why dont they tell me

[damiensmom]

I wonder why I dont think to ask questions that really i shouldnt have to think to ask. What is it that they are looking for in hes throught and when will they tell me what they found ? I really think they should be a little more forthcoming with me I feel like im always left in the dark and untill Iask they arnt gonna tell me things,even when i do ask I feel sidestepped and it bothers me greatly. I am always very nervous when we go to clinic and I guess I expect to be told what they are thinking is gonna be Damiens progression in this. Why didnt the doc say were looking for this bacteria or that bacteria so we can catch this problem or that problem ect... ect.... and when the tests come back well give you a call. But no. I wonder how much they keep from me and why? Anyone feel this way.

 

[anonymous]

Wow, I am suprised you didn't already know that too. Did they give you any basic CF info when he was diagnosed (books, video, etc)? That will explain a lot of what the regular tests are looking for. When it comes down to it, you are your child's best advocate - which means you have to work extra hard at staying on top of things. Since you know him much better than the doctors ever will, if you can learn as much as possible about the disease (treatments, tests, symptoms, etc) then you may find that you in a sense become his doctor and the CF docs are there to give a second opinion, lol. My advice is to ask as many questions as possible!

Good Luck!!

 

[anonymous]

Does your clinic have a social worker? I know mine does and she has worked wonders for me. Most of the time I'm left feeling like a chump from my nurse practicioner (Ugh, I can't stand her) but when I meet with the Social Worker I feel validated. It's amazing. I know this has helped me.
I'm in a hurry right now or I'd write more.
Kelli

 

[vmhoward]

You are not alone,

When My son was first diagnosed I felt like they were doing the same thing to me, telling me what they thought I should know not what I needed to know. I was always wondering what everything was and why they were doing this and that. So I started asking every question imaginable and looking into other sources for information. Because the Doctors in the office dont know everything. Soon I was coming to them with new stuff I had found and they were using the information to help other kids. All in all for the first year after diagnosis I was angry alot. Mostly because they made me feel like I wasnt doing all I could at home as a mom and that was not right. I did everything they said to do and then some. But in my sons case it was just not working. It took a full year to get him on track and then another one just to get him on the growth chart. But to be honest with you somw of the things that they were telling me to do seemed quite strange. Like putting MCT oil in his formula or feeding him this crazy smelling stuff called Alumentum...ick...which he just threw up anyway cause it was just plain gross! But in the end I found things that worked for him and they were satisfied. Just be patient and ask lot of questions. It never hurts to ask questions and be informed. They cant be offended by that and if they are then they are in the wrong, not you! And I agree with Kelli, most centers have a social worker and they are usually very hellpful as a patient advocate. If you can talk to them is might help you in the long run. I know the one here at our center is a sweet and caring lady and will do anything to help us, and just be an ear to listen when I need it. Its always nice to have an ear! Anyway, hope this helped!


PS the throat culture is to find out what types of bacteria he grows in his lungs so they know how to fight it.
Victoria

 

[JazzysMom]

May I suggest keeping a log of ??? or thoughts that come to you inbetween the doctors appointments. That way you wont forget to ask or address things & can log what info is given to you in response. Dont feel pressured into NOT addressing things. Whether it be with the doctor, nurse or social worker. I know the log can be tedious, but it is of great benefit. I have knowingly been dealing with CF for 30 years & just started keeping a log this year. I no longer can keep track of things (too many years of info I guess) & JUST started taking notes because I got tired of leaving the office forgetting to ask/address something. My CF team is fabulous & we have a routine of what we go over every time, but things come up even if it is only for a day or two that I like documented should it arise again. You can be a great advocate for your child & stern with expecting answers without being a royal b----........

 

[debs2girls]

damiensmom, I can totally relate to you. I dont only feel sidestepped but also left in the dark. They are not doing anything really for Cheyenne. We are waiting for the results of the stool elastase test to see if she needs enzymes, other than that they are doing nothing to help her that we werent already doing for the asthma before dx of cf. We have never seen a dietician, social worker and only have one cf doc that comes in.
I was sitting here thinking about it before reading your post about how little they have told me, given me or helped me with....boy do I sound selfish...sorry.

 

[anonymous]

Have you checked out the webcast videos on cff.org? They are a bit long (approx. 1 hour each) but they give a lot of good info on standards for CF care (what should be happening at appts, treatments, etc) and they are a great source to help put together questions to ask. I always take a list of questions to my dd's appts bc we can easily get sidetracked and then I would forget. ALSO, I have an email address for the CF nurse - I email her anytime I have a question that I feel needs answered in between appointments. She always emails me back the same day (or the next day if she is out of the office or extra busy). I haven't met with our social worker since our introduction appt when we started at the clinic but I would guess that is the person who could give you the basic info (book, video, etc) that will help you have an idea of what is going on at each appt. It can be confusing and overwhelming at first but you will feel like a doctor, nutritionist and pharmacist before you know it!

HTH!

 

[anonymous]

I also have watched the webcasts on cff.org and wrote down questions to ask Kaits docs at clinic, it is such an informative website and i have learned alot and what i didn't understand i just ask at clinic, I do feel really blessed because Kaits CF docs really keep me informed and we LOVE the nurses.

Start to ask questions and they will have to answer them. I would only hope!!!

Kaitsmom<img src="i/expressions/rose.gif" border="0">

 

[anonymous]

I always have a list of questions before each appointment. And about a week after the clinic appointment, I go online and get a form to request medical records from that day -- I specficially check labs, culture results and any other info from that appointment. We usually get a written report from the CF clinic, but it's usually touch feely stuff -- not details about how DS is progressing. Or we have a doctor who disagrees with our specialist that we see at the CF clinic 300 miles away and will spend most of the time badmouthing what we're doing. Our response is -- seems to be working!

 

[vmhoward]

Reply to Anonymous Posted Jan 5 2006 @ 9:26 am

Is that website only for your clinic where you can view the results of the test. Because I would like to be able to view Garrans as well, but have never been given the option?

Thanks
Victoria

 

[anonymous]

Some clinics have online requests -- think you have to register in person prior to that 'cuz of HIPPA requirements, but with our clinic, we can fill out a form online to make the request for the information and then they mail a hard copy to us.