hope it helps him

It will be good for you too. You don't need twinkies anyway, even if it's supposed to be "ok" on JUDDD.
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Old 07-10-2012, 07:48 AM   #3
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for you .. I wish you all the best with finding what helps Zach.. There is much love there in your home!
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Old 07-10-2012, 07:54 AM   #4
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Keep us posted. I know what seizures can take out of a person, so I really feel for your Zach.
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Old 07-10-2012, 07:55 AM   #5
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Good luck! Did your neurologist connect you with a nutritionist who can work with you on a ketogenic, anti-seizure diet for your child? They can be incredibly effective and safe, but it's really helpful to work with a nutritionist who specializes in seizure diets. Low-glycemic won't offer the same control that an anti-seizure diet will. Johns Hopkins Children's Center (http://www.hopkinschildrens.org/high...long-term.aspx) has good information, and so does the epilepsy foundation: Ketogenic Diet | epilepsy.com
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Old 07-10-2012, 08:32 AM   #6
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So sorry to hear about your ds...oh, I can't imagine how it would be to not see my son smile!

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Old 07-10-2012, 08:33 AM   #7
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Good luck! Did your neurologist connect you with a nutritionist who can work with you on a ketogenic, anti-seizure diet for your child? They can be incredibly effective and safe, but it's really helpful to work with a nutritionist who specializes in seizure diets. Low-glycemic won't offer the same control that an anti-seizure diet will. Johns Hopkins Children's Center (High-Fat Ketogenic Diet to Control Seizures Is Safe Over Long Term | Children) has good information, and so does the epilepsy foundation: Ketogenic Diet | epilepsy.com
I just talked to him a few minutes ago to see what we wanted to do about Zach's new meds (the pills can be crushed up and put in something else to make them easier to take so we're going that route...the liquid meds were what was backordered). I touched upon the diet and he said to go for it but lets see if the meds work before I go total ketogenic. He said the coconut oil itself may make a positive difference. Yes, he did offer a nutritionist several times during the appointment who specializes in seizures but I declined....for now, because I have personally followed Atkins by the book many times and own and have read tons of low carb books (I guess I just felt she would be telling me what I already know). The other specialist in autism who was present kept pushing low glycemic which does not as far as I know put the body into ketosis, she said the diet helped about half the kids that are put on it. I figured it couldn't hurt and we would in reality only be cutting out his cereal (strait from the box), chips and the few snack cakes he likes. He will, if following Atkins be even more limited than most because he would have to do it dairy free (he's been GF/CF since he was 4, though we have loosened up on the GF a lot in the past year and it doesn't bother him behaviorwise, if he has a piece of cheese he is horrible behaviorwise for a whole day!) At any rate if he shows no improvement by our next appointment with the diet change and his new meds I will look into the nutritionist.
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Old 07-10-2012, 08:37 AM   #8
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Becky: You are a wonderful, loving mom. Prayers that the diet/meds/CO will work wonders and quickly.
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Old 07-10-2012, 10:58 AM   #9
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Quote:
Originally Posted by tiva View Post
Good luck! Did your neurologist connect you with a nutritionist who can work with you on a ketogenic, anti-seizure diet for your child? They can be incredibly effective and safe, but it's really helpful to work with a nutritionist who specializes in seizure diets. Low-glycemic won't offer the same control that an anti-seizure diet will. Johns Hopkins Children's Center (High-Fat Ketogenic Diet to Control Seizures Is Safe Over Long Term | Children) has good information, and so does the epilepsy foundation: Ketogenic Diet | epilepsy.com
I was going to suggest just this. I have a friend whose son was on this for 2 years and has had such great results. He was very young when they started with it as his seizures were off the scale.

I really hope that this helps your son. Get the coconut oil and fats into him as best you can.

I so respect your choice, what a wonderful person you are.

Please keep us posted and I do hope you can JUDDD along with the LC.
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Old 07-10-2012, 11:06 AM   #10
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There's a lady on the official Atkins forums whose daughter suffered terribly from seizures and found them markedly reduced since putting her on the Atkins program right along with her about 2 years ago. Hopefully Zach will see a similar improvement.
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Old 07-10-2012, 11:47 AM   #11
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I'm sure sorry to hear that Zach has been having trouble recently. Hope this new plan really helps him and I think you're totally doing the right thing to support him. All my best to you both.
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Old 07-10-2012, 12:09 PM   #12
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Becky, I am sorry! Would love to hear how this works out for him because I have read of good reports with ketogenic diet and seizures.
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Old 07-10-2012, 12:35 PM   #13
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Becky- you may want to try Specific Carbohydrate Diet, the book is called " Breaking the Vicious Cycle". The book is for people with digestive diseases (crohn's, colitis, diverticulitis) but there has been lots success with this diet for children with autism. In fact there is website called pecanbread created by a mother of autistic child. Good Luck!!!
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Old 07-10-2012, 03:15 PM   #14
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the SCD as mentioned above cured my ulcerative colitis and there is a section in the book about autism. The pecan bread site has lots of information on the stages of the diet.

Sending love and hugs to you both
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Old 07-10-2012, 03:28 PM   #15
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I support you in your decision to support your son!!! They learn by example!! to you for being so strong for him!! I just wanted to tell you I have worked with adults and children for years who have seizures and they live well rounded lives once they find the perfect med combination!! My cousin also have seizures and the only thing she had to change was her job! Once the medications started to work on her, she rarely had another seizure. She was a head chef for a local resturant and one day she did have a seizure that almost put her face first on a frying pan. That scared her and she ended up getting a job helping a pharmasist (sp?) and has done that for 15 years now and loveeeeeeeeees it!!

I just wanted to let you know it will be ok!!! and to you and your family!!!
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Old 07-10-2012, 03:54 PM   #16
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Good luck with your son - it must be really hard. I did a lot of research recently for a family member on the use of LC for seizures. A lot of doctors really seem to struggle with it and only consider it when all drugs fail. There is a great forum on Yahoo for Modified Atkins (plus another which closed recently but is still available to search) -which is Atkins plus lots of added fat which John Hopkins has done a lot of research on. It is much less restrictive than Ketogenic. Low Glycemic and/or using MCT can also help as you probably know!

I do LC JUDDD and find it great - I make sure to bake legal foods like LC muffins etc!

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Old 07-10-2012, 04:00 PM   #17
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The SCD sounds interesting, I will be getting a copy of the book. I'm going to start with Low Glycemic and see if that has any effect. He has his new meds but I don't know how he will react side effect wise so I may ask his Neuro if we can wait till Saturday morning to start them, if they knock him out it will at least be at home and not at summer school. The coconut oil seems to be doing some good behaviorwise, he is talking much more and rewinding Toy Story to his favorite part 15 times in a row, he used to do that all the time but hasn't for months now, I also caught him singing!

He did have 2 seizures today, one at school and one in the parking lot of CVS, when we were going in to get his new meds. I wish he could tell me what he feels and or sees during his seizures as he really looks like he's seeing a ghost! I asked him if his seizure was scary and he said yes, but he gives false yesses a lot!
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Old 07-10-2012, 04:05 PM   #18
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I support you in your decision to support your son!!! They learn by example!! to you for being so strong for him!! I just wanted to tell you I have worked with adults and children for years who have seizures and they live well rounded lives once they find the perfect med combination!! My cousin also have seizures and the only thing she had to change was her job! Once the medications started to work on her, she rarely had another seizure. She was a head chef for a local resturant and one day she did have a seizure that almost put her face first on a frying pan. That scared her and she ended up getting a job helping a pharmasist (sp?) and has done that for 15 years now and loveeeeeeeeees it!!

I just wanted to let you know it will be ok!!! and to you and your family!!!
Seizures can be really dangerous as your cousin almost found out. We have to really watch Zach when he's near water (I'm always right next to him when he goes in). Glad she loves her new job, it's nice to hear about someone who actually likes their job!
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Old 07-10-2012, 04:18 PM   #19
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Glad she loves her new job, it's nice to hear about someone who actually likes their job!
She loves to talk, and she gets to do that alot with this job!! I love her to peices but there are days I have to stop there and can be in a hurry and have to do my best to avoid her because she talks so much!!!

Have you ever thought of getting a trained dog for him? They can tell him when a seizure is coming, and bark to alert people for help if need be. They are allowed anywhere he is allowed and might even help a bit with the autism. My sons friend has asperbergers (which is a form of autism), and his mom does animal therapy with him. It really helps him with the outbursts. I didnt know they had animal therapy for this until recent, and my sons friends mom is loving the change in him so far!! He went to school with my son most of his life, then his outbursts got really bad and they had to take him out of school. But they started this with him and this year aaron has got to come back to school with his friends again. Its an amazing change for him!
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Old 07-10-2012, 06:07 PM   #20
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Quote:
he is talking much more and rewinding Toy Story to his favorite part 15 times in a row, he used to do that all the time but hasn't for months now, I also caught him singing!
Aw, that's wonderful!!!
(I love Toy Story, too. What's his favorite part?)

Quote:
Have you ever thought of getting a trained dog for him? They can tell him when a seizure is coming, and bark to alert people for help if need be.
That's wonderful, also! Gosh, I animals!!!
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Old 07-10-2012, 07:31 PM   #21
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Seizure dogs put their paw on your foot when they sense you're going to have a seizure. What's crazy is I had a dog with epilepsy (a beautiful Rottie/lab mix) and when she was about to have a seizure, she would come to me (no training) and put her paw on my foot. I think it's a way for them to feel grounded, so that's what they do for their person.

Animals ROCK!
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Old 07-11-2012, 01:41 AM   #22
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Old 07-11-2012, 04:20 AM   #23
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Seizure dogs put their paw on your foot when they sense you're going to have a seizure. What's crazy is I had a dog with epilepsy (a beautiful Rottie/lab mix) and when she was about to have a seizure, she would come to me (no training) and put her paw on my foot. I think it's a way for them to feel grounded, so that's what they do for their person.

Animals ROCK!
I agree animals ROCK!

Dawn, This is an excellent idea! I have heard of this and went to find an article on service dogs for seizures. This trainer has a facility in North Carolina.

From the article~
"That all changed when she adopted a seven-week-old puppy, named Patra, from the local animal shelter. The Rottweiler/German shepherd mix canine started alerting about Jacobs' seizures when it was six months old. The dog head-butts Jacobs behind the knees about 20 minutes before a seizure episode. This gives Jacobs time to find a safe place to lay down and wait for the episode to pass, usually within 5 to 15 minutes. During a seizure Patra stays with Jacobs, giving her a sense of confidence and safety.

Jacobs believes Patra picks up a chemical change that occurs in her body. The dog is now six years old, she said, and also alerted Jacobs to her low blood sugar level, migraines and pulmonary heart valve infection.

Just how accurate is Patra's alerting ability?

"It's 100 percent, when I listen," Jacobs says with a laugh.
"

Seizure-Alert Dogs Save Humans With Early Warnings
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Old 07-11-2012, 04:28 AM   #24
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Originally Posted by Katiebubb View Post
She loves to talk, and she gets to do that alot with this job!! I love her to peices but there are days I have to stop there and can be in a hurry and have to do my best to avoid her because she talks so much!!!

Have you ever thought of getting a trained dog for him? They can tell him when a seizure is coming, and bark to alert people for help if need be. They are allowed anywhere he is allowed and might even help a bit with the autism. My sons friend has asperbergers (which is a form of autism), and his mom does animal therapy with him. It really helps him with the outbursts. I didnt know they had animal therapy for this until recent, and my sons friends mom is loving the change in him so far!! He went to school with my son most of his life, then his outbursts got really bad and they had to take him out of school. But they started this with him and this year aaron has got to come back to school with his friends again. Its an amazing change for him!
We looked into the site 4pawsforability when his seizures were looking like an everyday event, my husband mentioned a seizure dog I didn't want to jump the gun as he had only been having the seizures for 2 weeks back then. If the meds/diet/coconut oil fail I may apply for a seizure dog, they also have Autism assistance dogs. I love that they use Golden Retrievers! we have an 8 year old Golden who is the queen of the castle, she should be okay with a new dog in the house after an adjustment period of course. The seizure dogs are by no means free, you have to raise I believe $13,000 via fundraising.

I always say Aspergers is "talking autism" we know a couple Aspies and to the uneducated they come off as severe know it alls, as all autistics are extreamly smart but Aspies can verbally spill everything they soak up mentally, non verbal or slightly verbal (Zach) can not... . If I had one wish I would wish that Zach would start talking more (I would really wish for a cure for autism but Zach talking would be a huge thing to us).
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Old 07-11-2012, 04:35 AM   #25
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Becky, you and your family are in my thoughts and prayers.
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Old 07-11-2012, 06:16 AM   #26
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and for you and your son, Becky.
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Old 07-11-2012, 07:36 AM   #27
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I just wanted to offer you a hug. You are clearly a strong, loving and attentive mother. I hope the new diet helps your son.
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Old 07-11-2012, 07:45 AM   #28
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I just wanted to offer you a hug. You are clearly a strong, loving and attentive mother. I hope the new diet helps your son.
Thank you everyone for your kind words and well wishes, I was planning on starting him this morning but got out of the shower to find Zach on the couch with a bag of chips! He hasn't touched chips for weeks and he picks this morning to eat them for "breakfast". He took water, chicken breast, and a few pieces of pepperoni for snack to school (his summer school goes from 8:00-12:00 so they only have a small snack), pepperoni is not the best but I know he will eat it. We're doing a salad with chicken for lunch and I'm going to attempt scrambled eggs for supper, he typically doesn't like scrambled eggs but if I have him help cook it may change his mind. My youngest son Matthew loves low carb food so if Zach turns his nose up at the eggs Matthew will eat them (with mayo and cheese) and we will find Zach an alternate. I am sticking to low glycemic for awhile, more options.
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Old 07-17-2012, 01:45 PM   #29
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Wondering how things are going for you, and Zach?
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