Supplements are not necessarily safer than prescription medication

[Guest guest]

Margo,

When Dr. Goldberg thought I was giving vitamin A or cod liver oil

because his blood tests showed elevated vitamin A, I got yelled at big time.

Even though I never gave my son Vitamin A, I was giving chapter and verse on

how dangerous it can be if the body is given too much. I couldn't get a

word in edgewise to tell Dr Goldberg I never gave vitamin A. However,

that's when I realized supplements can be as harmful as prescription

medications and more is not necessarily better. Supplements have the

potential to be even more dangerous than prescription medications, because

they are not regulated nor go through the rigorous testing required for

prescription drugs.

When I read this list I understand the desperation that makes moms try these

things. Been there and done that. I was guilty also. We would do anything

to help our kids. But sometimes it puzzles me when moms are afraid to try

tested meds in favor of tons of supplements. Especially when these families

don't do regular blood tests to see the results of what they are doing.

Some parents don't keep track of liver functions to make sure that these

supplements are not hurting their children.

I worry that as moms and dads, we are practicing medicine without a license.

I know I did. ( I used to secretly wish I had gone through medical school

so I could have helped my son or find the cure. But I never would have

passed.) The thing that makes me even more concerned is the way some of the

DAN doctors throw thousands of supplements at our kids instead of treating

this more scientifically with one medication change at time and the blood

tests to measure the results. They as medical professionals should know

better.

Having said all that, I was desperate for help for and did the same

when we were seeing Sidney Baker, the doctor who started the DAN protocol.

And when Dr G said I needed to stop all the supplements, I secretly kept a

few until the trust grew that this man knew what he was doing. Of course

the trust never changed the fact that at times Dr G's bedside manner needed

help. His passion to help our kids sometimes makes him become too strident.

('s word for me that means too opinionated and overbearing.) But he

saved my kid.

In all fairness to Dr Baker, some of what he tried did help, but the results

we saw were nowhere near those from Dr Goldberg's protocol. In time, I

learned to trust this doctor and follow most of his advice. (We still argue

about the best way to do the behavioral and educational rehabilitation.)

Please find a practitioner who knows what they are doing and follows the

scientific method doctors are supposed to use.

Good doctors are hard to find. (We all know where the bad ones are!!!) In

addition, don't do anything that might harm your child.

Best,

Marcia Hinds

[Guest guest]

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> When Dr. Goldberg thought I was giving vitamin A or cod liver oil because

his blood tests showed elevated vitamin A, I got yelled at big time.

I've never seen Dr. Goldberg, but this " yelling " thing seems to be a theme. Why

didn't he just ask you straight up?

> Even though I never gave my son Vitamin A, I was giving chapter and verse on

> how dangerous it can be if the body is given too much.

My son did the high dose vitamin A protocol plus Bethanocol and we saw a jump in

language, concentration, eye contact as well as a decrease in hyperactivity. He

was able to actually sit still and do his classwork independently at school. My

kid has high measles titers and bowel issues. Perhaps the vitamin A protocol is

only helpful to those children.

I can't remember the specifics anymore, but the high dose is only given for a

few days, then tapered off to a normal dose. Vitamin A has been used in third

world countries to treat measles outbreaks.

> that's when I realized supplements can be as harmful as prescription

medications and more is not necessarily better. Supplements have the potential

to be even more dangerous than prescription medications, because they are not

regulated nor go through the rigorous testing required for prescription drugs.

I agree, but we have tried many different supplements and medications. Only a

handful gave us a positive response that resulted in a noticeable change in

functioning and behavior. A few things showed improvement in before and after

labs, but not really a difference in functioning.

I have taken most of the supplements I have given my son, and most have no

effect (I can feel) on me either. I don't think using them hurt him, but it did

hurt my pocketbook, and that is money that could have gone to other things.

With prescription meds, both of us feel a noticeable difference pretty much

immediately, which makes me believe they are a more serious undertaking than

supplements.

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> I worry that as moms and dads, we are practicing medicine without a license.

> I know I did. ( I used to secretly wish I had gone through medical school

> so I could have helped my son or find the cure.

Ditto.

>>>The thing that makes me even more concerned is the way some of the

> DAN doctors throw thousands of supplements at our kids instead of treating

> this more scientifically with one medication change at time and the blood

> tests to measure the results. They as medical professionals should know

> better.

This isn't my experience with DAN. They do use labs and then choose

prescriptions. They listen to your child's symptoms and recommend supplements,

but pretty general ones. A visit might go like this :

Child has diarrhea, sideways glancing, visual stims, underweight with bloated

belly, constant laughing and dark circles under his eyes. Doctor might say do

CDSA, organic acid profile and bloodwork for allergies, titers, antibodies to

myelin, fatty acid profile etc. Doctor will recommend after testing start

digestive enzymes, probiotics, multi-vitamin, vit C, and GFCF diet. When labs

come back, they prescribe anti-fungal/ anti-viral/ or anti-biotic as indicated.

Once child has kicked back yeast, bacteria, or virus, but still has issues, doc

might prescribe an SSRI, antipsychotic like risperadal, or ADHD med.

Is this really that different from ? I think some parents are going crazy

with the supplements all on their own because they can't afford the office visit

and labs, but feel they must do something.

Also, I wonder if you are thinking of the more famous DAN doctors with huge

practices and paid appearances. I think for those guys, their practices are so

big, they stop treating individuals and you get a bunch of stuff non-specific to

your kid.

There are some good DANs. I would continue to see Dr. Layton and Dr.

Jerry Kartzinel if we could afford it. Both of those doctors really listened to

my son's history, ran tests, and prescribed based on my son. With their help, my

son went from being very sick and severely autistic to mildly autistic, in

regular classes at school and very independent. We have not been able to afford

follow up labs and visits. We still are battling PANDAS, but now seeing Dr.

Latimer for that. I think someday, we will have the answers as to how to end

this nightmare of antibodies, hidden viruses and yeast buildup, but the answer

isn't an easy one.

Jen

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