Unsure about new doctor need your advice

[kimmidwife]

Hi friends I hope everyone is having a good day. Caitlyn woke up feeling really badly so we managed to get her an urgent appt with the new doctor. The visit left me feeling very unsettled. There were a lot of positives but some big negatives too. I am going to do a list of both and see what you all think.

Positives:
1.Accommodated getting Caitlyn in quickly
2. Very nice office staff
3. Pretty close to home
4. Didn't want to run to put Caitlyn immediately on steroids without making sure she really is in a flare.
5. Doesn't want Caitlyn taking a proton pump inhibitor such as nexus or Prilosec because she has been on them for a long time and they have potential side effects such as bad for the bones. So she explored other alternatives.
6. Wanted to make sure this is a real flare with further testing. Starting with blood work, fecal calprotectin, imaging, and colonoscopy/ endoscopy if necessary.

Negatives
1. Waited over an hour plus in the waiting room
2. She was very rude to me and my husband basically did not want to hear anything we had to say only wanted to talk with Caitlyn (which I know is somewhat good because Cailtyn is growing up but she doesn't always remember everything she is still young)
3. She didn't want to listen to any suggestions we made. We asked about the EIM in the lungs and shortness of breathe and she brushed it off.
4. The LDN at first she immediately said she did not know if she could take care of Caitlyn because she knew nothing about LDN but when we said none of our others doctors did either and told her how well Caitlyn has done over the past two years she kind of reconsiderd on that.
5. She was very forgetful and we had to tell her things several times. It is a lot of information though maybe we were just telling her to fast. Caitlyn does have a pretty extensive history and case.

What do you all think? Should we give it a little time and give her a try or should we keep looking for a new provider? She is the only woman provider nearby though Caitlyn said she would see a male doctor if need be.

 

[kimmidwife]

PS. My husband really did not like her.

 

[Tesscorm]

What's your gut instinct telling you? Why didn't your husband like her? Did she really totally ignore all you had to say? Because I'd be worried about that... it's great that she wants to hear from Caitlyn, as she should, however, she should also take into consideration Caitlyn's age and consider your information as just as important.

Did you leave feeling like you hadn't been given the opportunity to pass along important information? A doctor not listening to important information you need to pass on could certainly become a problem, however, if she listened and then dismissed it... well, not nice but, perhaps she just doesn't have the bedside courtesy to explain why she dismissed it (as long as she did listen though). Make sense?

As far as the wait... when S and I went to see Stephen's GI for the first time, we waited well over two hours!!! We, especially S, was pissed!!! But, it's never happened again... so maybe just a busy day.

From your positives, i'd be really happy with her choices (ie taking history into consideration re the PPIs, wanting to be assured of a flare before putting Caitlyn on meds but not just taking just a 'wait and see' approach as she's suggesting testing right away.

How was she with Caitlyn? Did Caitlyn feel comfortable and did the doctor take her comments/questions seriously?

Sorry, have more questions than answers for you!

 

[my little penguin]

1. Waited over an hour plus in the waiting room
2. She was very rude to me and my husband basically did not want to hear anything we had to say only wanted to talk with Caitlyn (which I know is somewhat good because Cailtyn is growing up but she doesn't always remember everything she is still young)
3. She didn't want to listen to any suggestions we made. We asked about the EIM in the lungs and shortness of breathe and she brushed it off.
4. The LDN at first she immediately said she did not know if she could take care of Caitlyn because she knew nothing about LDN but when we said none of our others doctors did either and told her how well Caitlyn has done over the past two years she kind of reconsiderd on that.
5. She was very forgetful and we had to tell her things several times. It is a lot of information though maybe we were just telling her to fast. Caitlyn does have a pretty extensive history and case.

Ok
The big difference is she is an adult Gi
So it is NOT family centered care.
She is treating your dd like an adult .
The wait - well you said it was an urgent appt - typically these are squeezed in or double or triple booked with the docs ok.
I would wait to set how long a normal appt was.

As far as not listening to your suggestions I agree with Tess.
Most ped gi try to make it a group decision process with the whole family .
Some adult docs like to state this is the plan period.

LDN I wouldn't put that into the equation since most gi's tend to have that as an education point.

Personally I would rather have a wonderful doc who was far vs one I wasn't as comfortable with close to the house.
I know you don't like to drive but anything less than two hours is really good plus you are not driving there every week kwim.

At the end of the day if your dd doesn't like the GI then maybe you should move on .

 

[pain in the butt]

Well it sounds like there's a lot of positive things. As far as waiting an hour I think that really stinks, but also kind of goes with the territory of good old Dr. appointments in general. But as far as being ruled and not listening would really piss me off, especially if it's for my daughter. I totally understand when doctors want to talk to the patient themselves , but come on, I'm 49 now and have brought a friends with me and husband to help me remember things and ask questions that I have forgotten myself. I just can't imagine a doctor having such a terrible bedside manner. If she's really a good doctor for your daughter. I would call her on it and ask her straight out why she's doing that in a polite way. Of course. Sorry if I sound harsh, but sometimes I wonder don't they understand how much your going through already. Of course, only you guys can decide what's best for your daughter. Again, sorry for what you had to go through and I'm hoping you can get this resolved sending hugs your way

 

[kimmidwife]

Ugh!!!! I really don't know what to do and now on top of it Caitlyn really is in pain and we are thinking of what to do if she needs to go to the hospital. It said online this new doctor was affiliated with a hospital that had odes but her office said she is not affiliated with that hospital so it must have been a mistake online.
I wish more doctors took our bloody insurance it is so frustrating!!!!

 

[kimmidwife]

Good morning all,
Still debating on what to do. This morning Caitlyn woke up feeling terrible. She says she feels like something ripped apart in her stomach and she feels all achey kind of like when you have the flu. Despite this she forced herself out of bed and is getting dressed to go to the homeschool coop she goes to on Wednesdays that she loves. They are having a pizza party today and she does not want to miss it.
I am hoping maybe some fellow Floridians can chime in about their doctors and give us some advice. At this point I'd even be willing to take her up to Orlando or wherever just to get a good doctor. It is so frustrating!!!!! I definitely think this is the worst flare she has had since being on LDN.

 

[DanceMom]

We use Nemours Hospital in Orlando and really love it there!

 

[kimmidwife]

Thanks dance mom!!!!!!

 

[kimmidwife]

Dance mom,
Do you know anything about Arnold Palmer hospital? It came up as one of the best I. The country for GI and is in Orlando.

 

[DanceMom]

No, we've never been there so I don't know anything about it. Nemours is new to Orlando (yesterday was the hospital's 1 year anniversary) and we started there shortly after it opened. I'm very happy with their online account system (so I have access to A's medical records) and their financial department has been very gracious allowing for a convenient payment plan. Not to mention that everything is nice and new and the hospital is absolutely beautiful.

 

[kimmidwife]

I am freaking out, I have spent hours and hours researching doctors and hospitals and Caitlyn just texted me that she is feeling awful and my husband wants to take her in and I don't know where we should go. The referral person in our doctors office says we should go to Joe Dmaggio but I am not sure, the doctors there don't take our insurance so if we end up liking them we can't continue with them. So now I am thinking university of Miami. It was ranked like #22 for peds GI in the country but I am just not sure. I am not so happy with Miami.

 

[my little penguin]

Can you take her to Orlando ER ?
You just happen to be in the area sorta thing

 

[kimmidwife]

we thought about that but everyone is telling us to take her to Joe Dmaggio in Hollywood Florida. they are saying thru have a real gi not a resident on call 24 hours a day. I am Very torn about what to do.

 

[LodgeLady]

I think it's extremely important to have a good relationship with your GI doctor. This disease is so time consuming between all the testing, medication trials, changes in symptoms. I switched to a new GI dr. after having everything but Crohn's tested for and him basically throwing his hands up. New doctor finally gave me the diagnosis. Find a doctor you can relate to.

 

[kimmidwife]

well we finally took her in to the hospital and they admitted her.they didn't do much last night just hydrated her.her labs of course were normal. my Husbad is waiting now for the gi doctor to come make a plan. she is npo (no food) so if they hopefully decide to do some tests she is ready.

 

[Tesscorm]

Hope you get some answers quickly!! :ghug:

 

[Jmrogers4]

Sorry to hear Caitlyn is in the hospital. Hope you get answers quickly.

 

[kimmidwife]

They did an MRE and we are waiting for the results.

 

[xmdmom]

Hope she is feeling better soon!

 

[Clash]

Hope she feels better real soon and you get all the results quickly! HUGS!!

 

[kimmidwife]

update:
finally saw the gi doctor.hee was nice. he said the MRE looked prefect. he wants to do a few things.because of all the nausea he wants to do a stomach emptying scan to check for gastropoesis.the because of her shortness of breathe he wants her to have an echocardiogram and a chest x ray. he seems pretty progressive.I will keep you posted.meanwhile looks like they will keep her at least one more day.also forgot to mention she had bloody Bm last night am wondering why if her MRE looked normal?

 

[xmdmom]

Glad that the MRE looks good and hope that there is nothing serious. Which hospital did you end up going to?

I'm not sure what you meant by your last sentence (forgot to mention....).

 

[Niks]

Glad MRE was good, I really hope they find out what is going on and really soon!!

HUGS :ghug: xxx

 

[kimmidwife]

Update 2:
EKG was abnormal. She has a very slow heartbeat for some reason. We had the ECHO have to wait for the results. She continues to feel really ill after eating. I read the MRE report it was absolutly normal. What could be causing this pain? Do you think we should ask for a pill camera? Will it show more then an MRE? She will have the gastric emptying test tomorrow. They were unable to do it today.

 

[kimmidwife]

Update 2:
EKG was abnormal. She has a very slow heartbeat for some reason. We had the ECHO have to wait for the results. She continues to feel really ill after eating. I read the MRE report it was absolutly normal. What could be causing this pain? Do you think we should ask for a pill camera? Will it show more then an MRE? She will have the gastric emptying test tomorrow. They were unable to do it today.