Autism... joining in:)

[elfinbaby]

http://www.kodakgallery.com/Slideshow.jsp?&mode=fromsite&collid=71845254905.138554874205.1157848467818&conn_speed=1

I have 3 kids - ds 8 yrs., Ilah (eye-lah), and dd 2 yrs. These pics are a year old but I wanted to post something. Ilah is the one with long hair. I've been raw for 2 mos. and it's going remarkable well. I'm in the process of transitioning the kids to a more healthy diet. I don't think dh would go for all raw. However, he's responsive to Fuhrman's book on kids so that's the route I'm taking right now. Plus, I'm the one that feeds the so :p .

Ilah has been diagnosed with Rett Syndrome (www.rettsyndrome.org). It's a genetic mutation, exclusive to females, totally rare (around 3000 cases in females in the nation), causes plenty of disabilities. For now, it falls under the autism spectrum so that's the route I go when I look for info. She is a delightful, happy, little girl with a good dose of hypotonia (weak muscles). Her biggest challenge is apraxia (motor planning difficulties) along with the fact the girls with Rett lose their speech.

I don't know if a change in diet is going to have any effect on her. It may or may not. Her diagnosis is so rare that the research just isn't there. But I have a couple of questions. Oh, btw, my son also has a long list of food allergies - grain being a big culprit so I'm focusing on Ilah and ds' diets in a serious way.

First, I go through periods of reading a lot of information/books but it's been awhile and I haven't retained the info :p

What books address the autism/diet connection?

What are the dietary needs for grains in children? My son is allergic to almost every grain and I've read that grains may cause problems for children with autism.

It is also important for dd to stay at a good weight. The drs. freak out if she's not chunky (if she gets sick and loses a couple of pounds it could take a loooong time to gain back - alot of girls end up with gtubes). She has a healthy appetite and eat almost anything but I'm scared she'll lose weight.

If anyone has advice or experience or anything, I'd appreciate your input. I'm just beginning the process and I feel good about it.

Thanks,
April

[Ireland]

Welcome elfinbaby, glad to have you here. The link in your thread to the pictures of your children doesn't work...just thought I'd mention that.

Anyhow, there's been a few people on the boards over the past year or so who have children with autism. Go to the banana at the top of the page and type in autism and it should bring up relevant threads.

I've worked with kids with autism in the past and find them quite fascinating. I've never heard of Rett's Syndrome though, I learn something new every day! My oldest son has Tourette's Syndrome so I know what it's like to be in your shoes to a certain extent. Somehow I think it makes us more tolerable, compassionate people when all is said and done.
I wouldn't trade my son's personality for the world!

Anyhow, I trust that you're able to find help here.

Blessings on your journey,

Shannon

[berrymarymac]

I recently did a paper for my psych class on how a gluten-free diet helped children with autism! I am very interested in this subject these days. But there are people here who have said that raw has helped their children with autism! I wish you all the best of luck and welcome!

[Rawkinlocs]

Allison is a member here and had some remarkable progressions with her autistic son: http://www.rawfoodtalk.com/forum/showthread.php?t=1843

You might contact her!

[Rawkinlocs]

Allison is a member here and had some remarkable progressions with her autistic son:
http://www.rawfoodtalk.com/forum/showthread.php?t=1446 and

http://www.rawfoodtalk.com/forum/showthread.php?t=1843

You might contact her!

[elfinbaby]

THanks for the replies. I did read the threads before posting - I'm a little self conscience about asking questions that have been asked before. I also tried to contact Allison before posting but the board wouldn't let me - said I wasn't allowed to or something like that.

Thanks again,
April

[athena]

I just did a research presentation in my developmental psych class on autism. I found much evidence to show that probably the biggest trigger for autism is a high dose of heavy metals in utero or before three years old, often via vaccine preservative, Thimerosal. The cover-up that has been going on since this was revealed is major. However, nothing else has been proposed to explain the more than 1000% increase in autism incidence over the period in which thimerosal was in all childhood vaccines (1991-2003). Supposedly it is only in 2-3 now.

Read the web site safeminds.org. Their staff consists of parents of autistic children who have made fabulous progress following this line of reasoning that first you need to chelate out the heavy metals and then start retraining the brain and rebuilding neural networks. There is really alot out there on this, but once you've read what is on safeminds.org, you'll know what to google to find most of it.

Hope you get stunning results!

[Pierre]

I'm not a Rett or a Tourette, or even a Fourette, but I thought I'd chime in. I'm an aspie and went through the usual temper tantrums, and still sometimes I can't speak (it happened today when I was at someone's house; the daughter I know from church but the rest are strangers). One thing I like about it is that the aversion to artificial smells is inborn in me; I could not, as far back as I remember, go through the perfume section of a department store without holding my nose.

I'm pretty sure my case is genetic. My father was an aspie, as far as I can tell, and from what I've heard of his father he sounds like one too.

[greeninloanageles1]

I also read about casein(dairy) and gluten(grain) free diet helping kids with autism and also all kinds of detox through bentonite clay baths, saunas, supplements.
I believe kids also get mercury through parents dental work and other ways, not just vaccines. For some reason here father is probably even more important than mother, because large study in Israeil linked autism with older father's age(that does not contradict mercury or other metal toxicity, because obviously the older the father, the more toxins he accumulated).
But don't forget other side as well - a lot of kids who do not have autism are labeled by public school system as such because they get much more money for autism than for let's say speech delays. That's exactly the dilema we are going through with our son who is three and talks very little - just as I did his age. We would like to get him some help with his speech, but speech therapy privately costs much more than we can afford, but if we go through public school, we risk to have him labeled for life(or at least for school years).

[elfinbaby]

I didn't even realize there were more replies!

Autism is a very hot topic in "special needs" circles. There's a lot going on, being reported, discovered, etc. I feel very fortunate as a parent I didn't have Ilah in the days when drs. said "Institutionalize her."

Having said that, in our specific situation, Ilah is not "technically" autistic. It floats in and out of the spectrum depending on when you need a label, which dr. you're talking to, etc. The Rett Syndrome gene was found in 1996 (I think, I used to know that date!). 80-85% of girls diagnosed show positive results. It's MeCP2 - not that it matters to ya'll :p Technically, when Ilah was concieved Mother Nature mutated a particular gene and we got the Rett! It's a rare disorder - strictly female (males don't have the extra X chromosome so they usually die at birth). Around 27,000 diagnosed cases in the world I think. Naturally, how severely you are effected is different in every case but none could ever live independently, semi-ind., - let's just say I'll never have an empty nest.

As a side note, I still wonder about this gene and outside influences (could a completely poisoned food supply be responsible for the gene?). But I know I did everything I could. I ate well, exercised, took no meds, had a homebirth, did not vax, breastfed till she was 18 mos. (then dried up b/c I was pregnant), co-slept, the whole ball of wax basically.

I do believe nutritional changes can help her so I'm looking into it. We have to be very very careful b/c she doesn't chew her food well enough to extract all of the nutrients imo and if she doesn't hit a certain weight the drs. start talking g-tube. Therefore, I am fearful to restrict her diet - she can't just be one of those slim but healthy kids. BTW, she has been dairy free for over a year - stupid mucousy crap.

April

Hey I was trying to post a pic of Ilah - but it comes out HUGE! You have to scroll halfway over to see her face. Advice?

[elfinbaby]

I think this will work