Impedance study

[Anonymous]

Yesterday Noah had an endoscopy and impedance device placed for 24 hr observation.

It was wild to watch the levels of PH fluctuate throughout the night. It was scary at some times…

Anyone with basic knowledge in chemistry knows that PH levels @ 3 is BAD!!!

Noah ranged from 3-high 5’s at times and refused to eat along with his typical thrashing, crying, arching, coughing, gasping, etc.

so now what? We have to wait for results for the dr to tell us that at certain times tings are worse…

PLEASE!!!! He was medicated the entire time and We’ve already told him that we think it’s too low of a dosage (7.5 x1 prevacid in am and zantac 1.1 x2) He said that prevacid is more than enough….next he is going to want to discuss reglan. COME ON! No way are we risking the potential neurological side effects when we havent even reached a therapeutic level on a “safe med”

thanks for listening. just a bit frustrated

Eric

[Anonymous]

Well, a couple of things. See what the doc says and then I would try to get a second opinion. I agree, the prevacid is too low to throw in reglan and give up on more PPI first, so you may need another doc, or you could ask your Pedi to directly speak with Dr. Philips? (anyone know if he is still willing to speak directly with docs?). I think you definitely know what to do and what you should try, it is just now finding the doc to prescribe a higher dose and see if it will work.

I would just say, that having that concrete knowledge from doing the 24hour test is 1) validation that you know exactly what is going on with your LO and 2) concrete evidence to bring to another GI if need be for a higher dose.

Hang in there! There is a thread on here somewhere that we have all contributed to and posted docs from all over the country that we have had successes (and failures) with, so I am going to call on our more organized members here to find and post the link for you or at least bump it up 🙂

[Anonymous]

monty123 wrote: …  There is a thread on here somewhere that we have all contributed to and posted docs from all over the country that we have had successes (and failures) with, so I am going to call on our more organized members here to find and post the link for you or at least bump it up 🙂

 

Thanks so very much

We’ve previously combed through the entire thread.

the two dr.s that saw noah are HIGHLY rated according to castle Donnely, however that doesn’t seem to mean that this is their specific area of expertise.

Neither of them were keen on increasing the ppi in fact one was suspicious of recommendations that are tied to specific products and research conducted that links to a product that was develop based on the research. I would understand more so if it weren’t my child.

I’m more concerned that his feeding deteriorates and he develops some major health concerns (esophogitis, ulcers, etc) if he doesnt get proper treatment.

I think I noticed that you were from CT. Where abouts? I have worked in Stamford for years and would be willing to take my son there without hesitation. I’d travel anywhere!

I’m just not too thrilled with the potential of medicating him myself without perscription or a dr that will support.

Thanks again

Eric ( disguised as my wife)

[hellbennt]

there are drs listed in CT here:
(anne marie posted hers)

https://www.infantreflux.org/forum/forum_posts.asp?TID=660

you may also please post what doctors you would NOT recommend…

[Anonymous]

I would probably move to an OTC PPI (ie: Prevacid capsules) & make buffer babies & dose myself…

[Author]

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