I'm confused!

[anonymous]

Hi!
I'm a mother of a 2 yr old daughter with CF. As I am sure you are aware, CF patients have a team of doctors to look after them. My problem is they do not seem to communicate as well as they should. In one visit, I am told to give her milk at every feeding as it is fattening (doctor) and then her nutritionsist comes in and says that that is wrong and she should only have around 15 mls daily.

I find I am having a hard time trusting doctors.

They've messed up on her medicine a few times already this winter (Once she was on Kelfex for 3 weeks, Ceptra for another 2 and then got switched to Sipro I believe it was called because when her throat swab came in, they realized that they had been giving her the wrong meds).

She is back on Kelfex but ran out at home so had to go get more at hospital. Pharmacist gave us Ceptra. Got home, realized what happened and called her CF clinic. Was told by nurse to just stay on that one then for 3 weeks (So because the hospital messed up, her antibiotics got switched but if that hadn't of happened, she would still be on Keflex!?) Anyways, nurse said to keep her on it for 3 weeks. Had to go to CF clinic today and was told by her doctor that she would be on it for 10-14 days. It just seems that everything is inconsistent...

She has been sick all winter<img src="i/expressions/face-icon-small-sad.gif" border="0">

Does anyone else have this problem?? And what do you do??

 

[anonymous]

Sorry you are having such a hard time! I have twins and one has had reflux alot worse then the other. They think that she may ahve aspirated her food and that is how she got pnemonia but they are not even sure, it just "looks like it". So my other twin was going into surgery for her Ileostomy to be closed and they asked if a wanted that fundo proceedure done that is supposed to stop reflux but it is a big proceedure and I didnt want it done so I told the surgeon that. I said she does not even have reflux that bad. So she said let me call your pulm dr and see what he says. She comes back in and said he said to go ahead and do it. I said WHAT???? I will talk to him and will let you know but I dont want this done. She gives me a real dirty look and said she will probably need it in the future anyways MOST CF people need it anyways. So I flew off the handle with the Pulm dr and was talking to his assistant and said all there was a mix up in the paperwork!!!!!!!!!! I was so freakin mad I couldnt see straight. So if I had never questioned it they would have done this on her that would have been life long for her when she didnt even need it!! Also by the way, my daughter that had the reflux kinda bad that they were saying was so terrible and everything else is doing great! Her weight is through the roof, she eats like crazy, and hardly ever has problems!!! So question EVERYTHING and do what you think is right, what you feel in your stomach, that feeling is usually right!!! I even write everything down to remember it and I research like crazy!!!!!! What you do now they will have to live with forever!! some drs just like to jump the gun. even our head dr of pulm said that to us.......

 

[enchantedpixie]

Wow! That is absolutely crazy! I am so happy to hear that your daughter was okay!
When my daughter was born, and she wasn't passing stool, the doctors at the hospital where I had given birth (not the same hospital where she goes for CF clinic, which is at a children's hospital) tried to convince me that she needed surgery, although no one could give me a concrete explanation. THey thought there was something wrong with her intestinal tract and wanted to snip it and reconnect it. I said no because they had nothing to base their reasonings for this on other than their assumptions! Then we discovered she had CF a few months later. I'm happy I didn't let perform surgery.
Thanks a lot for sharing your story with me. Looks like we both have been through our ups and downs as far as things like this are concerned. Thanks for the advice. I have started a log book for my daughter so I can track her meds and hospital visits.

 

[enchantedpixie]

By the way, so I don't confuse you, I am the one who started the topic but I hadn't created an account yet. It was my first time on the site and I saw the forums and just started typing!

 

[anonymous]

Well to add to your story..LOL The same surgeon tried to do the Ileostomy on my second daughter to and even made the date, but the surgeon on called tried his hardest to get the plug out and did! THANK GOD!! I think I probably could have got on my knees and kissed his feet!!!haha But if that surgeon would have got her hands on my second daughter they both would have had the surgery!! It is just crazy what can happen. I know you have to be sick of my stories!!LOL I hope everything is going better for you!!! Keep me posted of any wrong doings!!!<img src="i/expressions/face-icon-small-happy.gif" border="0"> LOL

 

[anonymous]

We have these problems, too. As much as they pretend to know our children and care, I think they forget about them the day after they're seen. I learn something new almost every 3 months that I need to keep better track of because they don't. Just to name one of the many frustrations, when we were new to CF 31/2 years ago, I was under the impression that if they grew anything in their throat cultures we would be notified because they had notified us that they both grew pseudonomas once. We didn't find out until almost 6 months after my daughter cultured MRSA. They waited until she got sick to tell us, either because they're idiots or just plain forgot to call. So that was when I realized that I had to check up on all the tests because they may or may not call.

 

[enchantedpixie]

Oh my gawd! They do that with my daughter ALL the time! Soemtimes they will treat her for what they think she has and then the culture swab test comes back, they realize oops! we've been treating her wrong...and that's when they give me the results! mMuch like you, sometimes I do not find out until MONTHS later. So wrong!!!

 

[anonymous]

Yes, I have learned to call after every visit to find out the throat cultures and x-ray results. A month after my son's x-ray, they called and said he needed to be on Pulmozyme because of some minor atelectasis. Experienced in x-rays now, I realize they could have discovered that minutes after completing the x-ray. Doctors/Nurses are human and they make mistakes - WE DEFINITELY HAVE TO KEEP UP WITH THESE THINGS!