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Regular pediatricians know very little about development, and even

less about biomedical treatment. You will not get help from any

doctor or therapist regarding vitamin E, except MAYBE a DAN doctor.

You are experiencing what most of us here have experienced: you are

the only one who is capable of piecing it all together. I haven't

taken a science class since I was a sophomore in high school, but I

have had to ask for specific lab tests, referrals, therapy, etc. and

I have " prescribed " a number of vitamins, enzymes, and supplements

for my own son. I am the one who picked up all the issues: speech

delay, low tone, motor planning issues, etc. Anything I haven't

figured out is not being addressed. It is ridiculous!

This board is great. For most advice from these parents, you can

google the topic and get confirmation on it's accuracy. Except

vitamin E -- that's 's discovery, and the rest of the world

hasn't caught up yet.

Post any question, and someone here will either know the answer or

know where to look for it.

in NJ

P.S. When researching fish oil and vitamins, remember that people

here are recommending THERAPEUTIC doses, not RDA's. We've been doing

a high dose of vitamin E for several months with no ill effects (no

huge " wows " either, though).

>

> We just had our long awaited visit to the pediatrician to get a

> referral for a speech therapist. It was a good visit but I was a

> little dissappointed with how little the doctor understood about

> speech disorders. At first I don't think that she really believed

me

> even though she was more than willing to set up a referral. She

just

> said this isn't my specialty and I can't diagose it. I had to

suggest

> the hearing test. I wanted her to really hear his speech so I

brought

> some pictures and things for him to talk about with her. When he

did

> talk to her she asked me

>

> " Is this the best he can do or is he being shy? "

>

> I'm thinking, I told you had had speech issues, didn't you believe

me?

> I just said, Yes this is it, the issue is not his effort, he is

> having difficulty making sounds.

>

> Hopefully, I educated her a little and it will help other children

> that see her.

>

> We talked briefly about Vitamin E, she said that that could be

> dangerous and reccommended Udo's Oil. Has anyone heard of that? If

we

> wanted to do vitiamin E do we need a doctors help or could a speech

> therapist help with it?

>

> We have the hearing test coming up with an Otolaryngologist (sp?)

> They specialize in everything related to the head and neck. Does

> anyone know if they deal with speech issues also?

>

> The referral we have for speech is with the school system. We will

> probably use this but I'm also looking at some other options.

>

> Ayana

>

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> >

> > We just had our long awaited visit to the pediatrician to get a

> > referral for a speech therapist. It was a good visit but I was a

> > little dissappointed with how little the doctor understood about

> > speech disorders. At first I don't think that she really

believed

> me

> > even though she was more than willing to set up a referral. She

> just

> > said this isn't my specialty and I can't diagose it. I had to

> suggest

> > the hearing test. I wanted her to really hear his speech so I

> brought

> > some pictures and things for him to talk about with her. When he

> did

> > talk to her she asked me

> >

> > " Is this the best he can do or is he being shy? "

> >

> > I'm thinking, I told you had had speech issues, didn't you

believe

> me?

> > I just said, Yes this is it, the issue is not his effort, he is

> > having difficulty making sounds.

> >

> > Hopefully, I educated her a little and it will help other children

> > that see her.

> >

> > We talked briefly about Vitamin E, she said that that could be

> > dangerous and reccommended Udo's Oil. Has anyone heard of that?

If

> we

> > wanted to do vitiamin E do we need a doctors help or could a

speech

> > therapist help with it?

> >

> > We have the hearing test coming up with an Otolaryngologist (sp?)

> > They specialize in everything related to the head and neck. Does

> > anyone know if they deal with speech issues also?

> >

> > The referral we have for speech is with the school system. We

will

> > probably use this but I'm also looking at some other options.

> >

> > Ayana

> >

>

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Would a true E deficiency show up on a direct vitamin intake lab?

claudia.morris wrote:

>

>>

>>

>>>We just had our long awaited visit to the pediatrician to get a

>>>referral for a speech therapist. It was a good visit but I was a

>>>little dissappointed with how little the doctor understood about

>>>speech disorders. At first I don't think that she really

>>>

>>>

>believed

>

>

>>me

>>

>>

>>>even though she was more than willing to set up a referral. She

>>>

>>>

>>just

>>

>>

>>>said this isn't my specialty and I can't diagose it. I had to

>>>

>>>

>>suggest

>>

>>

>>>the hearing test. I wanted her to really hear his speech so I

>>>

>>>

>>brought

>>

>>

>>>some pictures and things for him to talk about with her. When he

>>>

>>>

>>did

>>

>>

>>>talk to her she asked me

>>>

>>> " Is this the best he can do or is he being shy? "

>>>

>>>I'm thinking, I told you had had speech issues, didn't you

>>>

>>>

>believe

>

>

>>me?

>>

>>

>>> I just said, Yes this is it, the issue is not his effort, he is

>>>having difficulty making sounds.

>>>

>>>Hopefully, I educated her a little and it will help other children

>>>that see her.

>>>

>>>We talked briefly about Vitamin E, she said that that could be

>>>dangerous and reccommended Udo's Oil. Has anyone heard of that?

>>>

>>>

>If

>

>

>>we

>>

>>

>>>wanted to do vitiamin E do we need a doctors help or could a

>>>

>>>

>speech

>

>

>>>therapist help with it?

>>>

>>>We have the hearing test coming up with an Otolaryngologist (sp?)

>>>They specialize in everything related to the head and neck. Does

>>>anyone know if they deal with speech issues also?

>>>

>>>The referral we have for speech is with the school system. We

>>>

>>>

>will

>

>

>>>probably use this but I'm also looking at some other options.

>>>

>>>Ayana

>>>

>>>

>>>

>

>

>

>

>

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Your pediatrician sounds alot like mine. A few months ago I was

trying to explain some things about my son's speech. I told the Dr

that often times when he tries to repeat he'll just make some random

sound. The Dr then tells me " well, alot of that could just be his

unwillingness to cooperate " . That just made me mad because it just

completely discounted how hard my son really works at learning to

talk. He tries his little heart out and works unbelievable hard at

therapy. Anyway, I'm learning very fast that I trust our pediatrician

for medical issues only. I just can't trust his opinion any longer on

development issues.

Another perfect example of why I'll no longer trust him with

development concerns. I was just recently thinking back about some

things. I remember at my son's 15 or 18 mo well child check he was

asked to point to some pictures as they were named. R couldn't do it

and I remember very well asking the pediatrician if he really expected

R to be able to do it. The Dr said most kids could point to at least

a couple. I was shocked that most kids could do it because R wasn't

even close to that point yet. But, I didn't think twice about it

because I assumed the Dr would have said something if it was truly a

concern. Here we are at almost 2.5 with more obvious delays and I'm

so mad that the Dr didn't alert me sooner. Even now the Dr doesn't

want to give a referral to a developmental pediatrician or neurologist

until my son is 3. R is in ST now and will be receiving OT soon all

through EI. But, I still think we are missing something more. I'm

thinking I might just have to go in and be adamant with the Dr about

my son needing further evaluations from a specialist.

I find it incredibly frustrating that pediatricians still seem so

uninformed and unconcerned about developmental issues. I don't even

know why they do the screenings at appointments if they are going to

just ignore the subtle delays at an early age. From my experience,

our pediatrician isn't going to act the least bit concerned until it's

a very obvious and very big delay. Doesn't that defeat the purpose of

early screenings?

Sorry, I got off on a tangent. I think I'm just getting really

frustrated with the medical community right now. I think they are

failing A LOT of parents and children when it comes to developmental

issues and it gets me really steamed up!!

Bridget

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My OT said it best. Say to the Dr. that you are not asking for that

referral you are demanding it. She encourages parents to say EI said we

have to get a...

bdkirk03 wrote:

>Your pediatrician sounds alot like mine. A few months ago I was

>trying to explain some things about my son's speech. I told the Dr

>that often times when he tries to repeat he'll just make some random

>sound. The Dr then tells me " well, alot of that could just be his

>unwillingness to cooperate " . That just made me mad because it just

>completely discounted how hard my son really works at learning to

>talk. He tries his little heart out and works unbelievable hard at

>therapy. Anyway, I'm learning very fast that I trust our pediatrician

>for medical issues only. I just can't trust his opinion any longer on

>development issues.

>

>Another perfect example of why I'll no longer trust him with

>development concerns. I was just recently thinking back about some

>things. I remember at my son's 15 or 18 mo well child check he was

>asked to point to some pictures as they were named. R couldn't do it

>and I remember very well asking the pediatrician if he really expected

>R to be able to do it. The Dr said most kids could point to at least

>a couple. I was shocked that most kids could do it because R wasn't

>even close to that point yet. But, I didn't think twice about it

>because I assumed the Dr would have said something if it was truly a

>concern. Here we are at almost 2.5 with more obvious delays and I'm

>so mad that the Dr didn't alert me sooner. Even now the Dr doesn't

>want to give a referral to a developmental pediatrician or neurologist

> until my son is 3. R is in ST now and will be receiving OT soon all

>through EI. But, I still think we are missing something more. I'm

>thinking I might just have to go in and be adamant with the Dr about

>my son needing further evaluations from a specialist.

>

>I find it incredibly frustrating that pediatricians still seem so

>uninformed and unconcerned about developmental issues. I don't even

>know why they do the screenings at appointments if they are going to

>just ignore the subtle delays at an early age. From my experience,

>our pediatrician isn't going to act the least bit concerned until it's

>a very obvious and very big delay. Doesn't that defeat the purpose of

>early screenings?

>

>Sorry, I got off on a tangent. I think I'm just getting really

>frustrated with the medical community right now. I think they are

>failing A LOT of parents and children when it comes to developmental

>issues and it gets me really steamed up!!

>

>Bridget

>

>

>

>

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Hi

Your pediatrician also sounds the first one we had. We ended up having

to get our dd evaluated privately after he'd messed us around for

almost a year, telling us " wait and see - I don't think there's

anything to be concerned about " .

Turns out she's severely autistic by the time we got her in to be

evaluated. Still doesn't speak. I have to wonder where she'd be now

if he'd taken our concerns seriously and referred us on when we first

brought her delays to his attention.

Maggie

San Ramon

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  • 9 months later...
Guest guest

Hello everyone. I had my doc visit yesterday. yeah negative on the

heart disease. She believes I am sero negative RA. She said she will

continue to test. She has now put me on Plaquenil/Librax for my

IBS/Darvecet for pain/upped my Neurotin and I am still taking Celebrex.

Wow what a mouthful. I will be having my knees and feet xrayed on

Thursday. I have 2 nodules now/one on my wrist and one on my foot. She

told me if I remain sero negative then I will progress slower that

someone with postive sero. She stated if my blood works started

elevating then we will get more aggressive and talk disability, but she

does not want me to stress on that now. She will also monitor for any

changes in bone structure. YEAH we are finally on the preventive track

and I am so relieved. Alittle dizzy over all the medication.lol but

mentally better. Thank you all very much for helping me out with the

ibs and difformity questions...I just wanted to give an update. I wish

all a pain free day !

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  • 3 years later...
Guest guest

AT nine weeks post op for my hip walking for twenty minutes would be a challenge

for me to. Be patient with that.

R

On Jun 3, 2011, at 9:04 PM, Lynn wrote:

> Saw the PA at my doc's office yesterday. She's concerned about the level of

pain I have, the swelling and poor flexion. So, more PT to include water

therapy, more Percoset, encouragement to work at the exercising but not to

overdo it (ok, that's great!!!) When I told her I walk for 20 minutes, the knee

starts to hurt and I break out in a massive sweat, she said if I had no

improvement or backslid, then I would have to have a manipulation in the

hospital! Oh boy...

>

> Lynn

> LTHR Oct 09

> RTKR Mar 11

>

> Life itself is the proper binge. - Child

>

> Visit my art blog: http://adreamseyeview.blogspot.com/

>

>

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Guest guest

Judith,

I can't compare to hips, but I do know my knees hurt much more prior to surgery

than after.

Donna R

Doctor Visit

Saw the PA at my doc's office yesterday. She's concerned about the level

of

pain I have, the swelling and poor flexion. So, more PT to include water

therapy, more Percoset, encouragement to work at the exercising but not to

overdo it (ok, that's great!!!) When I told her I walk for 20 minutes,

the knee

starts to hurt and I break out in a massive sweat, she said if I had no

improvement or backslid, then I would have to have a manipulation in the

hospital! Oh boy...

Lynn

LTHR Oct 09

RTKR Mar 11

Life itself is the proper binge. - Child

Visit my art blog: http://adreamseyeview.blogspot.com/

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

------------------------------------

Be your own advocate! The best patient is an informed patient!

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