Posted By Posting
Nov 16, 2008
emibug
Kathryn, Pager Volunteer and mommy to Emily Mia 02/04/07. 3 years old with GERD. 30mg Prevacid and Pepcid AC. Mylanta needed for flares. Failed prilosec med switch. Tried and failed many med weans but GERD and pain are well controlled. Functional constipation. Reoccurring SBBO. Suspected IBD or autoimmune disease. Resolved issues: MSPI, CSID (acquired), Stage 2 kidney reflux, Chronic diarrhea.
Audrey Meadow 06/20/08. born 34/35 weeks. Still b/f and eats everything! ftt and chronic constipation.
jedd's mom, impedance
i am strongly considering Impedance Probe for emily- i am not entirely sure that it is all acidic reflux she is having. I wish i was but i am not. I am about to consent to a ph probe along with a DGE scan which will admit her to the hospital the day she will have her EDG and colonoscopy. Right now she is just outpatient for only EDG and C.

The doctors say that PH is the best and that if she is refluxing hours after eating that it is due to DGE and that the DGE scan will show it. I would love for her not to have 2 extra tests, (or more tests then necessary). I am thinking Impedance will kill two birds with one stone?

Did Jedd have a Ph probe and a DGE scan?? Could you tell me your experience in dealing with the differences of those test vs Impedance Probe? thanks!
Nov 16, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
First off, DGE Scans can be very unreliable. Unfortunately because of that ALOT of Drs will DX the DGE from symptoms. I/E. if the hcild is having lots and lots of vomitting quite a bit after feeds then they will go ahead and say the child has DGE.

Jedd's 2 GES (gastric empyting scans) came back as normal. His Manametry testing of the movements of his GI tract did show some periods of slowness. Teh Manometry testing is THE most reliable way to tell fro DGE but you don't want to do that on a child withotu a G tube. IT's not fun.

Our old ST her DD had the test done without a G tube and it was horrible. The probes have to go down the nose and into the intestins instead of just through the G site. They did it and was however glad they did, becuase she was pretty slow in her motility.

If you have that many things going on, I would see if you can get a referral from your GI to go ahead out of town to get all fo the testing done in one shot. We decided we either wanted to go to Bostons Childrne's Hosp. or Nationwide Children's in Columbus. We opted for Nationwide because family lived closer.

Those 2 places are THE elading hospitals in Motility issues. Not only motility oissues of the GI tract but they also do Colonic Manometry so they can see if the Colon is moivng properly but also Espophageal Manametry to see if the esophagus contracts properly.

The Ipendance probe is actually calibrated to the child's PH levels. So each time the machine is exactly set for that child. You have a "constant" in the room. A person who is trained on how to input into the machine the times when the child is eating, laying down, walking, buping, coughing, gagging, ANYTHING the chidl does is entered into the machine. The start and stop times as wella swhat the chidl eats is also entered into the machine. The food itself can play a part of how acidic what comes up is. So everytihng is logged.

Our constant was pretty busy while Jedd was awake, because we wanted him to run around the room like normal....LMAO You saw the pictures on the other thread of him climbing up the window right...LOL I even had a wagon and would wheel him back and forth the room and would wheel him back and forthe the doorway of the room as far as we could go. I'd say we had about a 10foot leash.

Nov 16, 2008
jedd'smommy
Jessica, Mommy to Jedd, severe reflux, severe food and oral aversions, Finally G tube free!!! VSD repair 4-24-07 (open heart surgery), hypospadias, repaired 3 times and Ear tubes Visit Jedd at his CB site: www.caringbridge.org/visit/jedd
Some more stuff, wanted to break it up some...
We had a GES here at our home hospital CHKD and they had me tube Jedd with about 2 ox of his formula (alimentum at he time) with the tracer in it. He had to be straped to a back brace board so he woudl keep his belly under the machine. He was scanned for about 20 mins. He watched a video for it. We were allowed to go about the hospital for about one hour and had to report back for 5 more mins of a scan in the same way as before. During the one hour time frame we were told NOT to give him anything to eat/drink/tubed. After that we were done.

At Nationwide he had a GES done on solids. I gave him 2oz of soids in the tube with the tracer and the rest was pretty much the same way except the scanning part. They only scanned him for about 5 mins the firts time and 5mins the next time.

Now the IMpendance probe will not DX a motility issues at all. But it can tell if the reflux is acidic or non-acidic so in that regards it is a more reliable test for ahcild who is suspected of having DGE.

Since you are having issues with constipation, it may be in your best interest to find a hospital that can do a colinic manamoetry test on her. I know some how have gone through this as well. The test will measure how the colon and lower part of the GI tract contracts to move the stool out of the system.

That test would tell you exactly what is going on for sure. Since there seem like there may be multiple issues going on, that is why I said originally that it may be worth looking into a hospital taht can do extensive testing and get it all done in one week while in-patient.

I'd ask for a Colnic Manometry and a GES and an Impendance. Nationwide or Boston children's can both do those. Not sure how close to those places you are (Boston Mass. and Columbus Ohio) There are other places but those are the 2 best in the Nation.

Nov 16, 2008
mollybeth
Cooper was born 12/19/07. Birth weight: 7lbs10oz. Weight as of 2/11: 8lbs9oz. 6/23: 14lbs12oz! Struggling again 12mo: 18lbs. Breast Fed exclusively, on strict elimination diet until Dec 08. MSPI as well as other food intolerances Diagnosed w/ GER at 5 days following barium swallow. Choking with apnea spells. Ftt. dx w/ Laryngomalacia following brochoscopy 1/29. Aspiration. apnea monitor until 5mo. pH probe 1/29 showed severe reflux. Sandifers Syndrome. lbrady and tackycardia. echo and EKG 2/18: Came back normal! Swallow study 2/29: some NG reflux. Unexplained seizure 4/1. Negative CF sweat test 4/4! EGD 11/19: reflux damage in esophagus. pH probe 11/19, reflux improved. Safe foods: pears, apples, peas, rice, small amounts of chicken, potatoes, and carrots.
Currently drinking Elecare vanilla 30cal/oz and breastmilk.
Meds: Nexium 10mg 2x daily. Carafate as needed, miralaxx as needed, probiotics daily
Sorry to barge, but I have a question too. Cooper had the impedance at 5w. We stayed in the hospital, but I was briefly trained to work the machine and had a log to fill out as well. It was the longest 24 hrs of my life b/c he was refluxing ALL the time, I mean literally the whole time. This time, they are doing the impedance again, but sending us home, or actually to a hotel b/c the childrens hospital is 3hrs from home. Anywho, I ave been very nervous about going home like this. It was hard enough in the hospital and he wasn't mobile. Plus it is not nearly as easy to identify the reflux as it used to be as he acts less disturbed by it. Urg! Now I'm not sure what to think.

Kat, I don't know about the scan, but if I were you I'd do the probe since she will already be under anyway. It is a good opportunity and that way you can regulate her meds for the reflux she is having. JMO
Nov 16, 2008
jenrackley
PAGER Volunteer Services Coordinator
Nutritionist
Melina 7/24/02 now reflux free!!
TWINS:
Ella 5/3/05 GERD, asthma, hypotonia, food intolerances, esophagitis, IBS //
Ava 5/3/05 asthma, food allergies
Pic: My girls! They are getting so big!
Thanks for all the info Jessica! I have been writing a list for our GI apt Wednesday and that gave me some more idea. ;)
Check with your
doctor first!