Joining IMDSA

[Guest guest]

Hi, It's Tanner. I hate to be a pest, but I joined in November and I

have not received my parent packet in the mail. I also submitted Joe's story by

email to have it posted in the mosaic down syndrome site in November and it is

not posted. I was just wondering if anyone knew if it was received or when the

site will be updated again.

Thanks!

Re: newer to the group

We have to continually remind our daughter that she does not have to eat

EVERYTHING on her plate. She,too, was very

thin(failure to thrive) until she was about 4...then the weight just piled on!

She is now getting taller and

thinning out, but because she does not get much exercise(she has mild cerebral

palsy and has an uneven gait) because

she cannot run very fast or ride a bike, she has not lost the weight. I am

hoping when the weather finally gets

warm, she will play outside on her trampoline with her brother and ride her

scooter more. Oh, by the way, I am new

to this group. Thanks.

Ree-mom to Niki (MDS)-age 8 and Kodi- age 11

kristy colvin wrote:

> Carol,

> Tim also has always had trouble knowing when to stop

> eating. He just doesn't know when he is full! He will

> eat untill he makes himself sick. We are always having

> to monitor his intake and remind him what is enough.

> He doesn't have a weight problem, but a few years ago

> he was getting chunky.

> Does anyone else in the group feel the same way about

> their children? Do they not know when they are full?

> Kristy

>

> --- ckusek@... wrote:

>

> ---------------------------------

> I have only belong t this group for a couple weeks.

> Even through my son

> is 20 years of age, I still need the encouragement and

> support of this

> group. I had a couple parents with young adults with

> mds email me. I

> have discover we are all dealing with some of the same

> issues - I am not

> all alone in this big world. Their emails have given

> me a little ray of

> hope. Heidi's email could have very well come from my

> son Luke -

> her thoughts are very much like his. Thank you Heidi

> for expressing

> yourself so well and honestly.

> Barb, just a precaution, my son, Luke , the first

> four-five years of

> his life he was very thin and then in a matter of a

> few weeks he packed

> on all this weight and then really had a weight

> problem. He just could

> not stop eating. When he was about 11 years old he

> went to Boy Scout

> camp for a week and decided he was not going to eat.

> He lost weight,

> and the rest of the summer he was very careful of what

> he ate. Today he

> knows he has to monitor his food intake. He has learn

> what a serving is

> and what is healthy. His brain does not tell him when

> he is full and he

> knows this.

> It really sounds like you have a great doctor working

> with Jonas. Keep

> sharing this information with all of us.

> Thanks!

> Carol K Kusek momx5, Luke ,mds age 20

>

>