Suggestions needed for 1st Clinic Consultation

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ejwiegert

New member
We have an appointment on June 26 to meet with a nurse practitioner at the Emory/Egleston clinic in Atlanta. She is going to meet with us to answer our questions about Abby and what to expect after she is born. AND they will do the genetic test for Lucy to see if she is a carrier, has CF or is completely CF free! What a relief!

Dave will be unable to go, but my mom has offered to go with us. I'm hoping that she'll think of questions that I might not think to ask.

Any suggestions for making this a good appointment?

Do you remember your first clinic visit? If so, were there questions that you forgot to ask that you wish you had?

Thanks in advance for all of your help!

Em
 
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anonymous

New member
My wife and I feel best about our son's CF (he's 3) when we feel like we're not being surprised by the Doctors at his CF clinic visits - so we've learned to do a couple things to help make them tell us everything they're thinking/planning. Here are just 3 suggestions to get this thread rolling:

1. Write down our questions, no matter how big or small they seem to us, in advance and ask them one at a time and write down the answers the Dr. gives - and if the answer is not crystal clear we make them try again so we understand it.

2. Press the Dr. to lay out their plans for the future at each visit (since the Dr. tends to adjust plans based on what they see at the exam). Things like what sort of tests they plan to do and when, what goals they have in their mind for growth, eating, etc. There's nothing worse than showing up at a clinic visit thinking you're doing great only to hear the Dr. sound disappointed at the baby's rate of growth or whatever.

3. Always ask for free samples of anything and everything you use: formula, medicines, nebulizer parts, you name it. We did this with the Pediatrician and never bought another drop of formula once the nurse learned we were their only patient who ate Alimentum (a special formula lots of CF babies drink).
 
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anonymous

New member
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ejwiegert</b></i>

We have an appointment on June 26 to meet with a nurse practitioner at the Emory/Egleston clinic in Atlanta. She is going to meet with us to answer our questions about Abby and what to expect after she is born. AND they will do the genetic test for Lucy to see if she is a carrier, has CF or is completely CF free! What a relief!



Dave will be unable to go, but my mom has offered to go with us. I'm hoping that she'll think of questions that I might not think to ask.



Any suggestions for making this a good appointment?



Do you remember your first clinic visit? If so, were there questions that you forgot to ask that you wish you had?



Thanks in advance for all of your help!



Em</end quote></div>


Hi Emily

My situation is different as I found out my daughter had CF when she was 6 weeks old after screening. Please don't take offence, and I'm sure that your husband has every good reason for not attending your clinic appointment, but I do really think that he should attend with you. My husband attended our first clinic appointment, I needed him there! Also, when you have the genetic test for Lucy, I really think you should have this done on a different day. Perhaps you feel differently about this, but maybe you are taking too much on board in one day. Maybe have this done separately.

That's just me anyways.

Let us know how you get on and good luck.

Charlotte<img src="i/expressions/face-icon-small-wink.gif" border="0">
 
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anonymous

New member
Ps Forgot to say same as 'Anonymous' has said, it makes things much easier if you write things down, cos you'll probably forget what you want to say/ask as there is so much going on.

Charlotte<img src="i/expressions/face-icon-small-confused.gif" border="0">
 
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Ratatosk

Administrator
Staff member
I keep a list of questions in a word file in my computer along with the drugs Max is on. Even though they have the information in their computers and his file, it's on paper, so if they need to change anything it's right in front of them and they don't have to dig thru their paperwork.

Free nebulizer cups -- just one less thing to worry about figuring out where to get them from.

Also, bring along a notebook to write down information. I always forget how much Max weight, what percentile he's in and my inlaws and parents always want to know that info <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
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anonymous

New member
I just wanted to add that i agree with Charlotte, you really are going to want to have your husband there. Even ,now, when we go to clinic even if it's a "routine" visit it's overwhelming at times. My husband does not go to all CF appointments with me because of course he to work but when he does go I can't believe sometimes the info I miss and he remembers. Also, it's helpful to have someone entertain the child while you listen to the doc. Children can be obviously distracting and it's hard to listen and retain info while a child is crying in your ear.

I am always emotionally drained after clinic appointments. It always that reminder that yes my child really does have CF.

TAke care,

Rebecca(mom to Sammy almost 8 no CF and Maggie 3 1/2 with CF)
 
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Jane

Digital opinion leader
I agree about the notebook. We always bring a notebook and write down everything. Clinic visits are often overwhelming and exhausting. When you are home and focused you can review your notes. Then you can look up stuff or call the nurse for clarification. I put tabs on the corners of each clinic visit end page. That way later I can find things more quickly. I now have things color coded for each boy and use a different highlighter for weights and medicine.

I WISH I HAD THIS SITE WHEN MY KIDS WERE DIAGNOSED!!!!!!!


The first clinic visit for us was a huge blur. Funny now I can remember it all very clearly. Etched in my mind.

Good luck.
 
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Alyssa

New member
One thing that is different about your first visit is you are still pregnant - the visit may be more "general terms" kind of information, since they will not know yet what Abby's unique situation will be.

My husband was not able to attend our first clinic visit either. I bought a good tape recorder and recorded everyone's conversation with me that day. I had intended to have both my parents and my husband listen to it, but they never did ~ I ended up just answering all their questions and giving them the highlights. But I felt better knowing the actual recording was there if I ever needed it.

Ditto to making your list of questions ahead of time and writing down your answers to look at later on. They will also most likely give you some printed material to take home -- I remember getting a 1/2 inch thick book about CF ~ in it was information about the "bad bug" I wanted to remember "psuedomonas" to which I still have my hand written note next to it reading soo-doe-moan-is so I could remember how to say it.
 
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anonymous

New member
I agree with everyone else regarding bringing a notebook. I have two daughters with CF, and I always carry a small spiral notebook in my purse. I keep all phone calls, medications, doctor appts., weight, etc in there. You just never know where you will be when you have a conversation and you need to answer questions about meds or something. It has been extremely helpful. Then I keep a seperate file on each daughter that has a copy of the PFT results printouts, as well as I have stapled in growth charts so I can track their progress.

Being she hasn't been born yet, you will probably learn how they normally do things at your specific clinic. It's hard to say exactly what to expect since she hasn't been born yet. But, I am sure that you already know that.

Good luck on the birth of Abby!
 
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julie

New member
No advice for you as I just kind of go as a tag along to Mark, he's pretty much out of questions for the doctors right now. but it sounds like what everyone else has suggested are great ideas.

Just wanted to wish you the best on this first appointment. I can imagine it will be nerve wracking for you and it's good that someone else can come along in Dave's absence. Hope you two aren't running yourselves ragged between moving, relocating, work, taking care of Lucy.... get some help for a few hours, even while you are home. You'd be surprised how willing a neighbor might be to come over and watch Lucy so you can put your feet up and take a nap for an hour or so!!

Keep us posted!
 
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JRPandTJP

New member
These are just my opinions:

Tne thing that always helps me is to go in with the attitude that no one can tell you how your child will do and that is a good thing. The generalized statements like "usually kids with CF..." or "by age __ we start seeing" or "sometimes the liver..." don't mean anything for Abby. Take nutrition advice with a grain of salt since it isn't much help in my opinion (I've learned more here and on my own). Let then know you see them as one part of the team with you as the leader. You expect them to prove to you the reasoning behind anything they recommend.

If you intend to breastfeed state this now so they are aware and you can feel them out about their level of knowledge and support (and attitudes). Share with them the research you've done and you may even want to visit a LaLeche meeting before birth to help support you further. I think we've talked about this and it reallly is one of the best things you can do for your baby whether they think so or not.

Good luck and I have one tomorrow so I'm reminding myself of these things as well. I think you are very forrtunate to know have prevented Ben from suffering undiagnosed. You have such a wonderful opportunity to set the tone with them during a non-stressful time (no health issues). Just know there is a great possibility your baby will just nurse and grow the first year with little to no issues, maybe some enzymes. This happens and it can happen for your little Abby.

Warmly,
Jody
 
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JRPandTJP

New member
Oh and I never take my daughter with me. Not because I am protecting her from anything it just helps me to not have to focus on her questions and needs when I am trying to keep him from touching everything and listen to what they are saying. It just puts my mind to ease to not have to worry about her hearing things and then trying to explain it later. (she is 6)

Julie has a good idea about neighbors.
 
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