Probe results-scared

[Anonymous]

My son is five months old and 16 pounds. Just recently he had a impedance probe done at Cincinnatti Children’s Hospital. The nurse called today and told me the results. She said he refluxed 202 times, 98 full esoph. episodes and the rest were partial. Only 3 episodes were acidic. The probe was done on 30 mg of Prevacid (a MARCI kids dose) but he was off his Reglan. The nurse also said the doc said that he might need a fundo. Even though the prevacid is obviously doing his job that reflux like that can still be causing damage. He is due for an endoscopy, larangoscopy, and bronchoscopy next Wed. What are your thoughts on this? He is gaining weight on 26 calorie per oz formula but I sleep feed him mostly. He did show mild gastric empyting delay on a GES done two weeks ago. He is now on Erythromycin and 15 mg of Prevacid twice daily. Has anyone else had probe results like this? Any suggestions of what else we could try or do? Fundo? This is my third child and none of my other children have any problems. He also has a recessed jaw, high arched palate, and hydronephrosis of the kidneys. He receives early intervention nutrition, speech, and physical therapy. Thank you!

[Anonymous]

This is only my opinion, so I hope that I don’t offend anyone. But I would also get a second opinion before going ahead with a fundo. They work for some kids, but cause terrible complications for others. I would also want to see what the results were from his other tests. If there’s no damage, then at least you don’ t have that to worry about. I also had to sleep feed my daughter hypercaloric feeds. She never had a probe, but I could count her refluxing well into the 200 plus times a day when I was holding her (which was most of the time due to her crying). She also had some delays, primarily due to the reflux I believe. we tried feeding therapy and it was a long road, but it did work in the end. Do they think that the recessed jaw and high arched palate have anything to do with feeding issues?

[Anonymous]

I forgot to add, you might want to check out http://www.parent-2-parent.com/forum. I used to visit there, and there are quite a few fundo moms on there who may be able to help you. This is a GREAT site, and hopefully kevieb will chime in, I believe she’s the only one who experienced the fundo, but just for some more info.

[Anonymous]

Thank you! My heart just sank when I heard that and I felt very scared. I don’t have any friends that have experienced this kind of reflux. Does anyone know of somewhere to get a second opinion in the Louisville Kentucky area? My pediatrician said usually people go to Cincinatti around here for their second opinions. The high arch palate and jaw definetely add to his feeding issues. He has a very weak suck. He has a lot going against him. We are seeing the feeding team at Cinci Children’s hospital as they think it is multiple issues causing this. They are the ones that ordered the tests. Dr. Pintiuk is our GI but Dr. Kaul is doing his scope so we can get his opinion as well on Wed. I have looked on the post about GI recomendations but didn’t see any in Louisville but did see some at Cincy Children’s however they won’t let me go between doctors there to get second opinion. Thank you so much!

[Anonymous]

Some docs are quick to do fundos. And some parents are also quick to get them done. They work for some, but also do not work for others. If he needs it, then you have to do what’s right for him. But I’d read up about it on the site I suggested and there’s another reflux site that has lots of info about it as well. It’s not the number of reflux episodes that necessarily matters- I know someone’s child who had almost 400 in one day, and did not need a fundo. So it definitely depends on the child. But like I said, be sure to keep informed and ask questions. I can understand your fears.

[Anonymous]

i posted on your other thread, but just wanted to agree here with what lori said about it not being the number of reflux episodes that necessarily matter. it is prolonged episodes of reflux that are more of a problem.

if the prevacid is doing it’s job, i doubt he is going to have much damage. 200 episodes of reflux that last 15 seconds wouldn’t have time to do much damage—especially if they are not acidic. ( i just used 15 seconds as an example) ask for a copy of the probe report. they will most likely give you the docs interpretation of the report—you want that—but you will have to ask specificially for a copy of the graph of the probe. this is kind of a neat thing to look at, but i had to make it very clear what it was i wanted when i asked for it.

i don’t know if his other problems are related to the reflux or not, but i have heard that babies with other problems are more likely to have problems with a fundo than babies without other problems—however, if he is aspirating and getting pneumonia, for example, the risks of aspiration pneumonia would probably outweigh the risks of fundo complications.

he is still pretty young and just past the peak age of reflux, so you might actually start seeing some improvement with a little more time.

keep us posted. i know that with sylvia, i would do it again in a heartbeat—but each child is different and has different circumstances.

kevieb2009-04-25 18:57:33

[Author]

Posts