DS Autism Discussion

Posted on March 25, 2010 by Miriam Kauk

For discussion of bio-medical treatments for the dual diagnosis of Down syndrome and autism, join  the Yahoo group  DSAofLouisville.

Update: Here is the group description:

I’d like to invite you to join a newly active group dedicated to the dual diagnosis of DS and Autism. We’re hoping to provide an openminded discussion of biomedical, alternative and complementary medicine and treatments. This would include treatments for Down Syndrome as well as Autism. Of course traditional allopathic medicine is considered on topic and crucial for our often medically compromised children as well. Perhaps you have a child with only one diagnosis but are still interested in learning from and sharing with us. Perhaps you are a professional or family relative who cares about these issues…everything from gfcf diets and TNI to HBOT and RDI.

Plus, Super Down Syndrome has collected resources for the DS/Autism dual diagnosis.

Filed under: autism, biocchemistry, Down Syndrome | Tagged: | Leave a Comment »

4. Research the Vaccine Controversy for Yourself

Posted on January 28, 2010 by Miriam Kauk

This is the post which is going to make me unpopular.  Vaccines are so doggone controversial, yet so much a part of the medical orthodoxy that questioning them is tantamount to heresy.  But I gotta say this to new parents of children with Down syndrome:

You simply must research the vaccine controversy for yourself.  You just must.

The statistics of incidence of autism in the general population are bad and getting worse. But  in Down syndrome the statistics are terrible.  Various estimates range from 1:10 to 1: 5.  Something serious is going on if one out of every ten children with Down syndrome also is diagnosed with autism.

It didn’t used to be.

On the Einstein-syndrome email list the ratio holds true:  about one in ten.  And from the stories and struggles told by these parents, the DS/autism dual diagnosis is just heartbreaking.  Down syndrome alone is a walk in the park compared to dealing with autism piled on top.

If this health issue is so prevalent, then we parents must do all we can do to prevent it from happening in our own children.  Once again, Professor Parent PhD must get on the Internet and research a difficult topic.

If you do not know the best theories about the causes of autism then you do not know how to protect your child. Let me say that again:  If you do not know the best theories about the causes of autism then you do not know how to protect your child. Period.  If you do not know the risk factors for autism, then you do not know how to minimize the risks in your own little guy.

As you research, be sure to read about gut dysbiosis, contraindications for the various vaccines, the safety studies which have been done on vaccines, particularly the safety studies done in  medically complicated populations, and alternate vaccine schedules.

As you research you’ll begin to understand the social concept of herd immunity, and the expected collateral damage to a percentage of the herd.  Herd immunity is a great social concept for policy makers.  But for me as a parent, it is my job to keep my own high-risk child from becoming the collateral damage.  The first step to do that is to research the vaccine controversy for myself and then act on what I learn.

If you have researched this topic and have relevant links for other parents to look at, both pro and con, please post them in the comments.  Please write a sentence or two on each link, why it is relevant and/or helpful.  And limit your links to two per comment or WordPress’ spam filters quarantine your comment and I may not see it.   You may post multiple comments if you have multiple relevant links.

Vine-heart-line

Top Fifteen Things New Parents Should Know

This post is #4 of a series which was written specifically to a couple who have a baby boy with Down syndrome. These fifteen are the things I would do if I once again had a baby with Down syndrome.

Filed under: autism, biocchemistry, Down Syndrome, Health, medical, Trisomy 21, vaccines | Tagged: , | 6 Comments »

10. Focus on Gut Health

Posted on May 13, 2009 by Miriam Kauk

This post is part of a continuing series, The Top Fifteen Things a New Parent Should Know which was written to the parents of a particular baby boy who has Down syndrome.  These are the things I wish I had known from the beginning when my own daughter was born.

Parents of a baby with Down syndrome must become Professor Parent PhD

Constipation is a gut wrenching problem in our kids.  Literally.  If you spend any time at all on Down syndrome related forums and email lists, you will see this problem discussed.  Yes, we moms actually get on the Internet and talk about poop.

There is a comprehensive collection of parent solutions to constipation elsewhere on this site, so I won’t list them here.  Instead, I’ll look at three areas to focus on preventively to keep the gut healthy.gut

First, a healthy gut  is lined with a carpet of microvilli on the ends of the absorptive cells.  These tiny tendrils produce enzymes for digestion.  A healthy gut hosts billions of friendly bacteria which also digest food, and which form a protective wall against unfriendly bacteria and parasites which attempt to set up residence.  These friendly bacteria form an important part of the immune system.   Finally, a healthy gut has regular, strong peristalsis, the rhythmic squeezing that moves food through the gut.

Problems in any of these areas are interconnected.  (more…)

Filed under: autism, diet, Down Syndrome, gut, nutrition, vaccines | Tagged: , , , , , | 10 Comments »

Quirky behavior, part 2

Posted on March 5, 2008 by Miriam Kauk

I just finished watching the series of six YouTube videos with Donna Gates (of the Body Ecology Diet) and Natasha Campbell-McBride’s Gut and Psychology Syndrome. If you are the parent of a child with Down syndrome or if you are the parent of a child with autism or autistic-like behaviors, watch these videos.

One
Two
Three
Four
Five
Six

Filed under: autism, diet, Health, medical, vaccines | Tagged: | 4 Comments »

Quirky behavior… is it just the DS?

Posted on March 4, 2008 by Miriam Kauk

That is often the first clue that a parent has. The odd behaviors. But what I am hearing from the parents on the ES list is that you need to pay attention to the odd behaviors because they may be early warnings of autism.

Quite a few of the moms on the ES list are dealing with the dual diagnosis of both Down syndrome and autism. It wasn’t until just a few years ago that experts even acknowledged that such a dual diagnosis was even possible. All the odd behavior and sensory issues were written off as “just the down syndrome.” But now the estimates are that between 7-10% of children with Down syndrome also have (or get) autism. Wow! That is a huge percentage, and it requires that we take notice.

Here are a few resources to get you going:

First, just uploaded again, three articles on this site. Read Cyndi Ringoen’s excellent description of the types of sensory issues that are prevalent in autism, and how they manifest as odd behavior. Then Kay Ness lists steps to take toward recovery. Kay also describes sound sensitivity and SAMONAS sound therapy.

Here is the issue of Disability Solutions from 1999 in which Joan Medlen broke the ice on the issue of Autism in Down syndrome.

There is quite a bit of buzz about a recently published book by Dr. Natasha Campbell-McBride titled Gut and Psychology Syndrome. She points to gut dysbiosis as the basis of autism and other neurological disorders, and describes a path for recovery.

Here is the first of six YouTube videos featuring Dr. Natasha Campbell-McBride and Donna Gates (of the Body Ecology Diet) discussing gut health. Parents discuss whether the Body Ecology Diet(BED) or the Specific Carbohydrate Diet is most helpful in healing the gut.

The issue of vaccines and autism is hugely controversial, of course. But just too many parents point to a vaccine (or a day when their child received numerous vaccines simultaneously) as the time that marked the rapid descent into autism. The buzz that I am hearing is that use of antibiotics sets the gut up, and the vaccine pulls the trigger.

If you are the parent of a child with Down syndrome, please, please research vaccine risks yourself before you consent to giving them to your child. When the incidence of autism in DS is 7-10%, it behooves DS parents to be extra vigilant.

If you suspect that your child might have autism as well as DS, you might find support in the DS-Autism Yahoo group, which is highly recommended by some on the ES list.

One last thought. Kids with autism or autistic tendencies do not seem to do well on the standard formula of Nutrivene-D. International Nutrition provides a custom formula without many of the methylators which make many kids extra stimmy. Alternately many parents find that their kids do better with nutritional supplements specifically targeted to their unique issues.

Filed under: autism, diet, feeding, Health, medical, vaccines | Tagged: , , , | 2 Comments »

Gov’t concedes Vaccine-Autism Case

Posted on February 26, 2008 by Miriam Kauk

The existence of a vaccine-autism connection has long been claimed by parents and long denied by government agencies.  The question is particularly pertinent in Down syndrome because children with DS seem to be at higher risk for vaccine injury (with estimates of 5% – 10% rates of autism).

David Kirby posted a report of a concession of the US Gov’t in Vaccine Court on November 9, in which the government conceeded:

“The vaccinations received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder,” the concession says, “which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of ASD.”

Kirby has a lengthy analysis of this concession, worth reading by anyone concerned about the safety of vaccines (and all DS parents should be concerned about vaccine safety).

If the government is claiming that vaccines did not “cause” autism, but instead aggravated a condition to “manifest” as autism, isn’t that a very fine distinction?

and:

Its key words are “aggravated” and “manifested.” Without the aggravation of the vaccines, it is uncertain that the manifestation would have occurred at all.

When a kid with peanut allergy eats a peanut and dies, we don’t say “his underlying metabolic condition was significantly aggravated to the extent of manifesting as an anaphylactic shock with features of death.”

No, we say the peanut killed the poor boy. Remove the peanut from the equation, and he would still be with us today.

Full text of the case is here (from commenter tiredmom)

Filed under: autism, medical, vaccines | Tagged: , , , | Leave a Comment »

  • Martha (Downsyndrome)2

    Gracie (Down syndrome)2

  • Recent Posts

  • Blog Archives Topics

  • Archives

  • Copyright

    All text and images on this site are the property of Miriam Kauk unless otherwise noted. Images may not be copied and used without express permission.
  • Site Meter
Follow

Get every new post delivered to your Inbox.

Join 64 other followers