Every parent's tool kit

[Patricia56]

Who has suggestions for things that parents of IBDers should have available (both information and practical things) to help them manage their kids illness?

Obviously what you need is influenced to some extent by the age, gender and degree/type of illness your child has but go ahead and share, who knows who might find your ideas helpful?

I can list some things:

1. Child-friendly pain scale (especially important for parents of kids under 11 or so). You can get one to print at home at:

http://0.tqn.com/d/pain/1/0/N/-/-/-/wong_baker_faces.gif

2. Stool-catcher/bedpan for toilet

3. Rice packs for sore tummys

4. Tylenol with clear instructions on correct dosing by weight. If you keep this in a medicine cabinet you might want to make a sign to post on the inside that says in big letters what the right dose is. The middle of the night is not a good time to read those tiny words on the bottle label.

5. List of emergency contact numbers for your ped GI, pediatrician, neighbor/family who can watch your other kids if you need to go to ER - POSTED in plain sight by a phone; make the list easy to read, at least 14 pt font if you're printing it out

6. List of your child's meds and allergies that you carry with you in your purse/wallet

 

[izzi'smom]

Who has suggestions for things that parents of IBDers should have available (both information and practical things) to help them manage their kids illness?

Obviously what you need is influenced to some extent by the age, gender and degree/type of illness your child has but go ahead and share, who knows who might find your ideas helpful?

I can list some things:

1. Child-friendly pain scale (especially important for parents of kids under 11 or so). You can get one to print at home at:

http://0.tqn.com/d/pain/1/0/N/-/-/-/wong_baker_faces.gif

2. Stool-catcher/bedpan for toilet

3. Rice packs for sore tummys

4. Tylenol with clear instructions on correct dosing by weight. If you keep this in a medicine cabinet you might want to make a sign to post on the inside that says in big letters what the right dose is. The middle of the night is not a good time to read those tiny words on the bottle label.

5. List of emergency contact numbers for your ped GI, pediatrician, neighbor/family who can watch your other kids if you need to go to ER - POSTED in plain sight by a phone; make the list easy to read, at least 14 pt font if you're printing it out

6. List of your child's meds and allergies that you carry with you in your purse/wallet

What fun is stool sample collecting without tongs or a ladle?
:ylol2:

 

[Patricia56]

:rof::rof::rof::rof:

:stinks:

 

[Tesscorm]

In the list of emergency numbers, I also have our pharmacist's number handy - not always for crohns' issues but over the years I've had to call re dosage, combination of meds, renewal questions, questionable reactions, etc.

 

[NMMom]

This is awesome!!!Thank you!!!!!

 

[Farmwife]

You know how farmers hate to leave the farm.
My hubby is convinced once we leave the safe-haven of farmland any and all things bad might happen.:voodoo:


If going on a trip, having a map with hospitals and rest rooms
mapped out would be wise.

I bought a TOM-TOM for hubby's b-day.
So no reason why he can't take us on a trip!!!
I'm still waiting.:shifty::shifty::shifty:

 

[Mom2oneboy]

Heating pad!

 

[DustyKat]

Obtain copies of all test results (blood, scans and so on), doctors letters, discharge letters from from hospital etc. Copy results and make up two files, one to keep safely at home and a second file that is handy to grab if need to make a dash to the ER. Also take it when you are going away on holidays.

A dosette...

...they come in all different sizes. The individual containers are normally removable so you conveniently take the one container if you are going out for the day. When Matt was taking meds three times a day it was easy to fill each week and quick to see if doses had been taken. It also gave me time to have scripts refilled.
Now that he is down to daily meds I have one like this...

...he is responsible for his own meds now but I can still check up on him! :eek2:

Dusty.

 

[Twiggy930]

I can't stress how much I LOVE the pill containers Dusty has described. Super easy to double check that meds have been taken!

A calendar where you can record symptoms, appointments, the stopping and starting of various meds. I take mine with me to doctor appointments.

 

[Twiggy930]

I am pretty sure if you asked my son he would say that the iPad is also an essential tool. He uses it in waiting rooms, in bed when he needs a distraction from pain and, of course, on the toilet. In fact, when things were bad, the last thing I would do before I went to bed was to make sure the iPad was next to the toilet in case he had to spend some time on the toilet in the middle of the night...

 

[Clash]

This may be a bit off topic of the essential tool list but do any of the rest of you have kids who have to participate in the Accelerated Reader program, where they have to obtain so many points per qtr or semester by reading books? C has gotten in the habit of taking the book or kindle to all appointments and gets alot of reading done during waiting times, infusion times and such! We have been ahead in books since infusions started!

 

[Patricia56]

Here's a link to the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition IBD Notebook.

This is a very complete resource that you can download that is geared to keeping complete records of your child's diagnosis and treatment.

http://www.naspghan.org/wmspage.cfm?parm1=477

Anyone have anything else to add to our list of essentials?

 

[Tesscorm]

Thanks for the notebook link!

 

[Patricia56]

bump