Posted By Posting
Aug 01, 2008
massfiasco
still no resolution

Hi everyone,

I posted earlier this summer about Thomas and his reflux. We have been through every medication and only get some relief with Prilosec... basically, he only refluxes once or twice per hour when on a full adult dose.

Well, we had a checkup with the GI on wednesday and he agreed with us that this is not a good situation, and he is recommending domperidone or reglan. I know about the reglan side effects, and given that we already see a developmental ped for Thomas's behavioral issues (excitability and self control, but short of ADHD), I am not really so psyched about reglan. On the other hand, there are recent reports of EKG abnormalities with domperidone that scare me too, since I had heart surgery to correct a rhythm problem in 1995. So what do we do?

We have made an appointment with another physician (Children's Hospital Boston) to get a second opinion... there must be something else we can try! What am I missing? What else can we do? We had him skin tested for food allergies this summer and he was negative for everything. We are considering a blood test, but havent done it yet. Thanks for any suggestions!

kerry
Aug 01, 2008
mdbarbagallo
Melissa - Mommy to Sebastian, born 9/28/07 @ 7 lbs 7 oz and 20.75 in. At docs at 12 months: 27 pounds and 32 in! Good grief! GERD - currently on Prevacid suspension (liquid equivalent of 45 mg a day). Allergic to dairy, soy, eggs, wheat, all treenuts, peanuts, fish, shellfish, peas, sesame, bananas, barley, coconut, dust, dust mite, dog, cat, latex. Seasonal allergies. Oral Allergy Syndrome (OAS). Neocate only - no solids - until further notice (drinks and loves water, too). Loves his doggie, our rescued Treeing Walker Coonhound, Louise, even though he is allergic to her. Louise will make your doctor a homemade pie if you would like her to. PHOTO: We couldn't do a cake on Sebastian's birthday, but that didn't stop him from tossing around the contents of a big bowl of popcorn! He now tries to eat it when we play with popcorn, so no more of that game.... :(
I'm so sorry! Poor little man. I HIGHLY suggets the blood test. My Sebastian tested negative for nearly everythin gon th eskin test, and look what he tested positive for (TWICE) with the RAST. Our dreamy allergist thinks that his problems are 90 percent food related and only 10 percent reflux related...and that the reflux is caused by the food. You might want to look into the testing!
Aug 01, 2008
mom2halleyann
Donnessa, mom to Halley born 3/10/07
Reflux (mostly) resolved at 14 months
and Addison born 8/17/09. Currently exclusively bf and on 7.5mg Prevacid
I think you should trust your mommy instinct on this one. Definitely get the allergy blood test and maybe a second opinion from another GI. Has he been on Nexium yet?
Aug 01, 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
You will NOT be disappointed with CHB!!!! I have heard that they are a phenominal place for GI issues!!!!!!!!

I believe that once you go there you will STAY there. I know some VERY complex kids who are seen by there Gi dept. And the all LOVE LOVE it to death!!!!!!!!

BTW they have one of the leading GI for motility issues there as well. The other ped. GI who deals with motility issues is at Nationwide child. in Ohio.

GOOD LUCK!!!!!!
Aug 01, 2008
amber f
I have no advice but I wanted to say that you have a very handsome young man. He is going to be a heartbreaker:)
Aug 01, 2008
mom2coy
Coyle Eagan. One Year Old. Doing well on Cow's Milk flavored with juice :) Drinking two bottles of Go&Grow daily. Eating solids better but still have rough days. No More Silent Reflux-that I can hear anyway.. but puking again. Zantac 2ML 2X daily.
i 2nd jedd's mommy. i'd love to live out there to attend that hospital. i've heard wonderful things. i too agree with melissa's mom. my lil one was skin tested a few weeks ago and came up negative for everything. however, if he has a miniscule amount of dairy he vomits for hours and he has issues with solids period. so, symptoms are a better indicator to me than tests are, kwim? how old is your cutie? also, you can ask the GI about benethancol (sp) that some other moms have mentioned on here or even eurthomyacin (antibiotic). does he spit it up or swallow it back down? have they done any x-rays, scopes, etc?
Aug 03, 2008
nanibear
Does this ever go away?
hello
Maybe you might try to restrict his diet to control the acid.
Aug 04, 2008
massfiasco
thanks for replies!

okay, i think we'll try to get the blood test. poor guy has been through a lot, so i was putting it off... but i guess we will talk to this new doc and see if he'll order it.

we have the appt at CHB! thanks for the recommendations. we currently go to MGH and like our doc, but i sometimes feel like he is just following a routine that our child doesnt really fit into. hard to explain, but certainly something is not working with his current treatment and i dont like what he is recommending for the next step.

he has been on prevacid (it worked initially, then stopped working), prilosec compounded (he HATED IT, it was so gross), then nexium granules (did nothing), now back to prilosec but we taught him to swallow the pill whole. MUCH better, but it's not really working either.

thanks amber for the compliments! we had just had a mucocele removed from his lower lip, thus the swelling, but i love the picture anyway. did mention that he's been through a lot? lol

mom2coy- thomas is almost 6. i will ask about the other 2 meds you recommended... thanks for letting me know about them! when he refluxes he swallows it back down... though sometimes (it's becoming more frequent) it will come up too fast and will come out of his mouth. then he will apologize! OMG, it's heartbreaking. he has been scoped 4 times, and has had an upper GI and motility test. no physical problems, and only esophagitis on the first scope. i have a feeling if he were scoped now, he would have esophagitis again.

we made the appointment but couldnt get in until sept, so now we wait.
Aug 04, 2008
massfiasco
to nanibear- we do restrict his diet but he seems to reflux anyway. we have eliminated citrus, limit chocolate, fried foods, greasy foods, tomato sauce and tomato products, etc... but even meals that contain none of these things will cause him to spit up. and hey, what does a child eat if he cant eat pizza, chicken fingers, mac and cheese, pasta with sauce, anything with ketchup (hamburgers and hot dogs), anything with chocolate, certain fruits... i mean, a kid can only eat so many ham roll ups. and then he spits up anyway...
Check with your
doctor first!