Update

April 13, 2004

,

Sounds like Caden is doing GREAT! and I'm with you...at 10 mos theres a

range of develpment that 'normal'. My oldest son didnt really talk until he was

2

either (but when he did...uh oh.. he knew way too much!! lol)

I don't know of any connections between Tourette's and Down's... but I don't

think one little tick like leaning his head to the side would be a big

concern. What it did make me think of.. is in many down's have a weak cervical

spine (neck), and its USUALLY on the check list for doctors to check on with

Down's patients...

Maybe I, or someone in the group can find the link to that website that lists

all the things drs should be checking for Down's patients... its REALLY

extensive and very informative!!!

I'll dig around!

Angel

April 13, 2004

Hi All,

I have been MIA lately because we have finally been getting some decent weather

here in Minnesota! We have to enjoy it while we can.

Caden's surgery went well he did have 2 hernia's, but all is well now. He went

to the oncologist last week and his blood tests were normal-YEAH! Which means

the longer we go without re-occurence the less chances there are for a

re-occurence at all.

The school has been still coming out once a month to observe him. This last

time she said his speech was delayed because he doesn't say Ba Ba of Da Da and

because he will not do " So BIG " or wave Bye Bye. I really take what they say

with a grain of salt. My niece who is now 9 didn't talk until she was 2. I

feel that the guidelines are good to follow, but every child develops at their

own rate. If we didn't have the diagnosis of MDS, I don't think anyone would

question his development. Sometimes it just frustrates me. She also seemed

concerned about the fact that he shakes when he is excited or mad. Has anyone

heard of this being a problem? Another question for the group is last night

and I kept noticing that he kept tilting his head to the left--almost like

it was uncontrollable. Is terrets (sp) linked to MDS? I think he must of just

figured out how to do it and jsut kept doing it. He stopped after dinner was

over. Probably just us reading into his diagnosis.

I am really bummed I will not be able to come to the convention this year. We

are going to SD in May, Las Vegas in June and Colorado in July, I think my work

would tell me to take a hike if I asked for anymore time off!!

Hope all is well for everyone! Happy Spring!

- mom to Ella (3), Caden (10 mos.-MDS)

April 13, 2004

,

Great news on Caden's surgery and blood work! He is such a little trooper.

Tim sometimes just jumps up and down and shakes all over for no apparent reason!

I ask him why he does that and he says that he is excited.He also shakes when he

is angry. Now, I am not talking about a tremble in the hand, I am talking about

shaking his whole body vigrously. I think it is a way to get unexpressed energy

out.

We have seen a HUGE number of doctors over the years that all wanted to give him

a different diagnosis because they didn't understand the effects of MDS. One

wanted to lable him with tourette syndrome because he makes noises and movements

that seem involuntary(these are NOT involuntary...he knows what he is doing).

One wanted to label him with bipoar disorder, because they said he was " happy "

in the morning and later in the day he was " frustrated " . I told that doctor that

I was HAPPY before he called, but now I was very FRUSTRATED so I must have

Bipolar too! LOL Tim is the fartherest away from having bipolar! I have a son

who has bipolar, so I know what it is like! Then, I had a doctor, after 10

minutes of meeting Tim, decided that Tim had PDD (a form of autism). She began

to tell me that he had PDD, and that she was conducting a study that had a

numberous amount of other boys with PDD and she wanted him in the study. I told

her that my nephew has PDD, and Tim had NO signs of it and

I thought that it was really odd to have a NUMEROUS amount of boys in a study

that have PDD since it was a rare disorder. Then, she told me that I must have

made up MDS, because SHE had NEVER heard of it! LOL

Finally, I went to a psyciatrist for Tim's ADHD (a real dx that he DOES have). I

told the doctor that I didn't know what parts of his behavior were from MDS and

what parts were from ADHD. He told me to look at it as a whole and that all

behaviors were a part of the MDS. Tim has Tourette tendencies. Tim has autistic

tendencies. And, Tim has ADHD tendencies. These, for him, are all part of his

MDS.

Was Caden smiling or frowning when he was turning his head? How was he acting

when he was doing it? Maybe, he was just having fun! Perhaps, he had a cramp in

his neck or his ear hurt?

I am sorry you wont make it to the convention! I really wanted to meet you and

Caden.

Maybe next time!

Kristy

Hauschildt wrote: