Hello all,

We have 2 month old GGG triplets. Stephanie was diagnosed with Down syndrome at birth. Luckily, she hasn't shown any signs of related health problems as of yet, the Echo she had at discharge came back normal. She's been eating good up until the past week or so. She has a good suck and we haven't really had any feeding problems. Over tha past week though she hasn't been eating the same and some days doesn't even eat her minimum requirement. She's been gaining well as of our last pedi visit on 6/27.

Im not sure if it's a phase she is going through, or if it's the bottle\nipple that she doesnt like or if it is related to her DS. We've tried just about every bottle out there, it's hit or miss though. She will eat if we use the nipples that they gave us from the hospital (disposable ones) but I know we cant use those forever. At some point she will need a faster flow so I want to find something that works now. Sometimes she will eat well with the Avent or Evenflo but not always.

Does anyone have any experience with this? What about DS in general? Any advice or stories you want to share are appreciated!

Thanks!
Sharon

Congratulations on your new babies! My three and a half year old, Parys, also has D.S. She was diaginosed at birth. My little one has had major reflux from the beginning. We tried about every formula out there. Finally at about 18 months I put her on a gluten free, dairy free diet, and she is a different child. She is still small. Just hit 20 lbs at her last check up. I also had issues with bottles, just like you. We ended up using the Avent. i did have to use the faster flow nipples, because she had such a week suck. Parys has always been a bit slower than typical kids but that is to be expected. She just started walking after my one year old learned to walk I guess she didnt want to be left behind. She talks when she wants to. She is very good at telling the other kids NO. She is stubbon to no end, but it gives her personality. you will have so much fun with your little one. Good luck!

Jessika mom of
identical GGG born 11.21.01
girl 7yrs
girl 6yrs
girl 5yrs
girl 3yrs
boy 9months

Hi Sharon!
Congratulations! You are in for a wonderful and rewarding life with your dd!

We also found out that dd (one of our triplets) had DS at birth and were quite shocked. She is now 11yo and has been an absolute joy! She is soooo easy-going and complacent, not to mention hilarious!

Anyway, to answer your questions:
My dd would go through phases of eating/drinking different amounts. It stressed the snot out of me but she was always gaining weight so her ped wasn't concerned. She STILL has those phases. One week she eats like a horse and other weeks she just picks. She also has some sensory aversions to certain foods. That can be a DS thing.

We also tried several different nipples before finding the right one for her. I cannot remember what it was as it was 11 years ago, but keep on trying until you find the right one for her.

You probably have been hooked up with Early Intervention already, but if not do it ASAP. My dd benefited greatly with the therapy they provided.

If you have any more questions, I would be more than happy to help you out.

Again, congrats! Our dd is an absolute joy and I cannot imagine life without her!

Thanks for your reply. She did start eating better the past couple days so I am relieved about that.

We are in Early Intervention, we haven't had any therapy sessions yet but are scheduled for a couple appts. next month. We have been trying to get her to do tummy time a few times a day if possible to help. It's just scary cause you just dont know what to expect with the DS. They say they will develop just as other kids do but of course it will take longer. I guess I just get worried, it's so scary right now. In the beginning you get so much thrown at you and we just want to be sure we do the right things to help her as much as possible. It's hard to know what to do when we haven't had experience with this before.

I also worry about how her sisters will interact with her. I hope when she sees them doing things it will encourage her to try them as well. I just hope as they get older they are patient with her if she can't always keep up with them. How did your's react?

I do feel so lucky to have her, she is a doll and I know we will have so much joy with her in our lives.

Sorry that it took me such a long time to respond, but summertime with 4 kids is hectic,lol!
The unknown is intimidating to us. We are living with the philosophy of one-day-at-a-time and for the most part don't stress about her future too much.
As far as the interaction between our dd and her sibs: They have a very special bond with each other. The interact like typical siblings, fighting and all,lol! They are very protective of her however, which is very precious and heartwarming to witness.

I don't have a child with DS but I did have two with difficulty feeding. They had a horrible suck and would dribble a lot. They got speach therapy which actually just worked on their tongue movements and feeding when they were babies.

With the diagnosis of DS, this should open the doors for you to get Early Intervention. I am in NY and that is what it is called, I don't know what it is called in other states. Ask your pediatrician and get the ball rolling for services for her ASAP. My daughter was born with multiple limb contractures, called Arthrogryposis, and she started EI in the NICU at 5 days old with OT and PT. As you probably researched and know already, DS children's tongues are a little bigger, so maybe she is having difficulty with her suck or getting tired with all the muscles that are used.

Congratulations on your babies. Having a special needs child makes it even more of a challenge, but also more of an achievement and enjoyment.

Laurel - mother to Jimmy 11,
Danielle (B-Symes amputee),Nicole (ADHD), and Shannon (Dyslexic) born 31 weeks and now 9 years old

Hi Sharon!

Just saw this (haven't been on much the past week or two.) My Anna has D.S. also diagnosed at birth. She had a hard time and came home on ng feeds at 3 mos old. We quickly stopped that and kept the hospital bottles for a long time. Even though they were disposable nipples we kept them a long time. They also gave us tons of them. Anna stayed on them a long time. We finally were able to switch to a slow flow nipple. She didn't go to fast flow for a long time.

Of course now, at almost 5 (where did the time go???) she is on a sippy cup.

Anna still doesn't eat much. Every once in a while she'll eat and it is noticed. A few weeks ago they sent home a note from school that she actually ATE her lunch (1/2 sandwich & banana!) It was a big day! That lasted a few days and then back to normal. She's small (28 1/2 lbs, 38 " tall) for her age but the doctors feel she is perfect, as do I!

She also doesn't have any real medical problems. She does have tubes in her ears (on 3rd set) and has had 3 cavities filled (under sedation) but is generally quite healthy. And she is tons of fun!!

What I can say is that D.S. is something that falls into the background. I just don't think of Anna as my daughter with D.S., I just think of her as my daughter! Congratulations on your triplets!

Jane
Anna/Emma/John/^James^ (9/24/03-9/29/03) 26 wkers
In memory of my beloved Emma 9/24/03 - 1/19/07
www.snanimals.com
www.jlperillo.etsy.com (my etsy shop)
http://snanimals.blogspot.com (my blog)

My nephew has DS and my sister-in-law used the hospital nipples for a long time for the same reason. You can buy them by the case from the Ross website (if they are the similac ones she had). The hospital nipples are actually very fast flow and that is why your little one wants them; because it is easier to suck. She eventually got him to take NUBY nipples (baby controls flow)and had successfully moved him through the NUBY products and he is now taking all liquids through NUBY cups at 2 years. She now swears by NUBY products and has a 10 month old who is almost weaned to cup already. Hope this helps.

34 weeks - July 24, 2008
Abigail Rose - 4.8 lbs - 0 NICU
Brianna Renee' - 4.1 lbs - 9 NICU
Cecelia May - 2.10 lbs (IUGR) - 22 NICU

Hi Sharon,

Congratulations on your three beauties. My DD has Down syndrome and was diagnosed at birth as well. She did not eat well in the beginning, either. She was sleeping all the time and wouldn't wake up to eat. I would say, if Stephanie is gaining, she should be okay, as long as she continues to gain. I actually used the beginning nipples for all three of mine for the entire time they were on the bottle (2 years, sorry to say). I would try to move up to a bigger flow, but they would end up leaking all over. As long as the kids finished their bottles (Which my DD always ended up doing), what did it matter. And they started solids at 5 months, including Malena (my dd). She was drinking out of a staw by 9 months (before my boys, btw). Oh, and btw, I need to cut Malena off at mealtime most of the time.

If you'd like to see her, there's a spotlight page of her on our local Down syndrome association website (I'm on the board, so I got the in

http://dsarcw.org/ourkids.htm

If you go to our links page, you will find more resources:

http://dsarcw.org/links.htm

and to those I would add the following:

http://www.ds-health.com/

http://www.altonweb.com/cs/downsyndrome/index.htm?page=magicwin97.html


are just a couple resources on the web. Let me know if you'd like more.


Maryann
Mommy to
Malena, Joshua, and Jacob
born 12/20/03 @ 34w5d

Custom Cards
www.cdicards.com

Visit us at
www.kwiat3.blogspot.com

Hi there -
our daughter has a chromosome disorder, but not DS, though they thought she might in the NICU. She was in the NICU for 7 weeks, 4 weeks longer than her bro and sis for feeding difficulties. She came home on bottle feeds, but we just had to really pace her and be very careful. They also had us try the Haberman bottle with her, it is a special needs bottle and has a special flow nipple, but emily seemed to like the dr. brown bottles just fine.

(she is 100% gtube fed now, she stopped eating suddenly at 7 months old and the docs are not sure why)

Good luck with everything!

Aimee
Mommy to Drew 12/13/03
and
Carter, Brenna, & Emily
8/18/07 @ 33w4d