Kids to adults …medical history

[my little penguin]

So Ds was dx at age 7
Now is 18 prepping for college and adult life (specialists on his own etc…)
Knows what meds he takes and when
Knows what meds he was on before kinda
However since he was so young at dx
He doesn’t really know what events happened when
The order meds were tried /frequency and why they were stopped
Granted he has been stable for the past 4-5 years so same meds
And fuzzy memory before age 10-13
just something to remember as we transfer care over to young adults
Especially the ones who started very young
They may not remember as much as you think since they were just busy being kids

 

[crohnsinct]

Yep!

We made a spreadsheet for/with O. Took her medical records and her thread here. Made columns. Date, event/procedure/test result ( scopes, flares, high calpro) actions (med changes, referral for procedures etc) Started from beginning. When she transferred to adult care they loved the spreadsheet and it really helped them get a quick snapshot of the disease course cuz her medical records are about a thousand pages.

Oh we also have a separate file with all her scope pictures because for some reason scope pics aren’t in her medical records and new docs live to see scope pics. Of course the MRI imaging disk as well.

Little known fact that I learned, adult GI’s don’t do upper endoscopy as much as pediatric GI’s. We had to bring it up and He agreed it was a good idea given O might get reconnected at some point so we need to assess TI health but then he didn’t biopsy it

 

[xmdmom]

A spreadsheet is a great idea!

 

[my little penguin]

Love spreadsheets -great idea

 

[Pilgrim]

Great idea. Additionally I sometimes forget who was scoped when because we have 2 kids with Crohn's among a busy big family. I definitely need to do this.

 

[Maya142]

We made a timeline/spreadsheet, similar to what CIC recommended. One column was the date and then we have significant events through the years, including major flares, hospitalizations, surgeries, major procedures (scopes, CTs, MRIs and MREs) and biologic changes. Every new doctor we see is very grateful because M had an extremely long and complex history which includes many different chronic conditions.

Another thing we did was make a spreadsheet of medications (with one column with biologics and another with immunosuppressants) tried by date - for example, tried Humira every 2 weeks for 3 months in 2010, every 7 days for 2-3 months, Humira plus MTX for 8-9 months etc. It works for M because she has tried a LOT of biologics (I think a total of 10) many of them more than one time (Remicade, Humira, Cimzia, Rinvoq etc), and then two biologics at once in various combinations, with different combinations of immunosuppressants (MTX, Imuran, Imuran + Allopurinol, MTX + Sulfasalazine, Arava + Otezla, Arava by itself, Plaquenil and sulfasalazine, imuran plus low dose MTX) etc. plus dose changes. I think for most kids you could put it in the timeline, but M has tried so, so many combinations at so many different doses that her list is separate. The list is especially helpful for appeals according to her doctors, since it documents everything she has been on since she was diagnosed and then they can use that.

A third thing M does is take a written update to her main doctors (GI and rheumatology) - she lists (in bullet points) what’s going on with GI issues, rheumatology, hepatology, chronic pain, endocrinology etc. since the last appt., including any tests she’s had. She makes it very short - no more than one page typically. She also writes a list of questions and concerns because it can be easy to get flustered or overwhelmed at an appt. and forget to ask a key question, but if it’s written down, the doc always addresses it. Both her GI and her rheumatologist scan her updates into her chart.

M takes the timeline to new specialists and second opinions and the updates to routine visits.

 

[Farmwife]

This is such a good reminder.
I definitely need to get on top of this before Grace leaves for college in a couple years.
A nurse asked Grace about her g-tube placement and she replied that she's not sure, she's always had it.
Another time a nurse asked about past meds, (my almost) 14 year old replies, "it's easier to tell you the ones I haven't tried."

 

[crohnsinct]

We use a sticker sheet and just print the meds on the stickers (like large mailing labels), this way when at a new doc/medical center's office you can just peel and stick. We did this when O went for her second opinion visit and later transferred care to that hospital. Between the GI, surgeon, anesthesia, RD etch saved her a lot of writing.

 

[Maya142]

Oh my goodness, Grace is nearly 14?! She was just a toddler!!! I can’t believe she’s so grown up @Farmwife!!