Posted By Posting
Apr 24, 2009
mommato3
Probe Results-Help, I'm scared
Holden's impedance probe results are back. He refluxed 202 times!!!! 98 episodes of full esoph. reflux and the rest were partial. Out of the 202 episodes only 3 were acidic. They did the probe off his Reglan but on his 30 mg dose of Prevacid. When the nurse at Cincinatti Children's Hospital called she said the doc said they may need to do a fundo because it was so severe. They said 50 episodes is a lot but he is 202!! I guess the good news is that most is nonacidic thanks to his big dose of Prevacid. He is 5 months old and 16 pounds. If you have forgotten his history you can go back about two weeks to some older posts of mine-feeding team update, probe update, Cincinatti, GES results, and erytromicin dosage. This scares me soooo bad. Has anyone else had these types of results. That seems like so much. Holden is scheduled to have a endoscopy, larangoscopy, and bronchoscopy this Wed. We will see what the results are. The nurse just said that with that many episodes even though the Prevacid is controling the acid it can still be causing damage, spilling into his lungs, etc. What are your thoughts?? The thought of doing a fundo on a five month old to me is ubserd. The pediatrician just says you can get a second opinion but most people go to Cincinatti for their second opinions. He did show mild delayed gastric emptying on his emptying scan. What questions should I ask the doctor? What things should we try? Does anyone else have probe results like this? I'm so scared. This is my third child and my other ones never had any problems.
Apr 25, 2009
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
NOPE if you are at Cinny most peopel do NOT go to them for their second opinion. they so see Dr D. Li. at Columbus...LOL She's feeding you a line. And she's just the nurse, she should NOT be telling you these things. It's the DRs job, not hers. BTW she has NO idea what she is talking about if you want me to be completely honest. I'd be ticked at her actually.

As long as the EDG and such shows NO damage and he is NOT refluxing into his lungs you will be fine. WAIT don't make any rash decisions based on what a nurse told you.

Has he ever run a fever in the past of unexplained origin?? Does he sound "junky" when he breathes??? Does he have a "wet" sounding cough quite often??

Personally, if you are going to be doing those tests, I'd ask the Pulmo for his opinion. He would trump the GI (and his nurse) in these situations where aspirations are concerned.

I am sooo sorry that the nurse got you all in a tizzy, that was completely unfair of her to do. It's not her job.

Now, this is completely MHO but I'd do just about ANYTHING in a non=aspirating child before doing a Nissen. That would include paling a feeding tube. Again, JMHO. but if the risks are not life threatening, I just wouldn't consent to one.

YOU are the Mother do not let them intimidate you into saying yes.

And yes, I have sat across the desk from a ped. surgeon and told him a resounding NO with my DH sitting right there with me to back me up. If can be done. Just because they SAY it needs to be done, doesn't mean you have to do it. Get second and even third and fourth opinions.

Sorry about the "sound" of this post, but really, that nurse should not have done that to you. HUGS

It really should NOT matter how many times a child is refluxing per hour or 24 hours. What matters is this: That the meds are controlling the damage and preventing it from occurring. And, that the child is NOT aspirating. Other than that, there is no reason to jump to a Nissen just because a child refluxes a GREAT number of times.

He is still very very young. He needs time to "grow out of it" and yes, our son has NOT even at age 2.5, I still wouldn't change a thing. His meds control his GERD and that's all that matters to us.

Agian, bug hugs, I'm sorry she got you all in a tizzy over this.

Just a thought as well, since you were OFF reglan for the testing those NON acidic refluxes are probably due to THAT more than anything. Food was moving slower and had no where to go. KWIM

Even though you had a normal GES that means just about nothing. It's only a snapshot in time. Just keep that in mind. If you see a def. change while using a motility meds, KEEP using it. KWIM>

Apr 25, 2009
mommato3
Thank you, thank you!!! After the results of these scopes come back I may have some more questions. What did Jedd's probe say? The pulmo is doing a bronch and lung wash so we will see if he has aspirated into his lungs. The lung wash will be sent to the lab for a culture. It makes me mad at the doc that he would tell the nurse to tell me that he may need a fundo. Thanks again for your support. I may have more questions for you if that's ok. He is now on Erythromicin. Would you mind reading my post erythromic dosage from a couple days ago. I think Jedd was on that med.
Apr 25, 2009
molson1525
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
My son has similar probe results as he refluxed in the hundreds of times and all were full but his was done off meds and his was acidic almost all the time so I am not sure what to tell you there. I will say I agree with Jessica about the fundo. My son had one done at 16 months and for us it was life changing and we would do it again in a heartbeat but it was life threatening for us from aspiration, apnea, and ALTES all the time as well as severe damage to his esphogus. Even the best are sometimes wrong so I would always when considering major surgery get a second opinion. I had opinions from UCLA, Stanford and one of the best GIs on the west coast before I consented to surgery.
Apr 26, 2009
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
HUGS Mary.....I know for many children the Nissen literally SAVES there life. Your little guy certainly is one of those kids. ;-)
Apr 26, 2009
mommato3
Mary-Did you have to tube feed b/f the nissen? Would slow continuos tube feeds help? He is fed 4 6 oz bottles now b/c I can only get him to eat when he is passed out asleep. I would think smaller more frequent feeds would be best but he won't eat b/c of aversions.I see your son has DGE. What are your thoughts of a fundo and DGE? What are some other options if he is aspirating and or severe damage? He has never had pneumonia so I would think his lungs couldn't be that bad. Should I go ahead and start calling GI's for opinions. It takes so long to get into anyone who is half way decent. We lucked up with a cancellation and got into Cincy. We are praying that all scopes will look good (no aspiration, damage) that the PPI is doing its job and we won't be faced with some tough decisions. Jessica is right he needs time to outgrow it, at least a little. I feel at the least they are going to encourage tube feedings. I want to be armed with as much info as possible.
Apr 26, 2009
mommato3
I guess I should add that he has turned blue 3 times as he choked on it. I had to turn him over a hit his back to get himbreathing again. This was about 2 months ago. I thought he was doing much better as the projectilevomiting and choking episodes have decreased. I would have hated to see his probe results 2 months ago. Thank you so much for sharing your experiences and knowledge with me.
Apr 26, 2009
molson1525
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
Well we were really lucky in a couple of ways in that my son was a comfort eater and would always take formula so we never had to deal with tube feedings. He also was never a vomiter always had silent reflux which is what probably caused most of the damage but also made him a good candidate for the Nissen. Also, his DGE was in the mild category and responded really well to motility meds. He definitely outgrew the DGE too. SO I will hope your son will outgrow some of the severeness of his symptons too. The turning blue is so scary. I would wait to see what the rest of the results yield before scheduling a second opinion because you may not need one. Another option which I am sure pulmo will discuss with you if he is aspirating even without pneumonias is to put him on a preventative asthma med like Flovent to protect his lungs from any potential aspiration. Don't hesitate to ask if you have any other questions.
Apr 26, 2009
molson1525
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
Well we were really lucky in a couple of ways in that my son was a comfort eater and would always take formula so we never had to deal with tube feedings. He also was never a vomiter always had silent reflux which is what probably caused most of the damage but also made him a good candidate for the Nissen. Also, his DGE was in the mild category and responded really well to motility meds. He definitely outgrew the DGE too. SO I will hope your son will outgrow some of the severeness of his symptons too. The turning blue is so scary. I would wait to see what the rest of the results yield before scheduling a second opinion because you may not need one. Another option which I am sure pulmo will discuss with you if he is aspirating even without pneumonias is to put him on a preventative asthma med like Flovent to protect his lungs from any potential aspiration. Don't hesitate to ask if you have any other questions.
Apr 26, 2009
molson1525
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
Well we were really lucky in a couple of ways in that my son was a comfort eater and would always take formula so we never had to deal with tube feedings. He also was never a vomiter always had silent reflux which is what probably caused most of the damage but also made him a good candidate for the Nissen. Also, his DGE was in the mild category and responded really well to motility meds. He definitely outgrew the DGE too. SO I will hope your son will outgrow some of the severeness of his symptons too. The turning blue is so scary. I would wait to see what the rest of the results yield before scheduling a second opinion because you may not need one. Another option which I am sure pulmo will discuss with you if he is aspirating even without pneumonias is to put him on a preventative asthma med like Flovent to protect his lungs from any potential aspiration. Don't hesitate to ask if you have any other questions.
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