New and need SERIOUS (as in quick!) help!

[Guest guest]

Hi everyone. I'm new to the group and would like to introduce us and ask for

specific help. First I'd like to give you some brief (yeah right!) background

because it will save time with answers that anyone may have. Also - this is

long but I really do need help!

DD has had many diagnoses but the ones that have proven correct are: FAS (fetal

alcohol syndrome - and no I'm not her bio mother and I did NOT do this to her),

PDD-NOS, ADHD and various learning disabilities. DD is 6 years old. She was 4

when properly diagnosed.

And for anyone that may be curious - I don't mind answering specific questions

outside of the group - DD was adopted from Russia in 2006 - quite the

controversial topic in the last week........

DD has, since being properly diagnosed, undergone one on one ABA therapy as

prescribed by the international adoption specialist (who is a

neuro-psychologist), OT for SPD, etc., etc., etc. I'm sure you can all get the

picture. In recent times she is on the Feingold diet/program. We have also had

allergy testing and she is casein allergic. We know she has soy and sodium

benzoate sensitivities. In short - she is extremely reactive to so many things

that go into and on her body that I just want to scream lately! Saying she is

extremely reactive is a major understatement to give all of you an idea of how

she is.

My problem is - FAS sets a child up to have many autism like problems (and in

fact - about half of FAS children are also co-morbid on the autism scale such as

DD is) but in the case of the FAS child/adult - the route cause is known. But

it is amazing to me how many people just really don't know what the answers may

be for an FAS child's meriad of problems. And that includes both mainstream and

alternative medicine community. So I really feel like I'm often breaking new

ground here (not with the autism community but with the FASD - Fetal Alcohol

Spectrum Disorder - community). Some of the best answers I've found for DD have

been through the autism community. Which is why I'm here as a new member of

this group.

A little about me - DH and I couldn't have children and we are also (as is

common with international adoption) older parents. I have often been told I'm a

great writer, I definitely have my attention on details and can reach to great

heights with research. But I also have limited time as DD, with her FAS

behaviors, is quite the challenge - think extreme autism behaviors here! But

before I go any further - we absolutely love this little girl and can't imagine

sending her back to Russia but can most certainly understand what may have

prompted Ms. Hansen to send her son back (oh - just don't get me started

there!!!) - Ms. Hansen most certaintly didn't do what was best for her son....

And by the way - due to ABA therapy we were told from several professional

sources that DD's PDD-NOS has become " resolved " (yeah!!!) and anything that we

see that is autism like behavior is actually either excitement or anxiety

related. Please keep what I just said in mind when you answer my questions

below.

Our problems and questions are:

1. DD did absolutely great on Stage 1 Feingold (and at that time we were not

getting into our backyard pool - a key point here). Now we are having total

major problems with Stage 2.

2. Autism doctor (not a DAN! doctor but just as knowledgeable) said that GFCF

was not necessary (this was prior to allergy testing results) because DD was

what she called the " canary in the coal mine " sensitive with regard to what

Feingold takes out and we had achieved the maximum behavior improvements.. And

I think I also mentioned other non Feingold no-no's that we have discovered are

definite no-no's for DD. However, DD still showed physical signs of a true

allergy, thus the allergy testing that was done.

3. Casein allergy is mild so we were told not to have casein in her diet every

day, limit it and she should outgrow the caseine allergy. Her geneticist doctor

(follows her for FAS) says it is possible she will outgrow the allergy. We were

also told that limited goat's milk products are okay because the allergy test

was for cow's milk casein.

4. Biggest point is - I have discoverd, once we entered into Feingold Stage 2 -

that DD is very phenol sensitive!!!!!@#AT##@%!!! That on-line acceptable

expletive should say it all! It was only through an intensive google search

that lead me to TACA (which an ASD mom told me about months earlier) that said

that chlorine pool water ramps up the phenol problem. What a Godsend that

was!!!! DD had major problems with our pool from day one!!!

So - in a research round about way I found my way to enzyme treatment and this

group. DD is taking Trienza chewables and No-Fenol (both swallow capsules and

chewables depending on how fast we need them in them in her system). We also

have magnesium sulfate (I think - not looking at the container) cream from

Kirkman labs recommended from Dana's sight. I've also decided that we need to

get back with the doctor for specifics. But I thought this group could

help......!!!!!::

I've been following the recommendations from Houston and Kirkman labs and still

having MAJOR problems with Feingold Stage 2 fruits and veggies and our chlorine

pool. Feingold stage 1 was bliss with the occasional exception of too much

casein which, at the time we were on Stage 1, we didn't know was contributing to

the problem.

So here are the questions:

1. Is hemp milk okay as a casein free alternative - I looked it up and saw that

it does not contain THC (what has this world come to that we have to ask these

questions!!!!!). I was told by other Feingold moms that hemp milk is a great

item for cooking but then they don't have FAS and or ASD children.

2. Have any of you changed your pools over from chlorine? If so - what have

you changed to? Does it stain hair/pool (hair being more important as DD and I

are natural blondes and could have major problems with alternatives)? Any

particular manufacturer you recommend or would tell me to stay clear of? We are

committed to changing from a chlorine system to an alternative - DD is EXTREMELY

reactive to our chlorine pool to the point it makes us very upset or sad.

3. Any other enzymes we should be giving DD due to her phenol problems? We

really want DD to be able to have Feingold Stage 2 items but can no longer put

up with the problem they create but when I think about going back to Feingold

Stage 1 - all our successes involved casein which we now have to avoid. Oh -

keep in mind - we (parents) are trying to stay complian with DD's diet because

she has come to this diet just very shortly before turning 6.

4. What doses of the enzymes I mentioned above do you, that give these enzymes,

recommend. Also dosing time before meals and snacks.

I know that if I researched long enough I'd find my answers but I don't have the

time (who among us does?). So that is my reason for turning to this forum.

Best to everyone who are still seaking answers. I am a fellow traveler. And I

do help others once I know and can adequately answer other's questions. I'm so

sorry for how long this but I really need answers soon.

Jean

>

> My daughter is almost 4 yrs old and has reactions to several foods, although

she has never been allergy tested. Right now she is on a very limited rotation

diet. She's also on Trienza (2 caps 3x a day) and No Fenol powder (1/8 tsp 2x a

day). I do have her on a multivitamin, but just a generic one, Now Foods

probiotic-10, and epsom salt baths 3-5x a week. She has a language delay also

and is getting speech therapy once a week. Before I put her of gf/cf diet at 2

1/2 yrs she only said about 15 words consistently, but now talks all the time.

>

> She seems to have trouble with transitioning from one activity to another. It

also seems worse at preschool than it is at home and the only thing I can think

of is maybe the paints or something else that she plays with there could be

setting her off. I do notice some obsessive behaviors, like she has to put her

blankie on her stepstool before standing on it to brush her teeth, then she has

to get her toothbrush wet and tap it on the side of the sink before I can put

toothpaste on it. This is probably the worst thing she does as far as obsessive

behavior. If I turn on her water for her, she gets upset with me. Her bm's are

mostly normal except every once in a while they will be really loose. Her diet

never changes, so I'm not sure if it's due to yeast or bacterial overgrowth or

possibly a nervous stomach? I did try OLE and GSE, but she seemed to act out a

little more each time I tried to increase the dose...maybe that's normal to have

an adjustment time? I started with 2 drops and worked up, increasing every 4

days, but only did this for about a month.

>

> How long is it safe to use GSE and OLE for? Do I need additional yeast

fighters like Candidase? What are the symptoms for PANDAS? I've heard

obsessive behaviors can be caused by this.

>

> Are you working with dr's at all, or doing this on your own? Is it possible

to self treat/heal?

>

> I am feeling very lost and overwhelmed in all of this. I truly appreciate any

help you can give me.

>

>

>

[Guest guest]

> DD has had many diagnoses but the ones that have proven correct are: FAS

(fetal alcohol syndrome - and no I'm not her bio mother and I did NOT do this to

her), PDD-NOS, ADHD and various learning disabilities. DD is 6 years old. She

was 4 when properly diagnosed.

Consider phenol issues and yeast overgrowth first.

http://www.danasview.net/phenol.htm

http://www.danasview.net/yeast.htm

> My problem is - FAS sets a child up to have many autism like problems

I know someone also dealing with FAS in two adopted children. If you are

interested, send me a private email and I will connect you.

> 1. DD did absolutely great on Stage 1 Feingold (and at that time we were not

getting into our backyard pool - a key point here). Now we are having total

major problems with Stage 2.

Try using No-Fenol enzyme. My son could eat many high-phenol foods with this

enzyme, altho not all.

http://www.houstonni.com/

> 3. Casein allergy is mild so we were told not to have casein in her diet

every day, limit it and she should outgrow the caseine allergy.

My son did not " outgrow " his food issues. However, after ALA chelation and

several supplements, he went from not being able to eat anything, to being able

to eat everything.

>>that said that chlorine pool water ramps up the phenol problem. What a

Godsend that was!!!! DD had major problems with our pool from day one!!!

Pool problems are usually associated with yeast overgrowth and/or taurine

deficiency [which causes chemical sensitivity]

http://www.danasview.net/chlorine.htm

> I've been following the recommendations from Houston and Kirkman labs and

still having MAJOR problems with Feingold Stage 2 fruits and veggies and our

chlorine pool. Feingold stage 1 was bliss with the occasional exception of too

much casein which, at the time we were on Stage 1, we didn't know was

contributing to the problem.

Which fruits/veggies have you tried? No-Fenol did not help my son with certain

ones, primarily orange/green ones. He needed several supplements for that

problem.

Also, try adding molybdenum. And consider chelation. My son lost his phenol

problem at round 10 of ALA chelation. I lost mine at round 50.

> 2. Have any of you changed your pools over from chlorine? If so - what have

you changed to?

Most people I know of, changed to a salt-water pool.

Try giving taurine and increasing the yeast protocol.

http://www.danasview.net/yeast.htm

> 3. Any other enzymes we should be giving DD due to her phenol problems?

Depends on which fruits/veggies she still does not tolerate, even with enzymes.

Dana