A few more questions

[Guest guest]

Tomorrow I take my son to the Pediatrician for further evaluation. I am taking a

list of things that have concerned me since his birth. I researched last night

and found out that his hiccups were most likely a strong indicator of acid

reflux. I asked the fam dr when he was a few months old if the hiccups were

caused by reflux and he said 'no'! He was wrong according to what I read. Have

any of your children had serious problems with reflux?

Also, I am going to print out some of your responses to take to the dr. Do you

have any more advice? My son has not had all of his vaccines and I was wondering

whether you think it is important for them to get all of their shots or to stay

away from the shots if he is definitely diagnosed with MDS. Also, have any of

your children had problems eating bites (tiny) of food and then with therapy,

did this improve? He gags on anything except baby food. It is kind of scary.

Thanks again for all of your help-

Jenni

[Guest guest]

Hi Jenni

Tim had reflux but not hiccups. His reflux was pretty bad though and up until

he was about 6 or 7 he could just bend over from a standing position and that

would make everything come up! (he has no reflux issues now. He may have just

outgrown them)

I think that vaccinations are important. This is a personal choice and I know

it is sometimes scary to think that vaccinations could cause Autism to come out.

However, I personally believe that some children have something laying dormant

in them that comes out (because or not because of the vaccine) and some kids are

just going to have Autism. However, MDS is NOT a reason to not get a vaccine. In

fact, because individuals with MDS could have a lower immune system, I think it

is even more important to get the vaccine. One note: A parent wrote me 2 days

ago that her son (without MDS or Ds) got whooping cough. He had had the vaccine,

but he missed his 10 yr old booster (I didn't even know there was a 10 yr old

booster!). When the parent asked why her son could even get whooping cough, the

doctor's answer was because so many children are not being vaccinated now

because of the Autism scare, these diseases that we have been working to fight

are coming back full force.

So... it is a personal decision. If it were me, I would have them.

Has your son ever had a swallow study and/or his esophogus looked at? There is

definately something going on with the hiccups and the food problems. Does he

have hiccups all the time or at certain times? or is it just every now and then?

I would like to also suggest this website http://www.ds-health.com/ This is

info on Down syndrome, but because people with MDS have that extra chromosome,

they are at risk for the same things. So, this may help you learn more and they

have a good search engine in the site.

This biggest thing is to tell the doctor that individuals with mosaic Down

syndrome are often undiagnosed or misdiagnosed. Look at our new families just

this week! We have seen cases of adults being diagnosed and never knowing they

had anything at all! So, it isn't impossible that your son could have MDS. The

only way to rule it out is to do a blood test. And, it is important that the

test is done for mosaicism not trisomy 21. This way at least 100 cells are

looked at.

Let us know what the doctor says! Good Luck!

Kristy

r9thomas@... wrote:

Tomorrow I take my son to the Pediatrician for further evaluation. I

am taking a list of things that have concerned me since his birth. I researched

last night and found out that his hiccups were most likely a strong indicator of

acid reflux. I asked the fam dr when he was a few months old if the hiccups were

caused by reflux and he said 'no'! He was wrong according to what I read. Have

any of your children had serious problems with reflux?

Also, I am going to print out some of your responses to take to the dr. Do you

have any more advice? My son has not had all of his vaccines and I was wondering

whether you think it is important for them to get all of their shots or to stay

away from the shots if he is definitely diagnosed with MDS. Also, have any of

your children had problems eating bites (tiny) of food and then with therapy,

did this improve? He gags on anything except baby food. It is kind of scary.

Thanks again for all of your help-

Jenni

[Guest guest]

Dear Jenni,

 

I think the vaccinations are a personal decision.  I myself worry about them

also.  I did not know my daughter had mds until she was 10 months old so we went

about all of our shots as normal until that point.  The only thing I did

differently was change her schedule a little bit.  I did not like the fact that

they gave so many shots at one time.  I have chosen to wait until she is two to

get her the chicken pox shot.  I was very worried about the mmr.  I spoke with

the doctor about my concerns.  We came up with an alternate plan and that is to

get the shots individually.  My doctors office does not carry individual doses

but the health department here does.  Unfortunately the health department is

having trouble getting the shots this year.  I call every other week waiting for

them to come in.  They space those shots out 1 every month or so. Now keep in

mind this is just my plan of vaccination and each person has there own feelings

on this

issue. 

  The only other problem I have physically run across is constipation.  When she

was very small brown sugar in her bottle worked well for this.  Now that she is

almost 2 she is on gycolax every other day in her milk.  We keep adjusting the

dosage because too much and she get diarrhea.  Oh my daughter also has problems

with her eyes.  Her one pupil does not adjust.  With further investigation we

found out she is farsighted.  She does not were glass but this did allow me to

get vision therapy for her.  The vision therapist laughs and tell me all of the

time that my daughter sees as well as you and me, but she also works on

developmental.  I believe in taking as much help as I can get because it will

only help my daughter in the long run. 

 

Sue

Subject: A few more questions

To: MosaicDS

Date: Wednesday, September 3, 2008, 8:52 PM

Tomorrow I take my son to the Pediatrician for further evaluation. I am taking a

list of things that have concerned me since his birth. I researched last night

and found out that his hiccups were most likely a strong indicator of acid

reflux. I asked the fam dr when he was a few months old if the hiccups were

caused by reflux and he said 'no'! He was wrong according to what I read. Have

any of your children had serious problems with reflux?

Also, I am going to print out some of your responses to take to the dr. Do you

have any more advice? My son has not had all of his vaccines and I was wondering

whether you think it is important for them to get all of their shots or to stay

away from the shots if he is definitely diagnosed with MDS. Also, have any of

your children had problems eating bites (tiny) of food and then with therapy,

did this improve? He gags on anything except baby food.. It is kind of scary.

Thanks again for all of your help-

Jenni

[Guest guest]

I like the " spacing out " plan rather than foregoing the vaccinations

altogether. My mom had a twin sister who died when they were babies,

because they had whooping cough. My mom survived, but her twin didn't.

I just cannot see not getting vaccinated at all. Like Kristy said, the

reason we're seeing a recurrence of some of these diseases is that

parents are not vaccinating their kids. It's really scary.

A.

Special Educator

Simon Kenton High School

(859)960-0348

cynthia.jones@...

" Deaf People Can Do Anything Except Hear! " (I. King Jordan)

Confidentiality Notice - This email is intended only for the person to

whom it is addressed and may contain confidential information. Any

unauthorized review is prohibited. If you are not the intended

recipient, kindly contact the sender by reply email and destroy all

copies of the original message. If you are the intended recipient, but

do not wish to receive communication through this medium, please advise

the sender immediately.

________________________________

From: MosaicDS [mailto:MosaicDS ] On

Behalf Of Sue

Sent: Thursday, September 04, 2008 7:12 AM

To: MosaicDS

Subject: Re: A few more questions

Dear Jenni,

I think the vaccinations are a personal decision. I myself worry about

them also. I did not know my daughter had mds until she was 10 months

old so we went about all of our shots as normal until that point. The

only thing I did differently was change her schedule a little bit. I

did not like the fact that they gave so many shots at one time. I have

chosen to wait until she is two to get her the chicken pox shot. I was

very worried about the mmr. I spoke with the doctor about my concerns.

We came up with an alternate plan and that is to get the shots

individually. My doctors office does not carry individual doses but the

health department here does. Unfortunately the health department is

having trouble getting the shots this year. I call every other week

waiting for them to come in. They space those shots out 1 every month

or so. Now keep in mind this is just my plan of vaccination and each

person has there own feelings on this

issue.

The only other problem I have physically run across is constipation.

When she was very small brown sugar in her bottle worked well for this.

Now that she is almost 2 she is on gycolax every other day in her milk.

We keep adjusting the dosage because too much and she get diarrhea. Oh

my daughter also has problems with her eyes. Her one pupil does not

adjust. With further investigation we found out she is farsighted. She

does not were glass but this did allow me to get vision therapy for her.

The vision therapist laughs and tell me all of the time that my daughter

sees as well as you and me, but she also works on developmental. I

believe in taking as much help as I can get because it will only help my

daughter in the long run.

Sue

From: r9thomas@... <mailto:r9thomas%40bellsouth.net>

<r9thomas@... <mailto:r9thomas%40bellsouth.net> >

Subject: A few more questions

To: MosaicDS <mailto:MosaicDS%40yahoogroups.com>

Date: Wednesday, September 3, 2008, 8:52 PM

Tomorrow I take my son to the Pediatrician for further evaluation. I am

taking a list of things that have concerned me since his birth. I

researched last night and found out that his hiccups were most likely a

strong indicator of acid reflux. I asked the fam dr when he was a few

months old if the hiccups were caused by reflux and he said 'no'! He was

wrong according to what I read. Have any of your children had serious

problems with reflux?

Also, I am going to print out some of your responses to take to the dr.

Do you have any more advice? My son has not had all of his vaccines and

I was wondering whether you think it is important for them to get all of

their shots or to stay away from the shots if he is definitely diagnosed

with MDS. Also, have any of your children had problems eating bites

(tiny) of food and then with therapy, did this improve? He gags on

anything except baby food.. It is kind of scary.

Thanks again for all of your help-

Jenni

[Guest guest]

,

I had both of my children get their shots on schedule because so many people

are not getting their children vaccinated that these diseases we thought we

had eradicated are back. Plus, we had to get the chicken pox vaccine as my

husband never had it.

Darlene

On Thu, Sep 4, 2008 at 10:20 AM, , - Kenton County <

cynthia.jones@...> wrote:

> I like the " spacing out " plan rather than foregoing the vaccinations

> altogether. My mom had a twin sister who died when they were babies,

> because they had whooping cough. My mom survived, but her twin didn't.

> I just cannot see not getting vaccinated at all. Like Kristy said, the

> reason we're seeing a recurrence of some of these diseases is that

> parents are not vaccinating their kids. It's really scary.

>

> A.

>

> Special Educator

>

> Simon Kenton High School

>

> (859)960-0348

>

> cynthia.jones@... <cynthia.jones%40kenton.kyschools.us>

>

> " Deaf People Can Do Anything Except Hear! " (I. King Jordan)

>

> Confidentiality Notice - This email is intended only for the person to

> whom it is addressed and may contain confidential information. Any

> unauthorized review is prohibited. If you are not the intended

> recipient, kindly contact the sender by reply email and destroy all

> copies of the original message. If you are the intended recipient, but

> do not wish to receive communication through this medium, please advise

> the sender immediately.

>

> ________________________________

>

> From: MosaicDS <MosaicDS%40yahoogroups.com> [mailto:

> MosaicDS <MosaicDS%40yahoogroups.com>] On

> Behalf Of Sue

> Sent: Thursday, September 04, 2008 7:12 AM

> To: MosaicDS <MosaicDS%40yahoogroups.com>

> Subject: Re: A few more questions

>

> Dear Jenni,

>

> I think the vaccinations are a personal decision. I myself worry about

> them also. I did not know my daughter had mds until she was 10 months

> old so we went about all of our shots as normal until that point. The

> only thing I did differently was change her schedule a little bit. I

> did not like the fact that they gave so many shots at one time. I have

> chosen to wait until she is two to get her the chicken pox shot. I was

> very worried about the mmr. I spoke with the doctor about my concerns.

> We came up with an alternate plan and that is to get the shots

> individually. My doctors office does not carry individual doses but the

> health department here does. Unfortunately the health department is

> having trouble getting the shots this year. I call every other week

> waiting for them to come in. They space those shots out 1 every month

> or so. Now keep in mind this is just my plan of vaccination and each

> person has there own feelings on this

> issue.

> The only other problem I have physically run across is constipation.

> When she was very small brown sugar in her bottle worked well for this.

> Now that she is almost 2 she is on gycolax every other day in her milk.

> We keep adjusting the dosage because too much and she get diarrhea. Oh

> my daughter also has problems with her eyes. Her one pupil does not

> adjust. With further investigation we found out she is farsighted. She

> does not were glass but this did allow me to get vision therapy for her.

> The vision therapist laughs and tell me all of the time that my daughter

> sees as well as you and me, but she also works on developmental. I

> believe in taking as much help as I can get because it will only help my

> daughter in the long run.

>

> Sue

>

>

>

> From: r9thomas@... <r9thomas%40bellsouth.net> <mailto:

> r9thomas%40bellsouth.net <r9thomas%2540bellsouth.net>>

> <r9thomas@... <r9thomas%40bellsouth.net> <mailto:

> r9thomas%40bellsouth.net <r9thomas%2540bellsouth.net>> >

> Subject: A few more questions

> To: MosaicDS <MosaicDS%40yahoogroups.com> <mailto:

> MosaicDS%40yahoogroups.com <MosaicDS%2540yahoogroups.com>>

> Date: Wednesday, September 3, 2008, 8:52 PM

>

> Tomorrow I take my son to the Pediatrician for further evaluation. I am

> taking a list of things that have concerned me since his birth. I

> researched last night and found out that his hiccups were most likely a

> strong indicator of acid reflux. I asked the fam dr when he was a few

> months old if the hiccups were caused by reflux and he said 'no'! He was

> wrong according to what I read. Have any of your children had serious

> problems with reflux?

>

> Also, I am going to print out some of your responses to take to the dr.

> Do you have any more advice? My son has not had all of his vaccines and

> I was wondering whether you think it is important for them to get all of

> their shots or to stay away from the shots if he is definitely diagnosed

> with MDS. Also, have any of your children had problems eating bites

> (tiny) of food and then with therapy, did this improve? He gags on

> anything except baby food.. It is kind of scary.

>

> Thanks again for all of your help-

> Jenni

>

>

[Guest guest]

I for one strongly believe in vaccinations. Because of the possibility for

increases in other small viruses ie upper respiratory why let yourself be

suseptable to something more serious. It is proven that vaccines dont cause

autism. Other than feeling bad for my baby having to get an injection or usually

3 for that mater I feel I have made a sound decision to protect his health by

vaccinating him. I work as a medical researcher for a giant University so I can

honestly say I believe in them.

Subject: A few more questions

To: MosaicDS

Date: Wednesday, September 3, 2008, 10:52 PM

Tomorrow I take my son to the Pediatrician for further evaluation. I am taking a

list of things that have concerned me since his birth. I researched last night

and found out that his hiccups were most likely a strong indicator of acid

reflux. I asked the fam dr when he was a few months old if the hiccups were

caused by reflux and he said 'no'! He was wrong according to what I read. Have

any of your children had serious problems with reflux?

Also, I am going to print out some of your responses to take to the dr. Do you

have any more advice? My son has not had all of his vaccines and I was wondering

whether you think it is important for them to get all of their shots or to stay

away from the shots if he is definitely diagnosed with MDS. Also, have any of

your children had problems eating bites (tiny) of food and then with therapy,

did this improve? He gags on anything except baby food. It is kind of scary.

Thanks again for all of your help-

Jenni

[Guest guest]

I don't believe everything the American Board of Pediatrics has to say about

vaccines. The fact is to many vaccines are given at one time and that is

the issue. Back in the old days when I was a kid in the 60's and 70's you

had until after the age of 5 to receive vaccines. My pediatrician agrees

that there are children that can get autism do to the mercury in the

vaccines. My son was very ill to his MMR back in November of 08

had a high fever of 103 for two days.

The research on MMR is not conclusive enough only when 20 are done in a

study.

From: MosaicDS [mailto:MosaicDS ] On Behalf

Of Shaffer

Sent: Thursday, September 04, 2008 11:03 AM

To: MosaicDS

Subject: Re: A few more questions

I for one strongly believe in vaccinations. Because of the possibility for

increases in other small viruses ie upper respiratory why let yourself be

susceptible to something more serious. It is proven that vaccines don't

cause autism. Other than feeling bad for my baby having to get an injection

or usually 3 for that mater I feel I have made a sound decision to protect

his health by vaccinating him. I work as a medical researcher for a giant

University so I can honestly say I believe in them.

From: r9thomas@... <mailto:r9thomas%40bellsouth.net>

<r9thomas@... <mailto:r9thomas%40bellsouth.net> >

Subject: A few more questions

To: MosaicDS <mailto:MosaicDS%40yahoogroups.com>

Date: Wednesday, September 3, 2008, 10:52 PM

Tomorrow I take my son to the Pediatrician for further evaluation. I am

taking a list of things that have concerned me since his birth. I researched

last night and found out that his hiccups were most likely a strong

indicator of acid reflux. I asked the fam dr when he was a few months old if

the hiccups were caused by reflux and he said 'no'! He was wrong according

to what I read. Have any of your children had serious problems with reflux?

Also, I am going to print out some of your responses to take to the dr. Do

you have any more advice? My son has not had all of his vaccines and I was

wondering whether you think it is important for them to get all of their

shots or to stay away from the shots if he is definitely diagnosed with MDS.

Also, have any of your children had problems eating bites (tiny) of food and

then with therapy, did this improve? He gags on anything except baby food.

It is kind of scary.

Thanks again for all of your help-

Jenni

[Guest guest]

I almost died from the DT vaccine, which is given in the 10th grade.

We do not do vaccines any more and oddly enough the 4 I have now have

never had the chicken pox, and 3 of them have mistakenly been in

contact with someone in public who had ACTIVE chicken pox. Was it due

to lack of vaccines? WHo knows. There is also a lot offormaldehyde in

vaccines and I am allergic to formalin (a type of formaldehyde). (A

bad thing when I die, huh? LOL) Anyway, on my webpage on myspace

(myspace.com/agirlnamedsuess21), there is a youtube video on

vaccines. You can also search youtube for videos on vaccines. (You

may have to scroll down a bit in order to see the vaccine video on

mine)...I strongly suggest getting facts on vaccines (or any other

medicine) before taking them.

In recent years, the hepatitis B vaccine that is routinely given to

babies (but not to mine!) was " recalled " due to extremely high levels

of mercury. Tell me, howyou recall a vaccine that has already been

given? Those poor babies.

Also, look a the recorded facts on vaccines given to our enlisted.

The gov't gave one man smallpox and his son contracted it as well.

It is something to think about.

SUSan

>

> From: r9thomas@... <mailto:r9thomas%40bellsouth.net>

> <r9thomas@... <mailto:r9thomas%40bellsouth.net> >

> Subject: A few more questions

> To: MosaicDS <mailto:MosaicDS%40yahoogroups.com>

> Date: Wednesday, September 3, 2008, 10:52 PM

>

> Tomorrow I take my son to the Pediatrician for further evaluation.

I am

> taking a list of things that have concerned me since his birth. I

researched

> last night and found out that his hiccups were most likely a strong

> indicator of acid reflux. I asked the fam dr when he was a few

months old if

> the hiccups were caused by reflux and he said 'no'! He was wrong

according

> to what I read. Have any of your children had serious problems with

reflux?

>

> Also, I am going to print out some of your responses to take to the

dr. Do

> you have any more advice? My son has not had all of his vaccines

and I was

> wondering whether you think it is important for them to get all of

their

> shots or to stay away from the shots if he is definitely diagnosed

with MDS.

> Also, have any of your children had problems eating bites (tiny) of

food and

> then with therapy, did this improve? He gags on anything except

baby food.

> It is kind of scary.

>

> Thanks again for all of your help-

> Jenni

>

>

[Guest guest]

Au contraire,AUTISM and the aggravation of autism symnptoms " is " and

has been linked to VACCINES. Here is just one general websearch,

with " reliable " medical sources within the search, where youcan read

up on this. Vaccines have also been related to SIDS, as well, and

many deaths that could only be explained by recent administration of

vaccines.

I recommend researching the facts and then making your own informed

choice decision.

Here is the link:

http://search.yahoo.com/search?fr=ush-groups & p=autism+link+to+vaccines

(Licensed Nurse in the State of Georgia)-- In

MosaicDS , Shaffer <flynhi_1@... wrote:

>

> I for one strongly believe in vaccinations. Because of the

possibility for increases in other small viruses ie upper respiratory

why let yourself be suseptable to something more serious. It is

proven that vaccines dont cause autism. Other than feeling bad for my

baby having to get an injection or usually 3 for that mater I feel I

have made a sound decision to protect his health by vaccinating him.

I work as a medical researcher for a giant University so I can

honestly say I believe in them.

>

>

>

>

>

>

> Subject: A few more questions

> To: MosaicDS

> Date: Wednesday, September 3, 2008, 10:52 PM

>

>

>

>

>

>

> Tomorrow I take my son to the Pediatrician for further evaluation.

I am taking a list of things that have concerned me since his birth.

I researched last night and found out that his hiccups were most

likely a strong indicator of acid reflux. I asked the fam dr when he

was a few months old if the hiccups were caused by reflux and he

said 'no'! He was wrong according to what I read. Have any of your

children had serious problems with reflux?

>

> Also, I am going to print out some of your responses to take to the

dr. Do you have any more advice? My son has not had all of his

vaccines and I was wondering whether you think it is important for

them to get all of their shots or to stay away from the shots if he

is definitely diagnosed with MDS. Also, have any of your children had

problems eating bites (tiny) of food and then with therapy, did this

improve? He gags on anything except baby food. It is kind of scary.

>

> Thanks again for all of your help-

> Jenni

>

>

[Guest guest]

Hi ,

My name is Jo Ann. My daughter (three this month)has MDS and

my daughter (six)has Autism. Trying to decide what to do about

vaccinations was not easy. There is so much contradicting info out

there right now.Since her sister has autism, when it was time for

's shots her Dr. and I talked for a while and decided to

vaccinate her but on a modified schedule. I believe that there is

some gentic predisposition mixed with an enviromental trigger that

caused 's autism,but felt that with 's lower immune system

that she would be more vunerable to the diseases.

In Defense of those parents who believe Vaccines caused their

child's autism. Most of those I have met aren't against vaccines,

they just want them given seperately. over time. so the child's

immune system has less to fight at once.

My two cents

FWIW

Jo Ann

>

> Tomorrow I take my son to the Pediatrician for further evaluation.

I am taking a list of things that have concerned me since his birth.

I researched last night and found out that his hiccups were most

likely a strong indicator of acid reflux. I asked the fam dr when he

was a few months old if the hiccups were caused by reflux and he

said 'no'! He was wrong according to what I read. Have any of your

children had serious problems with reflux?

>

> Also, I am going to print out some of your responses to take to

the dr. Do you have any more advice? My son has not had all of his

vaccines and I was wondering whether you think it is important for

them to get all of their shots or to stay away from the shots if he

is definitely diagnosed with MDS. Also, have any of your children

had problems eating bites (tiny) of food and then with therapy, did

this improve? He gags on anything except baby food. It is kind of

scary.

>

> Thanks again for all of your help-

> Jenni

>

>

>

[Guest guest]

Why in the world would a doctor say that they'd have to go thru the child's

testicles????????????????? You should ask...how GIRLS are tested then...

sheesh...

its a simple blood test.... like, thru the arm. Could I suggest.........a

second opinion!!

As far as cost, I'm sure that insurance's can vary, but I dont think anyone

here has ever posted about insurance not covering it. It was definitely

completely covered for us!

In a message dated 9/4/2008 10:40:20 P.M. Mountain Daylight Time,

agirlnamedsuess@... writes:

Just based on your comments and without knowing your son, it sounds

like GERD or reflux disease....it is treatable with or without

medication.

SUSan

>

> Thankyou for the information. When you say gagging is a normal part

of learning how to chew, what do you mean? My other children never

gagged like he does. Whatever is on his stomach, he will gag up. Can

he aspirate his food? I don't know and I'm scared to give him

anything more than crunched up food (like crackers).

>

> I took him to the dr today and the dr thinks that he is just late

on things. He said he wants to see him at 12 months and if he is

still late, then pursue more testing. He said that they have to draw

blood through a needle in his testicles to determine if it is MDS and

that it costs 12,000 dollars. Is this true? Will insurance NOT pay?

> Thanks-

> Jenni

>

>

>

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

>

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[Guest guest]

Hey Jenni-

Just letting you know that my Pediatrician explained that a while ago

(back in the 90's) the vaccinations had a preservative in it that was

toxic. I forget the name of it. Once they discovered the toxic

level, it was banned from all vaccinations. She has done extensive

research on the subject so I trust her. She did say that the concern

now is more with the number of vaccinations given at one time but she

has never found any evidence to prove that the higher #s lead to

autism. Once we discussed it further, we decided that since Zoe is

dealing with so much with the post heart surgery and the lower

immunine system that it wouldn't hurt to break up the 12 mo

immunizations into 2 separate days. (we did it 2 weeks apart). She

has always answered my concerns with the idea that if it gives Zoe an

edge, why not? (that was the thought process behind giving her

organic foods, keeping her out of daycare, and replacing all of her

bottles with DPA free bottles). We aren't saying that this is a cure-

all but just giving her every opportunity to stay healthy.

That way of thinking has helped me a lot through this year!

Suzanne mom to Zoe, 13 mo MDS

>

> r9thomas@... wrote:

> Tomorrow I take my son to the Pediatrician for further

evaluation. I am taking a list of things that have concerned me since

his birth. I researched last night and found out that his hiccups

were most likely a strong indicator of acid reflux. I asked the fam

dr when he was a few months old if the hiccups were caused by reflux

and he said 'no'! He was wrong according to what I read. Have any of

your children had serious problems with reflux?

>

> Also, I am going to print out some of your responses to take to the

dr. Do you have any more advice? My son has not had all of his

vaccines and I was wondering whether you think it is important for

them to get all of their shots or to stay away from the shots if he

is definitely diagnosed with MDS. Also, have any of your children had

problems eating bites (tiny) of food and then with therapy, did this

improve? He gags on anything except baby food. It is kind of scary.

>

> Thanks again for all of your help-

> Jenni

>

>

[Guest guest]

Oh- and one more thing, remember- gagging is a normal process that

every baby has to go through to learn to chew their foods. Gagging

(as scary as it is!) is NOT choking. If he is making noise, he is

fine and just learning. It does get better too as they get older.

-Suzanne

>

>

> >

> > Tomorrow I take my son to the Pediatrician for further

evaluation.

> I am taking a list of things that have concerned me since his

birth.

> I researched last night and found out that his hiccups were most

> likely a strong indicator of acid reflux. I asked the fam dr when

he

> was a few months old if the hiccups were caused by reflux and he

> said 'no'! He was wrong according to what I read. Have any of your

> children had serious problems with reflux?

> >

> > Also, I am going to print out some of your responses to take to

> the dr. Do you have any more advice? My son has not had all of his

> vaccines and I was wondering whether you think it is important for

> them to get all of their shots or to stay away from the shots if he

> is definitely diagnosed with MDS. Also, have any of your children

> had problems eating bites (tiny) of food and then with therapy, did

> this improve? He gags on anything except baby food. It is kind of

> scary.

> >

> > Thanks again for all of your help-

> > Jenni

> >

> >

> >

[Guest guest]

Thankyou for the information. When you say gagging is a normal part of learning

how to chew, what do you mean? My other children never gagged like he does.

Whatever is on his stomach, he will gag up. Can he aspirate his food? I don't

know and I'm scared to give him anything more than crunched up food (like

crackers).

I took him to the dr today and the dr thinks that he is just late on things. He

said he wants to see him at 12 months and if he is still late, then pursue more

testing. He said that they have to draw blood through a needle in his testicles

to determine if it is MDS and that it costs 12,000 dollars. Is this true? Will

insurance NOT pay?

Thanks-

Jenni

[Guest guest]

You don't have to do the blood draw through his testicles! Find a different

doctor! I am not sure of the cost, but insurance will pay for it. You need a

doctor who knows what he is doing and who is not trying to intimidate you about

this test. That is what this doctor is trying to do!

As for his gagging, it is a problem and it needs to be checked out and

possibly you should see a gastroenterologist to be sure everything is going ok

with him. This will just help you rule out any trouble and help you to not worry

about all this.

Kristy

Randal wrote:

Thankyou for the information. When you say gagging is a normal part of

learning how to chew, what do you mean? My other children never gagged like he

does. Whatever is on his stomach, he will gag up. Can he aspirate his food? I

don't know and I'm scared to give him anything more than crunched up food (like

crackers).

I took him to the dr today and the dr thinks that he is just late on things. He

said he wants to see him at 12 months and if he is still late, then pursue more

testing. He said that they have to draw blood through a needle in his testicles

to determine if it is MDS and that it costs 12,000 dollars. Is this true? Will

insurance NOT pay?

Thanks-

Jenni

[Guest guest]

Geez Jenni- that info about the blood work sounds weird. We had Zoe

tested in the hospital the first day and I never got a bill like

that. I'm not sure how accurate that is... Kristy would know more

about that.

As far as the gagging. I meant when he has food in his mouth and he

makes gagging sounds while trying to eat. Yours sounds more like

refluxing food which Zoe does do too but she doesn't gag on it...

just comes up like spitting up / vomiting. We have her on Prevacid

which has done great once we were able to give her the tablet (broken

up) directly in her mouth. We used to use a seringe with water but I

don't think it worked as well.

I'm wondering how thick the food is when your son is gagging it up.

Zoe's is like mucus when it does come up but not thick enough to

aspirate her. I'd ask the doctor about reflux meds if he isn't

already on them.

- Suzanne

>

> Thankyou for the information. When you say gagging is a normal part

of learning how to chew, what do you mean? My other children never

gagged like he does. Whatever is on his stomach, he will gag up. Can

he aspirate his food? I don't know and I'm scared to give him

anything more than crunched up food (like crackers).

>

> I took him to the dr today and the dr thinks that he is just late

on things. He said he wants to see him at 12 months and if he is

still late, then pursue more testing. He said that they have to draw

blood through a needle in his testicles to determine if it is MDS and

that it costs 12,000 dollars. Is this true? Will insurance NOT pay?

> Thanks-

> Jenni

>

>

>

>

[Guest guest]

I think the doctor is less than informed and may be asserting the

necessity to check for " gonadal mosaicism " ? Weird to do in a baby,

though. And LOL at the $12,000....maybe $1200,but that is still

really high. (Medicaid does pay for these tests,if you have medicaid

for your child. Other insurances should pay as well, but the only way

to know for sure is to contact the INSURANCE company, not the doctor.

The doctor sounds like one I had that infatically said to me there

was no sense retesting the DNA because " the DNA doesn't change " ...LOL

on that one also cause he was wrong!! Low counts like 20 cell counts

are not good enough.) You really need a good " geneticist " ; ask for a

referral to one. If you cannot find a local geneticist, then let me

know and I will find one for you. The local hospitals (big ones that

are teaching hospitals are good.) The local health department may be

able to help with a referral.

--P.S. Isn't this a prime example of what our pediatricians

knowledge of types of Down Syndrome is?

<br>- In )MosaicDS , Kristy Colvin wrote:

>

> You don't have to do the blood draw through his testicles! Find a

different doctor! I am not sure of the cost, but insurance will pay

for it. You need a doctor who knows what he is doing and who is not

trying to intimidate you about this test. That is what this doctor is

trying to do!

>

> As for his gagging, it is a problem and it needs to be checked

out and possibly you should see a gastroenterologist to be sure

everything is going ok with him. This will just help you rule out any

trouble and help you to not worry about all this.

>

> Kristy

>

> Randal wrote:

> Thankyou for the information. When you say gagging is a

normal part of learning how to chew, what do you mean? My other

children never gagged like he does. Whatever is on his stomach, he

will gag up. Can he aspirate his food? I don't know and I'm scared to

give him anything more than crunched up food (like crackers).

>

> I took him to the dr today and the dr thinks that he is just late

on things. He said he wants to see him at 12 months and if he is

still late, then pursue more testing. He said that they have to draw

blood through a needle in his testicles to determine if it is MDS and

that it costs 12,000 dollars. Is this true? Will insurance NOT pay?

> Thanks-

> Jenni

>

>

[Guest guest]

Just based on your comments and without knowing your son, it sounds

like GERD or reflux disease....it is treatable with or without

medication.

SUSan

>

> Thankyou for the information. When you say gagging is a normal part

of learning how to chew, what do you mean? My other children never

gagged like he does. Whatever is on his stomach, he will gag up. Can

he aspirate his food? I don't know and I'm scared to give him

anything more than crunched up food (like crackers).

>

> I took him to the dr today and the dr thinks that he is just late

on things. He said he wants to see him at 12 months and if he is

still late, then pursue more testing. He said that they have to draw

blood through a needle in his testicles to determine if it is MDS and

that it costs 12,000 dollars. Is this true? Will insurance NOT pay?

> Thanks-

> Jenni

>

>

>

>

[Guest guest]

I could imagine, in an adult male, possibly testing the

sperm.......................... but I can't think of ANY reason on earth why an

infant or child

would have to have blood drawn thru his testicles. Who does that? Ever?

They aren't going for a sperm sample....

Ya know though Jenni.... almost all of us could probably tell you some

STUPID thing a doctor said to us or told us at some point. When you're dealing

with something rarer like this............it seems that doctors will sometimes

just spout off nonsense than just look you in the face and say... " I don't

know, let me do some research " !!

Angel

Mom to , 15

In a message dated 9/5/2008 6:41:41 A.M. Mountain Daylight Time,

r9thomas@... writes:

WOW! I cannot believe this Dr told me this. He sent us to the hospital for

blood work for a CBC. After my husband told him that my last pregnancy ended

at 18 weeks because the baby had either trisomy 18 or 's syndrome and

that my sister had a trisomy 13 baby (the geneticist called it a 'fluke'), he

said he would do a karotype with the bloodwork. I said 'will MDS show up this

way' and he said it would have to be drawn thru his testicles. Then last

night, I started thinking back to the appt. Most of it, he talked about his

developmental delays and said that he is still within the norm. When he

examined him, he looked in his eyes, his ears and listened to his heart. He

didn't

put him on the table to look at his flexibility. He never picked him up! We

only have a few pediatricians in this town-I think I will go to Huntsville and

get a second opinion. So, is there some type of genetic syndrome where you

would have to go thru his testicles? I will send some complaint to somewhere if

I find out he just plain lied to us.

thanks again-

Jenni

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

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

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*******************************************************

Purchase your MDS awareness bracelet

today!http://www.imdsa.org/Awareness/aware.htm

**************************************************************************

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*********************************************************

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[Guest guest]

the gagging on food.... i'm drawing a blank, but hoping the others can help

me out.......................... I know some of you have talked about your

children having problems with food TEXTURES, etc. It's definitely NOT reflux,

that happens at the stomach, the sphincter there not functioning properly,

and then stomach acid/food comes back up. But your son isn't even getting

the food down.

Sensory disorders....is that what it falls under usually.... some type of

sensory issue, where the texture of the food is a problem??

anyone? LOL

Angel

In a message dated 9/5/2008 7:04:11 A.M. Mountain Daylight Time,

Darleneand@... writes:

Jenni -

Are you in AL? Huntsville was the clue. I would definitely go to the

closest major city and go to the Children's Hospital located there - here in

PA - I have to travel an hour+ to get to Children's Hospital of Philadelphia

- but there specialists are worth it - You may need to see a GI specialist,

a Genetic Specialist and get blood work done. Not in that order - GI, blood

work then Genetic.

Darlene - Mom to (11) and (9)

> Jenni

> You can also go to our site

http://www.imdsa.org/Information/develop.htmfor the MDS developmental chart.

This will help you and your doctor see if

> he is following the MDS development or the typical development. Of course,

> this chart is not absolute for every single child because each are

different

> and do their own thing!

>

> I don't know if the doctor was lying to you or if he was just plain stupid.

> (sorry...can't come up with a better word) But either way, this is totally

> not necessary and in fact, if he doesn't have the extra cells in that area

> of the body the test would be inaccurate.

>

> Keep trying! It will all work out!

> Kristy

>

> Randal <r9thomas@... <r9thomas%40bellsouth.net>> wrote:

> WOW! I cannot believe this Dr told me this. He sent us to the hospital for

> blood work for a CBC. After my husband told him that my last pregnancy

ended

> at 18 weeks because the baby had either trisomy 18 or 's syndrome and

> that my sister had a trisomy 13 baby (the geneticist called it a 'fluke'),

> he said he would do a karotype with the bloodwork. I said 'will MDS show

up

> this way' and he said it would have to be drawn thru his testicles. Then

> last night, I started thinking back to the appt. Most of it, he talked

about

> his developmental delays and said that he is still within the norm. When he

> examined him, he looked in his eyes, his ears and listened to his heart. He

> didn't put him on the table to look at his flexibility. He never picked him

> up! We only have a few pediatricians in this town-I think I will go to

> Huntsville and get a second opinion. So, is there some type of genetic

> syndrome where you would have to go thru his testicles? I will send some

> complaint to somewhere if I find out he just plain lied to us.

> thanks again-

> Jenni

>

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

>

> Kristy Colvin

> IMDSA President

> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

> International Mosaic Down Syndrome Association

> PH:

> Toll Free: 1-888-MDS-LINK

> http://www.imdsa.org

> http://www.mosaicmoments.today.com

>

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

>

>

>

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

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

Become a member of IMDSA today at http://www.imdsa.org

*******************************************************

Purchase your MDS awareness bracelet

today!http://www.imdsa.org/Awareness/aware.htm

**************************************************************************

Contact IMDSA Today at:

IMDSA~PO Box 1052~lin,TX~77856~USA~1-~1-888-MDS-LINK

*********************************************************************

Share your story today! http://www.mosaicdownsyndrome.com

*********************************************************

To unsubscribe from this list, send e-mail to:

MosaicDS-unsubscribeegroups

*************************************************

To visit the e-group website go to: http://groups.yahoo.com/group/MosaicDS/

*************************************************Yahoo! Groups Links

**************It's only a deal if it's where you want to go. Find your travel

deal here.

(http://information.travel.aol.com/deals?ncid=aoltrv00050000000047)

[Guest guest]

Jenni,

That doc is wrong about taking blood from his testicles! OMG I'm crossin my legs

in pain just thinkin about it LOL I had Austin tested at the conference last

year and all that was done was cheek swab and blood draw from a vein in HIS

ARM!! (Now granted they had to stick Austin 3 times cuz veins kept collapsing

and Austin's a hard stick anyways)

Why in the world would a Doc wanted to do a blood stick in the testicles?! Is he

demented, sick, twisted, all of the above?!

Research at the conference was of no charge..

Hope this helps....

 

Blessings Abound,

(Becky) Rowe

Mom to Trey (8 ADHD) & Austin (5 MDS)

________________________________

Family Assistance Coordinator

 www.imdsa.org or becky@...

Help Team Austin @:

http://teambrats08.chipin.com/team-austin

 

Re: Re: A few more questions

Thankyou for the information. When you say gagging is a normal part of learning

how to chew, what do you mean? My other children never gagged like he does.

Whatever is on his stomach, he will gag up. Can he aspirate his food? I don't

know and I'm scared to give him anything more than crunched up food (like

crackers).

I took him to the dr today and the dr thinks that he is just late on things. He

said he wants to see him at 12 months and if he is still late, then pursue more

testing. He said that they have to draw blood through a needle in his testicles

to determine if it is MDS and that it costs 12,000 dollars. Is this true? Will

insurance NOT pay?

Thanks-

Jenni

[Guest guest]

WOW! I cannot believe this Dr told me this. He sent us to the hospital for

blood work for a CBC. After my husband told him that my last pregnancy ended at

18 weeks because the baby had either trisomy 18 or 's syndrome and that my

sister had a trisomy 13 baby (the geneticist called it a 'fluke'), he said he

would do a karotype with the bloodwork. I said 'will MDS show up this way' and

he said it would have to be drawn thru his testicles. Then last night, I

started thinking back to the appt. Most of it, he talked about his developmental

delays and said that he is still within the norm. When he examined him, he

looked in his eyes, his ears and listened to his heart. He didn't put him on the

table to look at his flexibility. He never picked him up! We only have a few

pediatricians in this town-I think I will go to Huntsville and get a second

opinion. So, is there some type of genetic syndrome where you would have to go

thru his testicles? I will send some complaint to somewhere if I find out he

just plain lied to us.

thanks again-

Jenni

[Guest guest]

When he gags, the food is usually about 1/3 back on this tongue. He just

continues to gag and then whatever he has eaten, comes up. Sometimes, it is

mucousy looking, sometimes it is just baby food. It seems if you put something

under his tongue, he is able to handle it better. Yesterday, I gave him soft

cheerios from my other child's cereal. He ate two of them and the third one, he

started gagging on. This dr also told me that it wasn't reflux. If it isn't

reflux, then what is it? because it is not normal. I have 6 other children and

they never had hiccups after every meal and throughout the day and night at

other times. Now that he is older, he doesn't get hiccups all of the time, but

he still gets them.

Thanks again-

Jenni

Re: A few more questions

Geez Jenni- that info about the blood work sounds weird. We had Zoe

tested in the hospital the first day and I never got a bill like

that. I'm not sure how accurate that is... Kristy would know more

about that.

As far as the gagging. I meant when he has food in his mouth and he

makes gagging sounds while trying to eat. Yours sounds more like

refluxing food which Zoe does do too but she doesn't gag on it...

just comes up like spitting up / vomiting. We have her on Prevacid

which has done great once we were able to give her the tablet (broken

up) directly in her mouth. We used to use a seringe with water but I

don't think it worked as well.

I'm wondering how thick the food is when your son is gagging it up.

Zoe's is like mucus when it does come up but not thick enough to

aspirate her. I'd ask the doctor about reflux meds if he isn't

already on them.

- Suzanne

>

> Thankyou for the information. When you say gagging is a normal part

of learning how to chew, what do you mean? My other children never

gagged like he does. Whatever is on his stomach, he will gag up. Can

he aspirate his food? I don't know and I'm scared to give him

anything more than crunched up food (like crackers).

>

> I took him to the dr today and the dr thinks that he is just late

on things. He said he wants to see him at 12 months and if he is

still late, then pursue more testing. He said that they have to draw

blood through a needle in his testicles to determine if it is MDS and

that it costs 12,000 dollars. Is this true? Will insurance NOT pay?

> Thanks-

> Jenni

>

>

>

>

[Guest guest]

Jenni

You can also go to our site http://www.imdsa.org/Information/develop.htm for

the MDS developmental chart. This will help you and your doctor see if he is

following the MDS development or the typical development. Of course, this chart

is not absolute for every single child because each are different and do their

own thing!

I don't know if the doctor was lying to you or if he was just plain stupid.

(sorry...can't come up with a better word) But either way, this is totally not

necessary and in fact, if he doesn't have the extra cells in that area of the

body the test would be inaccurate.

Keep trying! It will all work out!

Kristy

Randal wrote:

WOW! I cannot believe this Dr told me this. He sent us to the hospital

for blood work for a CBC. After my husband told him that my last pregnancy ended

at 18 weeks because the baby had either trisomy 18 or 's syndrome and that

my sister had a trisomy 13 baby (the geneticist called it a 'fluke'), he said he

would do a karotype with the bloodwork. I said 'will MDS show up this way' and

he said it would have to be drawn thru his testicles. Then last night, I started

thinking back to the appt. Most of it, he talked about his developmental delays

and said that he is still within the norm. When he examined him, he looked in

his eyes, his ears and listened to his heart. He didn't put him on the table to

look at his flexibility. He never picked him up! We only have a few

pediatricians in this town-I think I will go to Huntsville and get a second

opinion. So, is there some type of genetic syndrome where you would have to go

thru his testicles? I will send some

complaint to somewhere if I find out he just plain lied to us.

thanks again-

Jenni

[Guest guest]

Jenni -

Are you in AL? Huntsville was the clue. I would definitely go to the

closest major city and go to the Children's Hospital located there - here in

PA - I have to travel an hour+ to get to Children's Hospital of Philadelphia

- but there specialists are worth it - You may need to see a GI specialist,

a Genetic Specialist and get blood work done. Not in that order - GI, blood

work then Genetic.

Darlene - Mom to (11) and (9)

> Jenni

> You can also go to our site http://www.imdsa.org/Information/develop.htmfor

the MDS developmental chart. This will help you and your doctor see if

> he is following the MDS development or the typical development. Of course,

> this chart is not absolute for every single child because each are different

> and do their own thing!

>

> I don't know if the doctor was lying to you or if he was just plain stupid.

> (sorry...can't come up with a better word) But either way, this is totally

> not necessary and in fact, if he doesn't have the extra cells in that area

> of the body the test would be inaccurate.

>

> Keep trying! It will all work out!

> Kristy

>

> Randal <r9thomas@... <r9thomas%40bellsouth.net>> wrote:

> WOW! I cannot believe this Dr told me this. He sent us to the hospital for

> blood work for a CBC. After my husband told him that my last pregnancy ended

> at 18 weeks because the baby had either trisomy 18 or 's syndrome and

> that my sister had a trisomy 13 baby (the geneticist called it a 'fluke'),

> he said he would do a karotype with the bloodwork. I said 'will MDS show up

> this way' and he said it would have to be drawn thru his testicles. Then

> last night, I started thinking back to the appt. Most of it, he talked about

> his developmental delays and said that he is still within the norm. When he

> examined him, he looked in his eyes, his ears and listened to his heart. He

> didn't put him on the table to look at his flexibility. He never picked him

> up! We only have a few pediatricians in this town-I think I will go to

> Huntsville and get a second opinion. So, is there some type of genetic

> syndrome where you would have to go thru his testicles? I will send some

> complaint to somewhere if I find out he just plain lied to us.

> thanks again-

> Jenni

>

>