We're waiting to see the pedi gastroenterologist to try and get to the bottom of W problems with not gaining weight. I'm not sure what the next step is, but we've definitely past the "wait and see" point.
Hopefully we get some answers
Update: so he asked a lot of questions and was pretty thorough and wants to do a blood test and a urine sample. He didn't seem overly concerned since he HAS gained some weight, which is a good thing I guess. BUT he felt the need to tell me multiple times that babies with Down syndrome typically gain at a slower rate (Duh, heard that before) and recommended I check out reputable Ds websites to learn about Ds and related conditions (gosh, that never occurred to me)
He said there may be a condition that is prohibiting him from absorbing nutrients like celiac, an intolerance or a structural issue, but he is pretty young for all that testing. He wants me to do monthly weight checks and come back in 2 months. He has a pedi appt in 2 weeks so I am going to ask if we can come in every 2 weeks instead of monthly. He also wants a record of exactly when and how much he eats for a week.
Also, he wants me to add a tbsp or 2 of rice cereal to his formula to add calories without adding volume. Does this seem right to you? He said I could buy the AR formula with added rice or just add rice to what we already use. The AR formula has less calories than the enfacare I am using already, so I bought rice to add to what we have.
When DD was labeled FTT we went through all the testing right up until they wanted to scope her. I was adamant she didn't need it.
All along they kept saying that everything pointed to malabsorption but they could never pinpoint it. She's still small, 11% but when she started gaining at a consistent rate, albeit well below average, the GI released us.
She also wanted me to put duo cal in bottles or baby food. I was really resistant to that and we agreed on butter, oil, avocado etc. added to baby food. Things that were higher in cal.
I don't know how things are different for W because of his DS but that's our story.
Hopefully he's just a peanut and they won't find any underlying issues.
When DD was labeled FTT we went through all the testing right up until they wanted to scope her. I was adamant she didn't need it.
All along they kept saying that everything pointed to malabsorption but they could never pinpoint it. She's still small, 11% but when she started gaining at a consistent rate, albeit well below average, the GI released us.
She also wanted me to put duo cal in bottles or baby food. I was really resistant to that and we agreed on butter, oil, avocado etc. added to baby food. Things that were higher in cal.
I don't know how things are different for W because of his DS but that's our story.
Hopefully he's just a peanut and they won't find any underlying issues.
Can I ask why you were resistant to the duocal? It looks to be significantly more calories than the rice cereal. Maybe I will ask the Dr about it or a similar product. I mean, if I'm adding something to his formula it might as well be the most bang for my buck, ya know?
We have done rice cereal for reflux and I never noticed an increased weight gain. It's also more difficult to eat because they have to suck harder and mine always filled up faster. With DS2 we mixed his Enfacare to 28 calls an ounce (vs the typical 20) he packed on weight like crazy and it didn't seem as heavy as the rice.
Could you meet with a nutritionist to talk about all the calorie choices? Could he still be burning more calories because of the RSV and invisible lingering lung stuff?
We have done rice cereal for reflux and I never noticed an increased weight gain. It's also more difficult to eat because they have to suck harder and mine always filled up faster. With DS2 we mixed his Enfacare to 28 calls an ounce (vs the typical 20) he packed on weight like crazy and it didn't seem as heavy as the rice.
Could you meet with a nutritionist to talk about all the calorie choices? Could he still be burning more calories because of the RSV and invisible lingering lung stuff?
I am by no means experienced or an expert - but I've heard of this more than rice cereal helping - increasing the cals per ounce of regular formula. That's a pretty common NICU thing, right?
I mean, if the enfacare is already more than formula+rice, I can't see how it would help, you know?
Can you get advice from the regular pedi or one of Wesley's other docs - or like USM said, a nutrionist?
I'm sorry you are dealing with this. Do you think he'll be ready to start solids at 5-6 months?
When DD was labeled FTT we went through all the testing right up until they wanted to scope her. I was adamant she didn't need it.
All along they kept saying that everything pointed to malabsorption but they could never pinpoint it. She's still small, 11% but when she started gaining at a consistent rate, albeit well below average, the GI released us.
She also wanted me to put duo cal in bottles or baby food. I was really resistant to that and we agreed on butter, oil, avocado etc. added to baby food. Things that were higher in cal.
I don't know how things are different for W because of his DS but that's our story.
Hopefully he's just a peanut and they won't find any underlying issues.
Can I ask why you were resistant to the duocal? It looks to be significantly more calories than the rice cereal. Maybe I will ask the Dr about it or a similar product. I mean, if I'm adding something to his formula it might as well be the most bang for my buck, ya know?
I'm trying not to write a novel. But basically I always knew in my gut that nothing was medically wrong with her. And after reading the ingredients I just wasn't comfortable with it unless they could tell me why she needed it other than she was too low on the weight chart. In my mind, to have a weight chart doesn't there have to be a baby at the top and one at the bottom? They can't all be 50%.
I never even would have thought she wasn't gaining enough until the pedi mentioned it. Looking back at her baby pictures now I can see how tiny she was. And in the beginning she would go weeks with no gain. But by the time we were referred to the GI after just watching her weight and working with an LC, she was gaining at a consistent if low rate.
I'm rambling but basically I just didn't think she needed it. And now, even looking back on those pictures of her so tiny I still feel like I made the right choice. And now she's still small, but she's got chunk and she's blowing her milestones out of the water.
However- if I was truly concerned and thought my baby needed the extra calories I would do duocal over rice cereal. It's formulated for this exact purpose whereas rice cereal really has no nutritional benefit and can be constipating.
Post by Kcthepouchh8r on Apr 17, 2015 7:12:59 GMT -5
We did rice cereal in the bottle for ds. His case was slightly different though as he was not gaining due to excessive vomiting. He definitely gained weight due to it. I would give it a try for now and when he moves to solids you can add healthy fat in foods. Hope it helps!
Can I ask why you were resistant to the duocal? It looks to be significantly more calories than the rice cereal. Maybe I will ask the Dr about it or a similar product. I mean, if I'm adding something to his formula it might as well be the most bang for my buck, ya know?
I was resistant because I didn't truly think she needed it. She never lost weight, she just wasn't gaining as much as a typical baby does. She was consistently low on the charts.
They were solely focused on her % and didn't seem to care that she was thriving, happy, had plenty of dirty diapers, didn't cry a lot (meaning she wasn't hungry all the time).
She was EBF and I feed on demand and she nursed normally like DS did and after several weeks of weighted feeds the LCs didn't seem to think she wasn't getting enough.
The whole reason they wanted to add calories was to get her % higher. The GI didn't think she had anything serious going on and we ruled out several aller
We had the same issue with L. He wasn't on the charts until 12 months and is not at a whopping 3%. He has always gained but very slowly. He is happy, healthy and developing.
Thanks guys. I think part of the reason he suggested rice is because W has been throwing up and he thought it might help (although he agrees with me that it is most likely due to his congestion and not something like reflux - he coughs so hard he gags on phlegm and barfs. Gross. It happens maybe once a day)
I will email him and ask about the duocal or just upping the formula per water ratio. It already has 22 cal/oz. You need a 1/4 cup serving of rice to make 40 cal or something silly. It doesn't seem like a tbsp or two is making much of a diff. I'm also going to ask around for a nutritionist.
I feel better that he wasn't too worried honestly. My other 2 started in the 95 %tile and basically stayed there, so W only gaining 2 lbs in almost 4 months seemed like a huge deal to me, but it may not be. It might just be him.
Post by penguingrrl on Apr 17, 2015 8:10:27 GMT -5
I'm sorry the doctor treated you like an idiot. I hate doctors like that. Bedside manner is really important.
If you were sure that the slow gain was related to reflux and spitting up too much I would say the rice cereal might help. But since you're pretty sure it's not related to that I don't think rice cereal will help. I remember reading that rice cereal is far less calorie-dense in addition to having fewer nutrients, so that seems like odd advice for a child who isn't gaining and it's not related to having trouble keeping milk down. I would try to find someone who specializes in DS to see if they can give better answers.
It also may be simply that he's a slow grower. I would be nervous about that as well since my kids were all towards the top of the charts, but my best friend's daughter hovers between the 1st and 4th percentiles for weight and has since shortly after birth. Is he maintaining percentiles and just small or is he continually falling in percentile? That would make a huge difference in how worried I was.
I would add fortifier or a high cal formula before adding rice, but i agree with pp--check with your local ds clinic. I think every 2 weeks is a great starting point. A nutritionist verses in ds would be a wonderful resource as well. GL momma.