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01-13-2016, 05:58 PM   #1
DanceMom
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Ph probe

A is scheduled for an EGD and ph probe in the morning. The EGD is a breeze, but she's worried about the probe. She specifically wants to know if it will be painful or make her gag. Anyone?
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A is 12

Diagnoses: Immune Dysfunction, Hypogammaglobulinemia, Asthma, Allergies

Treatment: Privigen (IVIG), Flovent, Zyrtec, Cellcept
01-13-2016, 06:05 PM   #2
ronroush7
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I don't know. I can tag Clash. I can also tag my little penguin
01-13-2016, 06:47 PM   #3
my little penguin
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More than likely gag during the probe since its a ng tube like thing that hangs out
From the nose down the throat
So if she is sensitive to feeling things in her throat then yes
Unlike a regular ng - you get used to it Over time
She only has it in for 24 hours


pH probe/Impedance
These tests are used to measure how often material refluxes from the stomach back into the esophagus (gastroesophageal reflux). The pH probe measures acid reflux. The impedance catheter measures both acid and nonacid reflux. Your child’s doctor will decide which test will be most helpful. For both tests, a small, flexible catheter is passed through the nose and into the esophagus. The catheter is attached to a recording device. The catheter is left in place for 24 hours. During this time your child can eat and drink normally.
From

http://www.nationwidechildrens.org/ph-probe-impedance
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01-13-2016, 06:55 PM   #4
Maya142
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We haven't had a pH probe done, but my daughter has plenty of experiences with an NG tube. She thought it was really uncomfortable for the first couple days (especially the first 12 hours) and her nose and throat were sore. However, it really depends on the kid - some hate it and some don't think it's so bad.

When it's inserted, the nurses have kids drink water so it goes down more easily. Not sure if that is how it's done with a pH probe but even just swallowing while it is going down (so she doesn't gag) might help.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
01-13-2016, 07:01 PM   #5
Maya142
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Here's a blog that has one kid's experience: http://agirlandhertube.blogspot.com/...abel/impedence
01-13-2016, 07:24 PM   #6
DanceMom
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I know it is only 24 hours, but 24 hours can seem like forever when you're uncomfortable. We plan on bringing lots of fun things as distractions. She's also vomited with anesthesia before so she's nervous about that too. Just hoping all goes well.
01-13-2016, 07:27 PM   #7
Maya142
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Oh believe me - those first 12 hours were miserable for M! And that was a super thin NG tube (not sure how thick a pH probe is).

Unfortunately, there was not a lot they could do - they gave her some sort of numbing spray for her throat but it didn't help a whole lot.

Good luck - will be thinking of you.
01-13-2016, 07:31 PM   #8
DanceMom
Senior Member
You should have seen her with the throat swab! You'd have thought he was trying to kill her, lol. She'll let him swab her bottom...just not her throat! Lol
01-13-2016, 08:01 PM   #9
Farmwife
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Oh hope it all goes well.
This test was bright up for Grace but hasn't done it yet.
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I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
01-14-2016, 08:23 AM   #10
DanceMom
Senior Member
Doctor said everything looked good visually (always does). He did take biopsies and is testing for SIBO. Waiting to be called back to recovery. Hoping for a good day!
01-14-2016, 08:27 AM   #11
ronroush7
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Hoping so for you.

01-14-2016, 08:45 AM   #12
crohnsinct
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Shame they couldn't place the probe while she was under.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Methotrexate (12.5mg wkly - oral)
Vit d 2000IU
Multi vitamin plus iron
Calcium
Folic Acid
Previously used - Prednisone, Prevacid, Enteral Nutrition

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohns
Methotrexate (15mg weekly oral)
Enteral Nutrition
Entocort
IBD-AID Diet
Vit d 1000IU
Calcium
Folic Acid
Previously used: Mtx injections
01-14-2016, 09:55 AM   #13
DanceMom
Senior Member
Shame they couldn't place the probe while she was under.
They did. Says her throat is sore but she's dealing better than I thought. Lots of throat clearing and mucus. That seem right?
01-14-2016, 10:59 AM   #14
Maya142
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Glad she's doing ok !
01-14-2016, 03:55 PM   #15
Sascot
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Glad it went okay. I remember Andrew clearing his throat a lot and producing more saliva with an NG tube so it's probably normal
01-14-2016, 05:55 PM   #16
DanceMom
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Throat clearing is much better but now she's having sharp pains in her throat. Started while she was drinking. She's been drinking all day but it came on very suddenly with dinner. They've given her Tylenol and magic mouth wash which has helped some. Poor thing is miserable.
01-14-2016, 06:03 PM   #17
pdx
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So sorry that it's painful. How much longer does it stay in?
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Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
01-14-2016, 06:20 PM   #18
DanceMom
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So sorry that it's painful. How much longer does it stay in?
She has another 14 hours. She's managed to eat some of her dinner and can't stop drinking water. Has gone through 2 bottles in less than an hour and wants more.
01-14-2016, 06:27 PM   #19
Maya142
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Has she tried cough drops? My daughter's throat was very sore for quite a while with the NJ tube (much more than the NG tube - the NJ tube is thicker). She also found drinking warm water helpful. They also used a Chloraseptic throat numbing spray.

I hope she gets some sleep tonight - poor A.
01-14-2016, 06:36 PM   #20
DanceMom
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She was using throat lozenges when the pain was minimal. But all of a sudden it became intense. It was awful. The medicines they gave her helped so much though.
01-14-2016, 06:58 PM   #21
Maya142
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Oh poor A - I'm glad they were able to help. My daughter was sooooo miserable for a while with her tube, her throat was so sore.

Tell A to hang in there - she can do it!
01-14-2016, 10:17 PM   #22
CarolinAlaska
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Jae couldn't stand up straight for several days due to NG tube hurting her throat. It ended up being that she contracted strep throat at the same time
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
01-15-2016, 07:42 AM   #23
DanceMom
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She slept very little last night. Just laid quietly watching TV. Would fake sleep when the nurses came in because she "didn't want to deal with them." Lol It is very sore but she's dealing okay. Waiting for the nurse to come and pull it now. Her throat has visible bloody sores, I'm assuming from the endoscope, so I'm sure that's part of it. I'm not convinced we'll get any results from this as she only felt the reflux a handful of times. Just worried we'll still be left wondering. I just refuse to believe this is all psychological.
01-15-2016, 09:12 AM   #24
CarolinAlaska
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You don't always feel reflux.
01-15-2016, 10:17 AM   #25
Maya142
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Poor A! Glad this ordeal is over and I hope you get some results .
01-15-2016, 04:18 PM   #26
DanceMom
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Biopsy results are back already. I have not heard from the GI, only read the report online. Esophagus and stomach were normal, but "small intestinal mucosa with focal lymphangiectasia pertaining to duodenum" was noted. Googled "lymphangiectasia" and that seems to fit her perfectly but somehow was never detected before. Anyone had this mentioned in their pathology report?
01-15-2016, 05:09 PM   #27
kimmidwife
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Glad they pulled the tube out! I have not heard that diagnosis before. I looked it up. I hope they figure out how to treat her for this. Keep us posted.
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
01-15-2016, 06:34 PM   #28
my little penguin
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Never heard of it
Good luck
Let us know what the Gi says
01-15-2016, 06:48 PM   #29
DanceMom
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http://www.littleleakers.com/Intesti...giectasia.html

I found this website and it really seems to fit. The only swelling she gets though is of the eyelids.
01-16-2016, 07:21 PM   #30
DanceMom
Senior Member
A kept telling me yesterday that she had a flap of skin in her throat. Said she could feel it moving up and down when she swallowed. Turns out her uvula is swollen and is hanging down the back of her throat. Yesterday I couldn't even see where it ended. Today it is less swollen, so I can see the end, and it has bloody spots and white patches. Is this from the scope? The probe? Does this mean it is infected? Never had this before....
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