Hi everyone. We had the ph probe done on Wed with a scope. It was one of the worse 24 hours in my life. She did well. The doctor on the ward or the nurses knew nothing abuot the maching and i had no idea if it was working or not. It was. It was flectuating and then it just went to 0.0 0.0 for like 14 hours. Then the nurse almost ripped emma's skin off thying to take the tube out. Then they said the machine did not record anything. I went crazy. Then after an hour of everyone freaking out the lady had to reboot her computer and they got the results. WEll the time when the numbers we up was good the times and hours when the numbers were 0.0 she was refluxing continually. So we are waiting for the results of the biopsy and we see the surgeon on the 29th. I am sooo scared for my little girl. First that she is in so much pan and she has been through so much for the two years of her life and what is to come. More pain and suffering. Has anyone had the ph probe and what happened after that. She is back on the AXID until she is seen agian. Why is nothing working. Any help would be grateful.

That sounds like it was a great experience for everyone!:shock: I am sorry, but I have not had the ph probe done. Becky the moderator has and could be of help I am sure. If she does not respond to your post you should pm her about it.

The problem is with the holidays not as many will post so I am not sure where to turn you to. Elismom is another moderator (of this forum, actually) and is best equipped to deal with fundo questions. If she does not respond then either pm her or pm me and I will send out to them to reply to this post, ok?

Things seem to get progressively worse with reflux before you get a handle on it. I can empathize with what you are feeling and do hope that you get the answers you need and fast. Sounds like she needs something more than the axid if she is refluxing so much, but it depends on the complications. I know from lurking here in the fundo area that parents reccommend trying everything else first and fundo as a last resort.

{{{hugs}}}

Hi thanks for posting. I will try to email her. I have a hard time using the board at times. That is my question have we tried all we can. If there is anyway that she can pass this I will try it. She has been on almost every medication I think is avalible to her. I am worried and confused and I think I am going to wake up and it is all a bad dream I keep asking my ped "do I have that things where I harm my child" anything to make this go away. Of Course she says NOOOOOO!!! When I heard she was refluxing for that long My heart broke. We should hear from the doctor hopefully Monday or Tuesday with the holiday I am not sure about the office's hours. And then we see the surgeon on the 29th. The thing is I am scheduled to have a hystorectomy on the 4th of Jan. I am dealing with that also. 29 and I am stuck with this. I had two c-sections and I have a lot of adhesions. And pain so.... When I called to schedule Emma's follow up she said they were scheduling 6-8 weeks out. You know I was going to write a New Year letter but I thought it would be so depressing. I mean there have been great things that happened this year for us but health wise not. Thanks again for posting. When I see alot of people posting to the other posts and not mine I get a little insecure. But that is the emotions of today. Thanks agian and Happy Holidays.

Tracy,
I have been in the same situaltion as you. Parker is now 15 months and has had the PH probe and endoscopy and biopsy done. I was pretty lucky and they came back clean- except the probe which showed a lot of reflux. The results were good to know because it shows that we are just dealing with the reflux and associated problems.

I hope the results work out for you- I don't know what other tests you can have done- is she on any meds for reflux, does she have any other probs you can look at. Its so frustrating but I can assure you that you have done the right thing with the tests even if they come back fine you just need to go one thing at a time and you will sort it out.

Also I get the same about posting but I think I have had as much experience as these people and you never know what advice I give may help someone and I would love to reply to everyone but some things I really don't understand so i don't post cause I know nothing about the subject. Don't take it personally.

Rachel

That is my question have we tried all we can

Please provide a little more info about what she's been on and what her symptoms/complications are, I'll try to answer that the best I can. Did you read over the articles on the surgery?

I would think that a reading of all 0's would mean it wasn't getting any readings, not that it was continual reflux, especially when you say they didn't know how to work the machine. With the ph scale, 1-7 is acidic, 7 is neutral and above that is alkaline. I didn't think that a 0 is on the scale at all. I'd look into that a little further I think if it were me.

I am not a big fan of the ph probe. We got little info from it and it was pure turture for Sam. in fact, I pulled it out a few hours early because I could not stand to hear him scream anymore. They had enough info to do an analysis, and they said it was "normal"--eventhough his scope showed damage from the reflux!!! I think my GI feels like the ph probe does not always give info we do not allready know, but felt it had to be done because surgery was our next step.

Sam's fundo was this past summer. It has helped him with his reflux and I have no regrets. Sam has other issues as well--possible gentetic/neuro problems, but no official diagnosis at this point. He is just about a year old, and functions at about a 3-4 month level. He is very hypotonic (floppy), he can not hold his head up without support.

Feel free to PM me if you want. I know that this is a very hard decision. i wish you the best of luck with your surgery. this has been a very rough year for us as well. You think that bringing a child into the world and watching him/her grow should be so joyful, not so painful. I will be thinking of you and your family.

thanks for the reply. Gosh Emma was born with reflux. She was scoped at six weeks and has been on medication ever since. I am not even sure if I can name all the meds she has been on. She had a reaction to prevacid and prilosec. All she is on at this point is AXID and mialax powder. In January she was scoed and they found the hernia. She has been a poor weight gainer and has a poor appitite. But she is very feisty! She has overflow. She had tubes, adnoids and tonsils out a few months ago. She vomits off and on, coughs alot you can tell she is refluxing, the swallow gag thing. On the ph probe I am not sure and at this point I am not sure what it can tell. When I called the doctor when we were released they had her on no meds. When we were admited she was on no meds due to being off the meds a week before the Probe. I called his office to check and he told me WHAT******** Put her back on the Axid until we get the results and we will go from there. WE see the sergeon Thursday. I am not sure what to ask or say. She should of looked at the Upper GI to see what is going on with her intestines if they are on the wrong side or not. I hope that helps. Thanks agian. Tired and confused. Tracy

HI, Poor Emma! I know what you mean about all the suffering they go through in such a small part of their life:? These poor little guys!

The fundo won't cure the reflux, in fact, it just creates new problems. The fundo is good for kids who are FFT, having reoccuring life threatening illnesses because of the fundo, or those who just aren't outgrowing it and it is affecting their quality of life. It is a huge surgery and your child will never be the same, maybe seem even worse if your child isn't suffering from more side effects of the reflux. If your child is though, it may help.

Since the fundo our son hasn't had pneumonia, ear, throat or sinus infections and that is why we did it, he had a lowered immune system as well because of the constant vomiting causing infections so he caught EVERYTHING. If it wasn't for those things, I dont think I would be happy with the results because he has daily tummy aches, can't vomit the reflux and tries so he gags, chokes, retches, and doesn't enjoy eating as much as he used too. But ,for us it was the right choice.

I would ask the surgeon lots of questions to see if he is realistic about the fundo. Ask if he thinks it will cure the reflux (it doesn't, just changes what happens), ask how long he thinks recovery is (it takes a long time), Ask what diet she will be on (liquids for 6 weeks, we weren't told that, and it caused more problems), ask how tight they make wrap (ours had to be dialated), ask if it will be loose enough for her to vomit if she needs too (Eli can now but that is uncommon, he had to be dialated), and ask what his success rates are and how he performs the procedure. Ask why he thinks your child needs the surgery and what benefit it will have on her quality of life.

Make sure you find out what her emptying times are as well, because if she has emptying problems (common with refluxers) the surgery could be a huge mistake without a pyloroplasty (increases emptying times).

And ((((hugs)))) Sorry, I probably just overloaded you. Please feel free to ask me anything you have Qs about specifically.

Daniel had a ph probe, too. The lowest it went was about 2.3, and he refluxed just over 100 times over 24 hours. The GI said the reflux was "significant," but he felt it was not bad enough that D should have a fundo with his G tube. The funny thing is, I didn't think he showed any outward signs of reflux at all during those 24 hours -- no wet coughs, burps, swallowing. I always wonder how things would've looked on a normal day. D also had a scope done when they placed his G tube, and it did not show any damage or abnormalities.

Becky, Parker was te same, when he had the probe I thouht he was being the best behaved he had ever been, we thought the reflux may have stooped- unfortunately it hadn't, He refluxed a lot during the test.

Hi all, I had to take Emma to the doctor yesterday and she has bronchitis. We see the surgeon tommorow. I am writing my questions, and doing a lot of thinking. I talked to my ped and she thinks it is a good dea for the wrap. She saw the reports from the scope. ph probe and upper Gi and she said with the hernia and the reflux going into her throat and trying every medication under the sun this would help her. She said she has kids who have had it and have done pretty well. I am grateful for all the info. I am so scared I am dong somthing wrong. Or is I don't so the surgery I am doing somthing wrong. I don't want to hurt her more than she has already gone through. At the same time if this can make things get better then I am all for it. She does have reflux, hernia relux in the esophagus poor eating and FTT. She has had the ear sitution but I think hopefully she has that taken care of. she has tubes three times, tonsils and adnoids taken out. Due to Celine's ear prob. The surgeon thought is was a good idea to do all that for Emma so maybe we can catch the speech delay and hearing loss Celine has from all the infections. Thanks for the ears. And any advise is welcomed or any questions you think that would help would be great. thanks and have a great day.

Hi Tracy,

Take the questions I listed for you to the surgeon and ask him those things it will give you a better feel for them. Did you read my post on the first page? I know I was late, sorry! has she been tested for emptying problems?