Friday, October 9, 2009

I'm officially concerned...

about Dylan's reflux.

***

But first I just have to say thank you all SO much for your wonderfully helpful comments to my boring feeding post yesterday. I have already begun implementing some strategies that you've recommended and will continue doing so. I did want to share this article that was left in the comments section from Alisa. It is from Disability Solutions and is titled, "From Milk to Table Foods: A Parent's Guide to Introducing Food Textures" by Joan E. Medlen. It is specifically written about kiddos with Down syndrome, so I thought that was quite helpful.

***

On to the reflux.

I know that I have mentioned a few (ahem thousand) times that Dylan has pretty severe reflux. We have tried 4 (or is it 5?) different medications with minimal success. This has been going on for months and months and months. So why am I now all of a sudden officially concerned, you ask? Well, because over the past few weeks, it has gotten significantly worse. I have begun keeping a "spit up log" (now doesn't that sound appetizing?!) and have discovered that Dylan spit up about 25 times yesterday and so far today (it's 2 pm) he has spit up about 23 times.

Wow, I really hope you aren't reading this while eating a snack - sorry!

He has also begun losing weight.

The only change, and it's a pretty big one, is that he's been weaned from nursing for a couple of weeks now. I'm wondering if the increase in spit up is due to switching from nursing to drinking milk from a straw cup? Could he be swallowing too much air as his GI nurse just suggested on the phone? Or is it from the change in breast milk to soy milk? I tried using whole milk but honestly could not tolerate the spit up that resulted from that. :Shudders:

I have been told that he will eventually grow out of reflux, but in the meantime...helllllp! I'm worried about my little guy...not to mention I'm completely drowning in dirty laundry!

6 comments:

Alisa said...

Hey Laurie,
Thanks for the shout-out. Glad you liked the article. Have you thought about a possible allergy/sensitivity? Often kids are allergic/sensitive to milk AND soy, and it's not really identified when the mom is nursing. And sometimes doctors get so distracted by the Down syndrome that they forget to go back to what they would recommend for a typical kid. (I'm guessing food allergy stuff would be in there somewhere for a kid that has weaned and is suddenly spitting up all the time!)

Maybe get a recommendation about using formula that has proteins that are more broken down? (like an aliumentum or something like that.) If you don't think it is a soy and/or milk allergy, you could try Bright Beginnings (available online), which is a little higher calorie...

Good luck!

Leigh Anne said...

maybe you gould try goat's milk. it's a little expensive, but i've read & heard that it's easier for little tummies to digest...

Sasha said...

Is it spit up or full fledge throw up or a combination of the two. Wysdom is on Domperidone 3 times a day to help speed up digestion. He is also on Zantac for acid. He has always had it since birth. He has good weeks where it's minimal and by that I mean once or twice a day where he throws up. Then we have bad days where it is not stop all day. We have the luxury of the ng though so it helps. How about fortifying his milk somehow to increase the cals and give him a little less volume. Or how about smaller amounts of milk broken down into more times a day. Maybe he just has a delay in stomach emptying? Hang in there kiddo. I can't believe how similar our two are.:)lol

Angela said...

I'm a broken record. You know what I'm going to suggest....you've *got* to push for an upper GI. I'm convinced this is not reflux.

Holly said...

Hi there! Just a blog jumper and lurker here. I do not have a child with down syndrome, but I do have a wee one with a Milk/Soy Protien Intolerance, also known as MSPI. Many people think of this as a lower belly issue with stools. However, for us it never manifested that way. My daugther would "spit up" Almost all of her bottles for weeks, then we finally progressed onto feeding refusal. We were put on a special formula above Alimentum, called Neocate, and we are not even at full strength formula at that. I would try to to elminate the milk if all possible. Our next step once she hits 11 1/2 months is attempt a Milk challenge and if she does not pass that, then we will head to Rice Milk. Also, make sure that your dose of your PPI (proton pump inhibitor) is correct. My daughter's was to high, and that was also causing some nausea and vomiting. The one thing with Rice Milk is that your protien will have to come from other sources as it doesn't have much in it. This may not even help you, but I have become a NUTCASE about under diagnosed babies with this. It even caused my daughter to be diagnosed as failure to thrive :(

Amanda said...

Poor Dylan! I have no advice, but it wouldn't surprise me that the change in diet is the cause...I know no help. I hope he's feeling better soon!