We found this picture the other day and had a good laugh, she was so darn cute. Reflux is still an issue here and it is beyond the point of her growing out of it as promised by her Dr's. We met with a new GI Dr. who actually listened to my concerns. We have changed her medication to Prevacid which comes in pill form, this makes things so much easier as her last med was compounded monthly by the pharmacy and had to be kept cool which made travelling more tricky and the monthly dispensing fees are gone as well. The Dr. would have liked to try her on a motility agent but because of her irregular heartrate she cannot be placed on one which leads us to the only real option Fundoplication. As most CP/Preemie Mom's know a Fundo is not an option, to surgically tie her stomach to prevent her from vomiting is not an option for us, she has not had regular bouts of pneumonia to make us think she is aspirating. The Prevacid initially calmed her stomach but now she is spending a lot of her nights gagging and retching in her sleep, I am often in her room repositioning her uphill and on her stomach but she slides down and gags and retches. She even vomited in her sleep one night and I didn't even notice until the morning which is scary. So we are back to the drawing board and have changed her meal times, eliminated her nighttime glass of milk and avoid all fatty foods in the pm. I know if we go back to the Dr. it will be to increase her meds again and a talk about a Fundo so we will try Mommy's way for a bit. One really good thing is that she has only vomited twice this year which is a total record for her.
4 comments:
That picture reminds me of one time I was holding my cousin up in the air and had my mouth wide open cooing at him and yep spit up right in my mouth..lol..I can laugh now though I wasn't laughing then..Sorry to hear about the gagging stuff, I am so glad that Kellar seems to have gotten his under control though he does have a occasional spit up and at night I sometimes hear him "swallowing" so I'm thinking he's refluxing..Here's hoping that mommys way works for ya'll...
Reflux is such a bear! This has been one of our many major challenges with Abby.
I know the Fundo sounds horrible, and it is surgery that carries risks. In our case, it saved Abby's life at the time she received it. She actually started gaining wt and after not eating anything at all, began tasting baby foods. 4 years later we have reflux problems again and she is now on J-feeds with continuous drips.
The only reason I share this is b/c I feel your pain and hope Elizabeth is able to overcome this issue. Does she eat foods ok? Is she on a high cal formula to supplement meals?
-Patty
Did they consider her taking 2 prevacid pills a day I know that sometimes helps. Ashley takes this med as well just one is working for her but she has a friend who is just 2 and 1/2 so pretty young and she needs two pills daily and that stopped the reflux.
Ashley likes to spit hers out I'm finding them on the floor a lot. But she managing to keep everything down so I'm not to concerned.
Hey Angi, few things. One, how much prevacid is she on? And when are the doses?
I know that cisipride causes cardiac issues, but I don't see why she would not be able to try reglan or domperidone? As well, I would definitely want a motility test first to even determine if this is an issue. Very easy test.
Fundo. You know my take. Not unless it is a life threatening situation!!! And vomiters do worse with fundos than kids who don't vomit. Usually end up with horrible wretching that is definitely not fun to watch, nevermind for the child to go through.
I also wanted to say that when we did Ashton's lung wash last year we expected nothing. He was gj tube fed at this point for two years. His lungs were 40% fat from micro aspirations!!! We could not believe it. And he had NEVER had pneumonia. So just a warning that it "could" be happening and you wouldn't know at all.
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