RE: Re: Hi! I am new here! Kathy

[Guest guest]

Did you notice him growing again once you got the

thyroid under control? My son, after a good solid

measurable growth has hit a wall for the last year.

His dietitian wondered but after testing through his

peds, it came back within " normal " .

B

--- Kathy Ratkiewicz <Kathy_R@...> wrote:

> One suggestion that I would have is to make sure

> that his thyroid status is

> normal. When my son Danny was a baby, we had a

> horrible time getting him to

> take table foods, for several months, all he would

> eat was Allsoy formula

> and strained sweet potatoes. Period. He would gag on

> anything else. We tried

> everything..oral motor therapy, pureed

> everything..nothing worked for him.

> He was past due for his thyroid labs, and when we

> got the results, I was

> stunned to see that his TSH was over 23 (normal

> range at that time was up to

> 10, now the upper limit of normal has been revised

> to a much lower level)

> the only signs that he had of

> hypothyroidism(underactive thyroid) was a

> slowdown in his height..he hadn't grown for several

> months. Once we started

> him on thyroid replacement meds, he stopped with the

> gagging...I remember

> being amazed, when 2 weeks after we started the

> meds, he was able to eat

> chili w/meat.table style.I hadn't ground it up for

> him, PLUS it was a food

> that he would never try before. We talked it over

> with his doc, and in

> retrospect ! figured out that his thyroid must have

> been enlarged, making

> him gag whenever he tried to swallow anything lumpy.

> I am hyrothyroid, too,

> and when my TSH levels get whacky, I can feel

> pressure in my throat.

>

> SO.not saying that this IS what is going on

> w/Collin..there are many other

> things that could be causing his problem.BUT

> thyroid issues(especially

> hypothyroidism) are very common in people w/Ds, so

> it wouldn't hurt to rule

> that out if he hasn't had his levels checked

> lately.

>

> KathyR

>

>

>

> _____

>

> From: Down Syndrome Treatment

> [mailto:Down Syndrome Treatment ] On

> Behalf Of Tami

> Sent: Tuesday, June 13, 2006 7:59 AM

> Down Syndrome Treatment

> Subject: RE: Re: Hi! I am

> new here!

>

>

>

> Hi Kathy R

>

>

>

> Collin either gags or he pushes it out with his

> tongue. The OT wants me to

> grind up pears and slowly add it to his food. So

> that is what I am going to

> do when I get the grinder. Any other suggestions

> would be great

>

>

>

> Tami

>

>

__________________________________________________

[Guest guest]

Did you get the lab work and see the results for yourself?

Qadoshyah

*Got Down Syndrome?

www.gotdownsyndrome.net

From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of and BehnkeSent: Tuesday, June 13, 2006 11:08 AMDown Syndrome Treatment Subject: RE: Re: Hi! I am new here! Kathy

Did you notice him growing again once you got thethyroid under control? My son, after a good solidmeasurable growth has hit a wall for the last year. His dietitian wondered but after testing through hispeds, it came back within "normal". B--- Kathy Ratkiewicz <Kathy_Rcomcast (DOT) net> wrote:> One suggestion that I would have is to make sure> that his thyroid status is> normal. When my son Danny was a baby, we had a> horrible time getting him to> take table foods, for several months, all he would> eat was Allsoy formula> and strained sweet potatoes. Period. He would gag on> anything else. We tried> everything..oral motor therapy, pureed> everything..nothing worked for him.> He was past due for his thyroid labs, and when we> got the results, I was> stunned to see that his TSH was over 23 (normal> range at that time was up to> 10, now the upper limit of normal has been revised> to a much lower level)> the only signs that he had of> hypothyroidism(underactive thyroid) was a> slowdown in his height..he hadn't grown for several> months. Once we started> him on thyroid replacement meds, he stopped with the> gagging...I remember> being amazed, when 2 weeks after we started the> meds, he was able to eat> chili w/meat.table style.I hadn't ground it up for> him, PLUS it was a food> that he would never try before. We talked it over> with his doc, and in> retrospect ! figured out that his thyroid must have> been enlarged, making> him gag whenever he tried to swallow anything lumpy.> I am hyrothyroid, too,> and when my TSH levels get whacky, I can feel> pressure in my throat.> > SO.not saying that this IS what is going on> w/Collin..there are many other> things that could be causing his problem.BUT> thyroid issues(especially> hypothyroidism) are very common in people w/Ds, so> it wouldn't hurt to rule> that out if he hasn't had his levels checked> lately.> > KathyR> > > > _____ > > From: Down Syndrome Treatment > [mailto:Down Syndrome Treatment ] On> Behalf Of Tami> Sent: Tuesday, June 13, 2006 7:59 AM> Down Syndrome Treatment > Subject: RE: Re: Hi! I am> new here!> > > > Hi Kathy R> > > > Collin either gags or he pushes it out with his> tongue. The OT wants me to> grind up pears and slowly add it to his food. So> that is what I am going to> do when I get the grinder. Any other suggestions> would be great> > > > Tami> > __________________________________________________

[Guest guest]

Yes, he grew about 4 inches in 4 months.

What were the actual numbers for the

thyroid results? I didn’t use to ask for the actual numbers, but I learned

that it is best to do so;-)

Here is something that I wrote when Danny

was younger:

He had the elevated TSH/normal T4 when he

was about 7 months old. The TSH of 23 and abnormal free T4 was when he was 15

months old. I didn’t know the actual numbers of the tests done at 7

months until I asked for them when he was 15 months old.

Danny

by Kathy Ratkiewicz:

Danny had an elevated TSH (10.3, normal range = 0.4-5.5) but since his T4 was

in the normal range, his doc told us that the results were " OK " (at

the time, I didn't know enough to ask for the numbers, just took his word for

it). Eight months later, when I started looking into thyroid issues, I asked

for the numbers (and almost stroked out when I got them). By that time, Danny

had had a slowdown in growth; he didn't grow at all for four months. We asked

for another thyroid test, and by then, his TSH was 23.11 (normal range

=0.40-5.0), and free T4 was abnormal, too. He was active, alert, hair was

shiny, etc, so we had not suspected hypothyroidism before his growth slowed.

Well, he was constipated of course, but all

" Down Syndrome kids " are

constipated...and he had big time feeding problems, but that " goes with

the territory. "

After he was put on thyroid replacement, his growth picked up

for a few months and he grew more than four inches in about four months. He

went from being merely alert and active to curious—he

had to see what was in those cabinets. He moved faster (and he was no slouch

before). But the real kicker was that within two weeks, his gagginess was

completely gone. He had had that problem for months, and we thought that it was

a reaction to having had a nasogastric tube for almost five months. Within two

weeks after starting the Levothroid, he went from eating only Allsoy/sweet

potatoes to eating things like fruit cocktail and chili—table food style

stuff.

http://www.einstein-syndrome.com/health_medical/thyroid_case_histories.htm#Danny

there are other stories there from parents

giving information about their child’s thyroid issues..

KathyR

From: Down Syndrome Treatment [mailto:Down Syndrome Treatment ] On Behalf Of and Behnke

Sent: Tuesday, June 13, 2006 2:08

PM

Down Syndrome Treatment

Subject: RE:

Re: Hi! I am new here! Kathy

Did you

notice him growing again once you got the

thyroid under control? My son, after a good solid

measurable growth has hit a wall for the last year.

His dietitian wondered but after testing through his

peds, it came back within " normal " .

B

[Guest guest]

NO They called with the results. I am calling my endo

doc because she is really good to see if she can

recommend a good ped's doc and go from there....

--- Hoppin' Herd of Hares <feargod@...>

wrote:

> Did you get the lab work and see the results for

> yourself?

>

> Qadoshyah

> <http://www.geocities.com/gotgenetics/home.html>

> *Got Down Syndrome?

> www.gotdownsyndrome.net

> <http://www.gotdownsyndrome.net/>

> <http://www.geocities.com/dsinfo05/home.html>

> <http://www.geocities.com/westernsuntack>

>

> _____

>

> From: Down Syndrome Treatment

> [mailto:Down Syndrome Treatment ] On

> Behalf Of and

> Behnke

> Sent: Tuesday, June 13, 2006 11:08 AM

> Down Syndrome Treatment

> Subject: RE: Re: Hi! I am

> new here! Kathy

>

>

>

> Did you notice him growing again once you got the

> thyroid under control? My son, after a good solid

> measurable growth has hit a wall for the last year.

> His dietitian wondered but after testing through his

> peds, it came back within " normal " .

>

> B

> --- Kathy Ratkiewicz <Kathy_Rcomcast (DOT)

> <mailto:Kathy_R%40comcast.net> net>

> wrote:

>

> > One suggestion that I would have is to make sure

> > that his thyroid status is

> > normal. When my son Danny was a baby, we had a

> > horrible time getting him to

> > take table foods, for several months, all he would

> > eat was Allsoy formula

> > and strained sweet potatoes. Period. He would gag

> on

> > anything else. We tried

> > everything..oral motor therapy, pureed

> > everything..nothing worked for him.

> > He was past due for his thyroid labs, and when we

> > got the results, I was

> > stunned to see that his TSH was over 23 (normal

> > range at that time was up to

> > 10, now the upper limit of normal has been revised

> > to a much lower level)

> > the only signs that he had of

> > hypothyroidism(underactive thyroid) was a

> > slowdown in his height..he hadn't grown for

> several

> > months. Once we started

> > him on thyroid replacement meds, he stopped with

> the

> > gagging...I remember

> > being amazed, when 2 weeks after we started the

> > meds, he was able to eat

> > chili w/meat.table style.I hadn't ground it up for

> > him, PLUS it was a food

> > that he would never try before. We talked it over

> > with his doc, and in

> > retrospect ! figured out that his thyroid must

> have

> > been enlarged, making

> > him gag whenever he tried to swallow anything

> lumpy.

> > I am hyrothyroid, too,

> > and when my TSH levels get whacky, I can feel

> > pressure in my throat.

> >

> > SO.not saying that this IS what is going on

> > w/Collin..there are many other

> > things that could be causing his problem.BUT

> > thyroid issues(especially

> > hypothyroidism) are very common in people w/Ds, so

> > it wouldn't hurt to rule

> > that out if he hasn't had his levels checked

> > lately.

> >

> > KathyR

> >

> >

> >

> > _____

> >

> > From: DownSyndromeInfoExc

> <mailto:Down Syndrome Treatment%40>

> hange

> > [mailto:DownSyndromeInfoExc

> <mailto:Down Syndrome Treatment%40>

> hange ]

> On

> > Behalf Of Tami

> > Sent: Tuesday, June 13, 2006 7:59 AM

> > DownSyndromeInfoExc

> <mailto:Down Syndrome Treatment%40>

> hange

> > Subject: RE: Re: Hi! I

> am

> > new here!

> >

> >

> >

> > Hi Kathy R

> >

> >

> >

> > Collin either gags or he pushes it out with his

> > tongue. The OT wants me to

> > grind up pears and slowly add it to his food. So

> > that is what I am going to

> > do when I get the grinder. Any other suggestions

> > would be great

> >

> >

> >

> > Tami

> >

> >

>

> __________________________________________________

>