DownSyn Forum

The website is www.321downstreet.com
They have magnets, t shirts, note cards.
I believe the magnets are about 4$.
Marg

Hi Heather, I am an infrequent poster but my son who is 9 has celiac disease.
The biopsy is the definitive test. If the gene test is negative you cannot have celiac disease. If it is positive than i ...

I forgot, I never had checked into the tax deduction but I asked my brother-in-law who is an accountant. He said its questionable. There is a tax law that says that "special diets that merely rep ...

Hi,
We have found the bread mixes make a nicer bread but
there isn't anywhere around here that bakes it fresh.
I bought a Cuisinart bread maker that has a gluten free setting and that makes a big d ...

Todd's blood work showed positive TTG (IGA), Positive Endomysial antibody and positive Gliadin antibody.
He was 8 when he was tested.None of the levels were
extremely high.
I'm almost certain that ...

Hi there, Celiac is an auto-immune disorder.
As I remember Todd had what looked like lesions and the
Dr. said that was indicative of the damage to the intestine
from the celiac.
The biopsy shou ...

Well that is pretty cool.

Katie,
Looks like you are off and running. You'll do fine.
Wellshire Farms has a Chicken nugget through their
"Wellshire Kids" line. I have found them in Whole Foods and occasionally in ...

Todd has adjusted really well to the diet. He has "cheated" a couple of times and once you are gluten free for a while the reaction is most unpleasant. I find him healthier and easier to g ...

Katie,
My son Todd (9) was diagnosed with celiac about 10 months ago.
It really isn't as bad as I thought it would be. We have adjusted well. If Matt's biopsy comes back positive and I can be of any ...

Tracy,
My son Todd has celiac disease. He did not have a lot of symptoms, just some constipation and the bloated belly. We had him tested because we know other families
with kids with DS who have c ...

I called the Marriott and asked for a room with the NDSC conference and didn't have any problem. Maybe they have a certain number of rooms blocked off for conference attendees.
Good Luck
Marg

Maybe Fifth's disease. It is a viral rash. Sometimes referred to as a "slapped cheek" appearance because it starts out with bright red cheeks. It doesn't cause anything serious and goes awa ...

Leah,
My 8 year old, Todd was diagnosed with Celiac Disease in June of this year. I thought it would be terrible, but the transition has not been bad at all. It has been a learning experience for us. ...

Ditto.
Thanks Tom. I'm one of those who don't post often but stop by to check in regularly. This is a great site. I have passed it on to other parents because I enjoy it so much.

Hi,
Todd has taken captopril and lasix without those kinds of side=effects. He never took them together though. They dropped the lasix when he was about three and started captopril. He switched fr ...

Sorry, forgot to put in weight, Just under 8 lbs. (He is 8 now by the way)

Todd was 8 weeks old, AV Canal

Hi,
You brought back a funny memory for me. When Todd had one of his early assesments they gave him blocks to stack. He had no idea what to do with them. Well for the next year we stacked blocks lik ...

That was so well done.
You looked great and Sarah is just darling.
The research physician, Brian has run the siblings conferences for NDSC for several years and did the NDSS one last summer. My 15 y ...

Greensboro, Maryland

If I remember correctly and if this is the same procedure; VCUG stands for voiding cystourethrogram and basically is checking to see if the bladder empties completely and that urine does not reflux ba ...

I'll be there. My 14 year old daughter is going to the siblings conference. Any other sibs attending? This is our first NDSS conference. We've been to NDSC several times.
Marg

Well said emdad. I like the way you look at things.
Our kids have a much brighter future than those born as recently as 20 years ago because of people who were willing to look for better ways to educ ...

My husband and I will be there as will our daughter who will be attending the siblings conference for the second year. This will be the 4th NDSC conference for us and I always find them uplifting. It ...

Just wanted to give you another perspective. Being around the other kids in daycare can be a great boost. I really believe the positive effects of daycare for Todd were tremendous. (He's 6 now, and ...

Vonda,
That is so cool. I've always thought that song was perfect for Todd. I sing it to him at bedtime. (as long as nobody
else can hear me, lol). Thanks for posting that so I know I'm not the onl ...

Thanks for sharing that Tom. I too will now have a different opinion of Geraldo.
Marg

Barbara,
There was a family that posted often about two years ago who were in a similar situation. The Dad went through a terrible time from their prenatal diagnosis through their little boy's AV can ...

It gets easier each day. Give yourself time. Its perfectly normal to feel the way you do now. Todd is 5, one of the older kids for this site. He brings lots of love and joy to everyone around him. He ...

Amy,
Dr. Kumin is a big proponent of early speech intervention.
They do a lot of oral motor therapy early on. That is one of the things I think we really missed when Todd was very young since we liv ...

I think I found the problem with the link. There is a period at the end of the address that should not go with the website address. Try it without http://www.loyola.edu/speechpath
It should work then ...

This was sent to me by our local parents advocacy agency and I thought I would pass it along:

Dr. Libby Kumin has undertaken a study of the factors that help make children's speech more understanda ...

Shannon,
So good to hear from you guys. I think of you so often. Congratulations!!!!! I can't believe Joey is a year old already.
Marg

Vicki,
First, congratulations!
Everyone feels the way you do for a while. Give yourself time to grieve. You have experienced a loss. It is perfectly normal and acceptable to feel bad about it. Now ...

Hi Cammy,
I don't think you're being overprotective. I think the most important thing you need is a doctor that you can communicate with. It is hard sometimes to find a Dr. that has a lot of backgrou ...

I am so glad to hear that everything is Ok with Joey. The suspense has been killing me too. I've been so worried. I know this is a very busy time for Jef and Shannon so thanks Emdad and Ruth for updat ...

Jef,
So glad to hear that Joey is home. Thanks for keeping us
up to date. Time will go so fast. Todd turned 4 this week
and it is hard to remember those first few months. His surgery seems so long ...

Jef,
I'm sorry Joey is having such a rough time, but it sure is good to hear you sounding a little better. We think of you and Shannon and Joey often. Thanks for keeping us informed.
Marg

Hi Kate's Mom,
First, don't be so hard on yourself. Many of us have those feelings at the beginning. I too had a c-section and Todd was sent to another hospital because he also had A/V canal defect a ...