Posted By Posting
Dec 30, 2010
nataliebel
HELP PLEASE
MY LITTLE BOY IS NEARLY 5, HE AS HAD SEVERE GORD SINCE BEING A BABY, IT STARTED WHEN HE WAS ABOUT 8 WEEKS OLD JUST CONSTANT VOMIT, HE WAS REFFERED TO A PEADITRICAN AND SEVERAL TESTS PREFORMED, HE WAS PUT ON A LACTOSE AND DAIRY FREE DIET FOR ABOUT A YEAR BUT THE PROBLEMS STILL STAYED THE SAME. HE WAS REFERRED TO ANOTHER PEADIATRIAN WHO DIAGNOSED GORD, MY SON AS HAD 3 ENDOSCOPYS TO TRY FIND ANY OTHER PROBLEMS BUT NOT FOUND. HE IS STILL A BIT OF A MEDICAL MYSTERY, HIS PEADITRIAN HAS NOT GOT ANOTHER PATIENT OF THIS AGE WITH THIS CONIDTION ALONE, HE INFORMS ME HE SHOULD GROW OUT OF THIS AND IS OPEN MINDED TO INVESTIGATE FURTHER IF I CAN THINK OV ANYTHING ELSE, DONT GET ME WRONG HE AS BEEN VERY HELPFUL BUT ITS SO HARD WHEN I CANT GET AN ANSWER AS TO WILL THEY BE ANY LONG TERM DAMAGE OR WILL HE EVER COME OF HIS MEDICATION. HE IS AN ASHMATIC ON SINGULAR TABLETS AND INHALERS TO CONTROL THIS, AND 10MG OF OMREPRAZOLE TWICE A DAY , PLEASE HELP WITH ANY SUGGESTIONS, THANX NATALIE
Dec 30, 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
Have you had a Gastric Emptying Scan done? What about a swallow study or an UGI. At this point while on those asthma meds I'd want to see a Pulmonologist.....lung issues are nothing to play around with.

Where are you located....I know a few people over seas, your reference to GORD makes me think you are. They may be able to help you navigate your medical system better than I will.

What GORD meds are you using, how are you giving them and what are the doses?

Dec 31, 2010
nataliebel
HYA THANX VERY MUCH FOR REPLY, I LIVE IN WEST YORKSHIRE, ENGLAND, WHERE ARE YOU FROM ? ENGLAND ? YES HE AS AD A BARIUM MEAL WHICH PAASES ALL THE WAY THROUGH JUST A LITTLE CAME BK UP, HIS UPPER ENDOSCOPY WAS NORMAS, AND CHEST XRAYS NORMAL,HE TALES OMREPRAZOLE 10MG MORNING AND NIGHT, SINGULAIR TABETS FOR ASHMA 4 MG DAILYS, SALBUTAMOL AND CLENIL INHALERS 2 TIMES EACH PER DAY. THE DOCS AV DUN ALL RELEVENT TESTS BUT CANT DECIDE THE NEXT STEP ASD ALL TEST FINE AND NOTHING ELSE WRONG WITH HIM HEALTH WISE, HIS SYMPTOMS ARE SEVERE WHEN HE VOMITS, WCTS HE DOES ON ARVERAGE ONCE A WEEK BUT, HE VOMITS THCK TUBE LIKE SHAPES AND REALLY STUGGLES WITH IT, SERVERAL OCCATIONS AMBULANCE AS BEEN CALLED AND WILL NEED INHALERS, IF HE GETS UPSET THIS WILL HAPPEN WHICH HE CANT CONROL AND HE OFTEN COUGHS LOTS, IF HE MISSES EVEN ONE TAB HE WILL BE ILL , VOMIT COUGH, HE ALSO GETS BLOOD SPOTS FROM THE BROKEN BLOOD VESSLES, JUST FEEL FOR HIM, CANT BE NICE
Dec 31, 2010
jan gambino
The Reflux Mom
www.refluxmom.com
First Stop-Lung Specialist?
I agree with Jeddsmom-your son needs a referral to a lung specialist or pediatric pulmonologist. The pulmonologist can work with the pediatric Gastroenterologist to figure out why he is having such serious symptoms and figure out a treatment plan. All of that medication should prevent emergency trips to the emergency department. Does the doctor even think he has gastroesophageal reflux? Certainly vomiting is associated with reflux, especially in infants. However, vomiting can be a symptom of other diseases and conditions too. Good luck, Jan Gambino refluxmom@gmail.com The Reflux Mom
Dec 31, 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
I would just get him in to see a Pulmonologist at this point. They will and should be able to pin point what's going on.

If all GORD tests are coming back normal, including that EDG, then I'd say it may be another disorder of some kind mimicking the GORD.

Does the vomiting come in cycles? Have you track food intake and symptoms yet by keeping a food journal?

Dec 31, 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
One more thing....do you have a FB page at all that you use? I do know at least 2 GORD families in England.
Jan 01, 2011
nataliebel
thanx guys for u replys it means a lot being able to discuss syptoms as i am not hettin any answers this end, sorry wats a pulmonologist ? yes he as said it is defently reflux but just a serious unexplainable form, he doesnt want to incerase his meds as any higher will stop the built up of acid and he will b more prone to infections, and as he does not do it every day doesnt feel he needs no more imidiate follow up with specialist, he sees him every 6 months , but i feel therre dismissing him in a way, i feel its more serious , me n hubby n family see him regualry and see his distress wen he does it, i appriaciate ur time in replying, my name is natalie belghith for my facebook page ,thanx again
Jan 01, 2011
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
A Pulmonoligist deals with breathing and lung issues. They specialize in it. IMHO and I'm not a DR I've know kids who are on higher doses of meds than that and they are younger.

I'm not sure what med your DR is talking about when they say upping it could cause infection? I'll try to find you on FB.

Jan 01, 2011
nataliebel
oh thanx il av a word when i go bk, well he said that because he on 20mg per day if he as more than that it will not reduce the acid build up like it does a t mo but stop all acid built up which will then lead to becoming more likely to catch infection, eg chest . dont knw really , he as tried ranatide and that dint help, do u knw of any other med i can ask for, wen i go bk i would like to fire lots of alternatives id like him to try, pls
Jan 01, 2011
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
You can try to add in a med for motility like Erythromycin or Reglan if you game for that drug. We were. We have used both Reglan worked better but we saw side affects, we used EES (erythromycin) long term and never saw an increase in infections or anything like that.

I'd start by keeping a food and daily journal. Log everything you do, med, meals, what was eaten, and how he felt afterwards, how long it took to feel that way. Any reactions you see, sleep patterns....breathing patterns.

The more info you have the better. Patterns may start to appear. KWIM?

I don't want to disagree with your DR but I don't understand how limiting the amount of acid in the stomach can lead to infection? I've not heard that before. Jedd was an a pretty good dose of Prilosec in compounded form and was fine. He even took ir before his heart surgery and there was never any problems....and we were mixing heart meds as well for him at the same time and were never told not to do them.

You can also try a med called Carafate, it's like Super Mylanta. It's by RX only and needs to be taken orally and at least 30 mins prior to a meal and they like it to be taken about an hour after taking any GORD meds.

If you take GORD meds and the Carafate too close together, they will cancel each other out. Carafate coats the throat and stomach and can inhibit the GORD med from doing it's job. Does that make sense.

Jan 02, 2011
nataliebel
thank u for that , yes guna look in to that, i have previously done diary thing for several months but could not find link, kWIM ? WAT DOES THIS MEAN
Jan 03, 2011
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
KWIM is short for Know What I Mean....sorry!!! ;-)
Jan 03, 2011
nataliebel
lol dnt appoligise its me, thanx for all advice aswell
Check with your
doctor first!