Pam, when your ds had his 24 hr. ph test, did he stay in the hospital or did you take him home? How was his comfort level with the probe in his nose? I just got back from taking ds to his GI doctor. Ds's reflux is acting up again. She increased his dosage of meds. But, if there is no improvment in the next couple of weeks, she wants to do this test. She said ds can stay in the hospital for the 24 hrs. or I can take him home if I feel comfortable. I know from a previous post that your ds had this done. How was it?? Thank you for any info. you can give me.

By Pamt on Wednesday, September 21, 2005 - 05:11 pm:

My DS stayed in the hospital. I begged to be able to bring him home and they used to allow it in the past, but they had one too many preschoolers pull out the probe and try to flush the machine down the toilet. Each probe and monitor are many thousands of dollars. Had I been given the option, I would have MUCH preferred to do it at home---cheaper and more comfortable.

N was fine once the probe was in and inserting it wasn't too bad. They had him eat ice to numb his through and then he had to hold still while they inserted it. Afterwards they have to do a quick x-ray to make sure it is positioned correctly. Then he could eat, play, etc. It is all attached to a monitor that you wear around the neck or around the waist. I had a log and had to write down every time he coughed or burped to see if those episodes correlated with spikes in acid reflux. My son refluxed something like 170 times in a 24 hour period which was considered "moderate." You can see on the monitor when their levels go up. Removing the probe was the most uncomfortable part because as they pull it out through the nose the end of the probe has stomach acid on it which burns. He sneezed several times after removal and it stung. When the probe is in they tape the tubing to their face so it doesn't just dangle, so they look a little funny.

Kids can't play actively (running, sports) while the probe is in, but movies, board games, video games, etc. would be great ways to keep him entertained at home. We were at a children' hospital that had a playroom and games, but the hours were limited and the TV hot very few channels. It was hard to keep N entertained in a hospital bed! You will need to sleep in the same room with him too, so you can record coughing episodes throughout the night too.

Let me know how it turns out. I think we are FINALLY over reflux without meds!! Hurray!

By Debbie on Wednesday, September 21, 2005 - 05:24 pm:

Thanks for the information, Pam. They are going to do another endioscopy at the same time as this test, so putting the probe in won't be an issue. So, we will just have to deal with taking it out. I sounds like it will be better if I bring him home, at least he will have his stuff to keep him entertained. I am hoping that the new dose of meds will workout and we won't have to go through this. However, I am not counting on it since ds has been feeling so awful lately. I just get so frustrated with his doctor because she wants to just treat him for a few months and then take him off the meds and see how he does. This is the second time we have done this and it just keeps coming back worse then before. Now, we are having a hard time just getting it under control again. URG... Unfortunately, this GI practice is the only one close to us(and it isn't close - 45 minutes each way)

That is wonderful news about your ds!! How long was he on meds? Josh just turned 5 and was diagnosed last year at 4, which I think is around the same age your ds was diagnosed?

By Debbie on Thursday, September 22, 2005 - 02:28 pm:

bumping for Pam

By Pamt on Thursday, September 22, 2005 - 08:31 pm:

The testing for my DS started when he was about 6-8 months old. We found out that the sphincter muscle at the top of his stomach didn't open and close well and his stomach was slow to empty. He was put on several meds which didn't work, so I finally took him off. Once he was up and walking things seemed to improve. It wasn't until he was a preschooler that I realized he was still having reflux but he was just reswallowing it (eewww) instead of throwing it up since he was older and had better control. I could tell the reflux was back because he has horrible nasty breath even right after brushing his teeth. It was at age 4 that we started with the endoscopies, subsequent allergy tests (allergic to milk protein), milk protein free diet, allergy retest and no longer allergic, still having symptoms, switched doctors (First one was a quack and did the 1st endoscopy with my 4 y/o strapped to a papoose board and totally awake because he had an adverse reaction to the Versed and it hyped him up instead of putting him asleep. I found this out after the fact and was LIVID!!!!), got a great doctor who ordered the 24 hr pH probe, put DS on Reglan (tightens the sphincter muscle at top of stomach to lessen reflux) and Prevacid (decreases stomach acid), then repeat endoscopy with general anesthesis showed that DS's esophagus was totally healed, then weaning off meds. Tomato sauce and similar things still give DS trouble, but overall BIG improvement. Let me know how your little guy does!

By Debbie on Friday, September 23, 2005 - 08:57 am:

Thanks, Pam. Josh is on Prevacid now. He is on the highest dose and he is still miserable. He was on it in the Spring and did great, but this time it isn't working. He has been on it 2 weeks. His doctor said if it isn't better in 2 more weeks then they will set up to do another endioscopy and the probe. He did have lesions in his stomach when they did the last endioscopy and his esophagus had damage. I will let you know what happens. Thanks again.

By Pamt on Friday, September 23, 2005 - 12:12 pm:

Debbie, I think it was the combination of the Reglan and the Prevacid that made the difference for Noah. He has been on beta-blocker/acid reducers before with no change in reflux. The Reglan can be tricky and a little scary since its purpose is to keep that sphincter muscle closed. If they give your DS a dose that is too much it can cause tics, facial grimaces, and other involuntary muscles contractions. Our doctor was great to carefully explain this too us and to figure out the dosage twice to make sure it was the right dose. Noah didn't have any problems with it.