How to handle reluctant doctor

[Anonymous]

DD has now been on Alimentum for a couple of months. No changes as far as spitting up, REALLY bad sleeping, mucus in spit up and BM’s, etc. So I really am leaning toward MSPI.

I have questioned the GI specialist about it. Her first response was to switch to Nutramigen. Tried that…no change. I keep bringing up MSPI and elemental formula, but she acts like I don’t know what I’m talking about. She said if my DD is MSPI that a hypoallergenic formula like Alimentum or Nutramigen should take care of it. I’ve tried telling her about all of the cases (on this forum:o) I’ve read about reflux babies are also MSPI or the MSPI causes the reflux and many have found relief after correct medicine and neocate or elecare. I mean it’s not like I WANT to have to pay for that expensive formula.

My LO really needs some relief. The meds have almost completely reduced her “spells”. But…She is not getting any sleep. Not to mention we need some sleep too . She is constantly wigging and writhing during the day and night. She’s also grunting and fussing like she’s not comfortable a lot.

So any suggestions on what I should do or ask for next to convince her to let us try that avenue? Is there any formal research or tests or anything I can bring up?

Thanks!

[Anonymous]

Well, you dont have to have her permission to try it at all. You can order it directly from your pharamacist. Or, some moms even buy it on EBAY. Also, I think there is a way to get a free can from their website.

I would suggest just trying it on your own for a week or so, then returning to the doctor with evidence that, “yes, see how much better she is on the Neocate,” and then ask for a script for it so that your insurance will maybe help cover the cost.

[Anonymous]

I completely agree with Naomi. And if the doctor STILL won’t agree that Neocate/Elecare is helping (when/if you KNOW it is) and won’t support you with a script and medical necessity letter, then I would change docs. I think once you can go to the doc and tell him/her that your LO improved or got better on the elemental formula then you will get support. It def sounds like the hypo just isn’t cutting it!! Good luck!

[Anonymous]

Maybe another doctor? or would your normal ped give you some?

I would also try making it sound MUCH MUCH worse then it is! They tend to listen better that way 😉

[Anonymous]

I agree with Naomi and Jill. I would give it a try and if it works then “demand” a script so that your insurance will cover the cost. We had mucous on Nutramigen, but that was our only intolerance symptom. I think if we had had the other symptoms as well then I would have switched even without the doctor telling me it was okay.

[Anonymous]

yes, just try it yourself first and if it works, tell your GI to write the script. If you go to http://www.testforallergy.com and fill out this short survey thing, they will send you a free can….also, you can get it on ebay for MUCH cheaper…that is what I do. 🙂

Good luck!

[Anonymous]

I agree with everyone else! Try it on your own and see what happens! My only concern is that you might need to give it a little longer than just a week. All of the offending proteins need time to leave the body before you’ll know if that was what she was reacting too. Maybe 2-3 weeks?

I would definitely look into buying some on ebay. That is where I purchased all of Sarah’s alimentum (and if I would have known better I would have at least TRIED to get insurance to cover part of it!!)

Another thing I want to point out just in case you didn’t know (and I’m sorry to sound repetitive if you already did know this…) Are you making sure you are giving the prevacid on an empty stomach followed by a meal 30-60 minutes later? And also…I noticed zantac still in your signature. If you are still giving that make sure to space it 4 hours a part from the prevacid.

Good luck and keep us posted!

Oh yeah…and if all else fails GET A NEW DOCTOR! We had to go through 2 doctors before I found one that would listen!

[Anonymous]

Yep, Zantac and Prevacid. We are spacing at least 4 hours apart. And we do our absolute best to wait at least 30 minutes for the Prevacid before feeding her . Thanks for double-checking that though!

So I’m really leaning into trying it for a couple of weeks (probably order from Ebay). And if it goes well let our specialist know and if she won’t do a script go somewhere else. Our insurance doesn’t cover it right now, but I’ll start the fight . A few of questions…

1) How many cans/cases do you guys suggest I order to do a trial? She’s drinking about 24-30 ounces a day.

2) Other than being sealed and expiration date anything else to watch for on Ebay? Anyone had any problems doing it this way?

3) Does it matter if we do Elecare of Neocate? I haven’t done much research on the differences yet.

THANKS!!

[Anonymous]

I can’t remember how many ounces one can makes but I would call Nutricia and ask. Then you should be able to tell how many you should buy. I get enough for at least 2wks. But I would try for a good month. That is when we started really seeing a difference when Abby went on Neocate.

I never ordered any off of Ebay b/c we got our insurance to cover 80% of it by going through APRIA Healthcare. I don’t know if there is a real difference b/w Neocate or Elecare. Our GI just recommended Neocate and gave us a few samples.

Andrea

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