Hi, I just joined and this is my first post. My 14 month old son just saw a pediatric gastroenterologist yesterday because he's been having shaking spells ever since he was 3 months old and they think they might be secondary to reflux. They are doing a ph probe test on him in a few weeks, and the brochure they gave me wasn't very informative about the details of the procedure. It mentioned that if you were issued protective arm restraints to be sure to return them; is this standard operating procedure for young kids? My son definitely would not like having his arms restrained. He won't be admitted to the hospital; we are taking him in one morning to get it put in and then returning the next morning to have it taken out. If the arm restraints aren't used though, how do they expect me to have him keep the tube in? Has anyone else gone through this? If anyone can give me any advice or information I would really appreciate it. Thanks in advance...

By Amecmom on Thursday, April 22, 2004 - 09:42 pm:

My son never had a ph probe, but his ped. gastro diagnosed reflux from symptoms alone and started him on zantac. He said if that didn't work we'd go from there with a probe. The zantac and management techniques worked, so we never had to do a probe.
Does the dr's office have a nurse or other person who might be able to give you a description of the test? Your best bet is to call and find out. Good luck.
Ame

By Emily7 on Thursday, April 22, 2004 - 10:26 pm:

All the ph probe does is measure the amount of acid that passes from the stomach through the esophalgeal sphincter. When they did this on my son they put the probe down the the nasal passage. My son was admitted to the hospital because he was having other tests done. They never used restraints for him! However my son was only 3 & 1/2 months old. Have they done any other tests? What kind of meds is he on? Have they checked him for allergies? I have never heard of shaking being a secondary for reflux. How long has he had reflux, because generally it better when they can rollover & sit up on their own. My son was on meds for it, until he was 15 months old. He was on reglan & bethanachol last along with the formula Neocate ( at a year Neocate plus). He had been on prevacid, zantac, & prilosec before. Thank goodness for my daughter it has just been zantac.
Feel free to e-mail me if you have any questions!
Welcome to Moms View

By Toronadogirl on Thursday, April 22, 2004 - 11:10 pm:

Thanks for the replies, I really appreciate them! He saw a neurologist a few months ago, who suggested it might be reflux, and he said that it probably wasn't any type of seizure because they're not very violent spells, just tremors, but that on the slight chance that they were seizure activity reflux meds might bring them out worse. The only other tests he's had are 2 EEG's which were both normal. I was of the understanding that they were going to do an upper GI at his appt. the other day but they didn't mention that at all. He's had the shaking spells since he was about 3 months, but it wasn't until about 9-10 months that he started getting them alot while eating solid food; that's what makes them think that it could be reflux. He isn't on any meds other than his multivitamin w/ fluoride drops, but they haven't checked him for allergies, and now that you mentioned that, I will have to ask them about that possibility because his father has allergies and is lactose intolerant. The gastroenterologist said that it could just be behavioral, just something that he does, but it doesn't seem to coincide with him being mad or anything. Thanks again to both of you, I'll post an update as soon as we find anything out.

By Pamt on Thursday, April 22, 2004 - 11:56 pm:

My son had this done last year at age 6 and he did not have restraints. However, he was also old enough to know that if he messed with the tube that they would have to insert it again and he did not like having it put in. My son was not having other tests, but was kept in the hospital overnight. The doctor said that the probe and monitoring device costs over $20,000-30,000 and they used to let kids wear it home and come back for removal, but had more than one case of kids pulling out the probe and dropping the unit in the toilet and the like, so now it's an inpatient only procedure.

The probe wasn't uncomfortable being in, just a little uncomfortable being inserted. Once it was in he could play, eat, drink, etc. but we had to stay at the hospital. Also I had a chart and I had to write down everytime he coughed so they could see if coughing was occurring during his reflux episodes (it was). Removal was a bit uncomfortable too as they are pulling a tube covered in stomach acids through your nose, so it burns a bit. All in all it wasn't too bad and it was a good way to measure how often reflux was occurring. As a result my son is on 2 meds now, but his esophagus is back to being pink and healthy again.

By Emily7 on Friday, April 23, 2004 - 12:18 am:

Generally reflux is worse with liquid, I had to try to thicken my sons formula.
Pam did your sons device have a button that you pressed when he was having a reflux spell, along with keeping a log? It is so funny that they would drop them in the toilet, I guess that is one way to tell you what they think of the test.
I am very surprised that they have not done the upper GI or a swallow study first.
Please keep us posted!

By Pamt on Friday, April 23, 2004 - 12:26 am:

Emily, the pH probe is really the definitive benchmark test for reflux as far as telling how much acid is coming up and how often, esp. since reflux is being measured over a 24 hr period. Now it is often, but not always, done in conjunction with other tests. However an upper GI and/or swallow study can occasionally detect "an" episode of reflux if it occurs in the small window of time, but often misses the reflux episode since the radiation exposure is limited. My son's swallow study (age 10 mos.) only indicated that his stomach was emptying slightly slower than normal. It wasn't until he had endoscopy that the damage to his esophagus was noted, followed by extensive allergy testing, medication, and a pH probe. The pH probe was what really revealed the problem and FINALLY (6 years later!!) got us on the road to recovery.

By Emily7 on Friday, April 23, 2004 - 10:27 am:

My son within a 48 hour period had the swallow study (not fun), the ph probe, & an endoscopy with biopsy. 3 weeks earlier he had an upper GI. The endoscopy was the last test given. He was not a happy camper nor was I. I didn't understand the need for all the tests, if the upper GI showed reflux, then obviously he has reflex. The doctor then told me they were considering doing a Fundoplication(sp).

I can't imagine going 6 years with this. I walked into my sons doctors office she held him for a second & said he has reflux. See how he is arching his back. We went through the other symptoms & started treating him for it as soon as the upper GI results came in the next day. Three weeks later we were on our way to Denver to see a specialist. He wouldn't gain weight.
We were in the hospital for a week!

They have only done an upper GI with my daughter, thank goodness.