A word of caution---Janice, others

[Guest guest]

I am going to say a few things that may not be popular but thanks to

's openness and not censoring, I am going to proceed anyway. This

post speaks to Janice and could be done privately but I chose this way

for good reason as it has bigger application. Vitamin E is a beautiful

thing. I do believe it is going to be part of the path to my child's

voice. If able to be taken, sooner rather than later seems to be the

rule. Still, we saw two specific reactions and have coagulation labs

that say " not right now " until we see what is going on. I can

appreciate that every one of us on this board wants desperately to fix

what is wrong with or kids. Why else would we be here? So far in my

journey and all that I have read fish oil and E seem to be fairly safe

interventions. I have done both in moderation and for a reason. I wanted

to know why this was happening to my child. I searched the board for

kids who mirrored my son. Many of the fish oil and E success stories

seemed to be for kids who had apraxic symptoms and more of them from the

start. My son seemed different. He, like Mark, was growing into this. My

son also did not have the receptive skills seen in apraxics. Janice and

I have other similarities. We have both had chickenpox while pregnant. I

believe my son marinated in that virus and I saw it come out of him

recently from, of all things, coconut oil...it was not allergic reaction

but chickenpox. I know the difference as I have been on rotation diets

and allergin watch for 8 months. Janice, you are chelating a child. At

the moment things are moving around in him and no one can tell you for

sure what all that is and if all of it is coming out. You have a good

doc it seems from your posts. Do not start a new vitamin E protocol in

the middle of chelation. It is not fair to the Dr. who saw one thing on

labs and now something you are doing may change that. It is not fair and

could hurt your child. You are at the end of a very long race...do not

take shortcuts. Talk to your doctor and let him in on chamges. All these

neat things we talk about here...Dr. Bock's book, etc. All great things.

God Bless these docs for writing these books. Still, we must know what

we are dealing with or the remedies for what we see behaviorally

(apraxia, autism, ADHD) that are written about may not be so benign.

None of us wants to hurt our kids. I beg each and every person on this

list, veteran to newbie to do the following:

1) Read Dr. 's recent posts.

2) Look at the syndrome she is studying. She is studying a syndrome she

sees in her own child and in some of the children on this board. Many

are responders but not in the same way or for the same reasons so look

at that syndrome. Is your child a gut kid? If not is that because he is

a metal, viral, bacterial and/or allergic kid and the stuff has not come

out yet, as it did in my son, and his gut is not yet damaged. Is there

autoimmune disease in your family? If so, get the labs for that. There

are files on this board for a reason. Get all the apraxia labs listed in

the files and do not complain that insurance will not pay or you can't

get a doctor to order them. Find one. For the celiac and other hurdles

some docs won't run, Directlabs has a test combo for $500 and I think

they run it through Labcorp. An expensive option but an option

nonetheless. If your kid is a dietary responder find out why. Genetic

testing can be a Godsend. If you have a mito kid or a mitolike kid with

something as yet unidentified you need to know. Forget about delays, a

kid like that needs to be monitored for heart and organ stuff. If you

are looking at using probiotics I've seen a test that tells you which is

best for your kid. Now that one I am still investigating for the BS

factor so I'll let you know.

3) If you find your kid has trouble ventilating stuff then look at

environmental stuff. You don't have to be an obvious treehugger (I am

not). Just look at where they sleep, cut down on antimony, filter the

air (purifiers are $120 at Home depot), get organic sheets and wash in

the detergent that is safer with some vinegar (gets the pesticides they

put on our clothes and linens for transit purposes off). And yes,

filter your water with a good reverse osmosis filter. These are all

things done in the priivacy of your own home that don't out your kid as

a " bubble child " but prevent or reduce the chances of further issues. I

am not just talking delays but also preventing growing into asthma,

allergies, autoimmune disease and reducing carcinogen exposure. It also

allows for them to live safely and more comfortably and longer in a

worls that, well, ain't getting any cleaner.

It is a pain and expensive but environmental, once you do it, is

done...unlike tedious special diets that haunt some of us daily but we

grow to love them too because they help our kids.

Get the labs. Talk to your team of doctors, therapists, etc. Don't get

frustrated that there is no one place to find answers. Be a good medical

secretary and detective and keep asking questions. Your child is an

individual puzzle and you are his voice. What you are not, and make no

mistake about it, is a doctor. Much as we complain about diocs on

here...they do know what can happen when seemingly benign things go

south and we don't. They are your friend in this and they will answer

your questions so form good ones based on history and what you see and

ask away.

Oh, and quit fighting the word autism. It is where the research is. I am

not saying accept the diagnosis if it does not apply but if you have a

mito kid that word is your friend. If you have a kid like mine,

straddling some sort of almost apraxia and almost autism but not really

either that word is a Godsend. Whatever you have it is nothing new as

your child is who they were yesterday and you love them all the

same...only the answers are new.

Proceed safely but proceed. Follow Dr. and her studies. She

really is the only doc, other than maybe Dr. Agin, who gets the

complexity of the thing that has attacked our kids.

I apologize if I offended anyone, particularly Janice. I also apologize

if I have offended Dr. in the past. I am sure her hair hurts at

times with some of my crazy theories I had no where else to talk about.

My hope is she was too busy to read those.