To be furious at headteacher?

[paradisecityx]

Hey.
My daughter is in year 4, she is 7 years old and has IBD (ulcerative colitis). This is an autoimmune condition that will be with her for life, unfortunately.
She was diagnosed at 3 years of age and it has recently flared badly and her meds she was previously on aren't controlling it anymore.
She is now taking a medication that's a complete immunosuppressant.
This obviously concerns me with her attending school but we're trying to keep life normal as can be for her.

I spoke to her head this morning and asked if I could send in some hand gel & some hospital grade wipes for her desk and chair, that my daughter can use to wipe down her working area just to try** and minimise her chances of catching illnesses back to back.
Her head teachers response was "well kids touch everything so there's not any point, but if it will psychologically make you both feel better then yes as a lot of it is in the mind'

AIBU to be absolutely pissed at this? I'm trying to decide how to deal with this as in my opinion, it's completely unacceptable and cunty. My daughter is on a medication that's used for chemotherapy to try and save her bowels and that's pretty much explain how little her headteacher understands (or cares for) her condition. I was tempted to email (they have 2 headteachers over the federation) the other and see what they think of this, but don't know how to go about it.

I said I would go in and wipe it down before she started.
I am just a terrified mum trying to make my daughter's life a little less miserable, and reduce risks as much as I can.

You going into the classroom causes it's own issues. There has to be someone there accompanying you. The teacher needs to be careful what is out for GDPR. If there are morning briefings, they may only be in the classroom seconds before drop off time.

I think the head had made a valid point, without much tact.

Your desire to protect DD is understandable, but how you’re proposing to do that is irrational.

When my DD was at primary they barely sat at a desk. It was everyone on the carpet, moving anround opening books, getting Lego counter things out for maths, working in groups etc. There is literally zero chance you could ‘swipe down’ what she is touching let alone all the other airborne risks.

Sorry it must be really stressful. You need to be comfortable accepting the risks vs the reward and then let it be. You will make yourself ill otherwise.

You need to formalise your dd's needs into some kind of care plan that includes as one of its requirements that everyone who teaches your dd is educated about her illness (if you are happy for staff to know). It's true that it's going to be difficult to protect her but that doesn't mean you shouldn't try. There could be all sorts of accommodations that could help. The headteacher has shot himself in the foot because what you requested wasn't going to cost him anything or inconvenience him at all so he should have enthusiastically supported you instead of being a dick. At the very least you should email him some medical info and medical advice for his files.

It does cost something, his staff time.

This is the best answer here.

OP I understand that these medicines sound scary, but they only rarely cause a significant suppression of the immune system ( I prescribe some of the same medicines for other autoimmune conditions, and becoming severely immunosuppressed if very rare. While some of the medicines are the same as used for chemotherapry, for autoimmune diseases they are often given in much smaller doses than the cancer treatment dose). Would it be helpful to see This from a Crohn's/colitis charity ?

I understand that you are trying to control what you can, but the practicalities of actually effectively sanitising a chair and desk in a classroom is not achievable. Handwashing and avoiding contact with anyone known to have an infection are the best steps your child can take.

It's not clear to me whether the headteacher was confusing IBD with IBS (in which case that does need educating), or whether they were trying to say that you can bring in the wipes but really it will only be giving you psychological support rather than actually being very useful.

I agree with a few other posters that, while the tone was rude and dismissive, I interpreted the head saying 'it's in the mind' was about the OP's concerns, rather than thinking that the child's illness wasn't a genuine physical illness.

My understanding of IBD, I have UC, is that it is caused by the immune system over responding. The immunosuppressive drugs turn down the reaction to a more normal level.

My consultant told me that although I was told to shield during Covid, my risk was moderate rather than severe.

It might be worth chatting to your IBD nurse about the risks.

Your poor DD though, it's hard enough as 50 something let alone a little one.

I am sorry that your daughter is so unwell. I would arrange a chat after school with her class teacher, take in some information and make them aware of the issues and the need to inform you of any illnesses going round the class that might impact your daughter. Then back it all up afterwards by repeating the information in an email ( send to head teachers too).This will be handy for her to refer back to as well. I can't imagine a teacher that wouldn't want to do their best to help you. Are there support assistants who could be involved in keeping an eye on her?

I would be mad as hell as well my son has UC and tried the immune suppressants but ended up with a ileostomy and that’s changed his life. He is also type 1
we had one school that was awful 😞 luckily we moved and his next school was amazing.
i feel for you and your daughter do you get the HT is annoyed with your daughter for messing up their attendance stats?

My DD also had IBD and is also on biologics (adalimubab) and further immune suppressant (azathioprine), she was diagnosed 4 years ago.

I don't think the headteacher was very empathetic and was dismissive in their tone. However, gently, I do think you are being a bit unreasonable.

The reason our kids have IBD is because their immune system is overactive. The immune suppression just seems to knock it down to average levels. So I don't know about you but actually my DD doesn't seem to catch things more or be ill more often than her peers. I think the immune suppression is more of a worry when/if they do get potentially serious conditions, rather than that they have to be protected from exposure to any germs. It's a slightly different scenario than, say, a person with blood cancer who has had their immune system completely wiped out before treatment.

Our protocol is that if she runs high temperatures or seems very unwell the GP will always take that seriously and she's a lower bar for antibiotics. But actually she really doesn't get unwell more often than peers.

PP have linked to the correct document Managing Medical Conditions in School.

DD needs an Individual Health Care Plan, which it sounds like she has but it perhaps needs updating. (This is not an EHCP, which would only be relevant if DD also has additional learning needs or requires significant adaptations to be able to access school that would cost over the nominal first £6000 that schools have to fund.)

Providing wipes, if DD can manage them, is not unreasonable. Not so much for her desk and chair, which you coukd request are used by her alone, but for the shared resources. Providing pencils etc for her own use is a good start, but there will be other items that are shared in the classroom, such as practical maths or science resources, that would be easier to wipe down than to ask you to provide ready for a specific lesson.

What else would be reasonable to ask for depends on the school's context and staffing. To be close to a window, to only attend lessons in her classroom, ie not to attend assemblies or to change rooms to be in a certain maths set, to keep her coat on her chair rather than in the cloakroom, to use the disabled toilet, for you to be informed if certain illnesses are identified in her class.

It might also be worth discussing the option of a part-time timetable if DD's doctors consider that she is at greater risk of picking up something if she is tired and becomes rundown. You will probably fall the wrong side of the attendance data computer software sooner or later, and whoever does the admin for that should know to override the automatic letters. If you are contacted, take it as what it is, that the school fulfilling its duty to check that everything is ok, and meet with them to tell them whether or not everything is currently going well.

The headteacher is basically correct that it is impossible to stop all germs spreading in school. You said you spoke to them that morning, but was this a pre-arranged meeting where they had had DD's relevant information beforehand, or did you just catch them on the playground at drop-off, potentially just one of many parents they deal with every morning with, what in most cases is a simple or trivial question?

The headteacher's wording was clumsy but they probably didn’t understand the seriousness of DD's condition. Try again with the Senco or whoever updates the IHCP with you. You could ask DD's consultant to copy school into their reports. Then the school always has first-hand exactly what the current situation is, and the medical evidence for updating the IHCP, without you needing to remember to send it in after every hospital visit.

"What else would be reasonable to ask for depends on the school's context and staffing. To be close to a window, to only attend lessons in her classroom, ie not to attend assemblies or to change rooms to be in a certain maths set, to keep her coat on her chair rather than in the cloakroom, to use the disabled toilet, for you to be informed if certain illnesses are identified in her class.

It might also be worth discussing the option of a part-time timetable if DD's doctors consider that she is at greater risk of picking up something if she is tired and becomes rundown."

This all depends on whether OP's DD is actually at greater risk of catching illnesses, or whether she is just frightened that she might be at such risk. Most of us with children with IBD find that, outside of flares, our children on immune suppression don't actually pick up more illnesses or become more ill with each bug than their peers.

OP, I would suggest 2 things: first, ask your child's doctor if you need to take these steps in relation to protecting your daughter given her drug regime.
Second, join the UK parents of children with IBD Facebook page. There are hundreds of us there with relevant experience and wisdom to support.

I understood that op's initial suggestion was to send in wipes/gel for her and daughter to use - that would not take up staff time. However having a proper care plan in place will take up a lot of staff time hence why I said the ht had shot himself in the foot. He has basically created a lot more work for himself and his staff by making a thoughtless comment that is causing op to take things further and hold the school to their legal responsibilities. If he had supported op with her initial sensible and minimal suggestion they could have worked together in a co-operative and cost effective approach.

I understand you are worried but will this realistically work? When children come into the classroom their hands go everywhere! You might wipe down the table, but then a classmate comes along and runs their hand along it.
Therefore do you want her sat away from other children at a separate desk that others know not to touch? I have already mentioned the sharing equipment, handing out books but there are so many eventualities I can see why the headteacher seemed to be dismissive (though rudely done). Does you child have a packed lunch? Or do they eat school dinners on trays that come from the kitchen using school cutlery? Our children eat in a dining hall, so again is that an issue where you would want to use your wipes and have her clean before sitting?
What about playing equipment? Do lunchtime staff need to be aware not to let her play with balls or skipping ropes, as these are shared and often dumped on the playground til another child picks them up?

I really think it's the class teacher you need to speak to and discuss with them and maybe the senco what your concerns are and how the school can help meet these. Also you need to be realistic in what can be managed and what can't, and what might also might make life difficult for your child (being unable to join in fully)

Anything needs to be discussed and written into her health care plan

Having a proper care plan in place would at least be backed by medical professionals and evidence. Not something like wiping down which will have a negligible effect of risk.

@paradisecityx I think I probably overreacted last night when there was talk of home schooling so my apologies if it came across harshly. My reaction was because I have Crohn's, have had it since childhood and am on the immunosupressants you're describing, have been for many years. And I was trying to imagine how awful my life would have been if I had been taken out of school. I understand as a mum you are thinking of whatever you can do to protect your child but please do listen to those of us who either have the disease or have children with it when we say you just can't take out every element of risk in her life. The link to the crohns and colitis foundation are well worth reading and hopefully you will see it's not the same thing as having no immune system at all. Yes you take antibiotics earlier than others would on a more precautionary basis but largely it's Crohn's that impacts my life more than the immunosupressants if I'm not on them. I can totally understand you desperately wanting to protect your child and again I apologise if my reaction was too strong. But please believe that your little one can do really well in school. You can't put her in a preventative bubble, that's no life. I wish you all the best for the future.

I can imagine and I feel so sorry for her. What medication is she on? I was on mercaptopurine isn't commonly used for Crohn's but I didn't have any side effects. I don't think I even got more colds than usual.

I think the biggest issue here seems to be school not taking it seriously. It might be worth asking her I've nurse to come and speak to school and do some training around Crohn's and all the symptoms beyond the obvious.

You shouldn't need to do this in the long term. The medication should bring a period of remission where she is perfectly well. My DD's attendance was 85 percent this time last year as she was in a flare. However she is in remission again now and has only missed 2 days since September (because of a nasty cold we both got, which she bounced back from despite being immune suppressed, and I suffered from for 3 weeks!).

Can you get a letter? I have this one which I got for work etc

As you can probably tell from my username I have an ileostomy, mine was elective as I didn't respond to meds but it has improved my quality of life no end.

I did find when I was on Infliximab I didn't seem to pick up colds any more than usual, if it reassures you at all OP.

I'm immune suppressed but kind of get the point the head was (clumsily) making.

I think sanitising the desk and chair is a way of trying to feel you have control over a situation where you really dont

A lot of germs (eg. COVID) are airborne