Home › Forums › Infant Reflux Support › Boo-Hoo! I need YOU! › Waited TWO MONTHS for nothing!
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November 16, 2006 at 1:00 pm #18143AnonymousInactive
Here is my update on the GI appointment today…Jacob was diagnosed as a “fussy infant” by our incredibly intelligent and sympathetic doctor. She told us to try Carafate 4 times per day and to start feeding him cereal. She also told me to keep him on the soy formula, as Neocate is “very expensive.” I am SO frustrated I could scream (and I did, but unfortunately not at her). It took us two months to get in to see her and THIS is what we waited for?!?! I feel like our last hope has been shattered and I don’t know what to do next.
She told us to call her next Wednesday if he still isn’t doing well and then she may order a STOOL SAMPLE. Oh, thanks. And, OH, I forgot to mention the very best part (brace yourselves)…..she believes his reflux is due to the fact that we are feeding him too much! So, that’s her other recommendation…..feed him less! So now he can be miserable from BOTH reflux and being underfed. He eats about 28 to 30 ounces per day (on a very good day) and he’s 5 months old! I haven’t read anywhere that that is “overfeeding.”
Maybe I am wrong to be upset about these suggestions, but it seems really ridiculous to me. Trust me, I want to be wrong…so let me know what you think! I will now return to the couch to continue crying. Look forward to hearing your thoughts….it’s the only hope for help I have at this point.
Johanna
November 16, 2006 at 1:22 pm #18145AnonymousInactiveJohanna,
I’m so sorry about your appointment. Of course I can’t say for sure whether I believe he has reflux or not, but it certainly seems that she was extremely unsupportive and possibly incompetent. Reflux is not caused by over feeding, though over feeding can certainly aggravate it. 28 – 30 ounces is (from my experience) on the high side of normal intake for infants, so I wouldn’t consider that over feeding.
Ok, so she thinks he’s over fed, so then why add cereal to the mix? Won’t he be more over fed with cereal? Her logic just doesn’t make sense to me.
So, why the carafate if she thinks he’s just an overfed and fussy infant? Isn’t carafate used to soothe a sore esopagus?
And, why not do the stool sample while you were there after waiting two long months to see her?
I’d be upset, too. Actually I’d be livid. You wait two months for this? I know your head is probably spinning at this point…..but what I’d do is look for another GI right away and make an appointment, and then see if you can work with your pediatrician or family physician until you get into to see the new GI.
Who prescribed the 30 mg of Prevacid? Will you be able to continue with that? How long has he been on it and have you noticed any change?
Tell us again what his symptoms are so maybe some of us can help you sort things out.
Good luck. I know it sucks. It took me months to get Myles properly diagnosed and properly treated, and my first refluxer was never properly treated. It was horrible…and I know exactly how you feel.
November 16, 2006 at 1:37 pm #18147AnonymousInactiveJohanna, I’m so sorry that you had to wait so long for your doctor to do nothing. Believe me, I know how it feels… our health care system is notorious for ridiculous wait lists. I would often wait, getting my hopes up that maybe that appointment would be our answer, only to be disappointed. But don’t give up. In my personal opinion, a doctor who thinks that the acceptable answer is “he’s just a fussy infant” probably isn’t going to be much help to you in the long run. I had to go through many doctors until I could find the help we needed for Hailey, and our search still isn’t completely over. Where do you live? Maybe someone here can recommend a good GI in your area.
I’m also confused as to why she would suggest carafate if she didn’t think that there was an issue other than common fussiness. I’m also unsure as to why she would suggest to start feeding him cereal.
I really feel for you guys. But hang in there. HUGS.
s&h’s mum2006-11-16 13:37:58
November 16, 2006 at 2:35 pm #18153AnonymousInactiveI am sorry – I wasn’t very clear. She does think he has reflux, but that the things we are currently doing (Prevacid, burping often, etc) should be taking care of that and that the “leftover” misery is just due to fussiness….which is bull. This child is in obvious pain half of the day! And she even saw him have one of his “fits,” as he just eaten and was arching, etc.
I live in Atlanta…does anybody know someone good?
Johanna
November 16, 2006 at 2:56 pm #18155AnonymousInactiveyour sig says you started neocate. are you going to stick to that? it sounds like he may have mspi issues and that could be why he is not getting complete relief with the dose of prevacid. soy will only aggrivate his condition if that is the case.
November 16, 2006 at 3:17 pm #18158hellbenntKeymasterNovember 16, 2006 at 7:18 pm #18181AnonymousInactiveNatalia,
She told me not to switch and keep him on the soy, since “the neocate is expensive!!!!!” Yet another great suggestion of hers…I am so annoyed! I don’t know what to do about that now!
November 16, 2006 at 7:31 pm #18183AnonymousInactivefollow your mommy instincs? thats what i would do.
many of us moms on here have gotten horrible advice from doctors. i was told my son was “just colicky”, then another time in the ER i was told i was over feeding him, and that he didnt have reflux.who cares if neocate is expensive. if it will make your little one feel better, thats all that matters. i am broke as a joke because of my sons neocate and zegerid, but im just glad he is happy and not in pain.
November 16, 2006 at 7:38 pm #18185hellbenntKeymastercan fax the dr & say ‘thank you’ (yeah, right!)
for looking out for your finances re: neocate
& ask dr to plse write a ‘script bcse you’d like to see if your insurance will cover it?
Going to the Top (fighting insurance & more): https://www.infantreflux.org/forum/forum_posts.asp?TID=2607&a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;a mp;KW=going
About faxing the doctor (& more): https://www.infantreflux.org/forum/forum_posts.asp?TID=2841&a mp;a mp;a mp;a mp;a mp;a mp;TPN=1
November 16, 2006 at 8:38 pm #18189AnonymousInactiveI agree with Laura. Tell her that you need the script, b/c as she said, the neocate is expensive and you’d like your insurance to pay. Good luck.
November 16, 2006 at 11:30 pm #18207AnonymousInactiveFirst of all I can’t stand doctors! I know not all are bad, but most just want money and don’t really care about their patients. I have had my fair share of bad doctor advice. At this point I don’t even like dealing with Gi docs. They have never done me any good. The gi doc I went to for my first son had him on 5 different meds. 3 were for constipation. I took him to a chiropractor and the constipation went away. when we wnt to the gi for my baby now he said I needed to stop breastfeeding. That is a huge crock! Okay sorry for all of that. I know there are probably some really great docs. out there I just haven’t found them yet. I take that back my sons ped is great and Dr. Phillips is awesome.
My advice to you is do all the research you can so that when you step in that office again you will be prepared. If your not prepared the doc. can catch you off guard and you can end up feeling very small and unknowledgeable. Be firm! Call or go in on a bad day so that they can see your serious. Video tape episodes if you have to. Most of all do not dought yourself. You are his mom and you know your baby better than anyone. Fight for your baby because he can’t fight for himself.
I can’t wait to hear how your doing. You go girl!!!!!!!!!!
November 16, 2006 at 11:37 pm #18209AnonymousInactiveHe eats about 28 to 30 ounces per day (on a very good day) and he’s 5 months old! I haven’t read anywhere that that is “overfeeding.”
That doesn’t sound like overfeeding to me- babies need 150mls per kilo of body weight per day- so if 7 kilos thats 1050 mls or about 30 ounces (divided by the number of feeds of course not all at once-LOL).
Alana is 4 months and about 7 kilos and she takes about this each day. She’s a bit on the pudgy side- but if she would only grow a few more cm upwards we’d be right I asked my maternal child and health nurse and pead about this and their response- don’t worry about feeding any baby to much…there is not such thing…you can’t overdose on formula milk…maybe if it were chocolate bars there might be a problem!!
I would fax her a letter myself- highlighting the flaws in her logic (which have been articulated well by yourself and the others who have replied) and asking her if she has anything else to add!!!! But then, when I get mad the b&%tch in me comes out! You could point out that “fussy infant” is not a diagnostic criteria in the international disease classification system (ICD-11)! and therefore does she have any other BRIGHT ideas based on all her years of medical training (ie one well established by the medical community!!!)
I’m not sure of how the health system works over there, but honestly, I had the most luck with my GP. I have even cancelled my pead appointment because it is pretty much a waste of time! GPs seem open to try things and take advice in my experience. There is also more of them so you can shop around. Not sure if they can give you a script for neocate though (over here only a pead can)- that may be the stumbling block.
November 17, 2006 at 6:32 am #18215AnonymousInactiveI just don’t understand how there can be so many horrible physicians out there! It is really quite scary. I did go in there with so much information and it was like she just wasn’t hearing it. I swear, she was smirking at me when I asked questions about testing, etc. It was awful!
And, I just wan to say, if anyone is looking for a GI in Atlanta make sure to send me a private message so that I can tell you who NOT to go to! Thanks for sending the list of recommended doctors, Laura. It figures that I went to the right place, but saw the wrong person! Can I switch doctors within that same practice? I thought was a no-no…not sure if it is an option.
As far as the Neocate, I have been mixing it in slowly and am up to 1.5 ounces of 5 a bottle. She said, “even better than a prescription, I will give you a can” and did – BUT that’s not gonna last long! Especially if I keep increasing it. I need to make a decision on that because (and correct me if I’m wrong), I don’t really see the point in keeping it as is…which is what she said to do….but if I do it, then how in the heck am I ever gonna get a prescription from her? It’s going to take awhile to get in with some other GI, so I have to play my cards right here in the meantime….
November 17, 2006 at 6:45 am #18216AnonymousInactiveAnd I just thought of something else…If I change him completely over to the neocate, won’t it be pointless to do a stool sample down the road (I mean, wouldn’t it then not show any MSPI related issues like blood, mucous in the stool)? I would think that it wouldn’t. And, if we don’t have the medical info to back it up, wouldn’t it then make it hard to get insurance to cover the neocate?
November 17, 2006 at 8:23 am #18219hellbenntKeymasterJohannaC wrote: And, I just want to say, if anyone is looking for a GI in Atlanta make sure to send me a private message so that I can tell you who NOT to go to! Thanks for sending the list of recommended doctors, Laura. It figures that I went to the right place, but saw the wrong person! Can I switch doctors within that same practice? I thought was a no-no…not sure if it is an option…
how in the heck am I ever gonna get a prescription from her? It’s going to take awhile to get in with some other GI, so I have to play my cards right here in the meantime….
can you post a comment here: Looking for GI: https://www.infantreflux.org/forum/forum_posts.asp?TID=660
about your awful experience so people know who not to go to? And everyone else, feel free to post there as well as to your sucesses & failures w/ GIs.
I’m not sure about switching doctors in a practice? It wouldn’t hurt to call & ask the receptionist?
As for how to get the prescription for neocate, I already gave a suggestion, but after reading your posts, I think you make very valid points and are asking good questions & Im curious to see what others have to say…
hellbennt 2006-11-17 8:25:20 -
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