I just wanted to share our experience with the PH Probe. The thread that Minnie posted about Eric’s probe was very helpful to me, so I wanted to do the same for others.

Getting the probe in was not as bad as I thought it would be. She wrapped Sebastian in a blanket so he could not get at it and then she quickly inserted it. He did cry and squirm around (I made dh hold him down) but it was just and unhappy cry not his major pain cry or really scared cry. As soon as I picked him up he calmed down.

We then had to go down to x-ray to make sure the probe was properly placed. This only took a few minutes and then she taped it securely to his face. He cried more for this then he did having it put in.


The unit was in a little pouch that had a shoulder strap so we could not put it on Sebastian we had to carry it. I think the back pack would have been easier though I don’t know if he would have been able to keep it on or not.
We were given a piece of paper to mark every time he ate, burped, spit up, or had any other noteworthy episode. Sebastian is not much of a spitter. He usually chokes and coughs so I wrote those in the other column. Also, he had one instance of his head spasm thing that he does so I wrote that as well. There was a button on the unit that we had to press to get the time and it also showed an icon that looked like a video tape so I think it was recoding when we pressed it. They did not explain how the machine worked at all.

For the most part the day was uneventful. Sebastian seemed to forget all about it ounce we got home. He loved sucking on the wire but that was about it. It was very exhausting for me because I had to follow him around with the unit everywhere he crawled. He is a very active baby so that made for a long day. He thought it was pretty cool having mom right behind him. He would stop and turn around and give me a big smile and then take off again.

The biggest problem we had was sleeping. During his nap he got the wire wrapped around his neck three times. I shortened the wire by wrapping it up and tapping it and night. And put him in our room to sleep, but I was still nervous and ended up not sleeping much and checking on him a lot. He woke up at 5:00 and I was hopping he would go back to sleep. He started sneezing over and over and then chocked a little bit. I ran over to see what was going
on and he had pulled the wire out.

When I took him back in the am they said it was fine. They said they really only need 16 hours to get good data, but prefer 24. He had it in for a total of 21 hours so he was fine.

I am glad that we did the test. Even if it dose not change anything at least I will know for sure what is going on. I am tired of all the speculating and trial and error. I feel like it will take the pressure off of me. I have been doing so much research and analyzing all of his symptoms. It will be nice to just have a straight answer for a change.

It was more of a major inconvenience then the traumatic experience that I was worried it would be. I think the younger the baby the easier it would be. It definitely would have been easier if he was not crawling and could still sleep in his swing. I would not have had to worry about anything then.

If anyone is worrying about the test for their child and has any other questions for me feel free to ask. My dr. did not tell me anything to prepare me for it, and things are so much less scary when you know what to expect.

Here are some pics of what it looked like. I hope the link works

http://www.kodakgallery.com/Slideshow.jsp?mode=fromshare&Uc=4ozhruc4.2zep6b2s&Uy=-ux1e8q&Ux=1 (http://www.kodakgallery.com/Slideshow.jsp?mode=fromshare&Uc=4ozhruc4.2zep6b2s&Uy=-ux1e8q&Ux=1)

Thank you for sharing your experience witht e others that maybe getting one did. It was very helpful. What do you get the results back? Please update on them when you can!

I am glad that we did the test. Even if it dose not change anything at least I will know for sure what is going on. I am tired of all the speculating and trial and error. I feel like it will take the pressure off of me. I have been doing so much research and analyzing all of his symptoms. It will be nice to just have a straight answer for a change.



Katey,

I am glad it wasn't too much of a hassle. Allie did okay with hers too, except she stopped eating (I think b/c we took her off prevacid for three days ahead of time).

However, be cautioned that when you get your results, you may not get the answers you wanted.

They saw Allie's results and said it was no big deal that she refluxed 248 times in 23 hours. They said since she cleared the episodes and the ph levels weren't that bad, that her reflux is not bad at all. Well, we know it is bad b/c she refuses food constantly, gags and chokes when we try to wean her off prevacid and reglan, etc. So, it really DID NOT give us any answers at all. It just made things more confusing for us b/c according to the doc, her reflux is "normal" but according to Allie, it is not.

I hope it does give you some answers, but when you get the results, you may be more confused than ever (I know we were).

Christyn

Thanks for posting!
WOw your machine and everything was so different from Eric's. No arm band thingys?!?
I'm glad he didn't have a hard time getting it put in. (big sigh of relief)

Isn't it funny how both of them handled the probe so well all day? I really do think Eric liked all the gear. He was so proud of it all.

I'm so happy that your guy did well too. I really thought Eric was going to be a terror all day, and I'm sure you thought the same.

I hope your results give you some insight into your child's mystery belly!!!!

(I got my results only after one day!!! I hope you don't have to wait long either)

Chrystin, How long did it take for Dr J. to get back to you?

If we find out the reflux is not that bad I have no idea what our next step will be. It is not normal for him to be choking and sounding raspy all the time and he is still doing the thing with his head that I assume is Sandifer's. He has been off the reglan for over three weeks so I don't think it was a side effect. If it turns out reflux is not him problem then I have no idea what it wrong with him.


I am trying not to stress about it unitl I find out the results. I hope she will not make me wait too long.

Katey,

We got the results the same day Allie had it taken out. Do you have her nurse's (Chris) phone number? I called her to get the results (but remember, she is not that great about returning phone calls and only works M-W). Once we found out the results from the probe were "normal" then they scheduled our scope, which also told us nothing (no damage, which is good - maybe prevacid is working after all?). However, we know based on Allie's behavior off of her meds that her reflux is pretty severe (at least to her anyway, who cares what the test results say - maybe she is a wimp like her mommy?) so the tests really told us nothing. We did later find out she has severe DGE (remember, Dr. J. would not run the scan b/c she is not a puker) so that could be causing all of her aversions to food (I'm not hungry, why are you trying to feed me?).

We have another emptying scan scheduled tomorrow at Genesys. I hope I can get her to lay still for one hour.

Good luck on this roller coaster ride. Let me know what Dr. J says to do next. I'm still wondering why she never did an upper GI to rule out any physical abnormalities. I know what you mean about your son's symptoms, we can't figure out why Allie acts the way she does with food when according to her ph probe results, her reflux is normal.

HTH, but it probably didn't. I honestly don't know what helps anymore. If your son doesn't have problems with eating, I would say continue him on his meds and wait to see if he grows out of it. It seems that most do, and the non-eaters (like Allie) are the ones who take a long time to grow out of it.

C

Thanks for the info!
My ds will be 3 soon, and I wish we did this earlier
I hope you get the results soon and it wasn't a horrible experience

Thank you for posting Sebastian's experience with the ph probe. It is so helpful for parents!!!

:hug:

BTW...he is so cute! Love his eyes.

Hi katey,
Thanks so much for sharing your experience. My son (18 mths) is finally having a Ph probe done next week. We are in the Uk, so I don't know if it'll be different. Interesting to hear you say that Sebastian always sounds raspy. My son does too. What other symptoms does your son have?
Thanks
beth

He coughs and chokes a lot and has a stuffy nose all the time. He has wet burps where I can hear him swallowing the "stuff" back down. He dose not seem to have much pain anymore and finally is sleeping pretty well, so it is mostly the respiratory stuff that I am worried about. I want to make sure that it is not going to cause him damage.

I hope things go well with you probe, and you get some answers from it.

Thanks for posting that, I wish I had had IRD to refer to when Ava was born, but we also had no time to prepare for it, she was 1 day old when she had her first one. I think that will really help a lot of people, thanks again!