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TheNextWest
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DS moms: question about child's size
TheNextWest
member
We are in Eastern Europe right now adopting our baby girl with DS.
(So please forgive me if any of this comes out wrong- we are exhausted and overwhelmed by this whole process.)
For 7 months they have prepared us to meet a "petite" baby. EVERYONE has been reminding us that between the DS and orphanage life, she will be much smaller than expected.
She turned 11 mos on Monday and we met her for the first time yesterday.
She is HUGE. Seriously, huge. We were shocked (it didn't help that the only picture we had of her, she had a ton of black hair and now has very short BLONDE hair!), but we just cannot get over how big she is. We brought mostly 6-9 mo clothes and we will be lucky to squeeze her into a 12 mo. She weighs 22 lbs!
I've never met/seen a child with DS who is ABOVE average in size, even for a typical child. Apparently, they feed her all kinds of veggies, cheeses, etc. Could that be making a difference? Something just feels... off. I'm kind of worried we're/they're missing something that's effecting her size.
Is this normal?? Maybe I'm just not experienced enough? We will obviously have her checked by our pediatrician when we get home, but I'm just stunned at how big she is. I don't want to sound ungrateful for her health AT ALL!! We have just spent 7 months preparing for a little (brunette) baby and are a little thrown off by the contrast!
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Re: DS moms: question about child's size
Post this on babycenter and you'll get a great answer, I'm sure!! Its a chat room only for parents with kids who have DS.... Great resource!!! Here's the link....
https://community.babycenter.com/groups/a315/down_syndrome
First of all, congrats on welcoming a new baby to your family! I can only imagine how excited you must be to finally be meeting your daughter! I clicked through your blog real quick to see your daughter's pictures--you have such a beautiful family... Our family grew through adoption last year and we were very surprised to learn that DD had many many more developmental and serious medical needs than were ever told to us. We would have adopted her either way so it was really frustrating to not have the knowledge ahead of time to get her the help she needed. I can understand being in that place where you're searching for ANY clue that might help you figure something out.
Our DD does not have Down Syndrome, but I've taught many students with it. I've always been told that heart conditions are common in DS and should cause trouble gaining weight. In my experience, however, I've never personally worked with a person (child or adult) with DS who was underweight. Quite the contrary, the majority of children and adults I've met or taught with DS have had serious struggles with weight (and not just because they were over-eating). I've typically found: www.ndss.org to be really helpful, but couldn't find anything there. But did find this article for you that specifically touches on weight issues in children with DS who have been institutionalized:
https://www.cdadc.com/ds/down-syndrome-obesity-weightloss-overweight.html
Here's a small excerpt, but they go on to discuss to discuss specific diabetes/thyroid/metabolism issues:
Institutionalization seems to be another underlying cause of obesity in children with Down's Syndrome, although the whys and wherefores aren't entirely clear.What we know is that kids with Down's Syndrome have a greater tendency towards obesity when they're in institutions than when they're raised at home.Theories on why include a lack of stimulation recieved in an institution, a lack of motivation to play on the part of the child, and an overall lifestyle that doesn't ask the child to do much on an everyday basis.Do you know how long you'll need to stay in the country before returning home? I'm assuming you're already connected with an international adoption clinic of some kind. We found that to be a tremendous help for us with DD. Our adoption was domestic, but so many of the needs that we were running into were very very similar and it was nice to have medical professionals who some-what understood the entirety of the situation.... Congrats again on your daughter!!!
Edited: for clarity
This is what I was thinking too.....
IL's adopted from Eastern Europe and they tried to pull a fast one on them as well, but not by switching the children. They got a very, very early referral along with a video before they traveled. A dev pedi reviewed it and dx'd the child with FAS. They decide to keep waiting and got a wonderful little girl.
I hope your case turns out for the best. Good Luck!
I'm probably not much help because my baby with DS isn't here yet!
But I've met a lot of parents whos' children with DS are definitely on track or bigger than the typical growth charts. It's not always true. Does she have a heart condition that needs to be repaired? We've been told the reason our daughter will be small is because of her heart, not because she has Down syndrome.
FWIW, looking at your adoption blog, your daughter's face looks the same as a little baby and as a big baby! Just her hair is different. I would be shocked if she was switched with another baby.
First of all...your kids are SO stinkin' cute!!!!!
Is it possible AG could have been on steroids for any reason? Steroids can make a person gain weight rapidly. Even just a recent breathing infection could require enough steroids to make her become that "puffy."
I checked out the photos and your daughter is just beautiful! Her body type seems similar to my daughter's. L is 11.5 months old and is 12m or 12-18m clothes. Her twin is much smaller and he is typically developing. How is her body proportioned? L has a long torso, fairly typical leg length but her arms and fingers are shorter. I believe the long torso and some amount of the shorter arms are familial. Also, my daughter was born with almost black hair and eyes and very dark skin. Everything has lightened up which I never thought would happen. Her hair is getting lighter and lighter, but I don't think it will ever go to blond like your daughter's.
What are you concerned about? Health issues? I would Definitely do the full round of health checks when you get home, the cardiologist, opthamologist, ent, bloodwork, etc.
Congratulations! She is such a cutie pie!! I can't offer you any advice b/c my daughter is 27 months and she is only 22 pounds and 32.5 in long. She wears a 12-18 months, so she is obviously on the small side.
I just wanted to say Congratulations and welcome to the "club"!! She is a beautiful little girl and looks so happy with you and your husband!!
I second the PP about thyroid issues. My brother has DS and is on a daily medication for his thyroid.
As far as the post about institutionalized children and obesity, in the case of a child with DS, they often don't have the "I feel full" sensation. They can easily overeat. A child who is institutionalized is most likely not being given the time and care as one who is in a home with parents and therefore it would make sense that they would be overweight. She may be given food and not monitered, then when it is gone a caretaker may think "Oh! She ate it all, she must still be hungry!"
Definitely have her checked out by the doctor, but you may find that once she is under your care and being watched while she is fed (watched more closely) you may see a change in her size.
This is interesting, thanks for sharing. Miles can eat and eat and eat sometimes and I wonder how he can not feel like he's going to explode.
Nora Judith 7/2/06 Miles Chauncey 4/20/09 born with Trisomy 21 - Down syndrome