Re: what are my son's chances? (warning - LONG)

[Guest guest]

Thank you so much for all the replies. I had a mishap with the

computer and just lost my post in cyberspace, so I will try this

again.

To begin, I probably should change my e-mail/user name since it is

from my pre-marriage and pre-kids life, and Georgie is actually the

name of my now deceased cat (LOL). Ironically, my cat had

autoimmune issues and had to take prednisone everyday. The vet said

it could have been caused by a bad reaction to his shots and

actually told me not to vaccinate him anymore. I wish I thought

more about vaccine damage at the time and took caution with my kids,

but I didn't. I trusted his pediatrician and as a result my son

regressed after his MMR at 15 months.

I want the autism diagnosis to be wrong SO badly, but it is not. My

son (his name is Jon, btw) is moderately autistic. We have some

verbal and visual stims, feeding issues that are now pretty much

resolved (!), and we work on things like eye contact, pointing,

and responding yes/no. I remember talking to therapists when he was

three about working on waving bye bye and responding to his name,

and it was so surreal. Jon did both of those things effortlessly

when he was just twelve months old ... is this MY Jon we were

talking about? How could this be? Autism is cruel.

You asked for more information about my son. Jon is sweet, funny,

smart, and adorable. My first concern with him was because he would

gag on the slightest food texture. It was as though he didn't know

what to do with his tongue. He had feeding therapy for awhile and

then one day he just started eating properly.

For some reason I just thought, oh now that he eats he will be able

to talk. Well, he has been in speech therapy and OT and music

therapy and gets ABA but the speech is still such a struggle. We

have seen progress, but it is so slow. He does say some things (ex.

can label shapes, colors, letters, numbers, body parts, animals,

foods, etc.) and will make some simple requests like 'go with me,

open, help me, go up'. The hardest part is understanding him. He

sounds like he is deaf when he talks and makes lots of phonological

errors. He is consistent with his mistakes for the most part and

does seem to improve to modeling.

Concerning therapy, I actually just set up an apt. with Talk Tools

to have him assessed. I am very eager to see what the evaluation

shows and to have him finally work with someone who knows about

programs like PROMPT and Kaufman. Also, in regards to DAN, I have

been to four DAN doctors (two well-known), but I cannot seem to find

a fit for us. Jon is so sensitive to supplements, and he can never

handle the mega doses they want him on. If anyone knows of a DAN

who will do phone consults, knows their stuff, and is less

aggressive in their approach, please send their name to me. I have

thought about chelation, but right now I am just so confused and

scared out of my mind of harming Jon even more. I read on some

lists how oral chelators are best/safest and then I go to DAN and

they tell me not to do oral but suppository or IV to bypass the

gut. I read the EDTA is the safest and then I read that it can

cause harm if used on a child with mercury. My mind is like a see-

saw ... I am afraid to do nothing yet afraid to make a mistake. If

only there was some consistency. The more I read and research, the

more confused I become.

I did try CLO in the past but I did not do the EFA in the proportion

they speak about on this list. I did decide to start supplements

out again, one at at time, one a week (since my son is so sensitive)

and plan to start with the EFA and vitamin E. I know he is very

reactive to food as well, and am trying to gradually work into the

SCD (now gf/cf).

Anyone still reading (LOL)? Thank you so much for the offer to

help. I appreciate any advice, biomed or therapy. Sometimes I feel

so strong like I can take on autism and win, and other times I just

want to curl up in a ball and cry. I NEED to find my son ... he is

in there, and time is ticking.

Thanks.

Michele

>

> Hi Michele and welcome!!

>

> Tell us a little bit more about your son. Diagnosis vary depending

> upon where you live -what professional does the evaluation etc. We

> have parents in this group who have a child that received

completely

> different diagnosis from different professionals in the same

month. Then there are

> some here who have children that were at one time diagnosed as

autistic

> or PDD that later found out that was a misdiagnosis, or who then

> started their child on fish oil and the child appeared to drop

some symptoms.

> If your child is communication impaired even with one of the most

> severe impairments such as apraxia -there's so much hope for

complete

> mainstream in school and life. The two conditions where the

> prognosis may not be as bright are for those with a diagnosis of

severe

> mental retardation, or severe autism -which in my opinion isn't the

> same thing as what most of the children with " autism " have today.

> Most in this group that have children diagnosed with autism fall in

> the range of mild to moderate autism.

>

> As far as IQ -we make sure the verbal disabled are tested

appropriately as most are not.

>

> I just posted a recent update of my son Tanner who is now 11

> http://www.debtsmart.net/talk/tanner.html and prior to EFAs and

even

> after months of therapy he was diagnosed with severe profound

> apraxia -dysarthria -sensory integration dysfunction -hypotonia.

> That didn't even include the later constipation issues we dealt

with

> for years. Just about all of it's resolved now- but his story as

> well as the stories of so many more just like him -one success

story

> after another -are in the archives here. There are many in The

Late

> Talker book as well -and many of those stories are pulled from the

> parents here. (with permission of course!)

>

> In general prognosis depends upon getting an appropriate diagnosis

as

> early as possible for therapy to be started as early as possible.

> Amount of diagnosis and severity of each. Cognitive ability and

> motivation. Amount of appropriate therapies.

>

> The fact that you are here in this group and your child is still so

> young -it's obvious he has an incredible mom who is doing all she

can

> to find out how to help him best early -and you are in the right

> place! This happens to be an intelligent group of parents and

> professionals who don't accept " never " or " slow " or " he can't " -but

> when we don't hear what we want for our child start blazing our own

> trails to success that others are finding and following. This is

an

> uncensored group in that all views are shared -so while it may at

> times be obvious we don't all agree -as the list owner I don't

decide

> that only my views are expressed. We all continue to learn and

grow

> to help our children and each other. And it works. The success

rate

> in this group is exceptional -check the archives.

>

> So again -tell us a bit more about your child (Georgie?) other than

> his age and diagnosis so we can perhaps as a group offer

suggestions

> that may assist both of you to a brighter future!

>

> =====

>

[Guest guest]

Your son's supplement sensitivity and feeding history sound familiar.

We stopped shots after the MMR (he got six shots in 3 months...three

with mercury). He is aging out of EI with all goals attained and is

a happy, well adjusted little boy with articulation issues. Another

thing that rings true for him is the deaf sound (that was milk

allergy for us). If you are going to DANs and the regular stuff is

not panning out it may be a simpler thing. I think our deal is

fluoride and mmy kid trapped a few different metals and some remain

in the brain. My son had clinical signs of fluorisis and the

interventions I took that complied with fluorisis studies showed

promise. I want to go to a DAN for this but fluorisis is a DAN

afterthought and my son is mild compaered to what most see. I have a

DAN family doc for labs others won't do and am pursuing the fluorisis

theory with an environmental allergist. Fluoride affects the

endocrine system and wacks things out. May be part of your puzzle

anyway. I'll keep you posted.

> >

> > Hi Michele and welcome!!

> >

> > Tell us a little bit more about your son. Diagnosis vary

depending

> > upon where you live -what professional does the evaluation etc.

We

> > have parents in this group who have a child that received

> completely

> > different diagnosis from different professionals in the same

> month. Then there are

> > some here who have children that were at one time diagnosed as

> autistic

> > or PDD that later found out that was a misdiagnosis, or who then

> > started their child on fish oil and the child appeared to drop

> some symptoms.

> > If your child is communication impaired even with one of the most

> > severe impairments such as apraxia -there's so much hope for

> complete

> > mainstream in school and life. The two conditions where the

> > prognosis may not be as bright are for those with a diagnosis of

> severe

> > mental retardation, or severe autism -which in my opinion isn't

the

> > same thing as what most of the children with " autism " have today.

> > Most in this group that have children diagnosed with autism fall

in

> > the range of mild to moderate autism.

> >

> > As far as IQ -we make sure the verbal disabled are tested

> appropriately as most are not.

> >

> > I just posted a recent update of my son Tanner who is now 11

> > http://www.debtsmart.net/talk/tanner.html and prior to EFAs and

> even

> > after months of therapy he was diagnosed with severe profound

> > apraxia -dysarthria -sensory integration dysfunction -hypotonia.

> > That didn't even include the later constipation issues we dealt

> with

> > for years. Just about all of it's resolved now- but his story as

> > well as the stories of so many more just like him -one success

> story

> > after another -are in the archives here. There are many in The

> Late

> > Talker book as well -and many of those stories are pulled from the

> > parents here. (with permission of course!)

> >

> > In general prognosis depends upon getting an appropriate

diagnosis

> as

> > early as possible for therapy to be started as early as possible.

> > Amount of diagnosis and severity of each. Cognitive ability and

> > motivation. Amount of appropriate therapies.

> >

> > The fact that you are here in this group and your child is still

so

> > young -it's obvious he has an incredible mom who is doing all she

> can

> > to find out how to help him best early -and you are in the right

> > place! This happens to be an intelligent group of parents and

> > professionals who don't accept " never " or " slow " or " he can't " -

but

> > when we don't hear what we want for our child start blazing our

own

> > trails to success that others are finding and following. This is

> an

> > uncensored group in that all views are shared -so while it may at

> > times be obvious we don't all agree -as the list owner I don't

> decide

> > that only my views are expressed. We all continue to learn and

> grow

> > to help our children and each other. And it works. The success

> rate

> > in this group is exceptional -check the archives.

> >

> > So again -tell us a bit more about your child (Georgie?) other

than

> > his age and diagnosis so we can perhaps as a group offer

> suggestions

> > that may assist both of you to a brighter future!

> >

> > =====

> >