Mothering Forum banner

Mother of an autistic child needs a gameplan

1331 Views 22 Replies 13 Participants Last post by  Shirelle
x-posted in Vaccinations

I've seen a lot of posts on MDC regarding autism and what causes it. But, rarely do I see anyone giving or asking for advice on how to 'fix' it. I feel like I'm just going through this blindly, but not knowing if anything is really working.

We did vaccinate up until 14 months, then I started to question it, so we stopped. I also did not breastfeed him, aside from the first three days of his life. I have metal fillings in my mouth, that I know now could affect my children in-utero (they are currently being removed). I also took high doses of tylenol while pg with him.

So far, what we have done:
--we're eating almost entirely all organic produce now. We are not yet able to afford other organics...grains, meats, etc. will have to come as our finances allow it.
--We just joined a raw milk club, so our son will get some raw cow's milk. I also give him some of my pumped milk in a cup whenever I can.
--I had our pediatrician do a serum draw to get an idea of some possible allergies. We found that he is allergic to egg, soy, cats, and dogs from that test. We have eliminated egg and soy as much as possible. We do still have a dog.

Another thing to note is that he drank nothing but soy milk for the entire second year of his life....he had constantly loose bowels (sorry TMI) 4-5 times per day. For some reason, I thought his frequent BMs meant that he was 'healthy'.

So as far as medically--what is next? I definitely can't say that he's 'fixed' from where we stand now. Is it possible to reverse the damage that has been done to his immune system and his brain?
See less See more
1 - 20 of 23 Posts
So where's the cat?
: it sounds like you are being very proactive. I love, Love mothering.com but for my pdd-nos son most of my info comes from parents on yahoo groups. (don't get me wrong, you will find Lots of informed mamas here). The Yahoo! groups are very active. in particular: Autism-Mercury, ASD solutions, ABD (autism biomedical discussion), are good for starters. Also the book 'Children with Starving Brains' by Jacquelyn McCandless, recommended here often. It is all so overwhelming, hope this helps some.
See less See more
Quote:

Originally Posted by Shirelle
Another thing to note is that he drank nothing but soy milk for the entire second year of his life....he had constantly loose bowels (sorry TMI) 4-5 times per day.
This was my son to a t. He got bleeding diaper rash frequently from his stool "burning" his skin. We took him off soy and the change was literally overnight. He stopped having the loose stools and went down to only 2 bm's a day, and his incidence of bleeding rash went way down as well. Rice milk!!


I second the "Children With Starving Brains" book, the GFCF diet is supposed to be a miracle diet, really it is. It isn't a viable option for us, so instead we're using digestive enzymes.

Probiotics are wonderful as well, I highly recommend them.
See less See more
I am also a preacher of the Gospel of Probiotics. Start with the gut. Probiotics, enzymes, certain vitamins that your child may be deficient in can help the healing process. If possible, get him tested for vitamin deficiencies and peptides in the urine (an indicator of casein & gluten intolerance). These special diets do not work for a majority of children with autism, only those with a specific set of symptoms, as far I have seen. My DS tested negative for food intolerances and allergies, but he was deficient in vit. C, B12 and other nutrients. I noticed when he was a toddler that he seemed calmer, less agitated, after drinking a few ounces of juice enriched with vit. C. He started sleeping through the night after we mixed a teaspoon of flax meal into his applesauce every day. Maybe you've witnessed similar behavior changes related to diet? Play therapy is another highly effective tool to have in your belt. I don't personally know any child whose autism has been "fixed." But I've seen kids, including my 5 year old DS, become healthier, make friends and enjoy life.
See less See more
I'm a big believer in probiotics too. Also in the Specific Carbohydrate Diet, which has brought the greatest gains out of everything we've done for DD. The SCD focuses on healing the gut. Having lots of vitamin deficiencies and food intolerances can be an underlying symptom of gut problems. But the SCD is not an easy diet to implement; it's probably one of the hardest out there. DD didn't have a whole lot of obvious bowel problems before we started the testing, I was only able to recognize the signs of her GI problems in retrospect. For example, my DD also had loose bowels multiple times per day well past the point of having been exclusively breastfed and I didn't know there was anything abnormal about that.

I would recommend looking into the SCD and at least giving it a trial spin of three weeks or so. I actually did see a turnaround in DD that quickly as opposed to with the looser GFCF diet, which brought more minor gains over a longer period of time. She is still far from healed and still has ups and downs that appear related to her diet...like right now we are having a yeast flareup that is no fun and she's waking up at night again and having tummy pain. I think it's because of some new supplements the ped put us on and I'm starting to wonder if we'd be better off dumping all the expensive supplements and going back to the straight SCD.

DD is still far from healed, like I said. I'm not sure there is a way to fix autism completely; I'm trying to have a goal of just fixing her physical health and going from there as far as the rest of it. I feel like I can accept whoever she is once we are sure that it's not some kind of health problem locking her inside her head. We were blown away by everything we discovered through blood tests and the other labs the DAN doctor ordered. DD had dozens of food sensitivities, extreme yeast overgrowth, bacterial imbalances in her gut, deficient in nearly all vitamins and minerals and amino acids...and some heavy metal elevations in her hair test, particularly uranium of all things.

Oh well...rambling now...but I guess my recommendation would be to find an experienced DAN practitioner and get a workup done. Figure out whether you're looking at gut problems, deficiencies, heavy metals, or a combination. Then you can probably go from there. I also highly recommend all the Yahoo groups that mayalee mentioned; I am members of those as well. Jaquelyn McCandless's book is a GREAT intro. And if you turn out to be facing gut problems, Natasha Campbell McBride's book "Gut and Psychology Syndrome" is full of a ton of helpful advice.
See less See more
Are you aware that most verbal people with asd do not wish to be "fixed"?

http://www.aspiesforfreedom.com/auttv/

ASD is a touchy subject, and every child is different. I hope that this does not offend you, because that is not my intention at all. I have a son that has Asperger's.
Quote:
Are you aware that most verbal people with asd do not wish to be "fixed"?
Plenty of nonverbal people with ASD don't wish to be fixed either. I've read a lot of their writings. But given that it is a fact that many children with ASD have underlying health problems behind some of their symptoms, I don't think there's anything wrong with looking into treating those health problems. Whatever happens after that is what happens, but no one would advocate not treating cancer, diabetes, heart disease, or other types of health problems in a child.
I'm not trying to "fix" my child. I want to help him be the best and healthiest person he can be, whatever that entails. Autism and all.
Whatever you decide to do, don't beat yourself up over what you did in the past. You are educating yourself and have your child's best interests at heart and that is what is really important. Like a pp said, start with the gut! I would also start a food/behavior diary and watch for patterns. It is amazing what a difference changes in diet & adding some supplements can make.
Quote:
Are you aware that most verbal people with asd do not wish to be "fixed"?
Yes, I am. I've read some of a weblog from a woman with an ASD who shares those views.

When he is an adult, he can decide how he wants to live his life. But, right now, he has some obvious health problems that I believe relate to his autism. I want to make sure that I've done everything I can to make him healthy. I'm hoping that by doing those things, his autistic symptoms will diminish. If those things don't diminish his symptoms, I'll still be happy that hopefully we helped his allergies, and put him on the road to the best health that he can have.
Normally, I'm not a big detractor of mothers trying special diets for their children's neurological differences. Unless it gets into real weirdo nonsense junk science with children dying from chelation treatments, it does no harm and may do a little good. Most importantly, it gives a parent who feels powerless something to do.

God knows, I spent my entire childhood on super-holistic health diets, and it didn't cause me harm. My mother found a doctor who was an early proponent of such things in the 80s... I was the weirdo kid who couldn't eat the birthday cake, but since I was also the autistic kid, I had bigger social problems to worry about. Still, I'm sure I was less hyper and touchy than kids on a standard American junk diet.

However, my mother says that it didn't really affect my autism one way or another.

As a much more high-functioning teenage autist
: , I went on a two-year junkfood binge. Taco Bell, slushies and sweet-tarts were my major food groups. Luckily, I was a skinny little thing with a cast-iron stomach. Looking back now, I shudder.

But my autism was unaffected.

As a you twentysomething (eating healthier now), I developed a skin problem and decided to try a very limited/holistic diet. I cut out all wheat, dairy, gluten--oh, tons of things, ate no processed food, took enzymes. I felt wonderful, and it helped my skin, but it was a bit too high-maintenance.

My autism, however, was unaffected.

As a married and parenting adult, I feed my family a largely traditional, slow-food, unprocessed, organic diet BUT I don't avoid any food groups. Eggs, dairy, we eat it all, with the stipulation that it be organic (we NEVER eat conventional meat or dairy) and the exception of corn syrup and hydrogenated oils.

My autism continues to be unaffected.

Why did I post all of this? Just to annoy/upset all the lovely mamas on this board who will now post "Well, missy, that may be true for you but you don't know jack about my family's situation, so zip your lip!" And, okay, fair enough. No.

I posted this because, OP, you are beating yourself up all over the place for something that is not your fault and that, very likely, you cannot control. You sound like a deeply loving and caring mama, and I'm sorry that people have made you believe you hurt your child. This is alarmist nonsense, and needs to stop. It doesn't help people with autism, it doesn't help their parents.

This nice woman believes she damaged her child's brain with fillings and soy formula. For the record, I'm against this way of thinking. It's creepy and cultish.

And I'm sorry if it gets me kicked off the boards, but I'm going to continue protesting when I hear children with autism described as "sick" and "disabled." It's unbelievably offensive, and completely discriminatory, and if you want to talk like that in your living room that's your own business but you have absolutely no business posting such things in a public forum. 50 years ago, homosexuality was a "disease," but guess what? We now live in 2006, and whatever you personally believe, it's not OK to go on like that in public. Adults with autism exist, read these boards and, despite what nonsense you may have read about autism conferring a soulless lack of emotion, we are capable of hurt feelings and insult.

Hopefully the world will be a slightly better place for your autistic children because I made a fuss now. Attitudes need to change.
See less See more
Hala, thanks for your post. It truly gives me a lot to think about. If I may ask, what were you diagnosed with? You are obviously high functioning and that is fabulous!

Thank you again for sharing.
I was diagnosed with Autistic Disorder in the late 70s, as a small child, and with Asperger's Disorder in 2002.

As my childhood was characterized by high verbal development and hyperlexia, I'm fairly sure they would have diagnosed me with Asperger's had that condition existed in the U.S. when I was little.

But I don't want to hijack this thread... I have, however, finally snapped and posted a rant of my own on the boards, under the topic "autistics are not nice people."

I'm not putting down good solid health-food diets, by the way, and avoiding allergies can be important. In my, admittedly anecdotal, experience, it just didn't make a difference on way or the other.

Although, and I should have pointed this out, too much sugar still does make me a snarling stimming whacko.
See less See more
Quote:

Originally Posted by halalove
However, my mother says that it didn't really affect my autism one way or another.

As a much more high-functioning teenage autist
: , I went on a two-year junkfood binge. Taco Bell, slushies and sweet-tarts were my major food groups. Luckily, I was a skinny little thing with a cast-iron stomach. Looking back now, I shudder.

But my autism was unaffected.
Huh, interesting. Diet doesn't really affect my son's autism either but apparently there are a lot of parents here who have seen real results.

Quote:

Originally Posted by halalove
And I'm sorry if it gets me kicked off the boards, but I'm going to continue protesting when I hear children with autism described as "sick" and "disabled." It's unbelievably offensive, and completely discriminatory, and if you want to talk like that in your living room that's your own business but you have absolutely no business posting such things in a public forum.
My son is disabled by his autism. And are you suggesting we hide our feelings about our children's autism by confining it to discussions in our living room?? We have every business posting this in a public forum when the public forum happens to be for support of parents of children with special needs.

Quote:

Originally Posted by halalove
50 years ago, homosexuality was a "disease," but guess what? We now live in 2006, and whatever you personally believe, it's not OK to go on like that in public. Adults with autism exist, read these boards and, despite what nonsense you may have read about autism conferring a soulless lack of emotion, we are capable of hurt feelings and insult.

Hopefully the world will be a slightly better place for your autistic children because I made a fuss now. Attitudes need to change.
I've never seen a parent here suggest that their child is not capable of feelings and insult or lacks emotion. Now you are being offensive.
See less See more
Quote:
And I'm sorry if it gets me kicked off the boards, but I'm going to continue protesting when I hear children with autism described as "sick" and "disabled." It's unbelievably offensive, and completely discriminatory, and if you want to talk like that in your living room that's your own business but you have absolutely no business posting such things in a public forum. 50 years ago, homosexuality was a "disease," but guess what? We now live in 2006, and whatever you personally believe, it's not OK to go on like that in public. Adults with autism exist, read these boards and, despite what nonsense you may have read about autism conferring a soulless lack of emotion, we are capable of hurt feelings and insult.
I have referred to my daughter with ASD as being ill because of her GI problems, and I just wanted to point out that the science behind the link between teh gut and brain is not junk science.

HOW DIETARY INTERVENTIONS COULD AMELIORATE THE SYMPTOMS OF AUTISM
http://www.pharmj.com/pdf/education/...707_autism.pdf

Biochemical aspects in autism spectrum disorders: updating the opioid-excess
theory and presenting new opportunities for biomedical intervention
http://www.expertopin.com/doi/abs/10...728222.6.2.175

Gastrointestinal Microflora Studies in Late-Onset Autism
http://www.journals.uchicago.edu/cgi...819161047Guest

Autism and gastrointestinal symptoms.
http://www.ncbi.nlm.nih.gov/entrez/q...627&dopt=Books

Autism and Clostridium tetani.
http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Citation

Abnormal intestinal permeability in children with autism.
http://www.ncbi.nlm.nih.gov/entrez/q...921&dopt=Books

Intestinal Pathophysiology in Autism
http://www.ebmonline.org/cgi/content/full/228/6/639

Metabolic biomarkers of increased oxidative stress and impaired methylation
capacity in children with autism
http://www.ajcn.org/cgi/content/abstract/80/6/1611

Abnormal intestinal permeability. An aetiological factor in chronic psychiatric
disorders?
http://bjp.rcpsych.org/cgi/content/a...e2=tf_ipsecsha

A Peptide Found in Schizophrenia and Autism Causes Behavioral Changes in Rats
http://aut.sagepub.com/cgi/content/a...e2=tf_ipsecsha

Gastrointestinal abnormalities in children with autistic disorder.
http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Abstract

Again, I am sure this is not universal to all people with autism but again, just wanted to let you know in case you are interested.
See less See more
I know this can be a difficult topic for many people, and emotions will tend to run high. However I must insist that we ALL adhere to the User Agreement. Let's remember that we are to refrain from the following:

Quote:
Posting in a disrespectful, defamatory, adversarial, baiting, harassing, offensive, insultingly sarcastic or otherwise improper manner, toward a member or other individual, including casting of suspicion upon a person, invasion of privacy, humiliation, demeaning criticism, namecalling, personal attack, or in any way which violates the law.
So, let's try to keep it gentle... okay?
Thanks, Amy for not deleting my thread! There is some amazingly valuable info in here for me to wade through.
Halalove, I appreciate what you're trying to say, but it could be much gentler said. Even I have found that trying to beat people over the head with a sledgehmammer is likely to get your point across. I have read about the autists who are against "curebies" but I find that they lose a lot of what they could gain by being so extreme, it is not all or nothing but everything in between, KWIM? They seem to be mostly high functioning, some self-identified autistic, and that is much different then being a parent watching your child struggle with the most basic developmental skills. It is no wonder they adopt the "must fix, must fix, must fix" mantra because that's what you do as a loving parent, you fix the hurts. And even they agree that gentle behavior mod therapy, ST, OT is perfectly acceptable.

Shirelle, I hope you can find the answers you need.
See less See more
Quote:

Originally Posted by krissi
I have referred to my daughter with ASD as being ill because of her GI problems, and I just wanted to point out that the science behind the link between teh gut and brain is not junk science.
While it's not junk science, the studies you cited are either anectdotal relying on information from other studies, or have too small numbers to really prove anything conclusively. The first study states in the introduction that a Norwegian study where removing gluten and casein was effective in treatment was unable to be replicated.

I do think dietary changes are helpful because there are co-morbid GI issues in autism, but I think we will find that the numbers that it truly helps are much lower then originally though, probably 10-15 percent.
Quote:
While it's not junk science, the studies you cited are either anectdotal relying on information from other studies, or have too small numbers to really prove anything conclusively. The first study states in the introduction that a Norwegian study where removing gluten and casein was effective in treatment was unable to be replicated.

I do think dietary changes are helpful because there are co-morbid GI issues in autism, but I think we will find that the numbers that it truly helps are much lower then originally though, probably 10-15 percent.
Yes, they may not be able to prove anything conclusively at this early point in the research, but the point is that the science behind wanting to try dietary interventions is indeed sound, lots of people out there are finding that this benefits their kids, and we are not bad or desperate parents if we want to find things that we can do to help them. Not everyone wants to wait to look for a lifeline until a doctor says to do it.

Surveys of parents who have used dietary interventions show that the numbers that it benefits are high. If it works for your child, who cares how many scientific studies it has behind it? A diet may not "cure" autism but if it helps the child function better and increases comfort I say bring it on. Same deal with nutritional supplements, HBOT, and all of the other perfectly safe biomed therapies out there that don't harm anyone to try. I stand by the idea that people who try biomed therapies are not trying to change who the child is but rather increase comfort and remove barriers that could be holding their children back.
See less See more
1 - 20 of 23 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top