frustrated with the GI

[Anonymous]

so, we’re seeing a GI at Univ.of MO. they are wonderful there and really seem to understand what’s going on… until recently. we’ve been calling htem for over a week because Joe is doing really bad. it took a week before they got back with us, despite us calling every other day and then, their solution was to put him on Reglan, WHICH HE CAN’T TAKE! and they know this because they put him on it before and then d/c it because he gets very shakey and irritable. he has gained a bunch of weight and according to the dosing calculator his does of Zegerid is too low and i totally agree with this. WHY won’t they just up his dose! arg. i’m so frustrated. it is know with Joe that he needs to be on the highest dose for his weight. it’s just how it is. his current dose isn’t even in his weight range. so when they called me on Friday to tell me to give him Reglan and i informed them he couldn’t take it, the doc is out of the office til Monday. so it will be 2 WEEKS of calling and Joe screaming before we might get the dose changed.

i’m just at the point where i want to scream at them. it’s so obvious to me what is going on and trying to convey this to them… we’ve been dealing with reflux for 7 months now, we know the signs of lack of meds by now. i wish they would listen to us…

[Anonymous]

Oh I’m so sorry your having problems with your GI Anne! How completely frustrating! Do you have a family doctor that you could take Joe to to get a higher dose of Zegerid? Our family doctor is the one who originally gave Bryce his higher dose. Just an idea. I know family doctors are many times more open-minded about these things. Good luck! I hope you can get him a higher dose soon and things get better for you.

[Anonymous]

If you are comfortable with the marci-kids dose then up it yourself. He is your baby and you have the right to do that.

[Anonymous]

Sorry if this sounds ignorant, but is MO Missouri? Sorry I’m Canadian so don’t know much about US geography if I’m wrong. If so, then call Dr. Phillips and see who he recommends. He deals with a few of the GIs on the team quite regularly, and if you tell him the problem, I’m sure that he can help you out. I hope that things improve soon. Good luck.

[Anonymous]

I would try upping the dose myself and when it works, point it out to them!

[Anonymous]

I am so sorry! I agree with the other ladies here. I wish you all the luck getting the dose increase. It is so hard seeing them in pain!

[Anonymous]

he’s seeing a GI with the MARCI-kids team already. and yeah, we have already upped the dose. he’s doing well with it but i’m afraid that the GI will get mad at us. a child in his weight range should get 7-9mg of Zegerid 3x daily. we did 8 for a week and it did nothing. at 9 he’s been just fine. he’s been on 9 for a few days now and we’re definitely noticing the number of episodes decreasing. how do you go about telling the GI without them getting really mad. we’ve been told that by doing stuff like this they can refuse to treat you. they got mad when we stopped the Reglan and didn’t call immediately (we called a few days later because we were out of town) but he had neuro problems and the med fact sheet said to d/c right away. what’s your experience with upping meds on your own?

[hellbennt]

well, some people get mad at me for this suggestion- so take it or leave it– but what I might do (haven’t ever done it but it seems like my ‘style’ ) is to play dumb…tell the dr that due to crazy hectic schedules in the house and because of the baby doing x & y & changing schedules and everything that you & your husband didn’t realize you were both giving the baby his meds: that it was you, then he was supposed to do the night dose, then you switched one time bcse of schedule change, and to make a long story short, you both were giving the baby meds w/o realizing it for a while and it wound up being x amount a day and…WOW!!! it WORKS!!!! so let’s stay on this dose

[Anonymous]

I just didn’t tell my doc. She never knew the difference.Or Maybe she did and just didn’t say anything.

[Anonymous]

im really surprised the marci kids team put your child on reglan. dr phillips and i used to email back and forth when my son was having problems and i had a doc that refused to prescribe PPI;s but had no prob handing out reglan. dr phillips said absolutely do not put your child on reglan. all he needed was a high dose of PPI. dr phillips called our doc and persuaded her to prescribe a PPI.

[Anonymous]

oops..i posted twice shanesmom2007-09-16 20:33:52

[Anonymous]

I would tell them that you upted his dose because you couldnt get a hold of him..and your child needed some relief! And dont be scared of the doctor.. he works for YOU. If he doesnt want to work w/you and if he won’t up his dosage, you need to find a new GI ped anyway! 😉 I would also get angry that they prescribed reglan AGAIN as well!

And Its soo crazy that you should wait longer then a day..maybe two at the most for a call back! Our nurse at our Gi’s office gets back to at the end of the day! And if i say its urgent they will call during the same day.

I would also put a call into his regular ped’s office..and try with them to get the go ahead.. explaining that you cant get a hold of the GI doctor (if your GI doctor doesnt get back to you tomorrow).

[Anonymous]

our regular ped is out on maternity leave til next week. plus, she won’t do anything with his reflux meds because one time she did change what a specialist had said (not with Joe but another patient) and the specialist ripped her a new one. so, now if any patient is seeing a specialist for any reason she won’t address anything that should be addressed by the specialist. i don’t blame her but it sucks cause she is way easier to get a hold of.

[Anonymous]

I totally agree with Shane’s mom. If anyone should be mad, it’s you for the lack of an adequate response from your GI! I live in MO also (in St Louis) and we see Dr Lynda Brady at St John’s Mercy Medical and we love her. Don’t know how far a drive that would be for you but wanted to share just in case. Also, if I were you, I would call Dr Phillips and explain the situation to him and get his feedback. Just because he and your GI are on the same team doesn’t mean he necessarily knows what’s going on. Good luck!

[Anonymous]

kelly, we actually live in IL about 2 hours north of STL. we go to STL pretty often for Whole Foods and “real stores” that we don’t have here, lol! we were seeing Dr. Rosenblume and he refused to up his meds past 1.2mg of prilosec twice a day. we stopped seeing him right away now we go to Univ.of MO since Columbia is the same drive as STL for us.

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