Ph Probe?

[Anonymous]

Hi all!

My DS who’s 21 months old had a endoscopy and PH probe done. The only thing I was told before we left the hospital is that he is a 12 and normal is under 4.

The Dr. never called me back today to fill me in and now I have the whole weekend to wonder….

So, I’m turning to you to help me out. He scored a 12 on 20mg of Nexium.
He wakes up every 2 hours screaming in pain. Almost 2 years of this crap! I hope the Drs. figure out what to do.

The nurse mentioned some kind of wrapping procedure. Does anyone know about that or what the best kind of procedures are out there for children?

Thanks so much!

[Anonymous]

the wrapping procedure is called nissen fundoplication. it is when they wrap top of the stomach around the botom of the esophagus and stitch it into place, creating an artificial valve. there is also a partial wrap called a toupe wrap that they use on children with motility problems. the fundo can be done open or it can be done laparoscopically.

my daughter, sylvia, had a nissen fundo just before she turned 10 months old. she had a hiatal hernia, although we did not know this going in to the surgery. it was discovered when they got inside. her surgery was done laparoscipally. she has five tiny little scars that you can hardly even see.

i’m not sure what they meant when they told you that he was a 12 and that normal is 4—unless they meant the % of times that he was refluxing. sylvia was refluxing almost 25% of the time and her esophagus was getting ulcerated, she was anemic and she was failure to thrive.

her surgery was a total success and she has not had any complications from it. she cannot throw up, but she can burp.

i also have severe relfux and will probably have the same surgery done myself—-our local surgeon told me about 12 years ago that it was just a matter of time before i would need to have it done. i don’t think it will be this summer as we already have major medical bills to pay from 3 other surgeries and i have just recently had a case of MRSA—-not overly thrilled about haveing surgery so soon after dealing with such a bad infection. my body is still recovering from dealing with the infection and the antibiotics. maybe next year.

[Anonymous]

Thanks for your reply. Gosh, that’s a lot to go through.

I did some research and the fundo is not something we want to do. It sounds really invasive and the side effects are way worse than what we are dealing with now. Not being able to throw up scares me.
Sylvia’s reflux is way worse than my sons.
How is she doing now?
Is the reflux gone and is she all better?

In doing my research I came across the Transoral Incisionless Fundoplication using the Esophyx Surgical Device.
Basically it’s the new way to do the fundo. Much safer, more effective and much less invasive.
I just hope I can find a Dr. to do it on my son.

Gotta make dinner now, lol!

Thanks again :o)

[Anonymous]

sylvia is doing very well now. she continued to be failure to thrive and actually started refusing to eat and twice there was discussion that she might need a g-tube placed because of lack of weight gain. they had not placed a g-tube originally because she had been a good eater.

7 weeks after surgery she weighed exactly the same as she had on the day of surgery. she had developed esophageal thrush and would refuse to eat, or chew her food and spit it out. she would only breast feed. once we cleared up the thrush, she started eating, sleeping and gaining weight. then she got sick. she developed obstructive sleep apnea and an inguinal hernia. obstructive sleep apnea can cause failure to thrive because they never get into the deepest stages of sleep, which is when you produce the growth hormone.

a week after she turned two, weighing only 22lbs., we had her tonsils and adnoids removed—-and another child had a scope done–busy day. she has done wonderfully ever since then. she recently had to go on antibiotics for the first time in a couple of years.

we were given phenergen suppositories for nausea since she can not throw up. the first time she got sick and started wretching it scared me to death because i thought she was choking. she sometimes will tell me now that she has to throw up—-and i tell her that she can’t throw up, but she gets as bowl out and spits into it.

i have read that if there is ever a time when they REALLY need to throw up, you can take them to the ER and havea a tube put down their throat.

it made such a difference in her health having the fundo done that i would do it again in a heartbeat.

i have recently seen two new procedures they are promoting for reflux that do not require surgery—but i wasn’t sure they were being used yet. i think, though, that even with those procedures a person would not be able to throw up.

our ped gi told us that most people with fundos eventually figure out how to throw up.

it would probably be a good idea to get copies of your son’s tests and an explaination as to what the 4 and 12 mean. if you ask for a copy of the results of the ph probe, they will probably just give you an explaination of the results. there is also a graph that is done that is really neat to look at—but you have to ask specifically for a copy of the graph of the ph probe, not just report.

kevieb2009-05-16 20:57:41

[Anonymous]

Wow, (((HUGS))) to you all. That is a whole lot to go through.

It amazes me how bad reflux can be, because I don’t think most people have a clue. After two years my family is just starting to realize that it is a lot to deal with.

My son is having learning delays and I believe it’s due to lack of sleep. He consistently wakes up through out the night. It sucks! We are all so sleep deprived.

I’m going to look more into the side effects of the new procedures. I know there is a Doc. in north Fl. who has done the TIF on a 10 year old boy. Not sure if it’s available for 2 year olds yet though.

We looked it up, and the PH scale is what they were referring to. The scale goes from 0-14 with below 4 being normal. Josh was a 12. That seems pretty bad to me, but I have to talk to the Dr. to be sure.

Thanks for the info. I plan on getting all of the reports and the graph sounds like a very handy tool. I’m gonna switch GI’s again too. This guy never calls me back and the hospital he works at is horriable.

Thanks for chatting!

[Author]

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