Posted By Posting
Aug 04, 2002
Heather
24 hour acid probe
My daughter's condition is so-so on the new medicines. She is still having pain and eating very little. She often says she is going to throw up but it goes back down. We saw the GI at the hospital last Friday and he suggested another 24 hour acid probe. We are looking at Reglan and maybe surgery and of course neither is a perfect "solution". My question, how do I get my three year old to comply with the probe for 24 hours. What have other parents done to make it successful? The last time she had a probe she was an infant and could not have pulled it out even if she had wanted to do so. How uncomfortable was the insertion? I personally think the prbe is a very good idea. The endoscopy a few weeks ago basically told us she has esophagitis. At least the probe determine if the medicine is effectively neutralizing the acid. On a totally different front to what extent has reflux for 3 and 4 year olds interferred with their ability to attend preschool a few times a week? Her relapse (if you could call it that)started this Summer. I do not think the teachers will be too thrilled with a child that says she is going to throw up with once in a while. Thanks for any input.
Aug 04, 2002
Sandra Ringelstein
pH probe
Hello Heather. I'm sorry that I do not have specific advice for you on the probe for your daughter. My son (only child) had the probe as an infant as well. I haven't had experience with an older child yet. I hope everything goes well and you find there is a reduction in acids. If no one comes forward with advice you might try the pediatrics ward at the hospital. I would call and see if you could talk to a nurse. They have probably seen this procedure before and they might be able to give some advice or at least tell you how they handle the situation. I wouldn't worry about pre-school too much. I think if you make everyone aware of the situation they would handle it no differently than when a child has to go potty all the time. I mean that as long as they know what they are dealing with I am sure that someone will comfort her and take her to the restroom. Good luck. If you get any good information please share it with us. Keep us posted on your daughter's progress. Sandra, mom to Clarke (19 mos, hypotonia, dev delay, reflux)
Aug 05, 2002
Anne
coping with probe
My son (18 months) just had a probe a month ago. Initially, they put 'no-nos' on him--they're splints from the wrist to the shoulders, tied in back so the child can't shrug out of them. That was a nightmare. We dressed him in long-sleeved PJs, taped socks on his hands (about at elbow level) so he couldn't yank the nasal tube out, and put the little recording device in a backpack on his back--it went so much better than I dreamed it would! The nasal tube was well-taped onto his face, and the socks were well-padded at the fingers, too--there was no way he could pick at the tape or the tube. Good luck!
Aug 05, 2002
Susan Gunther
Message for Heather
Hi Heather. Unfortunately I don't have any experience with a PH Probe on a 3 year old. But what I can't understand is that if you know that your child is refluxing for a fact and has esphagitis already, why would the dr put your child thru another ph probe? Its just a thought. As far as possible surgery is concerned, I've been exactly where u are, and it drove me crazy about the thought of Andrew having surgery. What I did was get a second opinion from a top GI in my State. He ruled it out completely and that took a load of worries off my mind. Finally, I'd definitely recommend you sitting down with the teachers and explaining the circumstances with them ahead of time. Whether or not they are "thrilled" really isn't point. Understanding and being supportive of the problem is what counts more. Hope this helps. Susan Gunther Mom to a 3 year old Andrew- A silent refluxer with other GI complications.
Aug 09, 2002
Anonymous
Probe
Hi again, My understanding is the probe is being done again because she is still in pain in spite of the medication. I think the doctor wants to see if the Prilosec and Zantac are at the most effective doses. She still has so much discomfort/pain, very limited appetite and most recently a greatly increased amount of vomiting. Depending on the probe results Reglan is still a possiblity. Right now we are avoiding it. It has also been mentioned to us that maybe more is going on than reflux. She is really wiped out right now. We may put our departure for a week out of town on hold. We will wait and see how she does the rest of today and through the night. Thanks for everyone's input and support.
Aug 15, 2002
Logan's Dad
Please tell us how it goes
We have Logan, 20 months with GER and the past week has been horrible, like the Prevacid isn't working anymore. We are going to look into testing and the Thal procedure. Please let us know how the testing goes and the new plan. - Glenn
Aug 22, 2002
Heather
24 hour probe - so far so good
Just an update... my daughter has finished the first day with the probe and will return to the hospital mid-morning to have it removed. She has made it much easier than I was expecting. The first time she had the probe inserted it took three attemps. She was a newborn and it was unpleasant to watch. That being my previous experience, I was worried about what to expect during insertion now that she is 38 months old. She just sat there like such a trooper. She did not even flinch. I could not believe how well she did. (What a gift to my husband and myself). The day has been very long but so much easier than expected. Of course, we could not leave her alone in case she moved around or started fiddling with the data box. Since she has not tried to pull it out we have avoided much of the anticipated stress. We will get her results in a day or so.
Oct 08, 2002
Anonymous
ph probe concerns
My son willbe 4 in a month and they want to do a ph probe and we can't do it. He is so strong willed and to see him in restraints is more than we can take. His dr. said he will admit into the hospital so it will be easier but they cannot sedate him to make comfortable. They also want him to have a fundobut that seems so barbaric (the side effects). We do not know what to do. He has severe esophagitis and that can eventually turn into cancer.We are so upset-it is good to find other people who are dealing with the same scary issues.
Nov 17, 2002
valnmicker@aol.com
ph probe with older kids
hi, my son is now 22 months old but had a ph probe at 6 months, 10 months and one and a half years old, he did just fine, in fact at 6 months he actually pulled out the probe and the last 2 he left alone, i bought him "onesies" so that i could put the part you have to carry around with you in like a back pack, this way he didn't bother with that, i also had the nurse tape the probe behind his ear and at the back of his neck so that didn't interfere too much, then i tried to keep him preoccupied as much as possible so that he did not have time to think about it, we went shopping which was good b/c he was confined to the stroller and he loves to people watch, i took a nap with him when he did tire out so that i was right there when he woke up to make sure he didn't touch it, as for if it is painful or not, i can't tell for sure but i do know that he didn't start crying until we held him down and he stopped as soon as we let him up again so i don't think it is too bad, hope this helped, good luck to you, if you want to chat more you can email me at valnmicker@aol.com, take care . . .valerie
Dec 27, 2002
Anonymous
24 hour acid probe
My son who just turned 5 had this study done 4 weeks ago and did very well. having the probe put in was not fun , they had to hold him down because they do not sedate children for this procedure. Once the probe was in it did not seem to bother him very much . I basically let him choose what he wanted to do until it was time to go to bed. I did sleep with him so that I could report any happenings during the night that were out of the ordinary. I think the best advice is keep busy! Good luck!
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