Posted By Posting
Apr 11, 2011
mommytosmf
we're back, again...
Hi all, My old user name was StephensMommy, but since the site would not send my password to my email after numerous tries, I had to create a new account. Things are are rough. The last update I gave was that S was in the hospital for dehydration. During that time we had every test known to man done, including MRI's, 2 endoscopies with biopsies, cardiology testing, etc... and they determined that he was fine except that the lovely GERD is back. He wouldn't eat for 2 weeks, so we ended up doing a feeding tube. We did a G-tube rather than NG b/c of the oral defensiveness. Got him on 30 mg. Prevacid a day and his weight is back up thanks to the tube. He is spitting up alot, which NO ONE can explain WHY since had a Nissen and it is still intact. He acted like it bothered him to swallow but since doctors found no physical signs of dysphagia, they ruled it out. I think there might be some dysphagia there. We also switched to Elecare b/c the Neocate was making him constipated. No DGE, no other motility issues. We have been at Our Children's House at Baylor in Dallas going through their 5-week feeding program, and he has made some progress, but not much. :( They want us to go back home, but there aren't too many therapists back home who can help him. Right now we're trying to get someone from www.clinic4kidz.com to come. We started on CaraCream Max, with the 30 mg of OTC Prevacid, but I'm not sure if it is helping much. We've been using the CaraCream for about 1 1/2 weeks, and I don't see much of a difference between that and him getting the regular compounded version. I KNOW I have mixed it correctly (took me over an hour to make it the first time) and my dad (medicinal chemist) even made sure I did it correctly over the phone, lol. He knows a few people at Marci-kids. Anyway, how long does it take to notice a difference with the CaraCream??? Should we try something other than Prevacid? He gets extremely gassy, so I was worried about the sodium bicarbonate with Zegerid. What do you think??? Thanks! ~ Sara
Apr 11, 2011
mommytosmf
Forgot to add that we also figured out he has bad allergies so we are on Zyrtec which is helping a ton.
Apr 11, 2011
mommytosmf
Forgot to add that we also figured out he has bad allergies so we are on Zyrtec which is helping a ton.
Apr 11, 2011
elenacs
Elena, Mom to 2 great kids with the 3 Amigos..GERD, Allergies, & Asthma.
Has he had an Impedence Probe done to see if there is non-acid reflux there which could make his throat quite sore. PPIs don't really work for non-acid reflux. Just a thought. I think maybe trying a different PPI might help first though.... I will say that my son does better with the Prevacid Solutabs. The OTC version never worked for him...it was like he was untreated. ~Elena
Apr 11, 2011
jeddsmommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
How long has it been since the G tube/Nissen surgery? that can play a big part on when oral feeds will be able to resume.

Remember, alot of swelling went on in there with they did the Nissen and it can make it uncomfortable to swallow. Also, some children can take a bit to get back to eating orally after having a Nissen as well. It just takes a bit, it's major surgery, recovery time is needed.

Some kids bounce back faster than others.

Apr 12, 2011
mommytosmf
He had the Nissen way back in December, and it seemed to have worked great. He bounced back quickly (drank formula 2 days after), and he was actually eating well for about a month. Things went downhill though and he stopped eating, so that is when they did the G-tube. G-tube has been in for almost 4 weeks now. Tried Prev. solutabs before and they didn't help. Maybe Zegerid or Prilosec? I don't know. Never heard of an Impedence Probe, what is non-acid reflux? His breath usually smells sour after he wakes up or there is spit-up, so I am pretty sure it is acidic.
Apr 12, 2011
mommytosmf
Oh and if you search "StephensMommy" my old user name you can read some of our history.
Apr 12, 2011
mommytosmf
Also, I don't know if this makes a difference but when they did the biopsies from his endoscopy, there was evidence of reflux esophigitis.
Check with your
doctor first!