Infantreflux.org | What's the best Medicine? *Update* Post #10

This topic has 21 replies, 1 voice, and was last updated 16 years, 1 month ago by hellbennt.

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September 8, 2008 at 6:08 pm #56264

Anonymous
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Ds has been on a very high dose of Prevacid for almost 8 weeks. It is not working anymore. Today we had a GE Scan done and I could actually see him refluxing. We go to the GI Dr. tomorrow and I think he is going to want to change his meds.

I am just wondering what works best for your child/children. If there is a combination that works best, please choose each one and then list the combination.

Thank you!

bubby012008-09-09 14:53:17

September 8, 2008 at 9:07 pm #56272

Anonymous
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My ds is on Prevacid. He still refluxes, but it does not bother him b/c its not acidic.

The only two things that will make your ds not reflux at all are surgery (only used for severe cases when a childs life or well being is at risk) and time. None of the reflux meds can actually stop the reflux, they just make it not painful.

September 8, 2008 at 10:15 pm #56283

Anonymous
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bubby01 wrote: Ds has been on a very high dose of Prevacid for almost 8 weeks. It is not working anymore. Today we had a GE Scan done and I could actually see him refluxing. We go to the GI Dr. tomorrow and I think he is going to want to change his meds.

I am just wondering what works best for your child/children. If there is a combination that works best, please choose each one and then list the combination.

Thank you!

I would NOT switch unles you have an EDG done showing that the meds are NOT doing their job.

A GES is NOT to be used to DX reflux.

Liek the previse poster said. Meds will only stop the acidicy of the vomit it will not stop the vomit.

My Jedd is a perfect example of that. His reflux is 100% under control yet he can vomit like a fountain to this day. As a matter of fact he did today all over the place….LOL He covered about 8 squares on my kitchen floor.

If you are concered about meds. do the EDG you won’t regret it. It will tell you for 100% sure if the meds are working or not.

BTW you will be able to tell if the meds are not working. With Jedd we always tell because when he vomitted he would arch his back and scream from the “burn” of the acid.

Whereas, when the meds were working he would vomit and act like nothing was happening. REALLY I’m not lying. It would just come out and that was it, no fussing. Today was like that. He was playing as I was wiping him off and cleaning him up. BTW he still had vomit tricklying out of his nose..EEEWWWWWW

And all children are different. Sorry, a med combination that works for one child may offer NO relief to another child. Hence the reason WHY reflux/GERD is soo hard to deal with and treat.

September 8, 2008 at 10:18 pm #56284

Anonymous
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One more thing…..LOL

Reglan is used to trea DGE not to treat reflux. ALOT of DR will use it to see if it works. If it doens then they will declare that the child had DGE and then keep them on the med.

DGE is one of those things that is very tricky to DX. GES are notoriously unreliable My Gi will totally admit this and did right to my face.

The ONLY completley reliable test for DGE is a A and D manametry test. DR ar eextremly reluctant to do this test though. I personally after going through one would do it as a last resort after meds have failed.

September 9, 2008 at 2:59 am #56294

Anonymous
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Thanks for the replies.

Ds has had a chronic cough for months. While he was on the x-ray table he coughed as he usually does and I could see the reflux. He is pretty uncomfortable and I can tell he is hurting. We are waiting the results of his sleep study and some blood work. Hopefully that comes soon and we will get some answers.

What all does a EDG involve?

bubby012008-09-09 03:00:18

September 9, 2008 at 8:26 am #56299

Anonymous
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Beth,

An EDG will be done in the OR. They use the gas to “knock them out” and then use a cmaera to go down the child’s throat. they will take pictures and biopses along the way. the normally take 4 biopses of “skin tissue”. They test these biopses for EE and EOS and other things.

They are taken from the esophagus, upper stomach (fondus) inside the stomach itself and right near the duodinum. They also take pictures of those 4 spots as well.

You get a copy of the pictures to see for your self right after the procedure it done. As a matter of fact, we saw the pictures and Dr before we got to see Jedd in the PACU (Post Anthesia Care Unit).

It will note any readness,swelling or damage that is done by in esophagus by the reflux.

Don’t be worried. At the time Jedd was done he was arching and screaming with every vomit and he was just slightly red with NO swellign and all his biopses came back normal.

The whole procedure itself takes about 20 mins. I think from the time he left our arms to be brought into the OR by the nurse to when we saw him in the PACU it was about 30 mins total.

Jedd had an IV for his but I dont’ think thye normally have one. Jedd requires antibiotics any time they “cut” him even the slightest due to his heart repair. They don’t want any infection to seettle in his heart wher ethe reapir patch is. His body is still growing skin over his patch form open heart surgery to close his HUGE VSD (hole in right ventricle). So due to them doing biopses, he required IV ABX’s.

HTH

September 9, 2008 at 8:41 am #56300

Anonymous
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Follow these links and you will see a comparison of 2 scopes. the first is BAD and the second is GOOD….

http://www.parent-2-parent.com/forum/showthread.php?t=100339

I know there are more on that site I jsut can’t find them this early..LOL

This is a generic one I found on the web. It’s prety gross….LOL

http://www.technorati.com/videos/tag/Endoscopy

It shows all sorts of anomolies from EDGs.

September 9, 2008 at 9:21 am #56302

Anonymous
Inactive

Thanks!

Ds had a Ph Probe and endoscopy done at 7months. I do not believe they took biopsies though. At the time the Dr. said he was red, but no damage had occurred to his esophagus. From the ph probe they said he had mild to moderate reflux. But, he slept on me, upright the whole night.

It’s amazing the crap this reflux causes. I just want my baby to feel better.

September 9, 2008 at 11:33 am #56304

Anonymous
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I know it’s hard Beth but in time children do get better. I know that is not any consolation right now but it really does get better. I promise.

Time I have learned is a refluxers best friend.

Reflux peaks anywhere form 6-9 months so hioepfully time wil go quickly.

*Jessica*2008-09-09 11:34:43

September 9, 2008 at 2:51 pm #56314

Anonymous
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*Update*

We went to ds’s GI today and he had the results from the GE Scan. For those of you who don’t know what that is I’ll fill you in:

It was actually really easy and pretty cool. They put a drop of radio
active stuff in his drink, he drank it and then he had to lay on a
x-ray table for 1/2 hr. We kept him busy with toys and it was a breeze
compared to everything else we’ve had to do lately. I could see on the
screen the particles of radio active stuff in his stomach. One time he
coughed and at the same time I could see the particles go up into his
esophagus. It was crazy to see him refluxing on screen while watching
him. He has been coughing a lot and now I know it’s from the reflux.
The results from the GE scan showed a lot of
activity. 3 refluxes in 23 min. That’s a lot more than I realized. He prescribed Nexium 20 mg. and if
in 2 weeks Josh isn’t better I have to call and he will up the dose to
40 mg. a day. The good thing about the scan is that it ruled out other
stuff. He said everything looked normal, just a lot of activity.
Hopefully this helps him to feel better.

September 10, 2008 at 10:22 pm #56371

Anonymous
Inactive

Beth – how old is your son? And what is he eating?

Our ped GI (one of the top in the world, and a leading researcher) has told me that reflux is ALWAYS a symptom, not a diagnosis. It could be a symptom of… immature LES (common in young babies and will lessen with time), structural abnormalities (like hiatal hernia), food allergies/intolerances, gut pathogens like yeast, viruses, bad bacteria, etc. In other words, there is always a reason/cause of the reflux. It doesn’t just happen for no reason. Prescription acid-reducers can do wonders to help with the symptoms, but will not treat the cause. If your little guy is older then about 8-9 months old (then you can likely rule out immature LES) and there aren’t any structural abnormalities, then the most common cause of reflux is food intolerances/allergies.

MFPIx22008-09-10 22:26:43

September 10, 2008 at 10:38 pm #56372

Anonymous
Inactive

That’s actually the kind of info I have been trying to find out. THANK YOU!!! I had a feeling that something was causing this. My ds is 13 months old. We did a elimination diet for 3 weeks with no big change, but he was on Prevacid solutabs which contain lactose. Now he is on Nexium. Since we got off the diet (per GI orders) he has gotten worse and his excema has returned. He did have a RAST test done and we are still awaiting the results. I am really starting to believe this is a food allergy thing. I just wish I knew from what. Thinking of starting the TED again makes me a little crazy.

Do you know if there are any better test than the RAST and doing a TED?

Thanks again, I really appreciate your input!
bubby012008-09-10 22:39:14

September 10, 2008 at 11:03 pm #56375

Anonymous
Inactive

Eczema is a big sign of food intolerance/allergy. The most likely causes of eczema are milk and egg. Unfortunately, RAST testing isn’t likely to show food intolerances. It only shows IgE allergies – the type of allergic response that causes skin rashes or breathing problems/anaphylaxis. It doesn’t show IgG allergies or food intolerances, both of which are the main causes of reflux in children with mature LES and no structural abnormalities. The top foods likely to cause reflux and eczema are: milk, soy, gluten (found in wheat, barley, rye, etc.), egg and corn. I know it’s really hard to eliminate all of these from ones diet (I’ve been there, my son can’t eat any of those foods) but if you are able to cut them ALL out (completely – no cheats) for at least 3 weeks, then slowly try to introduce one of them, one at a time, you should be able to see a) if eliminating these foods makes a difference and b) which foods he can and can’t tolerate.

September 11, 2008 at 10:35 am #56395

Anonymous
Inactive

My dd was still refluxing and on Zegerid at 15 months old. We eliminated the top 8 allergens plus all the one that showed on her patch test. We saw improvements after about 2 weeks, but the real improvement came after we started her on plant based digestive enzymes. After two weeks on them, her puking decreased by 70% and after 3 months we did a med free trial and she did very well. We have been on enzymes ever since and on a hypoallergenic diet and so far so good.

Elimination diet are time consuming and fustrating, but they are worth it IMO. If you need help finding hypoallergenic foods, ask away, Sheri usually has good ideas and i can help too.

P.S. Kendra also struggles with eczema since she was 3 weeks old. We are still a work in progress, but is way better these days.

hugs

Leo

kendramom2008-09-11 10:37:20

September 11, 2008 at 11:07 am #56397

Anonymous
Inactive

Thanks for the info.
What are Plant based digestive enzymes?
I just started researching Candida. Do you know anything about this? My dh also has recurring thrush. I may need to start another post. Thanks!
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