As some of you who read my last thread in here (Well actually started in the PIT asked to have it moved here) We recently found out our daughter was autistic as well as possible hearing problems.
I have some great news on her hearing. She does have hearing problems but nothing not correctable by hearing aids/FM system (Not sure what the FM system is yet though just mentioned by the audiologist). That is great news as it appears to be correctable.
I spent many, many, hours researching autism online and in medical books (Supplied by my brother) and a few weeks ago decided to try my daughter on the GFCF diet (Gluten Free Casein Free) and I have to say WOW, she has been improving steadily, and I mean participating in peek a boo, looking into our eyes again, and all around being more interactive with her surroundings.
Now the casein was removed first by about 1 week because financially removing the glutens cost much more. (A loaf of GFCF premade bread nearly 7USD) and we noticed an improvement there. So after the glutens where removed she was still improving but I think we made a mistake in removing both er but I do not want to risk regression by reintroducing either now.
And lest we think we where the only ones “optimistically” seeing improvements, we took her to her doctors the same doctor who initially suspected autism back in December, he wrote on her chart “Marked Improvement” after doing the same test he did last month!
Now we are anxious about going back to the therapist in Pittsburgh as we would love to see if she notice’s any improvement during the floor exercises she performed.
For something we where told is uncurable, and only modifiable through therapy, I have reason for hope. Since therapy just started, last Friday, and she was improved before that, perhaps therapy can do even more.
The first night she looked into my eyes, I can literally shed a tear just thinking about it as she was actually looking into my eyes! I know it doesn’t mean much to most people and many may not understand how it made me feel, but during them moments I am cherishing them out of fear of her regressing back.
But for now I am a very content dad. And I will treat every improvement as a miracle to us, but still have to temper that just in case this is the best it gets.
That is absouletly wonderful news! Congratulations!
I don’t know if you’re already familiar with this product, but if you’re not, I’d highly recommend kasha, since you’re doing a gluten free diet. It “acts” like a grain, but is really a fruit, and is therefore gluten free, as well as having a lot of other wonderful health benefits.
Look for it in the aisle where the kosher/Jewish foods are, usually on the top shelf, or you can order it online. We like the medium grain the best, but it comes in fine and course, as well.
It can be eaten as a cereal, prepared kindof like an oatmeal, though I’ve never tried it like that, so can’t vouch for it that way. However, we love it with sautéed chopped onions and mushrooms mixed in, or added to soups instead of rice or pasta.
Good luck with her treatment and I hope you continue to see improvement. Go her (and you)!
My grandson is autistic. My daughter put him on the GFCF diet over protests of his primary care physician. The difference was more dramatic than night and day. He is now a fully functional 5 year old.
It was easy for us to implement the GFCF diet as he was young enough to not be affected (too much) by the change in diet. We did a lot of ordering online and home baking as not too many retailers in our area carried the GFCF food.
Sadly we as well will be doing most of our shopping online. We have two stores locally that carry some GFCF foods but very expensive compared to online. But in order to do that we have to get back credit cards we disavowed a few years back as a means to stay debt free as possible.
As for our daughter she is not yet 2 so starting her on new foods was very easy. And her doctor, though not knowing anything about GFCF is taking the initiative and learning more about it. Which happened simply because he noticed her improvement. That may make it better on other childrens parents in the future, as he learns more about it he may start suggesting it to newly diagnosed children.
It is still living a mini nightmare, I cry like a child still, and getting more dependant on sleeping aids as my ability to fall asleep is impaired. (I lay in bed thinking, then jumping up with an idea and research it etc.)
Your story of your grandson does give me hope. I pray that just maybe in a few years she will be intergrated into a normal school setting. But with the lack of hearing as well as autism, she may not have the ability to. So my job is keeping her as happy as possible, even through my tears.
There are groups/orginizations that can help parents cope with autism. Have you found them and touched bases? Are they a good fit? Some people find that having a worker come into the home to work with the child helps ease things. You might try seeing if you could get someone who is trained to work with autistic children to advise you. It would probably help you sleep a bit better. Maybe a support group would also help? My thoughts and prayers go out to you and your family.
In home therapy is going to be 3 times a week for an hour or two a time. So thats something. Currently I have no plans to join a support group, though I am thinking of starting my own GFCF support group in my town, as there currently is not one with-in 50 miles.
The reason I am not looking for an autism support group is many times, from my online research, I have seen the support groups as being about accepting your childrens autism. I am not ready to accept it, I am going to fight it until I can fight no longer. Then after trying every safe alternative, medical, otherwise treatment, diet, therapy I will accept that as being what it is. The GFCF diet has worked to improve her, yet this is something her pediatrician needed to learn about from me! So that tells me, many other parents may need to hear about GFCF, it may not work, and in many cases does not. But even if it helps 1 out of 1000 autistic kids, its something worth trying.
As for the inability to sleep, it has to do with things like Shayna’s post, I will now spend a few hours looking up kasha, downloading recipes etc. It doesn’t mean its a bad thing, the bad thing is my becoming more dependent on pills to get sleep when I am so dog tired I should just be able to close my eyes.
I also found time to write bad poetry while I should of been sleeping and since this is MPSIMS I will share it… From my lame blog, my lame poem that sort of expresses what I feel like.
And in my defense I blew the could of, could have, part while clearly not thinking, and shouldn’t have cut and pasted without correcting it. ACK! :smack:
Just some food-related ideas, I know special diets can be very expensive. In addition to being eaten as Kasha, Buckwheat is ground into flour (found at many health food stores) which can be used to make things like pancakes (blini are tradiontional Russian yeast-raised pancakes). It has a very distinctive, but not unpleasant taste.
Another thing you can use in place of flour is nut meals like almond meal. It is essentially powdered almonds. Buy it pre-ground or you can buy almonds and grind them in a coffee grinder. There are many traditional European cakes with nut meals as the only “flour.”
You might want to check out low-carb support groups for sources of inspiration in cooking, etc, since strict LC dieters generally avoid grain in any form. www.lowcarbfriends.com is one I know of that has an extensive recipe section.
I have a moderately autistic son (8yo in march) This is the first I’ve ever heard of the GFCF diet. I’ll have to learn more about this.
Anyway therapy has worked wonders for my son. I actually have conversations with the guy now. Which at three, I thought would be something that would never happen.
I can show you some links if that is allowed? GFCF diet is becoming more and more popular. What really interested me about it, and also made me twinge with sadness a bit, is my daughters therapist told us she knew about GF working on some kids over a decade ago. But does not tell many parents about it, not because it doesn’t always work, but because the cost involved many of our nations poorer families just cannot afford to switch to it. What convinced my doctor was a Japanese study, which I could not find online, but in one of the medical journals showing that the same thing that causes yeast infections, candida produces a toxic substance that inhibits the immune system as well as effects the brain functions. The Japanese study was not a autism study, but the symptoms closely mimicked many of those for autism.
Some go as far as saying there is no such thing as late onset autism, it is candida overgrowth. Normal child, took antibiotics for an infection, got thrush etc. A month later stopped talking/communicating normally. It was like a slap in the face when I read about it, was my exact story but with other children. I had to try the diet, and I can say without a shadow of doubt, there have been improvements.
Abbie Normal - I’m glad to hear your daughter is doing so well on the GFCF diet. I’d definitely encourage any parent of a kid with autism to make some effort at this.
I think I posted this in the other thread (too lazy to look just now) but Dweezil is mostly casein free - sometimes for treats. We had heard of GFCF when he was first diagnosed - not from any medical professional, mind you - and dismissed it, but we wound up accidentally going dairy-free when he had a tummy bug. His speech improved dramatically and his autistic symptoms got somewhat better (he’s pretty high-functioning; always had a terrific vocabulary, but his conversational skills were very poor). We ultimately decided not to go gluten-free because of a food-allergy challenge the year before - he tested allergic to wheat so we took him off all wheat products for about a month before reintroducing them. His behavior was worse when off wheat.
Anyway, we’re more lax about casein-free now because it makes far less difference. He’s more likely to wet the bed, and may do more bouncing/squealing when he’s had dairy. My husband, Typo Knig, jokes that in high school when other kids are out back sneaking cigarettes and joints, Dweezil will be sneaking cheeseburgers
Regarding gluten-free foods: Some grocery stores (larger ones) carry some wheat-free waffles, but that’s about all around here; we have to go to Whole Foods to see much else gluten-free. Bette Hagman has written a number of cookbooks dealing with the gluten-free lifestyle, one of them has a lot of recipes for breads using a bread machine. You could probably mail order the specialty ingredients and just make bread at home. The caveat is, a lot of her recipes call for dairy or nut ingredients (dairy obviously a no-no for you; nuts were out here due to allergies).
Actually it was your post in the other thread that stopped the caseins that day. I mean that literally. I was on the fence of taking away the things she liked, in search of a maybe. But after reading your post, I called my wife over and we decided to end it there. Which we did. So a very heartfelt thanks for pushing me over the edge.
I may of done it eventually, but just removing the caseins was when she showed the improvements. The GF was done because we wanted to know if it would improve her even more. Either way I am so grateful for the support I am getting online, both in this community, and others. Without that, I could very well still be in a state of depression.
Wow-- FANTASTIC story. My nephew was diagnosed with PDD, an autistic spectrum disorder, and his folks took him off dairy and wheat. He used to be non-communicative, frustrated and angry, but now he talks and is a happy kid, really doing well in school. It was amazing-- and wonderful-- to see the change in him. Congratulations on this working for you and your daughter!
Abbie, The PDD-NOS might be more signs of an early learning disabilty, rather then straight out autism. Many kids with LDs have the same social-emotional issues that kids with autism deal with. It’s really hard to tell at that age. But it’s good that your daughter’s doing well on the glueten and casien free diet. Continue with it! It might also be due to her hearing loss. A LOT of deaf and hard of hearing kids have social issues, and I believe that doctors won’t say if a baby is autistic, if there’s also the possibilty of a hearing loss.
What does a little kid need with an FM system!!! An FM system is mostly just useful in school. An FM device is like an ALD. Some hoh (hard of hearing) folks love them and use them in their daily life , others dislike them, and don’t even use them in school. It is not a must have. I’m hoh myself and haven’t used one since fourth grade. A word of advice from a hoh kid… the oral vs. manual debate can be rather strong at times. However, as a hoh kid myself, I believe that parents of dhh kids need to give them ALL the tools possible. That means good speech and language, but also good reading skills and the abilty to function both WITH and without hearing aids. Don’t get entrenched in ONE methodology. Be openminded, and give your child the gift of MANY ways of functioning. I just know too many hearing parents who look back at their dhh kids and think “I should have learned Sign…I should have put them in a self contained classroom, I should have…whatever”… The trend is towards “healthy normalizing” kids with classic disabilties (eg only concentrating on speech because hearing kids don’t speechread/sign/ use Cued speech or only sending them to a regular school with very minimal accomondations) but as a product of “healthy normalization” I can tell you that it REALLY does a number on your self esteem.
I can give you a lot of good dhh resources if you’re interested.
Just FYI, if you mean that you need a credit card to do online ordering, most banks will issue debit cards with Visa or MasterCard logos only - this means you can use them at stores and online vendors that take credit cards, but the money comes out of your checking account within days. If you mean it will make it harder to avoid impulse buying, that is definitely true.
:smack: Just saw the reference in your OP to “USD” so now I’ll belatedly add the note that this is the way it is in the US and I’m not sure how other countries handle it. I also neglected to add my congratulations on your daughter’s improvement, and I hope that things continue to look up!
