Need advice

July 23, 2002

Help!

Its hard to believe that is going to be one at the

end of this week. I've been fighting back the tears,

not only because my baby is growing up, but also

because of a plan my husband and I had come up with

when he was born.

As you guys know - we found out about 's MDS thru

amnio. When he was born the doctors second guessed the

results because he had no features. We opted only to

tell a selected few family members, and didnt tell his

brother or sisters. We wanted them to get to know

first - open their hearts to him without the barrier

that there was something wrong with him. At ages 11,12

and 5 we thought they wouldnt be able to understand the

MDS and since he had no features we could take one

month at a time. Our plan was to open up about the MDS

at his first birthday- then we would have some

explaining to do why he wasnt walking or doing things

other babies are doing at his age. We socialize with 5

or 6 families with babies the same age- our next door

neighbor has a daughter born a day after

Well, has continued to suprise us month after

month with his accomplishments. The sitting, crawling

were great - then the walking by 8 months! He's now

climbing stairs, running and can get off the couch

correctly(turns himself around and slides), he just

started playing catch - he can throw and catch the ball

consistently. He feeds himself- sometimes with the

fork/spoon but mostly with his hands. When you ask for

him to get something he knows what you are looking for

and will bring it to you. He has a few words, most are

unclear but we know what they are. He talks all the

time in that " Chinise-like " babble. Instead of making

up excuses for why isnt doing the things the

little girl next door is - we have found our self in a

different position of having to make excuses why

so far ahead of the other babies.

But here we are at 1 year and while we planned to open

up to everyone about 's MDS - we are now not sure

if this is the right thing to do for 's sake. He

has no delays - they are removing him from Early

Intervention - he's doing great. There is a chance the

MDS will never manifest itself - or show. Do we want

to label when noone would ever be able to tell

otherwise? Kids can be so cruel - whether he has delays

in the future or not - if it gets out about the MDS the

kids will us it against him. I dont know - I'm so

torn on this one because there is another part of me

that feels like I'm an imposter - that I'm hiding

something. When people comment about how advance

is for his age I have to bite my tongue not to sing his

praise about the diagnosis of MDS...etc etc.

I have found this groups advise very comforting and

valuable, as you all know exactly what I'm experiencing

as you live a part of my live everyday-

Thanks ahead for the advise -

Ellen and

November 12, 2003

I remember all too well, feeling soooo overwhelmed, with all the doctors,

surgeons, etc... I promise you, it won't be this busy his whole life!!!

But, my feeling would be to have the test... besides the barium, which may

not taste so great, it sounds like a non invasive test, just imaging or xrays of

some kind, and I think it would put you and your husbands minds at ease if

you knew everything was ok each time he spit up!! And on the

other hand, if God forbid there was a blockage, well at least it could be

resolved immediately!

Thoughts and prayers are with you,

Keep us posted!

Angel

Mom to 10 MDS/Hirschsprung's Disease (a bowel obstruction!!)

November 12, 2003

Dear ,

I can only begin to imagine how emotionally drained you are at this point.

For heaven's sake, I let Jonas' not eating real food get me all worked up

sometimes, so I think you have good cause for feeling worn out with it all. I

really encourage you to have the test done. It is an upper GI series or a barium

swallow, and not a huge big deal to do, but if he would have a problem and you

did not have the test done you would really regret not doing it. The throwing up

does not seem normal to me. Jonas had the reflux thing as an infant and we had

to thicken all of his feedings with cereal from the time he was a month old to

combat this and keep him from throwing up everything he ate. It seemed really

silly that he was choking on thin formula and yet he could get the thick junk

down with no problem. I was told that this was common in really young,

especially premature infants, but he did grow out of it before his first

birthday. It is not impossible that this is also what is going on with Caden,

just that it would not follow the " normal expectations " for GERD to have it show

up for the first time after 5 months of not having it. Is he on any meds that

could be making him sick all of a sudden? I would follow through with the

doctor's recommendations and then let your mind rest about it. That is my

conservative opinion anyway .

Blessings,

Barb Martz

Mom to Jonas 3 (MDS) & 8

Need Advice

Hi All!

Hope everyone is doing well. We are hanging in there, but a problem has

arose and I am probably being overly worried due to loosing my mom recently.

Here goes and I would appreciate any advice, or experiences any of you have

had...

Caden is now 5 1/2 months old and recently he has been spitting up a ton.

It has gotten to the point where we don't even want him to move after he has

eaten. He will even do it 2 hours after he has eaten. Now I know that

babies spit up--Ella did it all the time, but my husband has selective

memory and says she never did. So he finally talked me in to calling the

dr. yesterday and we brought him in. It has progressively gotten worse over

the last week or so. He is growing fine, he is not fussy and he sleeps from

6:30 pm to 6:30 am. So I thought well maybe he has a virus or an ear

infection, so I better check it out. The dr. we saw yesterday did not find

anything wrong with him, so we talked about Acid Reflux and she said

generally babies start that earlier on and it progressively gets better. We

also talked about the fact that some babies just spit up a lot and

eventually he would out grow it--which is what I was leaning to. She didn't

feel it had anything to do with his leukemia--which that never came to my

mind because he just saw his oncologist on 10/31 and everything was A.O.K.

there. She mentioned a test that they could do to see how his GI was

working, but she didn't feel that it was necessary especially since he has

already had 100s of tests and he is still growing on track. But she still

wanted to run it by our regular pediatrician. We left as no big deal hang

in there he should grow out of it soon. Then I receive a call today from

her and my regular pediatrician recommends we have this test--I forgot what

it is called, but Caden has to drink some barium and then they will take

pictures as he drinks it. So I asked her what they would be looking for and

she said an obstruction of some kind. I said it was ok to set up the test,

but I am really uneasy about it all. I am just not sure that it is

necessary and I feel with his MDS and history of Leukemia that he is going

to go through this for the rest of his life--having tests run for every

little thing. I can almost bet that if this would have been Ella they would

of just let it go as she is a baby who spits up and she will grow out of it.

I totally trust my dr. and I want to know if it is something more, I am just

emotionally worn out from worrying on a daily basis!!!!! Anyway if any of

you have any advice--good or bad please pass it along!!

Thank you!

mom to Caden-MDS 5 mos and Ella 2

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November 12, 2003

,

Darlene and I had a similar experience with . When she was very young,

she seemed to spit up more than we thought was normal. We too discussed this

with our pediatrician, who attributed it to reflux, likely due to her low tone.

She did not believe it was a problem that warranted additional tests. As

grew older, the spit ups after meals went away, only to be replaced by vomiting,

usually after she had been put to bed (once a week or so). Sometimes the

problems seemed to go away for several weeks, then would return. Finally, when

she was 3, we pushed the issue with a new pediatrician, who sent us to see a GI

specialist. The GI specialist sent us to get the GI series (barium, etc.) done,

expecting to eliminate concern over any blockages, etc. The GI series revealed

that she had a significant blockage in her large intestine ( " duodenal webbing " )

that allowed very little to pass through. The doctors were amazed that she had

not shown more severe symptoms than she had. They also said that she had

probably had a lot of discomfort from this her whole life. We were also

fortunate that she had not swallowed anything that plugged what little opening

there was. Almost immediately, she was scheduled for surgery at Children's

Hospital of Philadelphia, where they basically created a " bypass " for that part

of her duodenum. That was last May, and she has thrived since.

We are very fortunate that 's problem was finally detected and addressed.

I regret that we did not discover the real problem sooner.

This was our experience, at it certainly isn't a common problem. You should not

get unduly alarmed, but if you are concerned that there may be an underlying

issue causing Caden to spit " up a ton " , then I recommend you follow the doctors

advice. Hopefully, it will confirm that there are no blockages or physiological

issues to be concerned with and you can have better peace of mind. Let us know

how things go. We're wishing Caden the best.

Benoit