Very young Crohn's diagnosis

[Kirova]

My younger daughter (aged 4, started Reception this term) has just been diagnosed with Crohn's Disease, following months of illness and investigation. It's a relief to know what it is but I can't stop feeling horribly guilty. As far as I understand, 4 is incredibly young for a diagnosis of this condition (although not unheard of) and I feel like it must be something I've done!

We have a hospital appointment next week to discuss the treatment and management (I'm trying to research a bit, but there's so little out there about treatments for kids of this age). I'm also concerned about the ongoing issue of school... So far she has had around 40% absence due to severe stomach pains and diarrhoea, plus school's exclusion policy. My question is, can/should the exclusion policy be enforced of her symptoms are proved NOT to be infectious? I don't want her to be missing half her education and she loves school when she is actually there! Not to mention the stress of all the "concerns" being raised about her attendance record...

Crohns and colitis UK have a lot of online resources including information for school.
CICRA is another useful organisation

It's a disability and needs to be treated as such. You may need to do some reading up on the Equality Act etc so you can be her advocate.

In terms of guilt - don't do that to yourself. Nobody even knows yet what causes autoimmune diseases like this and it seems to be a complex combination of what is essentially bad luck.

i think you should be proud that you’ve advocated for you little girl very well and got her a diagnosis and support.
I don’t think her getting diagnosed young means you’ve caused it or done something wrong.

Maybe you just lucked out and met a paediatrician who had just come across a case of Crohns the previous week so it was on their mind to test.
Had you seen someone else you may have been battling years for a diagnosis.

As for school she has a diagnosis and will be protected under disability laws so I wouldn’t worry about her missing school, if she needs to.

Hopefully once she has a good treatment plan in place flare ups will become less common

If you're on Facebook, there's a really supportive group called UK Parents of kids with IBD. Lots of support and experienced parents who can help especially with schooling etc

Hi, my DD was diagnosed with ulcerative colitis (similar to crohns) when in yr3. She spent most of yr2 unwell, lots of absences and GP visits.

DDs school have been very understanding and don't enforce the exclusion policy or mention her absence level. I think because they could see it wasn't normal (she had bleeding along with the diarrhea) they handled it differently. For you having a diagnosis means they can't exclude her using their normal policies as its a medical condition.

It's not as uncommon in that age group as you might think, we've met lots of young kids with the same conditions when in hospital.

Thank you for the replies, it's so lovely to have some support - and I'll definitely look at the websites you've mentioned.

I also think we were lucky to get a relatively prompt diagnosis. I'm hopeful that her treatment plan will improve the symptoms and flare ups. Also hoping to get some nutritional advice! For the past few months I've basically been letting her eat what she can stomach (literally) because she was losing weight and struggling with stomach pains etc. after eating... just about anything. But this means that she's currently eating:

White pitta breads or toast or bagels with peanut butter, cream cheese or houmous (but only one brand)
Pasta - plain, with pesto and spinach and with creamy tomato sauce with hidden vegetables
Mashed potatoes
Carrot sticks
Cucumber
Pears and bananas
Cous cous
Fromage frais (plain type only)
Little pots of fruit compote
Boiled eggs
Scrambled eggs
Cornflakes

And that's it! I probably let the self-directed diet get a little out of hand..

Hope your daughter is doing well now? It's tough at this age, I think, if only also because they are not going to understand it so easily as an older child might (I imagine).

Firstly there's absolutely nothing for you to feel guilty about. If we're going to blame something it's modern civilisation. There's nothing specific as individuals that we can place blame on.

Her diet actually sounds really good especially during a flare up. It's important to eat what you can stomach. Her weight will naturally increase when her condition is under good management and her appetite will increase again. Continue to let her eat what she fancies. It might be worth asking her consultant about nutritional drinks like ensure. They're easy to digest, high in calories and nutrients and they're quite nice (can be made into jelly or ice lollies too).

Have a meeting with school. It's important that this isn't treated under schools normal D&V policy. They should also put something in place for her so that she can go to the toilet without having to wait or ask.

Finally, just some reassurance that she's going to be ok. I was diagnosed at 16. I've done GCSES, a levels, a degree in biological sciences. I've had a good career, a lovely husband, DC, I've travelled etc.

My mum has been an absolute rock through it all. I know it sounds cheesy but being loved and supported makes a huge difference and your DD obviously already has that.

Another thing that I thinks important is to be mindful of side effects. During my early days post diagnosis I had some awful side effects from the medication. My parents obviously didn't realise that I didn't have to put up with these. It was viewed as just something I had to go through in order to treat the disease, they didn't know any better but there's so many treatment options and if you can see that something isn't suiting her then by all means speak up and try something else.

Also, look after the skin on her bum. She might get quite sore and you might not notice. Vaseline before and after wiping or good old nappy rash cream will do the trick. I was red raw by the time I was diagnosed.

Fellow IBD mum here
Diagnosed at 15
Sending support.

And thanks for the Facebook group tip

Our Dr offered to write a letter to school - it explained that due to kid's illness his attendance would be affected. And also that this could have an impact on his academic performance (secondary school age). Our school are fab but it was good just to have it in case someone raises it.

I would ask to have a chat in school and outline what support your daughter will need. Would a reduced timetable be feasible? I taught a child who was ill and he came in 10-2 each day. Appreciate it might not be doable!

Have you looked at the dietary advice on the crohns website? Some foods are triggers and it could help you know what foods to encourage her to add to her list. Raw carrots are potentially an issue.

@Kirova my DD is doing very well now, 9 months since her diagnosis, within 3 months of starting treatment she put on 3kg. She struggled initially with the medication (mesalazine) as it made her vomit and suppositories were a challenge. We found acidic foods (juices/some fruits), creamy things like yogurts and white carbs could exacerbate symptoms/cause pain. I hope your DD gets on well, there are lots of treatments available.

I have colitis (been having symptoms since a child, but not diagnosed until I was in my thirties!)
Let her eat what she wants until treatments/symptoms are under control.
I had a very limited diet as a child as I quickly learnt what foods caused pain. Mine was probably more limited than your dd as at one point all I would eat was fish fingers, peas and yogurt. My mum took me to the GP and he said let her eat what she wants, nutritionally it's fine.

@TotallyKerplunked Glad to hear your DD is doing better! It's interesting about the food triggers - I guess they vary from person to person, and I'm not in any way informed so far. But mine seems unable to tolerate any fruits except pears and bananas unless they're in some kind of purée form, anything like beans, peas or sweetcorn, or broccoli or raw veg like cherry tomatoes, but the worst seems to be sugary foods. In fact, her reaction to sugary things is so immediate and so bad that she's completely gone off biscuits and chocolate and everything!

@Flufty191, @Sunnysidegold and anyone else I've missed, thank you for the support and encouragement. I've been stressed about the school issue because school has been on my back about her attendance despite their insistence that she stays off for 48 hours whenever she's had an "upset stomach". Poor DD has also had a few accidents at school, which I can't imagine has been pleasant for anyone. Being allowed to go to the toilet without having to put her hand up and wait would definitely help her...

I think we were lucky on getting the diagnosis quickly. To begin with, I thought she must have some horrid guy bacterial thing or a food intolerance, but her stool sample came back with blood traces and faecal calprotectin (sp?) which let to more investigations.

I have lupus (SLE) so I am kind of clued up on autoimmune conditions more generally, if not IBD. I know there can be familial links also, although I guess it's hard to say of this is the case here. I've also been on azathioprine (Imuran) for several years, except when TTC and during pregnancy, with almost no side effects, so I know that scary-sounding medication can be easier to manage than you might think.

I don’t know a lot about it but I do think any exclusion due to diahorrhea would be an illegal exclusion against the disability act. Dd has coeliac disease and another autoimmune disorder which causes her some stomach pain/diahorrhea (I did wonder Crohn’s but doctor says her inflammatory markers are negative and it can’t be).

if she’s been glutened and has been sick /vomited I never kept her off school once she felt better. She’s older now and it’s the same at her waitressing job, she’s allowed back in once no longer vomiting rather than staying off 72 hours as they know it’s not infectious vomiting.

Thanks again for all the advice about school and everything. DD is doing okay but still has a lot of stomach cramps and diarrhoea - was told it will be a little while before the treatment she's been put onto starts to take effect. School are still being a bit funny about her being in with a "stomach upset", which I'm finding a bit frustrating to be honest. I'm hoping to ask if we can trial a later start since first thing in the morning seems to be particularly bad (not sure if that's usual). We shall see what comes of that!

Do not feel guilty. DD has a different medical issue and while I know it can be inherited It's pointless to blame one person/family for it. Look forward to help your DD to live her life.

Very different but when DD was 4/5 she had chronic constipation, often resulting in diarrhea type symptoms. As soon as we had a diagnosis the school never ever told us to adher to the typical 48hr off-school period. They just told us at the end of school day that DD wasn't well, handed us a bag of soiled clothing and said "see you tomorrow DD".

If your child has a recognised medical condition which is not transferrable, the exclusion nis not necessary. You need to be your child's advocat, it's not easy, we are currenlty going through SEN assessments, but on the long run it's helping.

Best of luck.

Yes, having worse symptoms in the morning is quite common and many people have flexible start times in work to accommodate it. That's a good idea for your DD.

That's helpful to know, thank you! I'm hoping they will agree to it, since it would take a lot of the stress out of the morning. DD1 will still need to be in for usual start time, but she has a friend further up the road and her parents have offered to pick her up on the way - we usually end up walking together anyway, so it won't be a whole lot of difference. At the moment, the mornings have been a total nightmare because DD2 keeps needing to go to the loo again and again and see doesn't want to eat breakfast because her stomach is upset. I also don't want her to get an association of going to school in the morning being a bad/stressful thing!

Hi Kirova, just wondering how your daughter is doing now? My five year old is under investigation for ibd at the moment and i am terrified..just looking for someone who understands the worry to have a chat.