Help re School Talk re 7 year Old

[OrlaRi]

Hi Guys,

My little Girl Orla, who’s 7, had a scope on Monday & was diagnosed with Crohn’s. It’s all very new to us & I knew v v little about Crohn’s up til about 3 weeks ago when it was first mentioned as a possibility re Orla. She’s now on day 5 of an EEN diet.

Anyway, school re-starts this day week. I’m really really terrified that the diagnosis will change how everyone treats her. We’re considering really playing it down, so we don’t find Orla staying in during playtime, PE and/or us being called re every little complaint she makes. She’s too young to understand the full ramifications of blabbing it far & wide, and I’ve no doubt she’ll have her entire class told by 11am on day 1, especially with the drinks she’ll have for lunch.

I’m also concerned that play dates/parties might dry up if other parents fear her illness might create too much hassle. I might have considered sugar coating the diagnosis to Orla, to try to limit what she’d tell people, but straight after her scope, the consultant, dietician & nurse spoke to us at her bedside & she was able to repeat most of it verbatim on the way home!!

I’m sure many of you have been through this before so I’m hoping you can advise from past experience.

 

[Jmrogers4]

We've always tried to keep things as normal as possible. It hasn't kept my son from doing most anything he wanted. He was diagnosed at 10 years, he is 19 now and at Uni.
It was actually better the more open he was and just acted like it wasn't a big thing, most kids seemed to take it in stride and he was still the same kid before he had this disease.
Work with the teacher and school nurse about when to call. If there were issues he could go lay down for a little bit to see if that helped but school only contacted us if there was severe pain, in the nurses office several days in a row, or urgency/diarrhea did not allow him to participate (if he was in the bathroom more than he was in class).
Most people get to a point of remission and unfortunately, a lot of what you read here can be worst case scenarios because that is when you need the most support. We have many parents who slip away from the sight because their child is doing so well that Crohn's is not at the top of their mind and they and their child are just living life pretty normally.
I'm certainly not on here as much anymore, I do try and check in but my son has been in remission for the past 5 years and we were busy just enjoying life. Crohn's did not consume much of our time.
Good luck and keep us posted

 

[my little penguin]

^^^^yeah that and then some
Ds was dx at age 7 as well
He is now almost 15
It’s good to be open
Trying to sugar coat Crohns won’t do you or her any good
Her health comes first
Little kids are amazing and few ever had any issues with my kiddos Crohns
The road to remission can be bumpy and it’s goid for her to have friends
Most 7 years don’t understand what Crohns really is either
You can get a book called toilet paper flowers
There is a coloring book called ibd& me
These discuss healthy ways for her to deal woth crohns on s 7 year old level
By age 9 most kids forget what she has and she won’t talk about it
It’s also important for her to tell the teacher and nurse when she isn’t feeling well
She knows her body and you want others to respect that
Since belly pain can be serious in Crohns
Somethings need immediate action
Or there are consequences like hospitalization/surgery
So please do not tell anyone to ignore your child for fear of what others think
The school won’t coddle her
Quite the opposite
You will need to be her advocateto make sure they are treating her well when her disease is not under control

Crohns hurts
It’s causes pain when you eat
Pain when you sleep
Slows growth
Doesn’t get fixed quickly
Most take a year to get to normal

A new normal can be had
But you have to be patient
Ds was there woth the use of biologics


What maintenance med is she on?
Een induces remission but is not long term
Once food is ready introduced she will flare again

Most kids need a minimum of methotrexate
Some start on biologics
Ds started remicade at age 8

Good luck

https://www.goodreads.com/book/show/809126.Toilet_Paper_Flowers

http://www.crohnscolitisfoundation.org/assets/pdfs/ibd-me-ac.pdf


http://www.crohnscolitisfoundation.org/resources/guide-for-teachers.html


http://www.crohnscolitisfoundation.org/resources/guide-for-parents.html

 

[crohnsinct]

Hi there. Welcome to the group though I am sorry you have a need to be here.

My daughter were dx'd at 11 and 12 years old so a little different but once they were on the right medication at the right dose there was really very little difference between them and their friends. They lives very active and normal lives...sometimes too active for me! I don't think telling people she has Crohn's should cause them to treat her any differently or shy away from being friends with her. At least this isn't what we found. However, the school should know just in case she is having a flare and not herself or might need extra time on assignments and such but other than that it is pretty much business as usual.

 

[Farmwife]

Hi and welcome.
My girl was 3 when diagnosed.
By four she had a feeding tube placed in her nose.
Her Sunday school teacher told me a child asked her about it and she said, I need it to eat.
Her and the child went back to coloring.
Nothing more said.
It was a bigger issue for me!!!
It was hard to see my child different.
It hurt me as a mama (still does)
I've raised my now 9 year old to be proud of who she is but not to try to get sympathy for attention.
She's now a headstrong bundle energy.
She's still different but she relishes challenges and drives my nuts with her attitude.:ylol:
She'll be just like the others but her path will just take a different course to get there.

 

[Maya142]

Hi and welcome!
My daughter was much older when diagnosed with Crohn's- she was 16. So we didn't have to worry with exactly the same issues - she was too embarrassed to tell her friends at first, but over time, she was able to open up and talk to her close friends about the IBD. But she didn't want to tell her whole class - I think only little kids want to do that .

But at 17-18, she became severely underweight and had to go to school with an NJ tube taped to her cheek. So she was very visibly sick and kids did ask her what the tube was and what was wrong with her. In her case, the tube was for both Gastroparesis (delayed gastric emptying) and Crohn's. So she would tell her classmates that she had a disease that affected her stomach and she could not eat enough and the tube was to help her eat and because she was malnourished.

Most kids just asked once and then did not bother her. No one ever teased her, though she felt like everyone was staring at her at first. But thankfully, they got used to seeing her with the tube quite quickly and people stopped asking her after the first week or two.

Kids at 7 are likely to be curious but are generally quite accepting. I would just have her tell them she needs special food because her belly is sick and the food will help her get better - or something to that effect.

My daughter says she doesn't think kids have ever treated her differently because of her illnesses.

Good luck!

 

[OrlaRi]

Hi Girls,

Just giving you a quick update. Orla is now on Day 15 of her EEN diet. The EEN was a struggle at first, but she has adjusted, although we still have to modify what/how we eat around her. She started back to school on Monday, and I met with the principal and told her the whole story. My emotions didn't allow for censoring

The Principal was very kind. She informed me she has to tell the entire staff body, and also told me she will apply for hours for a classroom assistant for Orla, from our state health department. The teacher moved Orla to the nearest seat to the toilet and set alarms on her phone, so that Orla can have her EEN drinks 20 minutes before break-times, so there isn't pressure on her to be finished up within the usual 15 minutes. It also means that she not hungry so hopefully helps a little, when looking at everyone else munching down their varied lunches.

Orla is in her third year of school (age 7), and in the previous two years, would have regularly (maybe once a month), come into the student nurse for some extra TLC at break-time, and then would be off on her merry way again to play. Yesterday, this happened again, but as she's now diagnosed with Crohns, the reaction from staff was very different. She was brought into the Principal's office, Daddy & I were phoned against her wishes, and she insisted to all, that she didn't want to go home. I think it gave her a bit of a fright, as I think she was just expecting her usually chit-chat with the student nurse. I suppose the staff have to be extra careful about every little ill-feeling she has now, but I hope it doesn't escalate, as obviously, she'll learn not to tell anyone she's feeling unwell, if a really big deal is made out of it each time. Any advice on this? I guess it'll just take time for them to get to know her a bit better, so they can gauge the balance between actual illness, and situations when she just needs reassurance and encouragement. She has football at school today, so here I am at work, worrying about that, instead of getting on with my work

I'm also finding it really hard to get a good night's sleep - I fall asleep easily around midnight, but wake at 4am or 5am with all of this Crohn's stuff rolling round and round in my mind. Its so very difficult not knowing what the future will hold.

 

[crohnsinct]

Aw hun....be gentle swithyourself. It takes a while to have all this stuff be second hand and to not be front of your mind.

Football? The only thing I think might happen and I mean might, is that she may be a little more fatigued than usual. The reason being EEN. At the beginning, the kids are still getting used to the drinks, especially at school and they may not take in the proper amount of calories. So if they are under a bit, then they may be weaker or tire easily. Honestly though, it never stopped my two and my older daughter had cross country practice after school for two hours and followed that up with two hours of swim practice and she never missed a beat.

As to what the future will hold? I think if you read the success stories on here you will find that these kids are very successful and lead very normal, typical lives. I have really come to view the early days as a blessing as it taught my girls resilience and perseverance which translated to success in many other situations other than their health. Yes, there will be flares but since you know more about the disease you will spot them early and treat accordingly (usually just a tweak in med dosing, a short burst of steroids or a round of EEN, sometimes a med switch is in order).

I think with the nurse situation it will just take time. They are getting used to a new diagnosis also and it isn't their child and they are probably covering themselves a bit there. They will figure it out. Perhaps, if you have a meeting with the nurse and outline the types of things that you need to be called about and what she/he can simply email you about. For instance, if she goes in about abdominal pain, let her rest a bit and just FYI me but if more than once in a day call. If she is vomitting then that is an automatic call Crohn's or not. Diarrhea with a need to change clothes, fyi me. More than once a day call. Faintness, if it doesn't go away easily call (could be a sign of a bunch of things but anemia, malnourishment etc would be concern). Headaches let her rest and FYI. More than once in a day call.

 

[OrlaRi]

Thanks so much for your reply. They’re really practical suggestions about how to deal with the school. I’ve never had a conversation with the Principal before after 6 years of having kids in the school & this wk alone, I’ve been in contact every day - that’s daunting in itself.

The email suggestion is great as even a phonecall meant as an FYI leaves me strung out for the rest of the day. I’d LOVE if they had cameras the way some crèches do, as I’d be able to gauge how Orla is by looking at her.

The hospital mentioned that after Monday, Orla might be allowed crackers or toast which would be a huge boost for her in school.

I must read through the success stories on here, to help me get it in perspective. I keep imagining a life of sick-leave, surgery & depression for her, but please God that’ll only be if she gets it very severely.

Is it possible to have a severe case of Crohn’s versus mild or is it all down to compliance with treatment? I’m also wondering about her independence- will she be able to head off for summers abroad when she’s in college or will she have to stay close to her doctors? Maybe these are all questions that can’t be answered as it’s trying to predict the future.

 

[Maya142]

The one thing I've learned with this disease, it's that it is impossible to predict the future. We all wish for a crystal ball so we could ask for answers such as "Will this treatment work?"

I can say pretty confidently that your daughter will be ok though - even if she has severe disease (and yes, you can have mild Crohn's or severe Crohn's - sometimes, for unknown reasons, the disease is more aggressive). However, most of the time, even severe Crohn's can be controlled by medication, so it is definitely worth staying on top of treatment plans. It may take a combination of medications but every year (or every two or three ), new meds come out. And treatment options change.

So I'd say stay hopeful - she will have a bright future!

As for more logistical questions: studying abroad may be possible, depending on how well her disease is controlled at the time and what treatments she is on (if she is on infusions, it is harder but still can be done).

And as a success story - my daughter has Crohn's and is in college now. Her Crohn's does not bother her much - as long as she is on a biologic, it is controlled. She has been lucky, and anti-TNFs (she is on Cimzia now) really do control her disease and she has not had any complications, except for being underweight and requiring a feeding tube.

There have been so many success stories on the forum, if you can find the thread "Success Stories" on parents' forum, it is most definitely worth a read.

 

[crohnsinct]

My first Crohnie was dx'd at 12 (she is 19 now)and was so ill that she was admitted into ICU. It was very severe and things went downhill very fast. She got onto the right combo of meds and was quickly back at Schoo, running two hours a day and then swimming for two hours. For 4 years you wouldn't even know she had Crohn's. She was the energizer bunny, played in the school band, scholar awards, community service, sports etc. She went to High School and although she went into a mild to moderate flare in her junior year she finished high school never missing a beat with her sports, academics or community service. I live in California and she goes to college clear across the country. She still was in a bit of a flare her freshman year at college but again managed not to miss school and got excellent grades.

This older daughter has severe and difficult Crohn's.

My younger daughter has moderate Crohn's and since dx and getting n the right meds has had no issues what so ever and it has been 4 years. She also is an athlete and her disease hasn't stopped her one bit.

Both girls have been away from home on mission trips and to Sumer camps etc with no issues.

Yes, we have had to say no to a few things here and there but honestly every kid has to miss something for some reason...school dances, big sports games, concerts etc due to mono, flu, torn acl etc. Ironically the thing that upset my daughter's life and participation in most things was hip surgery and that had nothing to do with Crohn's!