Baby w down syndrome not gaining weight

[MommaToGo]

Hello,
My baby, six months old today, is not gaining enough weight.
After birth, he lost 9% of his birth weight. Soon after we got on the right track, and he was in the 90th percentile. At 4 months, he fell between 75-90th percentile. We have since moved and now at his 6 month he is just under 50th.
He eats expressed breastmilk and nutrimagen. The dr wants him to eat between 24-28 oz a day, we have been able to get to 21-24. She also said not to start solid food until he's.consistently taking 24 oz.

Any ideas on how to help him gain better? We already started waking him at night for an extra feeding.

[jtkkmom]

If you are able to take the time, one great way is just to take your baby to bed for 3 days. This gives your body lots of extra time which allows your body to produce more milk. It also allows your baby more opportunities to nurse which will then cue your body to make more milk.

Does your baby look too thin to you? Are you using a growth chart for typical babies? Babies with DS often don't grow at the same rate as typical babies so it is more important that he continues to grow at a steady rate. It would be surprising to me if a baby with DS stayed at 90% on a typical chart although it does occasionally happens

Hth
Laura

[AmandaT]

Its common for a BF baby to fall on the weight charts as they grow. My DD has gone from 85% (1 month) all the way down to 15% (6.5 months) and my pediatrician is not concerned. How much has your son actually gained? I would be more interested in the caloric content of your milk, instead of how much he is actually drinking. Would your doctor be willing to test that? 

Considering 25 oz is the average daily intake for EBF babies, I would not be concerned with 21-24 oz.

http://kellymom.com/bf/pumpingmoms/pumping/milkcalc/

[anj_rn]

three thoughts - Is the doc using the Downs growth chart or a standard growth chart? They are very different.

Also, you mentioned that the weight fell off, but where is the height?  My kids were born in the 90th percentile in weight, but the 50th in height, so even when they dropped down, they were even with their height.

You can ask for an consult with a pedi dietician, either a private one or one with EI.  They are better educated in nutrition than a physician.  They will have better advice.  We had a dietician via EI that came out monthly to check on us, monitor height & weight.  It was great, because she looked at the big picture (including the fact that both DS and I are small), and said do not worry.

[MommaToGo]

Originally Posted by AmandaT 
 How much has your son actually gained? I would be more interested in the caloric content of your milk, instead of how much he is actually drinking. Would your doctor be willing to test that? 

Considering 25 oz is the average daily intake for EBF babies, I would not be concerned with 21-24 oz.

http://kellymom.com/bf/pumpingmoms/pumping/milkcalc/

Sorry about the delay in responding, so busy once his appts started and we had to get the therapy started (since we've moved).

To answer your questions, between 4 months and 6 months, he only gained 6 oz.  That's not nearly enough.  We moved from Fort Campbell to Colorado Springs when he was about 5 months old.  Before we moved, the down syndrome clinic in Nashville had him weighed every week, and he was gaining 7 oz a week.  We didn't think about his weight since.

We have gotten him to 21-24 oz a day by waking him up at night for an extra feeding, after that dr's appointment that we found out his weight gain was so low.  Up until then, he was taking in about 16-20 oz a day.  

I have since found out I am pregnant, and even though I'm pumping as much as I always did (6-7x a day) my milk has gone down tremendously.  Quite depressing.

[MommaToGo]

I brought the Down Syndrome chart with me to the new dr's, so we were able to track his weight gain.  

I should have been more specific, when I sell he fell, I meant the percentile.  He didn't actually lose any weight.  Just gained very little.  His weight is right around 50th percentile.  He is a chubby little guy.  He has rolls, even on his knees!

But, his new dr sent us to the cardiologist, even though we saw one right before we moved.

Turns out, he also has an issue (in addition to his heart defect- ASD) with the altitude difference with our recent move.  The pressure in one of the chambers of his heart and in his lungs was too high.  We go back this week for a re-check.  If it's still high, he will need oxygen part time.  Something I did not even think about at all, the altitude difference.

Pretty much, he eats the same amount of milk/formula he ate when he was 3 and 4 months old.  So, we are still waking him at night for an extra feeding.  We are also now working on solid food slowly, with the help of a speech pathologist.  Since introducing the nightly feeding, his weight gain has picked up (going by his weight at the cardiologist).  We go back to his regular dr's next week, so I should have some good numbers hopefully. 

I'm not gonna lie, I don't like waking him up at night.  He looks so peaceful!

[47chromosomes]

Your doctor's advice is of highest importance.  My son with Down Syndrome was a totally chubster the first six months, and then gained nothing for the next six months.  And it was the same scenario for my next two children.  All three grew in stature and were healthy as can be.  My son with Down Syndrome did not have a heart issue or any other issue except reflux.  He was exclusively breast fed until 16 months as he could not eat any solids until then. 

Now our doctor is very hands off, and trusts Charlie's body to tell us if anything is truly wrong, and was not at all concerned about the lack weight gain.  It might be worth asking, once heart and other issues are managed, if it might just be your child evening out in weight and height as he becomes more active. 

Or, one other consideration I can pull from my experience is reflux... when we finally figured out Charlie was dealing with that and we put him on meds, he finally was able to make headway with eating solids.

I know a lot of parents deal with a lot more issues than my son did (medically, anyway) so my ideas may be totally wrong for your child, but it was just a thought to ask your doctor if you want.  ;)

Good luck with everything.

[MommaToGo]

Hi Kim,

Baby has been diagnosed with reflux since he was several weeks old.  When we moved here, he seemed to have issues with it again.  The dr changed his medication to a different one and that seemed to help a lot.

He is now on oxygen 24/7.  He has been diagnosed with pulmanory hypertension.  Getting adjusted to the oxygen was not a fun thing at all.  He ate even less because his nose seems to get always stuffy. 

Thanks again for all the advice.  We will continue with our doctors appts, seems like there's at least one a week.

[47chromosomes]

We have friends with a daughter with Down Syndrome who was diagnosed with pulmonary hypertension when they had moved to high altitude.  It resolved when they moved back down to lower altitude.  Here is the link to her blog, you might want to search it for her posts about their experience or contact her.  Good luck with figuring things out.  http://puritanwife.blogspot.com/