August 11, 2005

Duffy's Dilemma

Duffy is a dad that is beginning to take a look at the biomed approach to autism. He has expressed feeling conflicted in a way that I think people in his stage come by naturally. It is an experience that I went through myself in the spring of 2004. As this debate gets more and more attention, many more parents will find themselves in this place. I wanted to share the advice I am offering to him.

The problem I am having is knowing who to rely on for information. The author of the Salon article sounded authoritative and cites some reputable sources. He cast dispersions on the Geiers research, again, with foundations. Others support the Geiers wholeheartedly. I find myself at a loss.

It took me almost a full year of reading (and seeing my son get better and better) before I had enough information under my belt to start making public assertions about autism research. You might feel a sense of urgency to get this whole thing sorted out in your mind before you try anything with your son, but this issue is so huge that if you try to do it all at once, your brain will melt.

Brilliant scientists who have spent their careers on it have not figured it all out yet.

Do yourself a favor, just focus on your son. Get the book I mentioned, Children with Starving Brains, sort through that information, which is a lot of information, then come back to this whole discussion.

You have heard what the CDC has to say. You have heard what most mainstream pediatricians have to say. Take a few weeks, look at what the big picture of the biomedical theory and approach, then take a hard look at your son and see if any of it seems to apply to him.

If you get an understanding of the illness through the biomed lens and an understanding of the treatment, then you can come back to the 'main stream' medical view and ask the right questions of them. If they can answer your questions sufficiently, and describe their problems with the biomed approach adequately, then throw the book in the trash, get off the internet and go tickle your son.

If after looking at the biomed picture, the CDC’s stance that 'we don't really know what causes autism or what the mechanism could be' rings hollow (as it did for me) then find a DAN doctor and get your son tested.

If they find the usual problems, metals, digestive yeast, vitamin and mineral deficiencies food allergies, then try the GFCF diet for a week.

If you see an improvement, then try adding fish oil.

If those help, try whatever supplements the doctor recommends.

If they help, try chelating.

Do things one step at a time and trust the great parental instincts God gave you. If something does not seem right, stop. You are the expert on your son. You know him best.

Go ask a million questions about it. Talk to other doctors. If you buy the book off of her website, you can join her yahoo group and ask her questions there directly. She is on every day giving parents advice.

Talk to other parents. They love to share their experience, good and bad, and will be a huge help.

If you hear something from a mainstream doctor that gives you pause, take the question to the biomed community and see if they can address your concern.

If you hear something from a DAN doctor that gives you pause, take the question to your mainstream pediatrician and see if they can address your concern.

Ask questions of everyone, you will begin to see by people’s answers who is really taking a thoughtful look at the problem, and who is just paying lip service.

Sorting through this stuff is like drinking from a fire hose, just take it one sip at a time.

Most importantly, keep checking back with your child. Remember that he is different from every other boy with autism. Do what works for him.


Ginger said...

A comment on my own post.

There is SO much more advice to be given, and I would love for parents who have already passed through this stage to offer their thoughts too. Both parents who do biomed and who don't.

The thought I had after posting was that if you decide to go down that road, you need to be checking in with the family regularly to make sure that the biomed path, with all its demands, is not overwhelming your family.

More than anything your child needs a loving home and sane parents. Make sure you balance your son's health needs with the rest of the family's needs.

It is always good to keep this age old axiom in mind:

"If mamma ain't happy, ain't nobody happy."

shaunasworld said...

Hi Ginger just wanted to say I love your blog! Your son is beautiful!

Kyra said...

i'd like to add that some testing is pretty easy and not too expensive. we did a poop test to see what 'bugs' were and weren't in the intestine (scoop some poop into a vial), a saliva test to get prelimary info on what food allergies there may be (hold cotton in the mouth for 60 seconds), and a pee test after taking a harmless drug that pulls metals from the body to see what metal levels are(take the pills, then pee into a container over a 6 hour period). all of these together cost $150.00.

we found the need for 'good' bacteria for digestive support (again, not expensive and at the health food store), digestive enzymes since the pancreatic output was weak, some food senitivities (we were already implementing the GFCF)and no problems with metal levels. this made sense since our son with Asperger's never got any thimarisol in the vaccines (i insisted from the start)and got less than the recommended amounts, but i did receive two Rhogam shots loaded with thimerasol early in the pregnancy so, who's to say what effects that had on my son's developing brain... effects that are untraceable now. maybe none? but there is no way to know.

the good bacteria support and the digestive enzymes can't harm your child. the diet is expensive and takes commitment to follow but also doesn't harm your child. vitamins and supplements can be enormously helpful and are easy enough to try with some testing and a good recommendation by a doctor, DAN doctor, or even naturapath.

i guess my point is, all of this is something we, as parents, can try with out too much stress or financial burden. and the possible benefits to our children are HUGE. and if you try it and it doesn't help, at least you know you aren't leaving those stones unturned.

Moi ;) said...

My husband is Joe Vitamin, and was a macrobiotic for years. Way back when my son was 2 and still on the bottle, we used to put acidophilus in it. Acidophilus is the good bacteria in yogurt that kills the bad bacteria in the intestine (the gist of it).

Also we have given him digestive enzymes in the form of papaya enzymes for a long time. We didn't know he was autistic for sure until he was 10, so there you go. What works is what works -

You can buy the powder in the local health food store's refrigerator section. Enzymes are available everywhere - even the MeB12's are a form of enzyme and do much the same job (we use them in tablet form, not the shots).

Has anyone ever used the test kits you can buy online? If so where did you get them?

Art hamid98 said...

Also we have given him digestive enzymes in the form of papaya enzymes for a long time. google