Crohn's Disease Forum » Parents of Kids with IBD » Memory aid for parents to use at doctor visits


01-27-2013, 03:29 PM   #1
Patricia56
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Memory aid for parents to use at doctor visits

I have found this helpful - got it from someone on another forum. Makes it easier to frame questions and think about options when you are talking about new or different treatment options

BRAND

B - what are the Benefits of the treatment
R - what are the Risks of the treatment
A - what are the Alternatives?
N - what if we do Nothing (may include watchful waiting)
D - make Decision remembering that not deciding is in fact a decision
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Badger, 18, CD, overall great guy
Dxd age 10, 2006 after nearly 1 year of active sx
Current CD meds: Remicade, Methotrexate and Omeprazole, Vit. D, Calcium, Folic Acid, Probiotic

Nothing I say here should be construed as medical advice. I am not a doctor. These are just my opinions.

Last edited by Patricia56; 01-29-2013 at 01:53 PM.
01-27-2013, 04:08 PM   #2
Niks
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This is a great idea! I always have dozens of questions and after having a consultation nearly always forget most of them!!!!

Thanks
01-27-2013, 04:14 PM   #3
Jmrogers4
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Thanks, will have to remember this or print it out and bring it with me on wednesday
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
01-27-2013, 04:26 PM   #4
my little penguin
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Thanks !!
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01-27-2013, 08:08 PM   #5
Tesscorm
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Thanks!!

One of the moms also once suggested taking a copy of your questions and handing them to the doctor. I thought this was a great idea and it helped to make sure questions weren't missed.

(By the way... When I first glanced at the heading, I missed the last word... If you've read my recent updates re Stephen, I'm sure you'll appreciate my excitement thinking "OMG, she's got a tip for THAT !!! )
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
01-27-2013, 10:23 PM   #6
Patricia56
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Well I may have a tip or two for that but I probably shouldn't post them in public....

I have amended the title for clarity so that no one else will find themselves in your position.

Last edited by Patricia56; 01-27-2013 at 10:52 PM.
01-27-2013, 11:00 PM   #7
Tesscorm
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Lol. Wasn't necessary to change title . I shudve just read the full heading but my reaction made me laugh
01-28-2013, 12:57 AM   #8
Patricia56
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I realize that it wasn't necessary but it could have been clearer.

Besides I had to make that crack about your position. On the floor. Laughing.

Oh well.
01-28-2013, 10:22 AM   #9
Patricia56
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You know I think we could come up with at least a couple memory aids for doctors. What about:

you get a huge button made with your kid's name, picture and diagnosis and you wear it every time you go to the doctor's or the hospital.

do the same but it's a t-shirt.

Get some kind of goofy hat or maybe a bright colored baseball-style cap with "Badger's Mom" written on the front.

You could try painting your face blue or something like that to make you stand out from the crowd.

Wear a crown? Queen for the day

Carry a whip? Oooh I think I like that one the best. No need to actually use it. You could just finger it while you're talking with him or reposition it. Maybe a whip would be too obvious and you should try a riding crop instead.
01-28-2013, 10:41 AM   #10
Tesscorm
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LMAO!!! The last one made me laugh out loud!

Your first three ideas... button, t-shirt, hat... maybe have them made for, NOT YOU, but the doctor and his staff! You know, leave mugs for the doctor and staff with your kid's name, picture and diagnosis! LOL

Crown??? Maybe let the doc wear it during your apptmts!

01-29-2013, 08:47 AM   #11
crohnsinct
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I would just like to have a name and not constantly be called "mom". I am not even asking for first name..Mrs. blah would be fine but being boiled down to some generic "mom" just irks me. What does mom think, well mom how are things going. He doesn't remember my daughter's name or use it during appointments either BUT he does seem to remember every minute detail of her symptoms and care so maybe I am asking for too much.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
01-29-2013, 10:42 AM   #12
kiny
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I wish I made an overview for myself when I was diagnosed as a child, I had no real support, just on my own having to make calls I could not make. I decided to choose N, for nothing, it ended in ER on a cold table because I was losing blood, still thought it wasn't too bad for some ridiculous reason, I was invincible, my blood pressure dropped more, blood transfusion, infusions to close red blood cells, infusion that cloth blood, I could see doctors get worried and I started panicking too now, started hyperventilating, fingers started tingling and I got really cold, all went black soon after....a few minutes later I was consious again, cried so much, how could I be this stupid thinking I could do it on my own.

Don't choose nothing, diets and self-management seem tempting, but it's really easy to suddenly get put on a rollercoaster that goes downhill fast, it's must easier to choose a path that is only as risky as needed without choosing nothing.

There was a girl once on this forum, she said she didn't want to take pentasa because she hated medication and she didn't think the risks of it were worth it. Pentasa being so low risk, almost everyone immediately told her to stay on the pentasa and everyone shared their stories, she still said she didn't think taking it was a good idea, her crohn was "mild" and diet would solve it, she was just like I was before I got into trouble, I hope she didn't end up being so stubborn as me and picked the pentasa instead.

Last edited by kiny; 01-29-2013 at 11:08 AM.
01-29-2013, 11:08 AM   #13
Farmwife
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kiny
That's a very good reminder to us parents and any body with this disease.
I know we all might have different ideas on how to approach IBD but to do "nothing" would in the long run do more damage than the drugs with their side effects that might never happen.
But that's just my view, I'm sure someone could argue the idea.
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I'm mom to............... Little Farm Girl 9 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 2 wks
MTX started AGAIN on 11/21/17
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine,
Azathioprine
01-29-2013, 12:00 PM   #14
Patricia56
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I completely agree with you both when it comes to choosing between NO medical treatment and some kind of medical treatment.

But sometimes doing Nothing may be the right approach. It depends on the situation.

This memory aid isn't just meant to be used when first diagnosed or when choosing between No treatment and some treatment. It's meant to be more flexible than that.

There are times when watchful waiting - doing Nothing - is the right thing to do. For example, waiting another week or month to see if there's a bigger response to a new med or to see if liver enzyme levels come down on their own might be times when you choose to do Nothing - for now.
01-29-2013, 07:55 PM   #15
kimmidwife
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Patricia,
A great idea for a mnemonic and love the idea about reminders for the doctor as well!
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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
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