DownSyn Forum

TracyR · Posted: August 30 2012, 3:35 AM Post subject: PH probe results are in

Duration of test: 19 hours 51 minutes
Number of refluxes: 199 (surprisingly, 187 of them were upright and only 12 of them when he was lying down...isn't it supposed to be the opposite?)
Number of refluxes over 5 minutes: 2 (that's very good, right?)
Longest reflux: 8 minutes (I think that's also very good?)

On the DeMeester score he got 31.8 and it says anything below 14.72 is normal.

I am still waiting for the doctor to tell me what all this means. Does this mean his reflux is mild? I hope so...he has stopped taking his Losec completely. He just refuses. Confused

Anyone know what this means?

lespring · Posted: August 30 2012, 9:30 AM Post subject:

No, this is NOT a good result. 2 refluxes every 5 minutes? Take those 199 episodes and divide by the 20 hours and that's 10 episodes per hour. That is a lot. (I think normal is 3-5?) And he had one episode that lasted 8 minutes? So for 8 minutes that material sat in his esophagus. If he was laying down that put him at significant risk of aspiration.

I'm not sure about the DeMeester score results, but I think 31.8 puts him in the moderate range. He he had motility testing yet? That usually comes before a PH probe because it's less invasive. In my personal opinion it is silly to treat reflux without making sure there isn't a reason for the reflux. (delayed gastric emptying, pyloric stenosis, etc.)

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

TheBradyBunch · Posted: August 30 2012, 10:29 AM Post subject:

I would seriously get his reflux meds into him however you can. It's hard, but sometimes you just have to force it...and by force it I mean restrain him and squirt it in small amounts into the back of his mouth behind his teeth so he CAN'T spit it out. Reflux hurts, a lot. Many of our kids also have delayed gastric emptying, Noah does...so we treat both

_________________
Mom to: Nicholas (May/02), Nathan (April/04), Charlene (June/06), Noah (DS, ASD) (May/07), Jesse Lynn (July/08 ), Tessa (Apr/10), Kaitlyn (Jun/12)

"Sometimes the things we can't change end up changing us"

lespring · Posted: August 30 2012, 10:45 AM Post subject:

My son has Barrett's esophagus from years of untreated reflux. You do NOT want that. Nope.

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

TracyR · Posted: September 02 2012, 11:31 AM Post subject:

Ok...firstly, what's Barrett's esophagus?

His losec is in a capsule, so I take out the granules and give it to him in a small amount of food, but he won't take it anymore. I need to find a way to get it into him.

I am so mad. Neither of his pediatricians can interpret the results and are referring him to a GI. They BOTH knew we were doing this test, why did they wait till now to tell me we need a GI for this?! Firstly I'm plain angry that he's had reflux for over 2 1/2 years and we've never seen a GI and secondly, why didn't they tell me we need a GI as soon as we scheduled the test - AGES ago? I wonder how long it will be till we get an appointment with a GI...I emailed the doc at the Down syndrome clinic to ask him to recommended a GI because I am SICK AND TIRED of dealing with specialists that no NOTHING about DS and blame everything on it! Ugh! We had the same pulmo for a year and a half and he didn't send us for ONE test to investigate why he was getting all these lung infections. He just said over and over "yes, in these kids..." it drove me crazy. He didn't even bring up reflux OR aspiration. The professor at the hospital did. I'm glad we switched to him.

Oh - and NO, he has not had motility testing, no one has mentioned it. Is that slow gastric emptying?

Anyway...hopefully the ped from the DS clinic will give me the name of a good GI and we won't need to wait too long to see him.I'm assuming (hoping) we do NOT need surgery...what do you say?

lespring · Posted: September 02 2012, 12:00 PM Post subject:

Umm it should have been a GI who scheduled the tests in the first place. Had I known you were only seeing a regular ped. for this I would have said something about it.

Yes, the motility testing is looking for slow gastric emptying.

Barrett's esophagus is something you don't even want to know or worry about right now. It comes from YEARS of untreated reflux.

I wouldn't even discuss surgery at this point because you 1) haven't seen a GI doctor 2) his reflux is relatively untreated and you need to see what he's like after a couple months on the RIGHT meds and 3) you don't have anyone to interpret the test results so far 4) he still needs more testing done to determine the cause of the reflux. It could be just a weak LES (most common) or it could be delayed gastric emptying of which there are a couple different causes.

_________________
~Leah~

My mom's blog
http://gardenofeagan.blogspot.com/

And don't forget to visit MINE!
http://itsmylifemom.blogspot.com/

mom to Rob 26, Noah 25, Tyler 23, Bryon 23, Angela 16 (DS), Axel 12 (DS, adopted from Serbia 12/2012, AAI w/fusion) Asher 7 (DS adopted from Serbia 12/2011, AAI non-fusion)

Jare Bear · Posted: September 02 2012, 2:59 PM Post subject:

Tracy, I don't have any advice to give because obviously I'm farther back on the journey than you, but I'm interested to see how this all pans out for him as these things may be down the road for Jarom as well! I hope you'll find a way for him to take his meds in the meantime, as it sounds like he definitely needs them.

Leah, if I may, what is the motility test/what's involved with it--is it like the swallow test but just a longer period of time? I was thinking we should try the ph probe next, but it's your recommendation that the motility comes first? Our ped did say that the next step for us would be to see a GI in Wichita, where they've hopefully had a lot more exposure to DS than here in the stix.

_________________
Natalie
Mom to Alyssa '99, Shawn '01, Brayden '04, and Jarom (DS) NOV '11

JanAndFamily · Posted: September 04 2012, 7:12 AM Post subject:

Just wanted to say that I've found that when dealing with medical things in general, doctor appointments go a LOT better when I've looked into things a bit myself in advance. It's amazing how much medical information is out there on the web, and usually a couple Google searches will take me to enough web pages to know a reasonable amount about a condition, narrow down symptoms so I can make some reasonable guesses and know what conditions I should ask about in particular, know what tests are usually done for what, how they're performed and what can (and can't) be learned from them, what kind of doctor usually treats or tests for what, what kinds of things a doctor will ask about so I know what to pay attention to ahead of time, possible treatment options and their plusses and minuses,... Especially if I want a certain test or treatment and need to be somewhat insistent on it, it helps if I know what I want and why. Different doctors seem to have quite different opinions and approaches it seems, so I try to have my own opinions on the subject too.
Wink

I hope you find a good GI soon and are able to make some progress! It sounds like a good thing you got the pH probe done even though it was agony getting it in.

Jan

_________________
wife and mother of Katherine (2004) and Christopher (Aug. 2007, DS)

Tigger · Posted: September 04 2012, 8:06 AM Post subject:

Talitha is on losec tablets and I break the tablet in half and dissolve it in water. Our pharmacist told me that will keep the integrity of the active ingredients but crushing them reduces it's effectiveness. I used to crush them but Talitha hates the grittiness and refused to take them. I tried another reflux med that came in the form of granules but she hated that too so we went back to the losec tablets.

It is possible to get liquid losec. Talitha had that for ages but we had to travel too far to get it because our local chemist wasn't able to make it up. I used to put it in her yoghurt - in a spoonful so I made sure she had the full dose. Now I can put it in her nightly meds and she will swallow the lot Very Happy

_________________
Karyn
Mum to Nikki (Jul 89), Stefanie (Sep 96), Joel [June 98] and Talitha (DS) (Nov 05) AVSD/PDA repaired 23 March 06

"I will praise You, for I am fearfully and wonderfully made; Marvelous are Your works, and that my soul knows very well." Psalm 139:14