What next?

My 11 year old has had GERD since he was born. He vomits into his mouth several times a day. Recently the doctor put him on Nexium... problem is that he regurgitates the Nexium after it's dissolved and hates the feeling & taste of it in his throat and back of his mouth.
I worry about 11 years of stomach acid affecting his esophagus and would like some tests run but unsure what tests to request. He had a colonoscopy about 4 years ago which showed nothing?
I even asked the doctor if I should consider a food intolerance or something to which he replied no??
He is not sickly and not underweight at all so it doesn't appear to be affecting his health?
But 11 years of regurgitation can't be good!

What should ask the doctor to do for him?

[KD9ER]

Ok I'm no expert, but I grew up with a Mum who suffered/suffers with severe GERD.  Her throat is smaller than the size of a pencil!  She's been suffering now for 15 years continuously.  So I can understand your concern.  I also have a child (20mo) who suffers with GERD.  His seems to be genetic.  Here's what we're going through:

--Prilosec was given at 2mo old to stop seizures.  At 6 mo old the seizures stopped.  *yea*  He continues on Prilosec at a minimum dose to keep the GERD at bay.

--He sees an ENT doc to make sure his throat is not adversely affected from the GERD.  This is done anually now.  

--He is monitored now by the Allergist.  They are working with us for a better diet to aid in supression of acid in a non-medicined way.  We will see over the next year how this goes.  

--He sees a Nutritionist who is also working with us on a "diet" to help him gain the proper weight and let him maintain a good vitamin source in his body.  

--We are also taking him to see a Natural/Homeopathic doc to see what supplements can be given.  We've been told Super Greens work really well in balancing the body's PH to help "heal" the stomach back to a better balance.  I have a few health nut cousins who swear by this.  One of whom has twins who are 2 and are on only natural foods with Super Greens---they are 2 and have NEVER been sick.  Never.  It's crazy.  So we are going to try this.  


I would honestly follow your instinct.  If your doc will not consider there being an underlying food allergy then I'd get a new doc.  I really don't like docs who think they know everything and will not allow for exploration.  What's the worse that happens?  You child sees the Allergist and he doesn't have food allergies?  Ok so now you are better educated as to what is NOT causing the GERD.  I would also recommend the ENT's they are great for following children and it's quick scope (in office).  I think it helps put everyone at ease when you can physically see what is going on without having to be put under.  I've had them and really it's not bad.  They numb you and you don't feel it.  Just a weird sensation like you've stuck your finger up your nose but don't remove it.  So I think your son will be ok with it.  That's just a start.  
You're a Mum and you know better than a doctor.  You carried your child and you have a connection they don't.  Listen to it and follow it.  The worst thing that happens is you're in the same spot you are now.  The best thing, he is healed because you found the cause.  

Another test that is relatively simple is the Barium Swallow to see if everything's working properly.  My Mum's had GERD so long that it made her stomach valve (epiglottis) a two-way leaky valve.  So she now has GERD with Regurge!  Sounds redundant to me, but it's permenant until the acid gets controlled without issues/flare ups.  

Best of Luck!  Keep us posted!  

-K

PS- Have they tried an Oral Suspension of Prilosec with him?  My son gets a mint flavored compound of Prilosec.  And you have to make sure it's not just the Prilosec pill opened and dissolved into saline solution.  This is a particular Prilosec powder that's already pre-compounded into specific dosages (2ml/1ml or 3ml/1ml etc).  It comes in a variety of flavors.  Our pharmacy uses the mint flavor.  It really seems to help moreso than when they were just compounding the capsules.  Your son is still young enough where the docs would approve the liquid suspension.  Just to let you know it expires every 28 days though.  That's the only downfall besides the constant refrideration.  Kind of a pain when you go on vacation, but if it works then it's worth it.  

[CoreysMum]

Thankyou for your very informative answer.

I am going to print out your letter so that I can refer to some of the methods you have tried.
The doctor took him off the Nexium (because he just regurgitated that into his mouth like everything else... and said it tasted awful) and has now put him on Maxalon tablets (5mg) x 3 times a day.

What I really want is to have him checked for problems (throat, gut etc) rather than fill him with medicines.

I will persist because he has already had GERD for 11 years and I hate to think of the damage it will have caused by the time he is an adult if something isn't done!

Thanks again for taking the time to type such an informative reply.

D

[shaz71]

Hi my daughter who is 18mths had the barium meal done but it doesn't show up the damgage done, the endoscopy would be better for this it is a camera down the throat, also what about a ph study that is a tube down his throat it will be a little uncomfortable but at the same time you can see for youself how he is reacting to certain foods as they will tell you about the numbers so if he as a bowl of cereal and the numbers are high that is fine but i think if numbers are lower than four then you know it is either the milk or cereal he is allergic/intolerant to. Allergy tests to be honest aren't that reliable you would be better doing a food challenge as in allergy tests they don't show if anyone is intolerant to a food but intolerances can make acid worse also, barium meal will show if there is an internal problem like weak valve or something else ie hernia. So i would try for all them tests if they fob you off i would ask to see someone else, as they should have tried these by now. Good luck. All the best. Sharon x

[ChitChatNine]

My son's GERD was 95% related to caseine at the time.  Once it was removed fully the reflux got better!

Also, there are chewable Prevacid tablets available that don't taste bad at all.  Maybe that is an idea to switch over to.

I'd definitely get a good allergist or two for an opinion and do a total food elimination diet under their guidance and see if it helps with the reflux.

C~

[CoreysMum]

Thankyou for your reply.
I think your advice is on the right track because I am wondering if it is infact a food intolerance of some sort?
I really want the doctor to do a blood test for celiac (my sister and nephew are both diagnosed celiacs) to see if there is a gluten intolerance.
I have suggested a lactose intolerance etc...which seems to fall on deaf ears.
I was referred to a dietician but the dietician is going on a holiday overseas and won't be back for a few months!!!!!...and there is no replacement???

I don't know how the poor kid puts up with vomiting into his mouth and heartburn many times each and every day!... I guess he knows no different as it's the life he's always had.

I just want to bring him relief!