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Help, any advice please :)

Posted by on Nov. 9, 2009 at 9:55 AM
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Hi there my DD is a  almost 3 1/2 we've always had a throwing up problem !! She is 100% tube fed and getting peptaman JR.. since she doesnt eat anything by mouth !! We've been going back and fourth with different medicines and she was doing great for a while but started throwing up again I just dont know what to do anymore w/ this.. She's seen by a GI and a pulmonarty (lungs ) She has no lung issues though but when they did a bronchoscopy to see if anything is wrong she did find a lot of mucus and secretions build up,  and she's had a reflux test done and she does not have reflux but I know she does !! She's had all other tests done and everything came back fine.. She was a preemie born at 26 wks...

I know she has reflux well I think b/c she always has this coughing going on sometimes during feeding but alot of times after even 2 or 2 1/2 hrs running around or playing  she could just cough and throw up !! She's not really gaining weight muchshe's almost 27 lbs..

Her GI said now we have to go to pulmonary it's not GI related.. Here are amanda's meds : Prevacid, Orepred  for coughing, singulair,  pulmicord ( nebulizer ) So any advise as to what you guys think amanda may have will be appreciated.. I'm thinking about calling the dr. again and demanding new meds.. but I dont want her on all these meds.. Anyone use zantac b/4 that is the only one amanda has not use ??? Thank you :) Nothing seems to be working !!

by on Nov. 9, 2009 at 9:55 AM
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chelleybeans
by on Nov. 10, 2009 at 5:46 AM

 Typically (or from what I understand) they start kids out on zantac. It's not as strong as the other ones. But sometimes they can pair zantac and another med together to help. Can I ask why she is tube fed? Obviously there is some sort of GI issue if she is being tube fed, have you thought of getting a second opinion? Have they tested her for eosinophilic disorders or celiac's or any of those? Does she aspirate that you know of?

Just some background on my son: He is 17 months old and he was born at 33 weeks and was diagnosed w/ acid reflux at 4 weeks old and put on zantac. Then diagnosed w/ severe GERD at 4 months and put on prevacid. Then after a ton of colds, ear infections, and RSV things got wicked hectic. He is on pulmicort (nebulizer), albuterol nebulizer as needed, pro-air inhaler 2-4 times a day, prevacid, and thickened fluids. My son also had a bronchoscopy done in August and they found he aspirates his reflux and the fluids he drinks or "eats" and his lungs are flimsy and collapse off and on (called tracheomalacia and bronchomalacia). My son wheezes and coughs constantly due to all of this. So our kids don't sound too different from each other. Hopefully we can be of some help to each other!

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chertazz1
by New Member on Nov. 10, 2009 at 10:46 AM

 

Hi there my daughter is tube fed because she eats nothing by mouth, she was doing ok with eating and drinking her bottle a while back but then all of a sudden stopped.. and wasnt gaining weight.. This dr. is our 2nd opinion.. Basically she said it's not GI related that we have to go to pulmonary now.. She's never had lung problems or anything wrong .. What is celiac ??   As I mentioned we are on prevacid but not helping, now can you put zantac and prevacid together ?? I heard that u can.. We've never ussed zantac.. But they say she doesnt have reflux, but I totally disagree what is this coughing then ??? Anywho hope to hear back.. Thanks again :)

chelleybeans
by on Nov. 10, 2009 at 1:53 PM

Celiac is basically like an allergy to gluten which is found in a lot of things. And it can really hurt them if they eat it and what not. I have a neice who is 9 days younger than my son who has this along with other issues and is tube fed. My neice also is on a zantac and prevacid combination. I'm wondering if the coughing could be she is aspirating which then pulmonology would look at and take over. But I would maybe ask about her being checked for eosinophilic disorders and celiac's and any other diseases or disorders.  

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chertazz1
by New Member on Nov. 10, 2009 at 8:38 PM

 

Hi there thanks for responding back !! I'm hoping they will put her on zantac and we could also use prevacid i'm just tired of all these medicines.. I'm not using some of them b/c it's just sooo ridiculous...  She isnt aspirating as they never mentioned it to us about that.. So I dont think that's it.. I dont know though it's a true mystery with her.. How is the prevacid and zantac working on the child ? Do u know if it's helping ? I'm hoping it helps amanda.. This cough is just sooooo annoying and stressfull !! She coughs alot and also makes these weird faces that she could throw up but doesnt.. She doesnt have that other thing u mentioned.. celiac ?? Hopefully they will test for other disorders.. Thanks again

mom2ljh
by on Nov. 22, 2009 at 11:11 AM

Do you have the option of finding another GI, even if its someone else in the same group?  My son was on Zantac as an infant, then off everything from 15 months until 27 months.  Now he's on Prevacid, because when we restarted meds, Axid (comparable to Zantac) just didn't touch it.  I'm sorry she's having so many issues.  Good luck.

Amanda ~ Mommy to my little miracle Landon Joel
born 6 weeks too soon~6-21-07, former refluxer, multiple food allergies, verbal regression, and the coolest kid on the block.

Then                                           Now
 

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