Posted By Posting
May 03, 2010
jean9
when/why repeat endoscopy?
my dd libby (FTT b/c limits volume,GERD-just 21.5 lbs. at almost 3 yrs old-just increased prevacid to 15 mg solutab PM and 7.5 in AM, miralax. therbiotic probiotic) is losing weight b/c we're trying to 'test' for casein intolerance by putting her on elecare vanilla. she was on pediasure boosted with, aton of procal & duocal powders &corn oil, which we had stopped doing thinking it was slowing digestion & deceasing her appetite. so with cutting her cals/oz in half she's naturally losing weight since she's not making up for it in the solids she's eating.--banana, apple, animal crackers, watermelon, cheerios, kix, pasta, soy yogurt, eggs, toast, jelly, butter)(we're attempting some SOS -sequential oral sensory- feeding therapy techniques from STAR center/Dr. Kay toomey in the meantime)

anyhow, her only endoscopy was 1.5 yrs ago while on pediasure and prevacid-showing slightly dilated LES, but no inflammation or concerns re: biopsies. DO we repeat it? Would the results be that different? Is it possible it was not accurate the first time? Should she not be on her PPI for it? are there other tests they can do at the same time?

we're VERY stressed and keep praying that we're making the right decisions for her. It's been 1.5 yrs since the 1st gtube recommendation. we know gtube doesn't mean failure, but we feel we've gone this long... and just NOW learning about food intolerances. why didn't anyone mention it before?? What other avenues are out there that we haven't heard of/gotten to explore??

not sure how much time we have left... she can't afford to lose weight... we just KNOW there's more happening to her than JUST GER!! Would more testing actually be worth it? What tests?

previous DGE scan said "normal"---- upper GI showed severe GER, dilated LES, constipation. we've tried periactin, reglan twice, EES, and PRAYERS!!! She still can only tolerate a limited volume liquid or solid-the giant question is WHY??? gtube won't solve that--may make it worse?!!?????

consider gj tube? so scared of surgeries... i mean she's eating orally with no life-threatening episodes (minus weight loss now!), no other dev delays.

what to do... where to go (currently at cleveland clinic-our 3rd opnion)... how long to wait... wait for what?? the casein intolerance 'test' should be observed for 6-8 weeks i guess...

UGH! thanks for your help!

May 03, 2010
jeddsmommy
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
IF she was "eating" some types of solids prior to the first scope, I wouldn't do another one. Chances are, if there was no damage then and you have stayed on meds, there is no damage now.

It can't hurt by any means, it's an easy fast and reliable test, so if it will make you sleep better, then by all means, do one. KWIM. Esp since it seems she is taking a much bigger variety now than then.

This is MHO but I'd do a tube. Don't feel like you are giving up. A tube buys you TIME.......growth and development are the number one priority and it she not getting it in now....you really need to get it in somehow.

It was the BEST decision we ever made for Jedd. We don't regret it for a minute. I know literally hundreds of tube feeders online and I can't recall a single one who regretted getting one.

That said, if it's just a matter of Feeding Aversion, I'd try dropping her into a full time Feeding clinic first. You can hassle with the insurance co by telling them, it's either they pay for the clinic or they pay for a feeding tube.

When caught between the two, they will probably cave and pay for the clinic. In the long run, that will SAVE them money on their bottom line and I hate to say it, but insurance co are all about saving money. See how it adds up fast.... Do you think she is absorbing the food properly??? You can always do tests for malabsorbtion. I know there are others here who know more about that then me.

I would hop right to a GJ tube yet. You can always go to continuous overnight feeds in the G tube and see if her eating orally during the day and the feeds at night are enough to get her gaining first.

It's my personal opinion that GJ feeds are for kids who have aspiration issues or have severe DGE or some type of nerve damage to the stomach and need the stomach bypassed all together.

I know a gentleman online who knows quite literally EVERYone in the feeding aversion clinic community. If you want to know more about him just let me know via email... onion95@gmail.com

I have the utmost respect for this man, and have never ever heard him steer someone in the wrong direction. I believe he teaches at Penn State now...or was the last time I checked. He is extremely knowledgeable in this area. I have seem him list off dozens of clinics that he trusts to have GREAT outcomes for children.

May 03, 2010
jeddsmommy
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
Just wanted to add..
I don't understand why they are using Elecare now.....I would think they would want her on a normal diet, then scope her to see if there is anything going on...I'm slightly confused....LOL

does she seem to be doing better on the new diet??

Even if she is....keep in mind that if you have her on that diet for 6-8 weeks and then do rescope her....you can get false results.

May 04, 2010
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
Sometimes it is worth repeating an endoscopy. Our son had one (normal) at approx. age 1. He continued to have problems and the second scope, at age 2 1/2, showed increased eosinophils in his esophagus (EE). He also has regular food allergies & reflux. I'm sure you realize that a problem with casein would mean a problem with butter. Has she been tested for food allergies? Keep in mind that with EE, the foods that are problematic won't show up on regular allergy tests, unless your daughter is also allergic to them. If it is all intolerences or reflux related, I have less experience in this area. Just wanted to let you know my experience with scoping. Sorry it has been so hard. I know the feeling and will probably cross the gtube path someday in not too distant future, as my son has no "safe" foods.
May 04, 2010
jean9
reply
we chose to switch to elecare to rule in/out casein intolerance.

just wondering if we should try other tests..

also, a dietician told me the amount of casein in butter is minimal.. true?

we did skin prick allergy testing showing hayfever, but no real food allergies... intolerances is another thing I guess...

May 07, 2010
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.
just my 2 cents... but any casien is still casien. it has a tendency to build up in their systems and if you want a real and true milk free diet, all casien should be eliminated or it will cause symptoms.

have you ever considered seeing and allergist, they can explain about intolerance and allergies and test for them as well. genetic testing won't tell you things right away but could help in the long run. metabolic testing is often very useful and could be worth looking into. many stool, blood or urine tests are easy and quick and could help you rule out a lot of stuff.

now speaking as a mom who decided to repeat an endoscopy for emily our decision was complicated but as a general rule i stuck with this one thought process, ' will this change the course of treatment?' if the pros outweighed the cons or if the possible answers outweighed the non answers then i would do it. and for us the pros were there and the possible answers were too.

for emily's second endo. she was on prevacid but it was to see if the meds were working well, they were not. she also had biopsies and gastric and douendal enzyme level testing done. for your dd the results could be different this time things can change in a year and a half and back then the previcid could have been doing it's job- thus no inflammation in the biopsies.

i hope the drs at this clinic are able to help your daughter better and get her on the track to happy gaining and childhood!
May 11, 2010
debbieb
Debbie, Mom to:
Derek,10/29/02 GERD,Can't have any legumes(soy, being the worse), allergic to PN/Tree Nuts, struggled to gain weight for years, my "picky" eater,Takes Zegerid. Johnny, 12/05/99 GERD, managed by diet, allergic to cashews/pistachios.
Do you know that the Prevacid Solutabs have dairy in them? You might want to ask for a different PPI like prilosec.
May 11, 2010
debbieb
Debbie, Mom to:
Derek,10/29/02 GERD,Can't have any legumes(soy, being the worse), allergic to PN/Tree Nuts, struggled to gain weight for years, my "picky" eater,Takes Zegerid. Johnny, 12/05/99 GERD, managed by diet, allergic to cashews/pistachios.
Another thought I found with both my reflux kids is that they had asthma that was making the reflux worse and uncontrollable. See an allergist.
May 27, 2010
brigitte
Brigitte, mother of two girls diagnosed with reflux from birth. Ashley now 6 yrs was a silent refluxer and would choke many times a day. Outgrew at age 2. Recently started complaining about reflux. Yougest daughter has milk protein allergy. Still on Neocate and Prevacid at 2.5 years. Aspirates occasionaly.
We found that the solutab were not working as well as the regular Prevacid capsules. After a few days, her irritation from reflux was back. She went back to normal once we put her back on the regular capsules.
Check with your
doctor first!