Re: Not sure where to start...

[Guest guest]

Get as many appointments,as many tests and ask as many questions as possible

________________________________

To: MosaicDS

Sent: Wed, December 29, 2010 6:39:28 PM

Subject: Not sure where to start...

 

Hi! My three year old son was diagnosed with MDS when he was 18 months old. It

seems that he is only slightly affected, but we went no further than the initial

blood test to be sure. He started speech therapy this year and I am wondering if

we should be doing more than the routine well-child checkups at the

pediatrician. The echo-cardiogram theme keeps coming up on different posts I

read... is that something I should have done?

My other concern is his very large tonsils. Elias had tubes in last year but

recently his breathing has become even louder than it used to be, and I notice

him pausing and gasping in his sleep. I will schedule another appointment with

his ENT, but is there something more I should be telling the doctor, specific to

MDS?

Thanks so much for your input... it is a relief to be part of this group...

~melissa~

[Guest guest]

What tests should we start with?

>

> Get as many appointments,as many tests and ask as many questions as possible

>

>

>

>

> ________________________________

>

> To: MosaicDS

> Sent: Wed, December 29, 2010 6:39:28 PM

> Subject: Not sure where to start...

>

>  

> Hi! My three year old son was diagnosed with MDS when he was 18 months old. It

> seems that he is only slightly affected, but we went no further than the

initial

> blood test to be sure. He started speech therapy this year and I am wondering

if

> we should be doing more than the routine well-child checkups at the

> pediatrician. The echo-cardiogram theme keeps coming up on different posts I

> read... is that something I should have done?

>

> My other concern is his very large tonsils. Elias had tubes in last year but

> recently his breathing has become even louder than it used to be, and I notice

> him pausing and gasping in his sleep. I will schedule another appointment with

> his ENT, but is there something more I should be telling the doctor, specific

to

> MDS?

>

> Thanks so much for your input... it is a relief to be part of this group...

> ~melissa~

>

>

>

>

>

>

>

>

[Guest guest]

Welcome!

This DS health guidelines should help answer some of your questions. 

http://imdsa.org/Resources/Documents/Information/HealthGuidelines.pdf

Hellard

IMDSA President

brandy@...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

http://www.imdsa.org

Subject: Not sure where to start...

To: MosaicDS

Date: Wednesday, December 29, 2010, 7:39 PM

 

Hi! My three year old son was diagnosed with MDS when he was 18 months

old. It seems that he is only slightly affected, but we went no further than

the initial blood test to be sure. He started speech therapy this year and I am

wondering if we should be doing more than the routine well-child checkups at the

pediatrician. The echo-cardiogram theme keeps coming up on different posts I

read... is that something I should have done?

My other concern is his very large tonsils. Elias had tubes in last year but

recently his breathing has become even louder than it used to be, and I notice

him pausing and gasping in his sleep. I will schedule another appointment with

his ENT, but is there something more I should be telling the doctor, specific to

MDS?

Thanks so much for your input... it is a relief to be part of this group...

~melissa~

[Guest guest]

Thank you !

________________________________

To: MosaicDS

Sent: Wed, December 29, 2010 8:18:48 PM

Subject: Re: Not sure where to start...

Welcome!

This DS health guidelines should help answer some of your questions.

http://imdsa.org/Resources/Documents/Information/HealthGuidelines.pdf

Hellard

IMDSA President

brandy@...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

http://www.imdsa.org

Subject: Not sure where to start...

To: MosaicDS

Date: Wednesday, December 29, 2010, 7:39 PM

Hi! My three year old son was diagnosed with MDS when he was 18 months old. It

seems that he is only slightly affected, but we went no further than the initial

blood test to be sure. He started speech therapy this year and I am wondering

if we should be doing more than the routine well-child checkups at the

pediatrician. The echo-cardiogram theme keeps coming up on different posts I

read... is that something I should have done?

My other concern is his very large tonsils. Elias had tubes in last year but

recently his breathing has become even louder than it used to be, and I notice

him pausing and gasping in his sleep. I will schedule another appointment with

his ENT, but is there something more I should be telling the doctor, specific to

MDS?

Thanks so much for your input... it is a relief to be part of this group...

~melissa~

[Guest guest]

my son does not have MDS however when i worried about breathing i asked the pedi

to refer us to a pulmanary doctor he ordered a sleep study !

To: MosaicDS

From: the4hellards@...

Date: Wed, 29 Dec 2010 17:18:48 -0800

Subject: Re: Not sure where to start...

Welcome!

This DS health guidelines should help answer some of your questions.

http://imdsa.org/Resources/Documents/Information/HealthGuidelines.pdf

Hellard

IMDSA President

brandy@...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

http://www.imdsa.org

Subject: Not sure where to start...

To: MosaicDS

Date: Wednesday, December 29, 2010, 7:39 PM

Hi! My three year old son was diagnosed with MDS when he was 18 months old. It

seems that he is only slightly affected, but we went no further than the initial

blood test to be sure. He started speech therapy this year and I am wondering if

we should be doing more than the routine well-child checkups at the

pediatrician. The echo-cardiogram theme keeps coming up on different posts I

read... is that something I should have done?

My other concern is his very large tonsils. Elias had tubes in last year but

recently his breathing has become even louder than it used to be, and I notice

him pausing and gasping in his sleep. I will schedule another appointment with

his ENT, but is there something more I should be telling the doctor, specific to

MDS?

Thanks so much for your input... it is a relief to be part of this group...

~melissa~

[Guest guest]

Your child should be seen by your local Down Syndrome clinic if you have one. 

He should be getting hearing test ever 6 to 1 year because hearing loss if a big

thing for children with ds. I have been informed by our doctor at the Down

syndrome clinic that children with ds can have hearing loss for no apparent

reason and that is why it so important.  Yes he should have a check up by a

cardiologist.  Some of our children have defects that require surgery or just

future watching.  My daughter had a patent foreman ovale that did not close

yet

so they are giving it until she is 5 before we discuss surgery.   He should

also

have his thyroid tested yearly.  At age 3 he should have a cervical xray to

check the spaces in his neck.  Some children have sleep apnea test done but I

have opted not to do this because they said they would not do anything until my

daughter is older anyway. If your child is having that much trouble I would

mention it to the ENT that some of our children do have sleep apnea.   I also

insist on a cbc with dif yearly so I can look at my daughters white count.  You

child should also have his vision checked because many of our child have vision

problems.  My daughter has to see and eye doctor every 4 months and has had to

do this since she was 4 months old. 

My daughter appears to have only minor problems at this point but she would have

been in danger if I had not have had the things check that should have been. 

Beside her eyes and heart she also has larger spaces in her cervical portion of

her vertebrae and can not tumble or have her neck jerked around because of

paralysis.    I hope this helped answer some of your questions. 

Sue

Isabella mds and triple x 4 years old. 

________________________________

To: MosaicDS

Sent: Wed, December 29, 2010 8:18:48 PM

Subject: Re: Not sure where to start...

 

Welcome!

This DS health guidelines should help answer some of your questions. 

http://imdsa.org/Resources/Documents/Information/HealthGuidelines.pdf

Hellard

IMDSA President

brandy@...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

International Mosaic Down Syndrome Association

PH:

Toll Free: 1-888-MDS-LINK

http://www.imdsa.org

Subject: Not sure where to start...

To: MosaicDS

Date: Wednesday, December 29, 2010, 7:39 PM

 

Hi! My three year old son was diagnosed with MDS when he was 18 months old. It

seems that he is only slightly affected, but we went no further than the initial

blood test to be sure. He started speech therapy this year and I am wondering if

we should be doing more than the routine well-child checkups at the

pediatrician. The echo-cardiogram theme keeps coming up on different posts I

read... is that something I should have done?

My other concern is his very large tonsils. Elias had tubes in last year but

recently his breathing has become even louder than it used to be, and I notice

him pausing and gasping in his sleep. I will schedule another appointment with

his ENT, but is there something more I should be telling the doctor, specific to

MDS?

Thanks so much for your input... it is a relief to be part of this group...

~melissa~

[Guest guest]

A hearing test, a speech evaluation , an occupational therapy evaluation and a

physical therapy evaluation.

> >

> > Get as many appointments,as many tests and ask as many questions as possible

> >

> >

> >

> >

> > ________________________________

> > From: MFraker06 <mfraker06@>

> > To: MosaicDS

> > Sent: Wed, December 29, 2010 6:39:28 PM

> > Subject: Not sure where to start...

> >

> >  

> > Hi! My three year old son was diagnosed with MDS when he was 18 months old.

It

> > seems that he is only slightly affected, but we went no further than the

initial

> > blood test to be sure. He started speech therapy this year and I am

wondering if

> > we should be doing more than the routine well-child checkups at the

> > pediatrician. The echo-cardiogram theme keeps coming up on different posts I

> > read... is that something I should have done?

> >

> > My other concern is his very large tonsils. Elias had tubes in last year but

> > recently his breathing has become even louder than it used to be, and I

notice

> > him pausing and gasping in his sleep. I will schedule another appointment

with

> > his ENT, but is there something more I should be telling the doctor,

specific to

> > MDS?

> >

> > Thanks so much for your input... it is a relief to be part of this group...

> > ~melissa~

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

P.S. I forgot to mention a cardiologist; 50% of children with Ds have a heart

defect. This is less common in MDS, though, I think. My son was tested and has

no heart condition.

A neurological assessment or neuro-educational assessment may be beneficial.

> >

> > Get as many appointments,as many tests and ask as many questions as possible

> >

> >

> >

> >

> > ________________________________

> > From: MFraker06 <mfraker06@>

> > To: MosaicDS

> > Sent: Wed, December 29, 2010 6:39:28 PM

> > Subject: Not sure where to start...

> >

> >  

> > Hi! My three year old son was diagnosed with MDS when he was 18 months old.

It

> > seems that he is only slightly affected, but we went no further than the

initial

> > blood test to be sure. He started speech therapy this year and I am

wondering if

> > we should be doing more than the routine well-child checkups at the

> > pediatrician. The echo-cardiogram theme keeps coming up on different posts I

> > read... is that something I should have done?

> >

> > My other concern is his very large tonsils. Elias had tubes in last year but

> > recently his breathing has become even louder than it used to be, and I

notice

> > him pausing and gasping in his sleep. I will schedule another appointment

with

> > his ENT, but is there something more I should be telling the doctor,

specific to

> > MDS?

> >

> > Thanks so much for your input... it is a relief to be part of this group...

> > ~melissa~

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

,

I would start with scheduling an echocadiogram via a cadiologist (as they

seem to take the longest to get into) then I would schedule a good

opthomologist, and an ENT for hearing.

Darlene - Mom to (14) and (11)

>

>

> What tests should we start with?

>

>

> >

> > Get as many appointments,as many tests and ask as many questions as

> possible

> >

> >

> >

> >

> > ________________________________

> >

>

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

> > Sent: Wed, December 29, 2010 6:39:28 PM

> > Subject: Not sure where to start...

> >

> > Â

> > Hi! My three year old son was diagnosed with MDS when he was 18 months

> old. It

> > seems that he is only slightly affected, but we went no further than the

> initial

> > blood test to be sure. He started speech therapy this year and I am

> wondering if

> > we should be doing more than the routine well-child checkups at the

> > pediatrician. The echo-cardiogram theme keeps coming up on different

> posts I

> > read... is that something I should have done?

> >

> > My other concern is his very large tonsils. Elias had tubes in last year

> but

> > recently his breathing has become even louder than it used to be, and I

> notice

> > him pausing and gasping in his sleep. I will schedule another appointment

> with

> > his ENT, but is there something more I should be telling the doctor,

> specific to

> > MDS?

> >

> > Thanks so much for your input... it is a relief to be part of this

> group...

> > ~melissa~

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Thanks- we do have a good ENT but I will start looking for the cardiologist and

opthomologist!

Not sure where to start...

> >

> > Â

> > Hi! My three year old son was diagnosed with MDS when he was 18 months

> old. It

> > seems that he is only slightly affected, but we went no further than the

> initial

> > blood test to be sure. He started speech therapy this year and I am

> wondering if

> > we should be doing more than the routine well-child checkups at the

> > pediatrician. The echo-cardiogram theme keeps coming up on different

> posts I

> > read... is that something I should have done?

> >

> > My other concern is his very large tonsils. Elias had tubes in last year

> but

> > recently his breathing has become even louder than it used to be, and I

> notice

> > him pausing and gasping in his sleep. I will schedule another appointment

> with

> > his ENT, but is there something more I should be telling the doctor,

> specific to

> > MDS?

> >

> > Thanks so much for your input... it is a relief to be part of this

> group...

> > ~melissa~

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

You can get the medical checklist for Down Syndrome on the IMDS website or many

ds websites. I used to bring that checklist to the doctor since any one of the

risk factors for DS could apply to MDS. My daughter also had very large

tonsils, and we had those and the adnoids removed because the speech therapist

was concerned that it was interfering with her speech. Best thing we ever did

because she gets fewer colds and sinus infections and she sleeps better. She

used to snore like a lumberjack before that surgery, but she has been fine

since!

>

> Hi! My three year old son was diagnosed with MDS when he was 18 months old.

It seems that he is only slightly affected, but we went no further than the

initial blood test to be sure. He started speech therapy this year and I am

wondering if we should be doing more than the routine well-child checkups at the

pediatrician. The echo-cardiogram theme keeps coming up on different posts I

read... is that something I should have done?

> My other concern is his very large tonsils. Elias had tubes in last year but

recently his breathing has become even louder than it used to be, and I notice

him pausing and gasping in his sleep. I will schedule another appointment with

his ENT, but is there something more I should be telling the doctor, specific to

MDS?

> Thanks so much for your input... it is a relief to be part of this group...

> ~melissa~

>