Repost: Questions about Supplements and Dx - New Here, Please Help

January 31, 2007

Hi everyone...I'm new to the group. I have a son that is almost 3

and a half. He has not been dx with apraxia, but I have my

suspisions. He has been evaluated by 2 Dev. Peds, 2 speech path, and

the county has done a complete eval. All we got is that he has a

receptive and expressive developmental delay. He has never had any

problems with eating or nursing, but he still can't seem to figure

out how to drink from a regular cup without spilling it all over

him. It took him a long time to figure out how to use a sippy cup,

so he used straw cups first. He has had some medical problems that

could be the source of his delay. He was born with Hirschsprung's

Disease and spent about 3 months of his first year in and out of the

hospital. He is just learning to put words together in short (2-5)

word phrases, and his articulation isn't great. Sometimes I notice

that he will say a word one way, only to say it again another way.

Not sure if this is just because he hasn't really learned the word

well enough or not yet. He only just started calling me Mommy about

3 months ago, but he has said Daddy for a long time. I do beleive

that he has a receptive delay too because he doesn't always seem to

understand what I'm asking him. He still babbles (ex. da da da duh

duh) when someone asks him something he doesn't understand or when

he doesn't know what else to say. Yesterday a 5 year old asked him

why he doesn't talk like a normal person, so it is obvious to other

kids too. His last dev ped mentioned that she thought he had low

tone too, but no other doc has mentioned it before other than the

NICU nurses who mentioned that he was a bit " floppy " . His previous

dev ped mentioned that he had ataxia/tremor, and wanted us to see a

neurologist (which we havn't done yet). He also has a funny gait,

almost like he has bad balance or something. His feet are pronated

so we just got him into some braces to correct that, and we are

hoping it will help with the gait and balance. I have also wondered

about sensory issues because he hates getting his hair cut, trying

new foods, and certain noises used to set him off (doesn't seem to

be much of an issue anymore though). We did a genetics study and

everything came out fine. Anyway...sorry so long, but I am wondering

how everyone learned about the supplements, and do you think they

would do any good in our situation? I hate to keep dragging my son

to the doc withall the various worries I have (my husband thinks I

should just leave him alone and let him catch up on his own, but we

do have a teacher that comes out to the house 1x a week for an

hour). Do we need a dx to use the supplements? How do you know what

supplements to use? Who gave your children the dx of apraxia?

Sorry this was so long, but I wanted to give you some background

before asking about the supplements...

Thanks for your help!

February 1, 2007

Since there hasn't been a response to this one yet, I will try to

answer. If someone else can add more, please do.

I am surprised that he has not received a dx after seeing so many

dr's. My ds got the apraxia (dyspraxia) dx from one visit to a dev.

ped. It seemed to me like that's what they do- evaluate & hand out a

dx. If you suspect apraxia you should look at the book " The Late

Talker " (probably at your local library).

As far as finding out about supplements, I have learned a lot by

reading the posts here. A book I recommend is " Children With

Starving Brains " (also at my library). It is written about autism,

but the treatments that help autism can also help apraxia

(considered " on the spectrum " ). I also do lots of internet searching

of course...

I think the supplements could really help. Look at some of the posts

here about vitamin E & low tone/sensory issues; ProEFA, EPA, &

speech; L-carnitine or carnaware. You don't need a dx for

supplements. It can be a bit of an investment, but if it helps then

I think it's worth it.

Is your son in any therapies? You mentioned a nurse visiting the

home one time a week? Has he qualified for help through the school

district? I would think he might be eligible for occupatinal

therapy, physical therapy, speech therapy? Do you have any insurance

to cover additional therapies beyond what the district will provide?

Also, what part of the country are you in? Maybe there's someone who

lives in the same area who could recommend a dr/therapist/etc.

HTH,

, mom to Nate, age 3

>

> Hi everyone...I'm new to the group. I have a son that is almost 3

> and a half. He has not been dx with apraxia, but I have my

> suspisions. He has been evaluated by 2 Dev. Peds, 2 speech path, and

> the county has done a complete eval. All we got is that he has a

> receptive and expressive developmental delay. He has never had any

> problems with eating or nursing, but he still can't seem to figure

> out how to drink from a regular cup without spilling it all over

> him.

His last dev ped mentioned that she thought he had low

> tone too, but no other doc has mentioned it before other than the

> NICU nurses who mentioned that he was a bit " floppy " . His previous

> dev ped mentioned that he had ataxia/tremor, and wanted us to see a

> neurologist (which we havn't done yet). He also has a funny gait,

> almost like he has bad balance or something. His feet are pronated

> so we just got him into some braces to correct that, and we are

> hoping it will help with the gait and balance. I have also wondered

> about sensory issues

but I am wondering

> how everyone learned about the supplements, and do you think they

> would do any good in our situation?

Do we need a dx to use the supplements? How do you know what

> supplements to use? Who gave your children the dx of apraxia?

>

> Thanks for your help!

>

February 2, 2007

A book I recommend is " Children With

> Starving Brains " (also at my library). It is written about autism,

> but the treatments that help autism can also help apraxia

> (considered " on the spectrum " ). >

Apraxia isn't considered " on the spectrum " by most developmental peds

knowledegeable in the field of apraxia/dyspraxia/developmental

coordination disorder. While apraxia occurs frequently in children with

autism, the reverse is NOT automatically true. Having taken my almost 7

yo son to 3 separate developmental peds now, I can tell you that they

have each made it clear that my son is not " on the spectrum. " I think

it does a disservice to others to raise concerns that needn't

automatically be raised, especially when it means potentially chasing

treatments that are not effective for apraxia, but might be effective

for autism.

February 2, 2007

Hi , thanks for the response. We are military, so we mostly see

military providers. Ricky has a county teacher (I think you thought

nurse?) that comes out to our house one time a week for an hour.

When I've inquired about additional services, I was told that his

delays are not significant enough and that he would need to be

delayed in 3 or more areas to qualify for the preschool program.

Both dev peds agreed with the dx of receptive and expressive

language delay...not sure why they wouldn't have considered Apraxia,

but perhaps it was because they were just observing him at play and

not actively trying to engage him in conversation. It looks like we

will be getting another eval by an SLP soon through the county.

Perhaps if it is apraxia, then he/she will recognize it. He is

talking in short sentences now, but a lot of what he says is still

hard to understand. He still relies on babble (dadaduhduh, etc.) for

complex statements and will throw in a recognizable word somewhere

so you can get the basic idea of what he's trying to say. His

vocabulary is great, it is his articulation that needs work. He's

pretty good at repeating words right after he hears them, but his

articulation of that word then gets worse when he says it on his

own. There are lots of words that he uses every day that are said

perfectly, but it's all the other words he has problems with. And he

can say ball and baby, but then can't use the B sound for " balloon " .

Things like that just make me wonder...

Also,don't know if it is related or not, but he still mouths

EVERYTHING. I am constantly after him to get whatever he is holding

out of his mouth. He also bites his fingernails down to the quick,

and they sometime bleed from it. I would think that at 3 and a half

that he would be past the putting everything in his mouth stage.

But, he has no problems using his mouth or tongue, and he can blow

bubbles and make raspberry noises.

Anyway, I think I've rambled here enough. I just got a book in the

mail today called " Childhood Speech, Language & Listening Problems,

What Every Parent Should Know " . After I read this book I will check

out the Late Talking Child book. Perhaps these will shed some

light...

> >

> > Hi everyone...I'm new to the group. I have a son that is almost 3

> > and a half. He has not been dx with apraxia, but I have my

> > suspisions. He has been evaluated by 2 Dev. Peds, 2 speech path,

and

> > the county has done a complete eval. All we got is that he has a

> > receptive and expressive developmental delay. He has never had

any

> > problems with eating or nursing, but he still can't seem to

figure

> > out how to drink from a regular cup without spilling it all over

> > him.

> His last dev ped mentioned that she thought he had low

> > tone too, but no other doc has mentioned it before other than the

> > NICU nurses who mentioned that he was a bit " floppy " . His

see a

> > neurologist (which we havn't done yet). He also has a funny gait,

> > almost like he has bad balance or something. His feet are

pronated

> > so we just got him into some braces to correct that, and we are

> > hoping it will help with the gait and balance. I have also

wondered

> > about sensory issues

>

> but I am wondering

>

> > how everyone learned about the supplements, and do you think they

> > would do any good in our situation?

> Do we need a dx to use the supplements? How do you know what

> > supplements to use? Who gave your children the dx of apraxia?

> >

> > Thanks for your help!

> >

>

February 2, 2007

,

I would make sure you have the right diagnosis. Alot of communication

impairments look the same but are different. My son had the label of receptive

& expressive Language delay. In my district that means they don't service him,

they assume he is Retarded. They were wrong. He isn't retarded he is severe

disorder of Language and needs services. He has PDDNOS and Dypraxia and CAPD.

Central Auditory Processing Disorder in my sons case it is like being in a

classroom where everyone is speaking Spanish but him, so he doesn't understand.

Because he doesn't hear right, he had a hard time talking correctly. My son had

to be taught how to pronoun he letter of the alphabet. He thought you could

make all the letters moving his lips and tongue the same for every letter. His

mouth needed to be taught. That is the Dyspraxia for him. He didn't always

communicate very well to others because he knew they wouldn't understand, so why

try to explain. PDDNOS for my son he doesn't socializ

e age appropriate with peers, and he doesn't communicate at age level. With the

appropriate services he can be taught how to communicate and socialize with his

peers. My son is 13 and I am fighting an uphill battle right now with my school

district. And paying a private tutor to give my sons academics and language

skills a boost.

I just want you to make sure for your childs case that they diagnose correctly

so he gets the right services for him.

Good Luck,

Lorraine

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