Seeking suggestions - writing a book for kids with IBD

[mganendran]

Hi All,

I hope it is okay to post this here. I'm calling on all parents of kids with IBD (or anyone really) for suggestions.

I'm an independent author and I'll be releasing a short fantasty/adventure novel soon aimed at kids of around 8 and up where the main character happens to have Crohn's. I was diagnosed last year and it was scary enough as an adult, so it made me think how it must feel for children and young adults, and I thought there was a bit of gap out there for books where the main character has a long-term condition but still manages to be a hero!

I don't want to overwhelm the book with details about the illness because it's going to be a story in its own right, but naturally it is a constant challenge for my character. So far I've included mentions, even briefly, of these aspects:

- Having side effects from medication
- Being scared about progressing on to biologics
- Constantly feeling tired
- Some bullying/name-calling at school
- Embarrassingly loud gurgles
- Always needing to be near a toilet
- Having to change the way you eat (my main character also used to be a vegetarian but has had to compromise on that due to her illness)
- Some sort of acceptance that it's not going to be cured and life is different from how it was before - "different, but okay."


If anyone has any ideas of elements of living with IBD that you think should be mentioned, I'd be really grateful! If your kids were to read the book, what would they like to see? And if you'd had a book like this as a child if you'd been diagnosed young, what would you have liked to see as part of it?

Thank you for your help!

 

[Jennifer]

This member has been approved by an Administrator to post this message.​

Hi mganendran and welcome to the forum. Normally something like this would need to be approved by an Administrator but I can also see that you're here as a member yourself and aren't just trying to "interview, engage in any commercial activity, survey members" etc. Since you're a regular member I'm not going to add the approved message under your title but will simply post it in thread so other members know it's ok to post.



As far as the book goes, I was diagnosed when I was 9 and did deal with teasing and bullying (they didn't know I had an illness, they made fun of the moonface from Prednisone). I was afraid to tell people about it so I wonder if maybe not being afraid to talk about it might be something worth adding.

As far as what you have already, I did deal with side effects but it was mainly my parents that were scared about me trying other medications yet the adult me is wondering if maybe those two might need something that helps the child not to be afraid of medication. At least I hope that's the direction it's heading. Everyone wants to be in remission and to just feel normal again and medication has the highest success rate in achieving that.

 

[Farmwife]

Hi and welcome.

My daughter was dx at 3 but it's now 9.

As far as a book.
My daughter doesn't want her illnesses to define her.
We've raised her this way.
I'm speaking for myself and not other parents.
As her parent we try to carry most of the burden of decisions and if we could we'd take the pain also.
Grace never feared moving onto new meds because we tried not to be scared of it (maybe alone in my bedtime I was). Every parent is different but I'm thankful for these meds.
I would want a book that shows how strong the character is because of how they leaned to deal with ibd as a child.
How this past experience gives your character of the book strength to deal with tough decisions in the here and now.

Most kids want to get lost in a book that builds their self-esteem. Encourages them for the for the future; even if the here and now seems scarey.
I think seeing a strong, self assured character would give them the most hope.

I'll ask my daughter her idea on what she would like to read.
Lol, she's 9 and it'll probably involve unicorns and dinosaurs.

 

[my little penguin]

No fear of meds
Most parents protect their kids from that
Mine was dx at 7
Age 14 now
Few kids do diet changes
That’s an adult thing for ibd
Being able to connect with friends online when not able to be at school
Handling hospitals and pokes etc when they have no control over it

 

[emmaaaargh]

I was diagnosed when I was 9 and I would have loved a book like this! I experienced all of the things you said you'd mentioned, including medication fears, because I was a pretty forward kid and started researching my own condition early. But I eventually realised I wasn't really scared of the biologics themselves, or the risks that came with them, because I knew that living with untreated disease was much worse - I was just afraid of the unknown. Lots of my childhood fears and anxieties associated with living with IBD (of MRI scans, needles, scopes etc.) were mostly just things I didn't have much experience with. Once you get the practice in - it's much easier!

I think the main message that I needed to hear as a kid was just more reassurance that it will be okay in the end. The journey is scary and doesn't always go as planned, but no matter how far away hope and happiness seem - they're there, and you'll reach them eventually.

 

[Maya142]

My daughter would say the side effects from Prednisone - she developed Cushing's syndrome, which came with significant weight gain, stretch marks, the puffy round moon face and the buffalo hump on the back of her neck. She HATED it. Well, still hates it. It has taken her about a year to lose the puffy face and she is only just beginning to lose the weight.

Besides that, hospital stays, missing out on regular kid/teen stuff (parties, events at school, not being able to play sports anymore etc), being unable to eat regular food, weight loss, having to go to school with a feeding tube.

The worry about not being able to get to the bathroom on time.

Most parents do protect young kid from the worries that come with moving on to meds like biologics.

But my older daughter was diagnosed as a teen and knew the cancer risks associated with biologics (since doctors have to tell you). So she worried a LOT about it in the beginning. Once Humira greatly improved her quality of life and her doctor talked to her about how rare the cancer risks were, she stopped worrying. But initially, she was very scared.

 

[happy]

Hi,
The fears and challenges with the tests (scopes, prep for scopes, prep for imaging).
Not being believed about how bad the symptoms are when they are present. (Teachers, family, other parents.)
How a child can go from being in pain on the couch to playing sports with their friends as soon as the symptoms get better--even on the same day.
Good luck.

 

[mganendran]

Thank you all for your suggestions which I really appreciate! I will definitely try to incorporate as much of this as I can into the story in the hope that it may help to give someone hope.

Thanks again

 

[Jmrogers4]

Growth development - My son was diagnosed at 10 and from that time until starting remicade at 14 1/2 there was pretty much no growth or development. Was consistently mistaken for 10 years old at 14 and being handed kids menus, cups, etc. Was a huge blow to his self esteem.