a new member looking to help her recently diagnosed mds son, Jake

[Guest guest]

Hi everyone! My name is Platko and I just joined this group last

week!A few weeks ago,after a good year or so of having doubts, we

received our son's diagnosis of mds. Jake went through a panel of 2

blood tests and a skin biopsy. To our dismay, nobody in the medical

field, including pediatric geneticists and counselors at the world

renowned cleveland clinic, could help give us support and info. on

this uncommon condition. Thankfully, I have found this support group

and I am hopeful that you will help me. The people in this group seem

well-connected and very supportive and helpful to one another (I have

been reading messages posted-this is my first one I am posting..)

My son, Jake, has " slipped through the cracks " for over 2 years!

He has delays in speech, physical and fine motor skills. He is 29

months old now.His speech is quite limited and he has problems

feeding himself with utensils. He also has trouble walking up/down

stairs independently.

The hardest part about this diagnosis, as I'm sure you can all

relate to, is the not knowing....I have so many questions, some of

which you can help me with, as you have personally found out for

yourselves with your own children or yourself, if you have MDS. I am

seeking people who are willing to help me by giving me any info.,

encouragement, hope, resources, inspiration,etc. The more knowledge I

gain, the more peace of mind I will have. It is frustrating that none

of my son's therapists or doctors can help fill this void. Actually,

I think I know more about mds than they do! I want to find people in

my same shoes...as you all seem to be in this egroup.

I look forward to some repies and would then be happy to go into

more specific questions and details. I welcome all feedback with an

open mind and heart....thanks,

[Guest guest]

Hi ,

Welcome to the group! Every child with MDs is different. Just like every

child, even if they do not have special needs. I have four children, and my

youngest is who has MDs. He turned three on November 30. I treat

him just like my other children. On Friday he went down the stairs in our

home for the first time! When he got to the landing, my mom and I said

yeah! ! And he said, I do that, and went down the second flight of

stairs, and when he got to the bottom he said I did it! We are so proud of

him, and it has been just recently that he has put these new words together.

Every time he walks, or climbs onto a chair or bed, he says, I do that.

My point that I am making is....Your son will get there is his own time.

never had OT or Education services. He has had speech for a year

now. IEP was concerned back in Oct. that he was only eating custard and

oatmeal. In the past month he loves to eat, pb & j, pancakes, waffles, and

French toast. I was always

focusing on his walking, and new that in his own time everything else would

come to him and fall into place, because......I have always believed that

all of the promises of tomorrow are his....... Despite what everyone else

thinks.

mom to 10, 8, 5 and 3 MDs

a new member looking to help her recently diagnosed mds son,

Jake

> Hi everyone! My name is Platko and I just joined this group last

> week!A few weeks ago,after a good year or so of having doubts, we

> received our son's diagnosis of mds. Jake went through a panel of 2

> blood tests and a skin biopsy. To our dismay, nobody in the medical

> field, including pediatric geneticists and counselors at the world

> renowned cleveland clinic, could help give us support and info. on

> this uncommon condition. Thankfully, I have found this support group

> and I am hopeful that you will help me. The people in this group seem

> well-connected and very supportive and helpful to one another (I have

> been reading messages posted-this is my first one I am posting..)

> My son, Jake, has " slipped through the cracks " for over 2 years!

> He has delays in speech, physical and fine motor skills. He is 29

> months old now.His speech is quite limited and he has problems

> feeding himself with utensils. He also has trouble walking up/down

> stairs independently.

> The hardest part about this diagnosis, as I'm sure you can all

> relate to, is the not knowing....I have so many questions, some of

> which you can help me with, as you have personally found out for

> yourselves with your own children or yourself, if you have MDS. I am

> seeking people who are willing to help me by giving me any info.,

> encouragement, hope, resources, inspiration,etc. The more knowledge I

> gain, the more peace of mind I will have. It is frustrating that none

> of my son's therapists or doctors can help fill this void. Actually,

> I think I know more about mds than they do! I want to find people in

> my same shoes...as you all seem to be in this egroup.

> I look forward to some repies and would then be happy to go into

> more specific questions and details. I welcome all feedback with an

> open mind and heart....thanks,

>

>

>

>

>

>

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

> *************************************************

> Contact IMDSA Today at:

> IMDSA~PO Box 1052~lin,TX~77856~USA~1-

> *************************************************

>

[Guest guest]

,

WELCOME! Glad you found us!!! Look forward to getting to know you and Jake

better!!!

~~Angel~~

Mom to

13, Mosaic Down Syndrome/Hirschsprung's Disease

Lance 17, Tyler 14, 11

Jaeda 9 and Shayne 3

[Guest guest]

> wrote:

> " I think I know more about mds than they do! "

>

Yep. Welcome to the group of experts; some of us are more expert or less

expert than others about one aspect or another, but we all are experts experts

in caring about you and what you are experiencing! You and Jake will be

teaching many therapists and doctors, and most of them will appreciate it.

Judie Hockel, mom to Christi, 27 and her 5 older siblings