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Michele,

First, what's this talk about being " on the computer too much " ? I must take

the position that there is no such thing! LOL!

I know that you are upset about how you are feeling, but try not to worry.

Just take one day at a time, keep reading, and make the most out of those

upcoming appointments with the rheumatologist and endocrinologist.

Try not to believe you may have scleroderma yet. First, you don't have any

skin changes and your other symptoms can be explained by other diseases or

syndromes. Scleroderma is quite rare. Its incidence is somewhere between 1

and 25 people per million, depending on which study you consult. A diagnosis

of scleroderma is not an automatic death sentence, as many people mistakenly

believe. Like SLE, scleroderma is a rheumatic disease that has several forms

and ranges from a very mild affliction to a serious and life-threatening

condition. I have read Dr. Maureen Mayes' " Scleroderma Book " (which is

excellent, by the way) in which she describes a patient of hers who is in

her 90s and doing well.

The sore throat you describe is not typically associated with scleroderma,

whereas heartburn and difficulty swallowing is.

In chronic fatigue syndrome (CFS), a persistent sore throat is a hallmark

sign. A CFS/fibromyalgia overlap syndrome can explain many of your symptoms,

even the Raynaud's. But are you very sure you have Raynaud's? Do you ever

have signs of what is happening to your feet in your hands? Have you ever

had any ulcers on your toes or fingers? You aren't a smoker, are you? Make

sure you discuss Raynaud's with your rheumatologist.

Your hypothyroidism may also be responsible for a quite a few of your

symptoms. It's best to discuss that aspect with your endocrinologist.

Medications can cause problems with your throat or other areas of your GI

tract, too.

Naproxen is an anti-inflammatory drug very similar to ibuprofen. I'm not

sure of its efficacy in the treatment of Raynaud's.

What treatment you receive from any of the physicians you consult depends

(or should) on what diagnosis they give you. If they can't give you a

diagnosis yet, then they will try to figure out a safe way of treating your

symptoms.

Hope this info helps you, Michele.

----- Original Message -----

From: <ggrimes911@...>

< >

Sent: Friday, March 16, 2001 7:10 AM

Subject: [ ] questions

> Hi. When I have been sick, I stay home and probably sit on the

> computer too much. I have yet to be diagnosed, but this pain in my

> throat is driving me crazy along with all the other symptoms,so I am

> frantically searching for more information. Well, the one disease

> which mirrors most of my symptoms is scleroderma. (which is so scary

> to me). I have Raynauds-which I take Naproxen to keep it under

> control. (If it responds to this medicine does it mean that it not a

> severe case? I don't have nodules, just redness on my toes, numbness

> in my feet and toes.) I can tell the raynauds has been progressing.

> My skin has not become shiny though. The other symtom I have is this

> chronic sore throat (unlike a sore throat from a cold). I've had

> this for about a year now. That semed to be how my breathing pain

> flare up started too. I have a constant tightness in my chest and an

> iil feeling all the time. I am positive what I have is systemic. I

> have little joint involvement. Is scleroderma one of the more

> progressive autoimmune diseases, compared to RA or SLE? How long can

> people live with this disease? I also have hypothyroidism. I think

> somewhere I read that hypothyroidism can be a imitator of other

> diseases. Does this make sense? I go to my first visit with a

> rhuemy next week. My results last Feb. were ANA 160, RA <10. If my

> test come back inconclusive, do they usually start you on meds. with

> these symptoms? Thanks for your help. Michele G

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Guest guest

,

Thank you for responding to my questions. You are a wealth of

information and calmed me down with these awful thoughts. What is

happpening to my body is happening so quickly and it is quite

shocking. Last night, I woke up in the middle of the night and my

legs were red and my knees felt like they were on fire. I slept on my

stomach. My knees have been achy all day. Does RA couse the back of

your knees to swell? Mine are a little swollen. I stopped taking

the Naproxen for 2 days so i could go to the Rhuemy tommorrow with my

symptoms unmasked. I don't have nodules, but my toes turn numb,

blue, purple, white, hurt and then swollen and red when they warm

up. My hands are staring to react also. No, I don't smoke. Thank

you so much for your help and support. You seem to be one of many

angels in this group. Michele G

> Michele,

>

> First, what's this talk about being " on the computer too much " ? I

must take

> the position that there is no such thing! LOL!

>

> I know that you are upset about how you are feeling, but try not to

worry.

> Just take one day at a time, keep reading, and make the most out of

those

> upcoming appointments with the rheumatologist and endocrinologist.

>

> Try not to believe you may have scleroderma yet. First, you don't

have any

> skin changes and your other symptoms can be explained by other

diseases or

> syndromes. Scleroderma is quite rare. Its incidence is somewhere

between 1

> and 25 people per million, depending on which study you consult. A

diagnosis

> of scleroderma is not an automatic death sentence, as many people

mistakenly

> believe. Like SLE, scleroderma is a rheumatic disease that has

several forms

> and ranges from a very mild affliction to a serious and life-

threatening

> condition. I have read Dr. Maureen Mayes' " Scleroderma Book " (which

is

> excellent, by the way) in which she describes a patient of hers who

is in

> her 90s and doing well.

>

> The sore throat you describe is not typically associated with

scleroderma,

> whereas heartburn and difficulty swallowing is.

>

> In chronic fatigue syndrome (CFS), a persistent sore throat is a

hallmark

> sign. A CFS/fibromyalgia overlap syndrome can explain many of your

symptoms,

> even the Raynaud's. But are you very sure you have Raynaud's? Do

you ever

> have signs of what is happening to your feet in your hands? Have

you ever

> had any ulcers on your toes or fingers? You aren't a smoker, are

you? Make

> sure you discuss Raynaud's with your rheumatologist.

>

> Your hypothyroidism may also be responsible for a quite a few of

your

> symptoms. It's best to discuss that aspect with your

endocrinologist.

>

> Medications can cause problems with your throat or other areas of

your GI

> tract, too.

>

> Naproxen is an anti-inflammatory drug very similar to ibuprofen.

I'm not

> sure of its efficacy in the treatment of Raynaud's.

>

> What treatment you receive from any of the physicians you consult

depends

> (or should) on what diagnosis they give you. If they can't give you

a

> diagnosis yet, then they will try to figure out a safe way of

treating your

> symptoms.

>

> Hope this info helps you, Michele.

>

>

>

>

>

>

>

>

> ----- Original Message -----

> From: <ggrimes911@y...>

> < @y...>

> Sent: Friday, March 16, 2001 7:10 AM

> Subject: [ ] questions

>

>

> > Hi. When I have been sick, I stay home and probably sit on the

> > computer too much. I have yet to be diagnosed, but this pain in

my

> > throat is driving me crazy along with all the other symptoms,so I

am

> > frantically searching for more information. Well, the one disease

> > which mirrors most of my symptoms is scleroderma. (which is so

scary

> > to me). I have Raynauds-which I take Naproxen to keep it under

> > control. (If it responds to this medicine does it mean that it

not a

> > severe case? I don't have nodules, just redness on my toes,

numbness

> > in my feet and toes.) I can tell the raynauds has been

progressing.

> > My skin has not become shiny though. The other symtom I have is

this

> > chronic sore throat (unlike a sore throat from a cold). I've had

> > this for about a year now. That semed to be how my breathing pain

> > flare up started too. I have a constant tightness in my chest and

an

> > iil feeling all the time. I am positive what I have is systemic. I

> > have little joint involvement. Is scleroderma one of the more

> > progressive autoimmune diseases, compared to RA or SLE? How long

can

> > people live with this disease? I also have hypothyroidism. I

think

> > somewhere I read that hypothyroidism can be a imitator of other

> > diseases. Does this make sense? I go to my first visit with a

> > rhuemy next week. My results last Feb. were ANA 160, RA <10. If

my

> > test come back inconclusive, do they usually start you on meds.

with

> > these symptoms? Thanks for your help. Michele G

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Guest guest

Michele,

did a great job of addressing your questions but I need to make a

couple of comments because your sore throat caught my attention. You have

my sympathy - I know what you feel like and I suspect that a constant sore

throat can drive you crazy. I had a sore throat for two years - lab tests

were ok, it was not red or swollen - there was no explanation and my

doctors could not figure out why. My Ra was getting worse and they started

me on gold injections. One of the first improvements was that my sore

throat went away. The sore throat was part of the RA flare. Since taking

the gold shots, I have not had the mysterious sore throat again. Maybe,

just maybe when they are successful in treating your disease, the sore

throat will go away.

A couple of months ago when I had my first round of pneumonia, my throat

was sore again but not red or swollen. My doctor suspected it was the RA

because I had been off Enbrel for awhile although I was still taking the

gold shots. Even going back on the Enbrel did not help. I really did think

I was going to go crazy with it - I could not stand the thought of years of

this again. When they did the blocks for my cervical spine problems, the

sore throat stopped. We figured that it was just from the muscles

tightening in my neck because of the neck pain. Unless you have cervical

spine problems, that is probably not the cause of the sore throat but don't

get discouraged - there is a reason for it and once they find out the

cause, they will fix it.

Scleroderma is scary but many people who have it live normal lives. Please,

don't worry about it at this point. If you do face it in the future, we

will be here to help you through it and encourage you along the way.

Another possibility from your symptoms is CREST syndrome. Patients with

CREST have symptoms of some or all of the following: Calcium deposits,

Raynaud's phenomenon, Esophageal swallowing problems, Scleroderma

involvement of the fingers and little red spots called Telangiectasia.

CREST does not ususally involve the internal organs and most people with it

do very well.

Good luck with your next doctor's appt. We will be anxious to hear what the

decisions are.

Pat

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Guest guest

Michele,

Any inflammatory arthritis in the knees can result in the swelling you describe.

My knees became grossly inflamed and had to be drained on many occasions to

relieve the pressure. Now that I am on meds that work, my inflammation is

controlled. I still have swelling, but not as bad as I used to.

Good luck at the doctors. I hope you get answers and relief.

I have to agree with you that is an angel!

a

----- Original Message -----

From: ggrimes911@...

Sent: Sunday, March 18, 2001 5:32 PM

Subject: [ ] Re: questions

,

Thank you for responding to my questions. You are a wealth of

information and calmed me down with these awful thoughts. What is

happpening to my body is happening so quickly and it is quite

shocking. Last night, I woke up in the middle of the night and my

legs were red and my knees felt like they were on fire. I slept on my

stomach. My knees have been achy all day. Does RA couse the back of

your knees to swell? Mine are a little swollen. I stopped taking

the Naproxen for 2 days so i could go to the Rhuemy tommorrow with my

symptoms unmasked. I don't have nodules, but my toes turn numb,

blue, purple, white, hurt and then swollen and red when they warm

up. My hands are staring to react also. No, I don't smoke. Thank

you so much for your help and support. You seem to be one of many

angels in this group. Michele G

> Michele,

>

> First, what's this talk about being " on the computer too much " ? I

must take

> the position that there is no such thing! LOL!

>

> I know that you are upset about how you are feeling, but try not to

worry.

> Just take one day at a time, keep reading, and make the most out of

those

> upcoming appointments with the rheumatologist and endocrinologist.

>

> Try not to believe you may have scleroderma yet. First, you don't

have any

> skin changes and your other symptoms can be explained by other

diseases or

> syndromes. Scleroderma is quite rare. Its incidence is somewhere

between 1

> and 25 people per million, depending on which study you consult. A

diagnosis

> of scleroderma is not an automatic death sentence, as many people

mistakenly

> believe. Like SLE, scleroderma is a rheumatic disease that has

several forms

> and ranges from a very mild affliction to a serious and life-

threatening

> condition. I have read Dr. Maureen Mayes' " Scleroderma Book " (which

is

> excellent, by the way) in which she describes a patient of hers who

is in

> her 90s and doing well.

>

> The sore throat you describe is not typically associated with

scleroderma,

> whereas heartburn and difficulty swallowing is.

>

> In chronic fatigue syndrome (CFS), a persistent sore throat is a

hallmark

> sign. A CFS/fibromyalgia overlap syndrome can explain many of your

symptoms,

> even the Raynaud's. But are you very sure you have Raynaud's? Do

you ever

> have signs of what is happening to your feet in your hands? Have

you ever

> had any ulcers on your toes or fingers? You aren't a smoker, are

you? Make

> sure you discuss Raynaud's with your rheumatologist.

>

> Your hypothyroidism may also be responsible for a quite a few of

your

> symptoms. It's best to discuss that aspect with your

endocrinologist.

>

> Medications can cause problems with your throat or other areas of

your GI

> tract, too.

>

> Naproxen is an anti-inflammatory drug very similar to ibuprofen.

I'm not

> sure of its efficacy in the treatment of Raynaud's.

>

> What treatment you receive from any of the physicians you consult

depends

> (or should) on what diagnosis they give you. If they can't give you

a

> diagnosis yet, then they will try to figure out a safe way of

treating your

> symptoms.

>

> Hope this info helps you, Michele.

>

>

>

>

>

>

>

>

> ----- Original Message -----

> From: <ggrimes911@y...>

> < @y...>

> Sent: Friday, March 16, 2001 7:10 AM

> Subject: [ ] questions

>

>

> > Hi. When I have been sick, I stay home and probably sit on the

> > computer too much. I have yet to be diagnosed, but this pain in

my

> > throat is driving me crazy along with all the other symptoms,so I

am

> > frantically searching for more information. Well, the one disease

> > which mirrors most of my symptoms is scleroderma. (which is so

scary

> > to me). I have Raynauds-which I take Naproxen to keep it under

> > control. (If it responds to this medicine does it mean that it

not a

> > severe case? I don't have nodules, just redness on my toes,

numbness

> > in my feet and toes.) I can tell the raynauds has been

progressing.

> > My skin has not become shiny though. The other symtom I have is

this

> > chronic sore throat (unlike a sore throat from a cold). I've had

> > this for about a year now. That semed to be how my breathing pain

> > flare up started too. I have a constant tightness in my chest and

an

> > iil feeling all the time. I am positive what I have is systemic. I

> > have little joint involvement. Is scleroderma one of the more

> > progressive autoimmune diseases, compared to RA or SLE? How long

can

> > people live with this disease? I also have hypothyroidism. I

think

> > somewhere I read that hypothyroidism can be a imitator of other

> > diseases. Does this make sense? I go to my first visit with a

> > rhuemy next week. My results last Feb. were ANA 160, RA <10. If

my

> > test come back inconclusive, do they usually start you on meds.

with

> > these symptoms? Thanks for your help. Michele G

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  • 2 months later...
Guest guest

>I strongly believe that has verbal and possibly oral apraxia

>but have no definite diagnosis. Who is best to diagnose?

>Developmental peditrician?

Dear ,

I would definitely take my child to a developmental pediatrician/ or

pediatric neurologist for an evaluation and a medical diagnosis. This

will assist you in many ways. Firstly, Verbal Apraxia/Dyspraxia is a

neurological disorder, and therefore should be identified by a medical

doctor as well as a speech pathologist. The key is to find a Ped.

Neurologist who really knows verbal apraxia in children. Secondly,

this diagnosis will act as ammunition for getting more services for

your child if needed. With the medical diagnosis you will be in a position

with both EI (Early Intervention )and later your local school system to

get speech intervention 5 times a week if needs it.

If you have any further questions please feel free to contact me.

Lori Roth, MA, CCC-SLP

Oral Motor/Verbal Apraxia Specialist

lorislp@...

CHERAB Foundation Research Coordinator

www.apraxia.cc

Northern NJ 973-540-8884

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  • 2 weeks later...
Guest guest

Yes both my boys cried at certain songs (children's songs) and parts in

videos to the stage where I just couldn't even hum the tune - what does that

say! perhaps I put them off... I figured it must just be the hearing

frequency thingy my older one grew out of this but my 4yr is still there and

I know what to avoid for now. - very strange.

Terri

[ ] Questions

>Andy and others.

>Has anyone experience their child just crying for no apparent reason? I

believe I read where some children /adults have trouble with eczema and

rashes. What has everyone done for this? diane

>

>

>

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Guest guest

I also know adults who do this at specific points in each chelating

cycle.

Andy

--- In @y..., " s " <rat.richards@x>

wrote:

> Yes both my boys cried at certain songs (children's songs) and parts

in

> videos to the stage where I just couldn't even hum the tune - what

does that

> say! perhaps I put them off... I figured it must just be the

hearing

> frequency thingy my older one grew out of this but my 4yr is still

there and

> I know what to avoid for now. - very strange.

>

> Terri

> [ ] Questions

>

>

> >Andy and others.

> >Has anyone experience their child just crying for no apparent

reason? I

> believe I read where some children /adults have trouble with eczema

and

> rashes. What has everyone done for this? diane

> >

> >

> >

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Guest guest

Hi Diane,

My son (he is nine) is going through this now :( I am not sure why?

Last week he was VERY gassy. I thought it was that. Today I am

wondering if this is how depression starts :( It is tough with a

nonverbal child. He just cries his heart out for no apparent reason :(

Love,

Sheela.

> Andy and others.

> Has anyone experience their child just crying for no apparent

reason? I believe I read where some children /adults have trouble

with eczema and rashes. What has everyone done for this? diane

>

>

>

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Guest guest

,

For splitting doses you can get empty capsules at the health food store and open

yours and dump whatever portion of the contects into the other cap. You may

what to get a smaller size empty ones, for ease of swallowing and to reduce air

intake. Perhaps others could share whether they have split capsule contents and

then put the ALA and DMSA together in the same capsule. I don't know of a

reason why not, but perhaps others do.

I would certainly try switching to the every 3 hour (day) and 4 hour (night)

protocol, to see if that works better for you child. Some on the list have

chosen to switch without notifying or seeking approval from the doc. Read up on

the reasons for the protocol and make your own judgment. If you had a hair

analysis done and applied the counting rules and it indicated mercury toxicity,

I would certainly continue.

S

On Mon, 18 June 2001, " lj smith " wrote:

>

> <html><body>

> <tt>

> Hello all,<BR>

> As from what I have read....DMSA should be used every 3 hours and ala <BR>

> used every 4 but if used together it should be every 3 hours....and <BR>

> it should be used on a 3on/4 off schedule...<BR>

> Here is what we are doing for my 5 year old 46lbs. 3days on/11 off <BR>

> DSMA is at 100mg 3 times a day and ala is a 50 mg 2 times a <BR>

> day....Per Our DAN Doctor. We have already done 2 rounds.... During <BR>

> the 1st round we saw great improvment with social behaviors but on <BR>

> the 1st day off my son kinda regressed...lots of cring and behavior <BR>

> problem....last 4 days or so. <BR>

> When we got the test results back all it showed was that he had <BR>

> arsinic and alittle aluminum. Our Dan doctor only wants us to do 3 <BR>

> rounds...He says that if there is not any mercury in the first test <BR>

> then most likly there isn't any...<BR>

> The 2nd round we still followed our DAN doctors orders. We did n't <BR>

> observe any changes. & nbsp; Is this normal? <BR>

> I am really concerned about the dosage.... Yes, like others on this <BR>

> list his urine is bright yellow and stinky. I do believe he has some <BR>

> murcury in his little body. While I was pregnant with him I had tuna <BR>

> every day.I couldn't get enough of it.. and Also during his <BR>

> immunizations he would get a fever of over 104 degrees every time.<BR>

> I am turning toward the group for help since our next appointment <BR>

> with the DAN doctor is in July....<BR>

> Both DSMA 50mg and ALA 50mg is in capsules so how would I be able to <BR>

> split to decrease the dosage? How do you know when you are at the end <BR>

> of chelating...(no more changes?) <BR>

> This is all new to me<BR>

> Thanks, <BR>

> <BR>

> </tt>

>

> <br>

>

> <!-- |**|begin egp html banner|**| -->

>

> <table border=0 cellspacing=0 cellpadding=2>

> <tr bgcolor=#FFFFCC>

> <td align=center><font size= " -1 " color=#003399><b>

Sponsor</b></font></td>

> </tr>

> <tr bgcolor=#FFFFFF>

> <td width=470><a

href= " http://rd./M=168002.1477935.3051340.2/D=egroupmail/S=1700061616:N\

/A=624151/*http://mojofarm.mediaplex.com/ad/ck/990-1736-1039-2?bn=Take4DVD468 "

target= " _top " ><img width=468 height=60

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alt= " Click for Details " border=0><br>Click for Details</a></td>

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> </table>

>

> <!-- |**|end egp html banner|**| -->

>

>

> <br>

> <tt>

> =======================================================<BR>

>

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Guest guest

> Hello all,

> As from what I have read....DMSA should be used every 3 hours and

ala

> used every 4 but if used together it should be every 3 hours....and

> it should be used on a 3on/4 off schedule...

ALA every 3. DMSA every 4.

Andy

> Here is what we are doing for my 5 year old 46lbs. 3days on/11 off

> DSMA is at 100mg 3 times a day and ala is a 50 mg 2 times a

> day....Per Our DAN Doctor. We have already done 2 rounds.... During

> the 1st round we saw great improvment with social behaviors but on

> the 1st day off my son kinda regressed...lots of cring and behavior

> problem....last 4 days or so.

> When we got the test results back all it showed was that he had

> arsinic and alittle aluminum. Our Dan doctor only wants us to do 3

> rounds...He says that if there is not any mercury in the first test

> then most likly there isn't any...

> The 2nd round we still followed our DAN doctors orders. We did n't

> observe any changes. Is this normal?

You're doing better than normal. Under that protocol most people

would be getting worse by the second round.

You might try doing it the way you said in the first paragraph. Check

the polls section of this listserver's website for how other people

who tried it both ways found it worked.

> I am really concerned about the dosage.... Yes, like others on this

> list his urine is bright yellow and stinky. I do believe he has some

> murcury in his little body. While I was pregnant with him I had tuna

> every day.I couldn't get enough of it.. and Also during his

> immunizations he would get a fever of over 104 degrees every time.

> I am turning toward the group for help since our next appointment

> with the DAN doctor is in July....

Why not shop for any other doctor who will Rx and order tests?

> Both DSMA 50mg and ALA 50mg is in capsules so how would I be able to

> split to decrease the dosage?

Most capsules are not that hard to tease apart. They are made by

sticking together the 2 ends. Most can be pulled apart that way.

> How do you know when you are at the end

> of chelating...(no more changes?)

> This is all new to me

> Thanks, Jen

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Guest guest

Dear ,

Well, I don't think I can address all you have said, but I will

pick a couple of things to respond to.

First, you say that the test results only showed aresenic and

aluminum. A bunch of parents have talked on the list about seeing

mercury in urine only AFTER other metals come out. I don't know

how this works, but it is what people have seen happen. I think

it would be a good idea to change to taking the DMSA and ALA

every 3 hours (4 at night) and do a couple of rounds that way.

Then see what you think. Other than the inconvenience, there

is nothing to lose here. You are already using DMSA and ALA,

this is just a change to frequency and dose each time.

Also, getting arsenic out is definately a very good thing, and

even if ALL you ever get out is arsenic, that is a good reason

to continue, not stop. Just my thoughts about it.

Regarding when to stop, I'm not there yet. The general timeframe

I've heard is 6 months to 2 years, so I figure I'll spend all of

2001 on this project, at least. I guess the choices include:

a. when reactions to chelation stop

b. when improvements from chelation stop

c. when urine/fecal testing shows no metals during chelation

Andy has said something about continuing a bit longer after

you think you are done, which does make some sense to me. Anyway,

I haven't thought much about it since I'm not there yet.

best,

Moria

[i'm chelating mySELF: I have no kids. 100mg ALA every 3 hours;

3 on / 4 to 11 off, with some variations. Have done 8 rounds]

At 03:15 AM 6/19/2001 -0000, you wrote:

>Hello all,

>As from what I have read....DMSA should be used every 3 hours and ala

>used every 4 but if used together it should be every 3 hours....and

>it should be used on a 3on/4 off schedule...

>Here is what we are doing for my 5 year old 46lbs. 3days on/11 off

>DSMA is at 100mg 3 times a day and ala is a 50 mg 2 times a

>day....Per Our DAN Doctor. We have already done 2 rounds.... During

>the 1st round we saw great improvment with social behaviors but on

>the 1st day off my son kinda regressed...lots of cring and behavior

>problem....last 4 days or so.

>When we got the test results back all it showed was that he had

>arsinic and alittle aluminum. Our Dan doctor only wants us to do 3

>rounds...He says that if there is not any mercury in the first test

>then most likly there isn't any...

>The 2nd round we still followed our DAN doctors orders. We did n't

>observe any changes. Is this normal?

>I am really concerned about the dosage.... Yes, like others on this

>list his urine is bright yellow and stinky. I do believe he has some

>murcury in his little body. While I was pregnant with him I had tuna

>every day.I couldn't get enough of it.. and Also during his

>immunizations he would get a fever of over 104 degrees every time.

>I am turning toward the group for help since our next appointment

>with the DAN doctor is in July....

>Both DSMA 50mg and ALA 50mg is in capsules so how would I be able to

>split to decrease the dosage? How do you know when you are at the end

>of chelating...(no more changes?)

>This is all new to me

>Thanks,

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  • 4 months later...

Welcome to the group. It sounds like your son does have signs of

apraxia. The good news that if he does, you have identified it at a

very young age. I believe that oral apraxia can be determined at as

young as 18 months. Verbal apraxia is more difficult. However that

doesn't prevent him from getting help now.

Make an appointment with a neurodevelopmental pediatrician.

Preferably one that is familiar with apraxia. Call Early

Intervention Services. This is a federal program in each state which

provides free services from bith to 3. It is free and they will come

out and do an evaluation in all areas including, speech and language,

fine motor, gross motor, social, just to name a few.

Good luck and if you are interested in a local support group, post

where you are located and I just know , the outreach

coordinator will get back to you.

Mom to 3.4 with oral and verbal apraxia, low tone and mild

global dyspraxia

> Hello! I am new to the group and not sure whether my child has an

expressive

> speech delay, oral or verbal apraxia, or hypotonia. I will try to

describe

> everything about him the best that I can and if you have any input

for me I

> would greatly appreciate it. My son is 19 months old and is saying

very

> little that is understandable. I started talking wihen I was 16

months old

> so I did not become terribly concerned until then. At that time, I

had a

> speech evaluation done and his diagnosis was a mild expressive

delay and

> above average receptive language. However, he has some of the

symptoms that

> I have heard described by you so I want to make sure I have the

correct

> diagnosis and as early as possible. He drools excessively to the

point that

> his shirt is usually wet within 10 minutes of changing. He also

has

> difficulty blowing bubbles or candles. He has had normal eating

habits

> though.except for over stuffing his mouth. My hunch is that he has

low

> muscle tone in his mouth which makes it difficult for him to form

even the

> easiest of sounds like moo and ma. He is not doing any m or b

sounds on a

> regular basis but lots of d's. If you can help, I'd gladly listen

and do

> whatever I can to help my little boy.

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Have you considered augmenting with your district's pre-school

program? Depending on the district they often have speech and

language pre-school programs which may be appropriate for his needs.

I have to admit prior to my son qualifying for the distric program I

was adamant that he would be in a regular pre-school in the LRE. I

spoke with other Moms whose kids were in the local program and every

one of them was thrilled with it. I agreed to the program and was

hoping to supplement with a " typical " preschool 2X a week. That

didn't work out for us this year because of timing, but it is our

goal for next year.

I have found that because it is such a structured program and the

ratios of teacher to child are smaller, each child gets more

attention. They are also able to redirect anyone who gets distracted

back to the activity.

For example when doing a scissor activity someone can help my son

with hand over hand assistance. They also use glue on a wooden stick

for spreading. An Ot comes in 1X a week to do a classroom activity.

It may be a scooter race or a trampoline activity. They may do an

activity with shaving cream for tactile issues or play with a rice

table. They also have 1:1 or group OT sessions. The classroom teacher

also tries to incorporate speech and OT activities into her classroom

activities. They also give speech therapy to the kids. Of course with

apraxic kids 1:1 is extremely important with an experienced

therapist. SO if you decide to go that route, push for this in his

IEP. (that's another e-mail!)I also have private speech outside of

school. With this he gets therapy 5X a week and whatever we do at

home.

I cannot even express how happy I am that he is in this environment.

He is thriving and all the kids are like him. Speech issues, maybe

some sensory. With the exception of how less noisy the classroom is,

it looks like a regular pre-school. He is learning so much and is so

happy.

Of course every district is different, as we have heard the horror

stories on this list but check yours out to see if the program works

for him. There are many Moms on this list from North Jersey and may

be able to point you in the right direction in your area.

My last thought (sorry to be so long) is have you tried the EFA

supplementation? I started my son about 3 weeks ago and am amazed at

his progress. His SLP has also commented that he doesn't need as much

direction. This is not medication but an over-the counter fish oil

which comes in a capsule. You can read more about it on the

apraxia.cc WEB page.

Good luck!

(Mom to 3.4 (apraxic) and 20 months)

> Hi Everybody! I was hoping someone could help me with something.

My 3 1/2

> year old son was diagnosed last year with Dyspraxia of Speech and

has been

> receiving speech therapy for over a year. He has made unbelievable

gains and

> we are thrilled! He just started OT because he has sensory

intergration

> issues. The problem is that he has been in a regular preschool

since

> September that meets 2 times a week for 2 and 1'/2 hours each day.

He loves

> going but the teachers told me on Thursday that he is having

trouble

> focusing. He goes from one station to another during free time and

b-lines

> for something across the room and doesn't seem to mind whats in his

way to

> get there. They say he is not malicious at all and they feel very

bad

> because they know he can't help himself. Almost like his mind is

telling him

> something and his body is doing something else. He is by no means a

behavior

> problem but they can't get anything done because they are

constantly

> redirecting him back to a free time activity. They say is much

better when

> they are doing a craft at the table as a group.

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Hi le -

My son's neurologist and his SLP suggested putting my 3 1/2 year old son (he is

now 4) on prozac or zoloft for his anxiety, failure to pay attention, etc. I

also knew in my heart that medication was not the answer. I started him on

EFA's (first Efalex, then Coromega, then Pro EFA) and once we got him on the Pro

EFA saw an incredible transformation. His anxiety level went way down, his

sensory integration issues seemed to calm down (they are still there, but he is

able to handle them now) and his speech increased and increased. His Doctors

did not believe the EFA's would work, but both said they couldn't hurt him, I

was just waisting time. Now they are both believers and amazed at what a

difference it makes in . It seems to help him stay focused. I tried it

for a month before I put on them and it also helped with my anxiety -

especially during PMS time!! So I know first hand that it does help.

I tried putting into preschool last year (when he was 3) and it was a

disaster. The preschool was not structured and they also did not know what to

do with him. I ended up having to take him out after 4 weeks. This year I

found a small preschool which is EXTREMELY structured. They have the same

schedule every day - he know what to expect. He is THRIVING and learning so

much, especially how to socialize. My son has severe verbal apraxia, sensory

integration issues, high anxiety, oral hypersensitivity, oral apraxia, oral

hypotonia, reflux.....and he is in a regular preschool - he can sing the

alphabet, he can count to 10 in spanish and say his colors in spanish, he can

write his letters up to " G " , he has learned how to say " yes, ma'am and no,

ma'am " always, and most importantly he has learned that he is just like the

other children and he now has self confidence and self esteem.

The best advice is to listen to your instincts - if you do not think you son

needs to be medicated - especially at such a young age - then don't. You know

him better than ANYONE. Try alternatives if you feel you want to, or try other

modifications. YOU are your son's best advocate and you know what he needs.

Medication is not for everyone - and it is not always the answer.

Just my 2 cents!!

Carnell

North Carolina

[ ] Questions

Hi Everybody! I was hoping someone could help me with something. My 3 1/2

year old son was diagnosed last year with Dyspraxia of Speech and has been

receiving speech therapy for over a year. He has made unbelievable gains and

we are thrilled! He just started OT because he has sensory intergration

issues. The problem is that he has been in a regular preschool since

September that meets 2 times a week for 2 and 1'/2 hours each day. He loves

going but the teachers told me on Thursday that he is having trouble

focusing. He goes from one station to another during free time and b-lines

for something across the room and doesn't seem to mind whats in his way to

get there. They say he is not malicious at all and they feel very bad

because they know he can't help himself. Almost like his mind is telling him

something and his body is doing something else. He is by no means a behavior

problem but they can't get anything done because they are constantly

redirecting him back to a free time activity. They say is much better when

they are doing a craft at the table as a group. I think he likes the

structure of craft time. They are also confused because he can read and write

already so his pretty bright for his age. Basically, they told me they don't

know what to do and asked if he is medicated? I am not ready for medication

right now. I thought maybe get a shadow for the classroom to follow him. I

also heard that there are schools that incorporate SI methods. Has anyone

heard of these schools in the North Jersy area? I also need a name of a

nutritionalist in North Jersey to give me suggestions for his diet.

Thanks!

le

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  • 3 months later...

Carolyn-is it the pediatrician that is telling you there is nothing to be

concerned about? If so I would rec. going to see a pediatric neurosurgeon

just to ease your mind. I am sorry I have no experience with the vein-but if

your mommy instinct tells you it is not right then follow that and get a

second opinion!

Welcome to the board and please keep us updated!

beck Mom to

Memphis

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Hi Carolyn and welcome to the group! My second son, Patch, had a

relatively large head too. When we would go for check-ups, his head

was always above the 75%, while his height and weight were in the 25%

range. He is now 3 and a half, and I would say that his body is

finally catching up to his head. He was a little delayed with

talking, but boy is he ever making up for lost time! I was concerned

too about how large his head was in ratio to the rest of him, so I

kept telling myself its because he's going to be so smart his head

needs room for that brain of his! ;o)

My other son, Danny (one of my plagio babies) also had a very

predominant vein running along a suture line. Are you afraid that

when the suture closes, it will close on the vein? That's exactly

what I thought. My neuro told us that the vein wasn't actually right

on the suture even though it looked to be that way. He said that

the vein was running along a groove in Danny's skull that was right

next to one of the sutures on the right side of his head. He told us

that there wasn't anything to worry about, and it honestly hasn't

been a concern to us at all.

Hope this has helped you some. And again, welcome to the group!

Niki

Kaylie & Danny (STAR grads)

Phila., PA

> My 7 month old son has some mild flattening in the back of his head

> and his ears are somewhat asymetrical. But my real concern is that

> he has a prominent vein running across the suture line on the left

> side of his scalp. Also, the doctor told me that his head is

> oversized relative to his body. The doctor assures me that there

is

> nothing to be concerned about. HIs development appears to be

normal.

>

> Anyone else with this experience or suggestions? Am I concerned

> about nothing? Thanks for the input! Carolyn

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Carolyn:

I have never heard of anyone being concerned about a prominent vein over a suture, but I sure would be curious about what a specialist would have to say about it. If it's a genuine concern for you, then perhaps you should push for a referral?? Does this vein seem to be oversized or abnormal in any way?

Please keep us updated if you should find anything out about it.

Kendra

Questions

My 7 month old son has some mild flattening in the back of his head and his ears are somewhat asymetrical. But my real concern is that he has a prominent vein running across the suture line on the left side of his scalp. Also, the doctor told me that his head is oversized relative to his body. The doctor assures me that there is nothing to be concerned about. HIs development appears to be normal.Anyone else with this experience or suggestions? Am I concerned about nothing? Thanks for the input! CarolynFor more plagio info

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  • 1 month later...
Guest guest

yes it is a big decision to make. but it is your body and do what you think

is best for you. i have many questions to ask different people too. kathy in

il

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  • 11 months later...
Guest guest

Hi Tess,

Regarding the chills, I can't say. I know when I would have my

Still's flares I would have violent shakes that would make my teeth

chatter. I always assumed it was the body fighting the spike in body

temperature.

When I had my CT scans they gace me a contrast dye which, if memory

serves, produces a better overall image of the area being scanned.

In regard to a med for your flare maybe a prednisone dose pack? I

know, and I shudder to even suggest it, but if it's to get you over

the hump it may not be a bad thing.

Take care and know I am thinking of you.

Love and hugs,

Alan

> Hi...can anyone answer these questions:

>

> I often run a low-grade fever with an RA flare, but never get the

> chills. During this illness the past 6 weeks or so I have the

chills

> often, whether my temp is only 100 or if it's near 102. What makes

the

> difference for when you have the chills and when you don't?

>

> Also, you all gave me good info on the spiral CT, but what does the

dye

> or contrasting agent do to improve the CT? What does it show in the

> lungs?

>

> I haven't had Remicade since Feb. 5. My hands and wrists are

flaring,

> and I have pain in my foot. I am also having many 'charlie horse'

type

> cramps. Is there anything you all think I should consider rather

than

> Remicade or other meds that mess up my immune system?

>

> Any & all thoughts appreciated. I love you all.

>

> Tess

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Guest guest

on 3/21/03 1:13 AM, tess_northwest@... at tess_northwest@...

wrote:

> Also, you all gave me good info on the spiral CT, but what does the dye

> or contrasting agent do to improve the CT? What does it show in the

> lungs?

Tess, I can't answer your question, but I was just wondering if you take

Glucophage (metformin) as one of your diabetes medications. I've read

somewhere that it should be stopped a while before having dye procedures.

I'm sorry I can't be more specific, but just thought I'd mention it.

Sue

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Guest guest

Hi Sue...the CT office told me no glucophage 24 hours before nor for 48

hours after the CT, and then to check with my Dr. before starting the

glucophage again. Thanks, dear Sue.

Love...

Tess

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  • 1 month later...
Guest guest

Good points, .

A couple of things to consider.

First, in working with Doctor Goldberg, he mentions safety about 100

times during every consult we have with him. So it seems that is

foremost on his mind.

Second, thinking of this as an illness, there is also the issue to

consider of what further deterioration could be happening to these

children without medical intervention.

Keep asking questions of your doctor, though, until you get the

answers that comfort you.

Dave

> Does anyone have any concerns about having their children on meds,

> like an ssri or anti-viral, for such an extended period of time? I

> am new to this and my son has been prescribed some meds that I do

not

> totally understand and have some worries about the potential long-

> term impact. I know that, while my son has seen some progress

> working with therapists, they are treating symptoms and not the

root

> cause of his delays.

>

> Most of you have much more knowledge and experience with this than

I

> do. Often I do not completely comprehend what my son's Dr. is

> telling me, even though I ask many questions.

>

> Thanks in advance.

> -

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Guest guest

Hi,

In my sons case, the cause is a dysfunctional immune system. Although we

are doing it somewhat indirectly (since we have no direct treatments

available for neuroimmune problems), we are addressing whatever has taken

advantage of that dysfunction, or was helping to keep his immune system

chronically activated. His chronic ASD symptoms involved viral, fungal,

and dietary issues. His OCD flairs are triggered by bacterial infections.

As long as my sons bloodwork shows that his body is becoming healthy and his

brain function is improving, the medications don't concern me. I feel this

is the safest option available to help my son. He'll probably need to stay

on maintenance therapy until we have better options.

If we stopped the suppressive therapy without normal immune function,

everything would eventually reactivate and he'd slip back into a place he

never wants to be again.

Cheryl

----Original Message Follows----

From: " george_o_jones " <gjones@...>

Reply-

Subject: Questions

Date: Fri, 09 May 2003 14:49:04 -0000

Does anyone have any concerns about having their children on meds,

like an ssri or anti-viral, for such an extended period of time? I

am new to this and my son has been prescribed some meds that I do not

totally understand and have some worries about the potential long-

term impact. I know that, while my son has seen some progress

working with therapists, they are treating symptoms and not the root

cause of his delays.

Most of you have much more knowledge and experience with this than I

do. Often I do not completely comprehend what my son's Dr. is

telling me, even though I ask many questions.

Thanks in advance.

-

_________________________________________________________________

Help STOP SPAM with the new MSN 8 and get 2 months FREE*

http://join.msn.com/?page=features/junkmail

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  • 2 weeks later...
Guest guest

Hi ,

My baby was in a DOCband and it wasn't allowed to get wet. And no,

her hair didn't fall out from her band.

:-)

> Is it okay to bring them in the pool w/ the helmet & does their

hair fall out

> from it?

>

> Thanks!

>

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Guest guest

,

The helmet needs to be taken off before swimming. You don't want to

immerse it in water. As for the hair, we have not noticed any hair

falling out..I did see a spot, but my PT said it is matted down...

Have a great evening!

Randi

mom to Drew (almost 6 months) DOC band 3 weeks

> Is it okay to bring them in the pool w/ the helmet & does their

hair fall out

> from it?

>

> Thanks!

>

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