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#1 of 31 Old 03-21-2005, 03:13 PM - Thread Starter
 
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on 7/19 I posted a thread here called Major Behavior Changes through Diet

Since that time we have had some changes and I wrote up our story in an article format. I wanted to share it with other moms in hopes that it would help someone else from such a drawn out battle for health.


To tell my story is really to share with you our ongoing journey…my
daughter and I.
When my daughter was born, I was blessed to stay home with her, nurse
her, care for her in every way possible to the best of the high
standards her father and I had set. She was born 9lbs and healthy in
every way. She nursed exclusively for the first 14 months of life due
to a gag relax that prevented her from eating solids. During her
nursing time, she did experience diarrhea and allergy ring as well as
rashes and dry skin. She had a plethora of bizarre rashes from birth
on, and after a while we stopped worrying. The doctors told us she
was fine and that the diarrhea was normal for a breastfed baby.
We tried not to worry.

When she was about 17 months old, weaned, and eating normal foods,
that is when her chronic battle of diarrhea started. My entire family
remembers the very day it started as we were on a two car 7 hour road
trip and we had to stop to wash her and her car seat at a fast food
restaurant, and then continue to stop frequently there after. Her
diarrhea was very bad for 2 months straight, some days adding up to 15
stools a day.
Her doctor said she was fine and to put her on the BRAT diet and keep
her hydrated. He told me not to worry.

Bathing her every thirty minutes and seeing foods come out the way
they went in…well needless to say I WAS worried. This was certainly
not normal. This went on for 2.5 years off and on. I took Dairy out
of her diet and then Soy. That seemed to help quite a bit.
Eventually I cut Juice out of her diet per doctor's recommendation
(too much sugar) and that also helped, but nothing was a "cure".

In addition to the diarrhea, she was exhibiting several autistic
traits, yet did not otherwise appear to be autistic. These included
not wanting to be touched, not making eye contact, playing alone, and
most notably, playing with fecal matter. She took every opportunity
she could find to play with feces and there was just nothing I could
say or do to stop her. Doctors would not help me and I was laughed at
by a handful of professionals. Some nurses said this was normal. I
have yet to meet another mom who had this go on for 2 years. I
question how "normal" it really was.

In desperation to get help with the poop messes, I searched the
internet with the help of my Mother in Law. All we could find on the
subject was Autism. That is when we stumbled onto the Autism Diet of
no gluten or dairy. It sounded crazy and impossible at first, but
trust me…I was beyond desperate.

We took all gluten out of her diet and for the first time, her
diarrhea stopped. She actually had some normal days of BMs and we
were all so joyful! After two months we re-entered the gluten and
within a couple of months she began getting very sick again and the
fecal play started again as well. In desperation we went on our own
for some controversial blood work through Immuno Labs. We removed all
the recommended foods (which included the gluten containing grains,
dairy, and soy). Our daughter transformed again and she blossomed!
She stopped doing the traits that appeared autistic to us previously,
and she became a social girl. She started hugging her grandparents
and sitting with them to read stories. She was happier. She finally
felt good and it breaks my heart that it took me 3.5 years to get her
to that point.

I'd like to say that was the end of it, but she still had weekly
attacks of mild diarrhea and some random spurts of autistic behaviors
as well as some more ongoing traits. It was at this point, when she
was 4 years old, that we implemented the principles of the Specific
Carbohydrate Diet. We did not go steadfast into this diet, but we did
make some huge changes and that was exactly what our daughter needed.
It was the final push in combination with her gluten free diet that
gave her freedom. We only had to do this for 6 weeks, at which point
we were able to reintroduce all the foods that had previously bothered
her, with the exceptions of gluten and dairy. She also potty trained
during the day as she finally was able to go not just days without
diarrhea, but weeks! In fact, it has been over two months without any
problems with the exceptions of two occurrences of gluten in foods
that made her quickly ill.

To Autism and Back: First, let me say that I have struggled with
being able to publicly tell our story because I really feel like it is
not "our" story as much as my daughter's and that it should be
somewhat private for her. However, as a mom who reached out to every
possible medical establishment for help, and received none, I know I
would have been blessed to have read a similar story 3-4 years ago. I
would have been overjoyed to know that I was not alone and to have
some ideas of new things to try. That is why I am sharing all of this
now, in hopes it can help another mom and another child so that they
don't suffer for 3 or more years before finding the balance.

Our daughters autistic traits included:
• Stim-ing – at a young age, she would sit and play with the same
figures, lining them up and turning each of them precisely to the same
direction or degree. After that, she would do it again, moving them
slightly again. Now, lining up is normal toddler activity, but to sit
for 2 hours straight lining up the same objects is not. She did this
daily and I did not know, at the time, that it was a sign of anything.
• Anti social – she did not like to play with other children, nor did
she want to be touched by anyone short of her mother. She was never
an affectionate child, never wanted to be rocked, cuddled, kissed.
She preferred being alone and valued her space. As I was a shy child,
I did not realize this was a sign of anything either.
• Very smart-She was putting together advanced 3D and jigsaw puzzles
just after her first birthday. Her ability to sit and work on puzzles
in her toddler days astounded most adults, many of whom would struggle
with the very same puzzles she whizzed through with no effort. In
addition, she knew her letters and numbers at age two and would recite
what she saw on buildings and books. We read to her daily and just
thought she was very bright.
• Fecal Play – this was the hardest one for me to deal with, as her
mother. She went through a very long period of playing with her poop.
She would smear it, play with it, and cover an entire room in
minutes. Because she had chronic diarrhea for the 2 year time period,
there was always ample fecal matter for her to play with. She did not
think it was wrong or yucky and she seemed to enjoy her play. I could
not get through to her on this and I tried every approach as well as
consulted with a handful of professionals to inquire for help. Of the
professionals here is what they told us:
-Her pediatrician said to tape her diapers shut and offered no help.
-Her Occupational Therapist was wonderful in helping us try new
things, but nothing worked. She suggested considering Aspergers and
recommended us to a behavior specialist.
-Her GI doctor did not address this and seemed to avoid it when I
brought it up.
-The second GI specialist also did not give me any response, idea, or
suggestion for help with this.
-The psychologist did not have any answer for her either, except to
say that perhaps my daughter was Aspergers or some form of autistic.
-The teachers did not know what do say, short of go talk to a psychologist.
-We even went to multiple chiropractors who recommend blood work to
look into her diet and chiropractic care as well as occupational
therapy.
-Finally, the MD who specialized in learning disorders diagnosed our
daughter Autistic. Still with all the help I sought, no one could
give me an answer to this ongoing problem, until we found out about
the diet.
• Sensory issues: she had phases of ongoing sensory issues such as
oral and joint compression needs. She would chew and eat many
inedible objects. Some examples, she would eat paper from books, she
would chew through her clothing while driving in her car seat, she
would tear apart children's chew toys and then attempt to eat the
plastic. She chewed on anything she could fit into her mouth. We
sought guidance from an OT who helped us find appropriate means of
redirecting, but we could not stop her from chewing.
• Poor eye contact as well as a "trance state" of non response when
being spoken to quite often (although not always).
• Inability to potty learn. Didn't day learn until age 4.5. Still
working on night learning.

Now, you would think with all of this that I would have conceded that
my daughter was autistic, yet I could not believe it to be true. I
just felt the chronic food related problems that were causing her
diarrhea must be connected to these behaviors. I could see her
through this and we were not about to give up. Because we didn't give
up and listen to the poor advice of doctors who told us to ignore her
diarrhea up to age 6! Because we chose to help our daughter and be
her health advocates, she has NONE of those traits of autism any
longer. Not a single one, with the exception of night potty training.

Within weeks of being gluten free, she became more social and it was
well received by her grandparents and loved ones. Her eye contact
became better, her sensory issues lessened and many disappeared. Her
desire to sit and line up objects vanished. Her puzzle working skills
were left behind for regular kid type play. Her insistence to play
alone at school dissolved and she began socializing and actively
playing with the other children. She went to autistic and came back to
herself through the effects these foods had on her body and mind. I
do realize that this is not the case for many autistic children, so I
don't often talk about this or about her diagnosis to others. I do
not want to get the hopes of people that their child can be cured of
autism. I don't believe my daughter was truly autistic, but I do
believe that gluten, the poison that it is to her, caused her to act
as such.

In our food struggles we have found that elimination diet works the
best for us, as the blood and stool tests available still left us
questioning. I attribute her inability to potty learn earlier to the
three + years of diarrhea and damage that caused to her body and
mental ability to "feel" what should have been normal. I took her to
a GI specialist at age 4 and he told us that toddler diarrhea could
easily go on up to age 6. He discredited all of our past experiences
and her obvious and severe reaction to gluten. It was incredibly
disheartening. In his medical and clinical world, there is not room
for nutritional analysis and the study of food sensitivities and that
is why we, as parents and people, are forced to do these things for
ourselves.

Some quick good news about going gluten free…it has changed the way we
all eat and we eat much healthier. My four year old eats better then
any four year old I have ever met. She eats a balance of meats,
grains, beans, rice, fruits, veggies, and nuts. She is doing much
better on these homemade foods then her classmates who live on mac and
cheese, cheese crackers, and juice boxes. I believe going gluten free
has given us all an opportunity to get on the healthy track and to
give our girls a positive start for eating right in life. But I am
biased…Going gluten free saved my daughter from ongoing pain and
illness. I think it was the smartest thing I have ever done for my
child and I count my blessings daily.
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#2 of 31 Old 03-22-2005, 11:36 AM
 
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Oh LaLa, you've been through alot, I'm sorry to read all this.

Some thoughts come to my mind...

Do you think she could have a yeast problem? Tomorrow morning maybe you'd be interested to see if she could do this free home yeast test:
Fast and Free Candida Home Test
http://www.iwr.com/candida/freetest.html

The fecal play reminds me of a book I read:
Turning Lead into Gold: how heavy metal poisoning can affect your child and how to treat and prevent it - Nancy Halloway, RN and Zigurts Strauts, MD.
The author has twin boys who would play with their feces (the boys were diagnosed with autism & ADHD) & it turned out that they had high levels of lead in their bodies (also some other metals, too). They did chelation therapy & have lost their diagnosis. Do you think she could be exposed to lead? Do you live in a house that is pre-1980's, do you live in a house that has lead based paint? Ever done renovations in your house? There are other sources of lead one of them being mini blinds, do you have any of those in your house? Anyway, I highly recommend the book.

How about the autism - mercury link? Do you think she could have been exposed to mercury? Are you Rh-, did you have a RhoGam shot while pregnant & nursing her? Do you have any mercury fillings in your teeth? Did she have all her shots on schedule? If you think mercury or heavy metals could be a problem, there are 2 Yahoo groups you might be interested in:
http://health.groups.yahoo.com/group/Autism-Mercury/
http://health.groups.yahoo.com/group/chelatingkids2/

The chewing on clothes usually indicates a mineral difficiency. Magnesium defficiency, but usually a zinc defficiency, a hair analysis will show these levels & they say the zinc to copper ratio needs to be 1 to 1, then the chewing on clothes should go away. Of course if she has a leaky gut then natural supplements (like zinc) wouldn't be absorbed, so check her to see if she has a yeast problem, treat that first, then natural supplements could help her.

I will be back if I think of more...

Has she always had speech? It sounds like she would be high-functioning autism or even Asperger's...
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#3 of 31 Old 03-22-2005, 11:50 AM - Thread Starter
 
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What kind of doctor would order a hair analysis do you think?
Chiro? Regular Pediatrician?
I would be interested in checking her levels now that we have the food stuff more balanced out. She still reacts so easily to foods that if it were a matter of proper nutrients then I would be thrilled to figure that out!
We just ordered some EmergenC and MultiVitamins with Calcium for her and her sister. Her sister just started on fish oil too.
Before that we weren't really doing regular vitamins because I foolishly thought she would be getting them from her foods ... of course with all that gut turmoil she was not likely to have gotten much of anything absorbed regardless of the method?!

I am very interested in the hair analysis, though!

edited to add: Regarding mercury, she was vaccinated and it was just after they claimed to stop the use of thermosil in the vaccines. Of course there has been much controversy and I haven't and don't plan on getting her boosters because of her gut problems and her autoimmune problems (such as a two month all over body reaction of petechiae and the gluten intollerance...her immune system is not great and she is at higher risk with vaccines because of her immune and gut problems....I didn't mention that, but she did have an occurance of fizzures after one vaccine. The doctor told me that was normal and nothing to worry about. Again, I didn't know better then that at the time)

Also, I have mercury containing amalgam fillings and a bridge in my mouth and I ate a TON of tuna while pregnant with her. At the time there was not a warning on albacore and that is what I ate a TON of !


I only had her muscle tested for metal reactions with no response indicating, but i realize muscle testing is not a conclusive means, so I would be interested in further researching that.
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#4 of 31 Old 03-22-2005, 12:14 PM
 
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Thank you for sharing your story. The nutritional component of behaviors always amazes me and I am a firm believer. What an awesome advocate and activist you have been.
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#5 of 31 Old 03-22-2005, 12:23 PM
 
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Hair analysis would show levels of heavy metals & levels of minerals (essential elements). Some labs that do hair analysis:

Doctor's Data, Inc
an independent reference laboratory providing data on levels of toxic and essential elements in hair, and elements, amino acids, and metabolites in blood and urine.
http://www.doctorsdata.com/

Great Smokies Diagnostic Laboratory
Established in 1986, Great Smokies Diagnostic Laboratory has helped pioneer the field of laboratory functional testing. Functional testing assesses the dynamic inter-relationship of physiological systems, thereby creating a more complete picture of one's health, unlike traditional allopathic testing, which is more concerned about the pathology of disease.
http://www.gsdl.com/gsdl/

The Great Plains Laboratory
The Great Plains Laboratory helps children and adults with conditions such as autism & PDD, ADD/ADHD, Down's Syndrome with autistic-like symptoms, Fibromyalgia, Chronic Fatigue, MS or MS-like symptoms, Irritable Bowel Syndrome, Brain Fog, Depression, Psychosis, GI disorders, and many other diseases and conditions. Find out more about the testing services we provide.
http://www.greatplainslaboratory.com/home.htm

A hair analysis can be done through a DAN! Dr. (DAN! = Defeat Autism Now!)
http://www.autismwebsite.com/ari-lists/danus.html

Or do it yourself through:
Direct Laboratory Sevices, Inc.
http://directlab.com/
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#6 of 31 Old 03-22-2005, 04:06 PM
 
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LaLa thank you for posting your DD's story. I don't have kids with these issues, although my eldest and only vax'ed child does show some ADD tendencies, but no more than I do or did as a child!

I am, however, extremely interested in nutrition and nutritional healing. I personally would have taken a different approach, but nevertheless we are all different! I am wondering if you have read this article by Linda Carlton Autism and Malnutrition: The Milk Connection and this one Pasteurized Milk and its Link to Autism.

Here are some quotes from the first article:

Quote:
Protein + Lactose = Normal Development
Low protein + High Lactose = Autism

But protein malnutrition does not equal autism nor does lactose feeding equal autism. However,

Protein malnutrition + high-lactose feeding + (the unknown factor) = Autism

There has to be an unknown factor for this to occur, a combination of things that all relate to one another. The unknown factor can be found by testing these three variables. We have to review other information that we have on children with autism to give us the correct answer to the unknown factor.

A low-protein diet offsets a nitrogen balance to detoxify ammonia, whereas lactose feeding ferments bacteria. The only variable that could account for the unknown factor is ammonia. In autism, there are signs of ammonia detoxification, for example when GABA and nitric oxide are increased. So instead of developing overt ammonia toxicity, they are able to detoxify this excess ammonia. As encouraging as this sounds it still depletes cellular energy. Many parents can recall 'staring spells' as the first behavioral change in a child prior to autistic regression. This can be the first sign of increased blood ammonia.
I was also going to ask about vaccines, but saganaga asked already and you clarified that.

Rainbow.giftstillheart.gifsmile.gif

 

"If you find from your own experience that something is a fact and it contradicts what some authority has written down, then you must abandon the authority and base your reasoning on your own findings"~ Leonardo da Vinci

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#7 of 31 Old 03-22-2005, 04:32 PM
 
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My sil was diagnosed with Celiac's Disease - the lab they used was Enterolab (I think the website is enterolab.com)- you don't need a doctor's referral and it's a stool sample test. They will give you degrees of gluten sensitivity/intolerance, and I think dairy too. All that diarhea definitely screams gluten problems to me.
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#8 of 31 Old 04-06-2005, 10:52 PM
 
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Lala,

Thanks for such a wonderful post and for sharing your daughter's story. My nephew has been diagnosed with Aspergers and my niece (his sister) has been diagnosed with Irritable Bowel Syndrome (IBS). I think the two are closely related to the fast-food diet they eat and all the processed, refined, sugary foods they live on...

Anyway, thanks for your story -
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#9 of 31 Old 04-22-2005, 11:22 PM - Thread Starter
 
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I just wanted to update for anyone who was following.

Bean has gotten sick again after several short trips away from home.
This time (and all times since I wrote this), however, it is strictly diarrhea related and potty training related.

She is still free of the autistic traits and has not attempted any fecal play of any sort. (YAY!!!)
She just can't get to the potty chair in time and has several accidents a day when sick.

I don't know what could have gotten her sick again, but we do travel often and perhaps it is as simple as using someone elses pans?
I just have always found it hard to believe that a clean pan could still cross contaminate, but something is making her sick when she is away from home adn I don't know what else it could be?

So I think we'll have to get back to the SCDiet for a bit to let her gut rest enough to move by.
So, while these spouts of illnesses still occur (this one is going on 2 weeks) she still feels good overall and she is still SO MUCH BETTER then she was pre gluten free diet. BUT I worry about her being in school when the time comes. I won't send her if she is going to be having accidents. Kids are just too mean about such things. I would homeschool if that were the case. Her bday falls just after the cut off so we have another full year to heal.

In a nutshell, I will just keep trying to figure out what triggers the problems on travelling. I am open to suggestions and ideas on this as I do try to be very careful.
And I am also open to ideas about the SCDiet. It helped her within 6 weeks, as I mentioned previously, but i wonder if it will be something we need to do a few times each year or incorporate into our diet?

Wouldn't it be lovely if there was an easy and quick answer for all of us who are trying to help our children or ourselves through food related struggles?!
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#10 of 31 Old 04-23-2005, 02:31 AM
 
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I'm far from an expert, but IME eating away food away from home does make me sick. Even if it's GFCF, I do react (but mildly). I dread eating away from home! I bring my own food everywhere.

I saw your post on the GFCF Nourishing Tradition list today I lurk there, and it's an amazing list, sooooo much info! One recommendation that has helped me is before and after eating out to take Pepto Bismol or Pascalite Clay. I haven't ordered the clay yet, so just use the Pepto and it does really help. For your dd, probably the clay would be better. You can searh the list for posts on it.

Kristi

"Have faith in yourself and in the direction you have chosen." Ralph Marston

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#11 of 31 Old 04-23-2005, 01:54 PM
 
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Oooh, I'd like to know where the GFCF Nourishing Traditions list is... Can someone send me the link? I'm on two Nourishing Traditions/Native Nutrition lists, but would like a GFCF one

Thanks!
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#12 of 31 Old 04-23-2005, 02:07 PM
 
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Quote:
Originally Posted by LaLa
Bean has gotten sick again after several short trips away from home.
This time (and all times since I wrote this), however, it is strictly diarrhea related and potty training related.

So, while these spouts of illnesses still occur (this one is going on 2 weeks)

In a nutshell, I will just keep trying to figure out what triggers the problems on travelling. I am open to suggestions and ideas on this as I do try to be very careful.
This has been going on for 2 weeks & it is April...one consideration could be seasonal allergies. Kids immune systems are so sensitive that many times the
increase cytokines reactions from the seasonal allergies will
trigger more inflamation in the gut --- try dye-free benedryl? Seasonal allergies are temporary, so if this continues longer, than it's not seasonal allergies.

Couple of interesting articles:

http://www.autisme-montreal.com/engl...vin_Boris.html
Neurobehavioral Disorders Increased by Pollen Exposure in Children
with Autism and Attention Deficit Hyperactivity Disorder (ADHD)

http://www.healthcentral.com/PrintFo....cfm?id=512163
Seasonal Allergies Affect ADHD
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#13 of 31 Old 04-23-2005, 02:10 PM
 
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Quote:
Originally Posted by LaLa
BUT I worry about her being in school when the time comes. I won't send her if she is going to be having accidents. Kids are just too mean about such things. I would homeschool if that were the case. Her bday falls just after the cut off so we have another full year to heal.
If she's having diarrhea wouldn't you have to keep her at home anyway? I believe the policy at most schools is if your child has diarrhea, they need to be kept home for 24 hours. Just a thought...
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#14 of 31 Old 04-23-2005, 02:15 PM
 
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http://health.groups.yahoo.com/group/GFCFNN/


"Have faith in yourself and in the direction you have chosen." Ralph Marston

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#15 of 31 Old 05-27-2005, 11:25 AM
 
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I want to thank lala for starting this thread.

Also, my son experienced a massive intestinal crisis in March and April. 28 days of vomiting and diahrrea. No help from doctors. "Oh it's a virus."

With Lala's, and others, help, I put him on a GFDF diet, and his gut is healing, and his Aspergers symptoms are slowly healing. The most amazing thing is the improvement in his motor skills.
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#16 of 31 Old 05-27-2005, 04:58 PM
 
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Donna Gates of The Body Ecology diet
www.bodyecologydiet.com
has done a great deal of work with kids with ASD and just spoke at a DAN conference. Healing the gut has a lot to do with building back up the gut flora with homemade kefir and fermented vegetables that naturally repopulate the intestines. Fermented foods contain many times more probiotics than supplements and it's thought that ingesting the probiotics with their natural growth medium carries them into and colonizes the gut more effectively.

There's a Yahoo group, BEDROK for the Body Ecology diet and parents of ASD kids.

Lala, if you have mercury fillings and you ate a ton of tuna while pregnant, I really do think that could be a factor. Are you considering seeing a DAN doctor for mercury chelation?

I am very interested in this because I'm having my fillings replaced by a holistic dentist who works with ASD kids as well. My son, when his digestion was quite bad, exhibited some of these behaviors as well. And think our yeast issues have been (among other things) caused by mercury, as I have a number of fillings and they are old and chipped. Mercury in the body acts like an antibiotic, killing the good bacteria and causing yeast to grow as a protective measure.

It's hard to test "mercury poisoning" with accuracy though, I don't know what the DAN protocols are for testing. Dr. Rashid Buttar, who cured his son of autism through mercury chelation, has said that his son didn't start testing high until they began chelation and the metals started coming out of his son's body.

My understanding about the problems with vaccines and ASD is that it's not only the mercury thimerosal that is the problem, but the fact that you are injecting toxins into the bloodstream of an immunocompromised kid (most of your immune system is in the gut). So thimerosal free vax's might not be better depending on the child, but only "less bad".
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#17 of 31 Old 05-27-2005, 05:15 PM
 
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Quote:
Originally Posted by JaneS
Donna Gates of The Body Ecology diet
www.bodyecologydiet.com
has done a great deal of work with kids with ASD and just spoke at a DAN conference. Healing the gut has a lot to do with building back up the gut flora with homemade kefir and fermented vegetables that naturally repopulate the intestines. Fermented foods contain many times more probiotics than supplements and it's thought that ingesting the probiotics with their natural growth medium carries them into and colonizes the gut more effectively.

There's a Yahoo group, BEDROK for the Body Ecology diet and parents of ASD kids.

Lala, if you have mercury fillings and you ate a ton of tuna while pregnant, I really do think that could be a factor. Are you considering seeing a DAN doctor for mercury chelation?

I am very interested in this because I'm having my fillings replaced by a holistic dentist who works with ASD kids as well. My son, when his digestion was quite bad, exhibited some of these behaviors as well. And think our yeast issues have been (among other things) caused by mercury, as I have a number of fillings and they are old and chipped. Mercury in the body acts like an antibiotic, killing the good bacteria and causing yeast to grow as a protective measure.

It's hard to test "mercury poisoning" with accuracy though, I don't know what the DAN protocols are for testing. Dr. Rashid Buttar, who cured his son of autism through mercury chelation, has said that his son didn't start testing high until they began chelation and the metals started coming out of his son's body.

My understanding about the problems with vaccines and ASD is that it's not only the mercury thimerosal that is the problem, but the fact that you are injecting toxins into the bloodstream of an immunocompromised kid (most of your immune system is in the gut). So thimerosal free vax's might not be better depending on the child, but only "less bad".

Fabulous info., thanks for sharing!
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#18 of 31 Old 05-27-2005, 07:50 PM - Thread Starter
 
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Yes Jane, thank you!
And let us know how your filling removal goes and how you feel afterward.

We have been to our local DAN doctor, but she hasn't suggested any metal testings? I did ask her about it, and she was fine with us doing it. We did muscle testing for metals, and I know that muscle testing is not a conclusive measure, but there was nothing that came up from that.

I don't believe we did test for metals in the blood workups?

Pie, that is just fantastic!
I am really excited for you guys

Bean's autistic behaviors have stayed away, so I think we are really healed from that previous damage. Her gut is still not perfectly healed though and she is very sensitive to many foods, so we dance a balancing act with each day to keep her gut happy. At home we are able to do this quite well, but when we travel she always get diarrhea.

My hope is that with time she will not be so sensitive, but I don't know.

I am actually thinking (in the thinking stages...) of going back to school to learn to become a nutritionist and focus in the field of healing the gut. I don't know a thing about how to start this, what path to take, what degree is best, so I have a lot to think about and research.
Not only would the knowledge help my family, but I am appaulled at the lack of information on these issues in the medical community here.
I may be able to step up to the plate and do something about it in the years to come.
But, that is still a ways off. I don't even know what it entails.

I agree about the fermented foods and I just don't know much about it yet? I have been hoping to find a non dairy non barley source of kefir culture, but haven't located one yet.

We also need to stick with some of the basic principles of the specific carbohydrate diet for bean to stay healthy. That has proven itself with her bodies reactions. We don't need to be on the diet, but she doesn't handle a regular amount of simple sugars and carbs well at all. They give her diarrhea.
An ongoing dance indeed, but one that I gratefully embrace in exchange for what we had previously.

Pie, it warms my heart to know that your son is doing better and his little gut is healing. :
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#19 of 31 Old 05-27-2005, 09:51 PM
 
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Lala (and everyone else),

Wow! The more I have learned, the more I've thought about becoming a nutritionist also... I just finished a basic Nutrition course at a local college and thoroughly enjoyed it. However, I'm really into Weston Price stuff, and the instructor didn't go for too much of that A good book on fermented food is Wild Fermentation, and also Nourishing Traditions.

I'm having my amalgams out on June 22 and will keep everyone posted. I weaned my 2 1/2 year old son almost 2 weeks ago, and it was tough for both of us... My doctor is ordering a heavy metal test from Metal Free (www.metal-free.com , I think). The dentist wants to use other chelating agents - I'm still thinking about that. He's great and is writing a book about it all, but - still looking into his recommendations. I've recently been diagnosed with chronic lyme disease and need to detox before being able to recover completely from the lyme.

By the way, as part of my lyme treatment, I'm seeing an acupuncturist who was referred to me by someone else who had had lyme disease and also has a daughter who is autistic. However, she is asymptomatic because of the diet they follow and because she gets treatments regularly from this acupuncturist - I think he has a way of helping get rid of heavy metals.

Thought that was interesting and that I'd share it -
Maria
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Lala,

I'm having my fillings out a quadrant at a time, so far I'm halfway done and I feel great. I discuss here:
http://www.mothering.com/discussions...d.php?t=241750

Definately check out the BED book and the Yahoo group then if you are interested in healing the gut. So far that book and The Maker's Diet are the only ones I have come across that are specifically about this.

It is indeed sad about the lack of knowledge in the medical community... but then again the modern medical establishment has never been about curing disease, only suppressing symptoms. I wonder if Bastyr, the naturopathic university, has a nutritionally focused degree? But not everyone can move to Seattle (I have to tell you that is in the back of my mind someday too!)

On the Body Ecology site, the store offers Grainfield's probiotic "sodas" based on grains which I assume are similar to the recipes in Nourishing Traditions for fermented beverages, or to traditional water kefir and possibly what you are referring to as well? However, I personally don't know about using them with yeast issues, I don't remember what Donna's book said about that since they contain honey.... as far as when is okay to start using them or if the beneficial bacteria eats all the sugars so as to not present a problem.

The first step of the BED is culturing kefir with young green coconut water, so it can get some dairy digesting enzymes into the intestines, before going to raw butter and then milk kefir. I have used both the kefir starter and culture starter from BED and think they are excellent but never quite got the hang of coconut water kefir, it's very time consuming. However, I also make cultured veggies (DS eats *quarts* of cultured cucumbers now, I'm not kidding, he adores them) with whey according to recipes in Nourishing Traditions, and the whey provides the beneficial lactobacillus starter. After a month on the cultured veggies, DS does great now on milk kefir (we are starting slow however).

I'm using live kefir grains now instead of the powder starter. Also consuming the grains directly and giving them to DS too as I have gotten my hands on some really strong ones that are multiplying quickly. I really feel great... my digestion is amazing, I know that live probiotics have done more for us in a few short months than a year on the capsules. I feel like I wasted SO much money on them. But I guess it's all part of the journey of learning.

Maria,
Good luck on your removal and healing, keep me posted!!
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#21 of 31 Old 10-10-2005, 12:01 PM - Thread Starter
 
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Hi all
Just posting an update on Bean.
She is doing really great! She hasn't had any cross contamination issues while travelling in a LONG time and she is still free of her previous autism behaviors. Still has her sensory issues, motor skill weakness in hands, bed wetting at night etc, but she is just doing so great!
She just turned 5!

We still don't do gluten or dairy, and never will feel any need to introduce either of those (not just because of the gut issues, but because of the peptide issue in connection with previous autism symptoms).

All is well and we're doing great here. Bean is reading at a 1st grade level and going to school 9 hours a week. She still is not as social in a class setting as many children and prefers to be alone a lot, but not anywhere near the extreme that it used to be when she refused to interact in a setting like that. Now she just needs encouragement and space to be alone too. She really enjoys being with the other children.

Thought some of you may enjoy the update
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#22 of 31 Old 10-11-2005, 01:37 AM
 
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Hey La la

very great your bean is holding up on the diet. I have an autistic child. She has been on GFCF for eleven months now. Her autism did not wane with the diet but it was enough to simple finally at long last stop the diarreah madness. she suffered so horribly from it for two years and now seems to get it only twice a month and I imagine it's some kind of cross contamination that's happening somehow. Lately she has had poops that would make a poop expert proud - just perfect.

She is a huge candida sufferer. After six months on Nystatin and Threelac I just gave her the first dose of Diflucan over the next 14 days- she will stay on on threelac the whole time and change to Nystatin for the following 90 days. the yeast just loves her gut and we have jumped hell and high water to try and kill it. I am sort of remotely hoping that once it's killed off, IF it's killed off, she will gain some non-autistic skills. Her body flailing is the hardest part right now. Also her speech just won't catch up to where she needs to be to fit in with her peers.

thanks for your postings. so many people out there have this problem and have no idea how crucial diet is.
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#23 of 31 Old 10-11-2005, 01:56 AM
 
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We are just thrilled to have found the Specific Carbohydrate Diet as well. My autistic 4 yo is doing great on it and even my 2 yo is so much more balanced. I am just amazed at how much of an impact our digestive health has on overall health. We too have found ourselves to be much healthier as a family because of all we have been through! We are on week 3 of SCD and it is by far the best thing we could have done. Ds actually ASKED A CHILD TO PLAY the other day. Without being prompted and everything. WOW! Plus, I brushed his hair and he didn't scream in pain. Amazing!


 

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#24 of 31 Old 10-11-2005, 09:44 AM - Thread Starter
 
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free range, I know how amazing that must feel!


ernesth - I don't know much about treating yeast. Bean was also in a rut for a time and we did the SCDiet (loosley, we didn't do the steps, but cut out starches, sugars, and the "no" foods) and it got rid of those last random bouts of diarrhea for her. It didn't take long for her, either, because she had already come so far in her gut healing.

But I don't think she must have struggled wtih yeast, as we never had to address that specifically.
I do know a couple of women whose families struggle wtih yeast in the gut, and it is something we often contemplate...what came first the yeast or the leaky gut?
Someday someone will have this puzzle all solved for all of us, but in the mean time we are making good headway in solving the gut problems for our families, independantly.

I hope those meds work for the gut. If you haven't, you may find some helpful women in the Allergey sorum on the yeast subject?
I'll be curious to know how it goes, so if you could follow up post, that would be great!
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#25 of 31 Old 10-11-2005, 10:08 PM
 
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LaLa,

You and Bean are an inspiration to us all, thanks for the update!
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#26 of 31 Old 10-11-2005, 10:16 PM
 
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Quote:
Originally Posted by ernestholmes
Hey La la

very great your bean is holding up on the diet. I have an autistic child. She has been on GFCF for eleven months now. Her autism did not wane with the diet but it was enough to simple finally at long last stop the diarreah madness. she suffered so horribly from it for two years and now seems to get it only twice a month and I imagine it's some kind of cross contamination that's happening somehow. Lately she has had poops that would make a poop expert proud - just perfect.

She is a huge candida sufferer. After six months on Nystatin and Threelac I just gave her the first dose of Diflucan over the next 14 days- she will stay on on threelac the whole time and change to Nystatin for the following 90 days. the yeast just loves her gut and we have jumped hell and high water to try and kill it. I am sort of remotely hoping that once it's killed off, IF it's killed off, she will gain some non-autistic skills. Her body flailing is the hardest part right now. Also her speech just won't catch up to where she needs to be to fit in with her peers.
You might be interested in reading more about the Specific Carbohydrate Diet and how and why it is being used with ASD kids:
http://www.breakingtheviciouscycle.i...out_autism.htm

Even though you might be gluten free... rice, potatoes and corn can feed the yeast like mad. It's all about what is being digested fully that is the key.

www.pecanbread.com is for the SCD specifically for ASD kids. The science behind the diet posted on that site is a great explanation of how the intestinal flora can be changed with diet:
http://www.pecanbread.com/scdscience.html

My guy is NT but has huge gut and sleeping problems. His stool tests show overgrowth of 3 different pathogenic bacteria and low good bacteria despite being on probiotics and GFCF, soy free, sugar free, etc. etc. pretty much all his life. Hair tests reveal high metals.... which kill the good bacteria in the intestines, allow overgrowth of the bad, and is the cause of all this.
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#27 of 31 Old 01-21-2006, 02:27 AM - Thread Starter
 
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Jane, what lab are you using?
Is he sleeping better?

We are adding in a new enzyme. The enzyme I bought is DGX by Theramedix. It is a very potent capsule that you break open and use just part of (half a pill a day for starters for dd, for example, working up to what she does well with).

I like it because it helps break down a multitude of foods including: proteins, fats, carbs, and fiber. Many don't assist in digesting that broad of a range.

It is dairy, soy, gluten free (and a list of other things).
I got this from our local DAN doctor. It is what she carries and recommends.
Here is their site (theramedix)
http://www.theramedix.net/

We won't be using these daily forever, but we will be using them during times of cross contamination, when the kids are sick, if we are going somewhere that is higher likelyhood of cross contaimination, and I may even splurge on something myself and see if I can get away with a little more then usual (risky little game, eh?).

We have used enzymes in the past, but in the past I used the ones more geared toward protein break down, so I think this will be an improvement.

When looking into this, I found an interesting article on Karen's site:

http://www.enzymestuff.com/conditionceliac.htm

It talks about which enzymes can make a person with Celiac Disease WORSE in the event of cross contamination!

as you probably know, I suspect Bean has Celiac based on her auto immune reactions in her first 4 years, coupled with her strong reaction to gluten and apparent healing to all foods except gluten.

The DGX has the two recommended (Amylase and Glucoamylase) in addition to the Protease (which is the one you shouldn't use stand alone for a Celiac if I read that correctly?, but it is still waranted in combination with the above two).

In addition this particular enzyme has Lactase, which I am hoping will allow me to eat some yogurt on occassion (big hope, I know!)
Or the girls, who do not react as violently to dairy as I do.

Plus it is packed with other great zymes and acidophillus too !
thumbs up!
It seems great.

I am hoping it will help on during those times of cross contamination, illness, or other trials!
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#28 of 31 Old 01-21-2006, 02:30 AM - Thread Starter
 
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I may have posted this already, but this link shows a study on autistic children and a connection these doctors are making with the stools in the case study.
http://www.thoughtfulhouse.org/0405-conf-akrigsman.htm

I was reading it and about shouting out loud! It was so inspiring and hopeful to see that there are doctors somewhere working on figuring this out and making some connections and headway!

I should add, though, that while they are saying that ASD kids with GI disorders should have GI doctors, that really won't do our family any good considering the GI doctors here are obviously NOT reading the same studies or attempting to figure any of this out. So, take that particular recommendation with a grain of salt, and should you be in Texas, well it might even be worth the drive to meet these people!
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#29 of 31 Old 01-22-2006, 11:05 PM
 
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Hi Lala

Stool tests from Great Smokies and Hair Elements test from Doctor's Data.

DS is doing better overall, thank you for asking. I think we finally got all our ducks in a row and just need to stick to the plan for a while and hopefully the upward trend will continue!

We were using Houston enzymes, the Zyme Prime, which is broad spectrum, plus No Fenol and Peptizyde but they were all too much for DS. The proteases are very strong... they even make me hyper. So now he is taking V-gest from Enzymedica and working back up to Zyme Prime. I think he needs the proteases for the bacterial issues but they just cause too much die off right now I think.

I will be testing Sacchromyces Boulardii soon for Clostridia. On myself first to see if any reactions.


Good article, I don't exactly think his approach will be a cure with acid blockers and steriods, which have their own side effects, but at least he is recognizing there is a problem.

I believe the following is from yeast/bacteria and he only mentioned anti fungals once.

Quote:
Parents describe a grainy substance within it, and I will not retire from pediatric GI until I've found out what that substance is, because all these kids seem to have it. No matter what diet they're on or what supplements they're on, something is going on that makes that particular matter appear in the stool.
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#30 of 31 Old 01-22-2006, 11:06 PM
 
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P.S. We did the hair test ourselves thru www.directlabs.com they were very nice.
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