Could the school nurse help? Who to speak to?

[UndertheCedartree]

I am so upset. My 9yo DD has post-Covid syndrome. The doctor said she still has inflammation in her stomach. She is often suffering with stomach ache and nausea, as well as tiredness and muscle aches. She has had quite a lot of time off school due to this, which upsets her as she likes school.

So, this morning she was in pain but wanted to give school a try. By the time we arrived she was crying. One of the pastoral care teachers came up and I explained. She asked DD if she would like her to take her in and see how she went and if necessary they would phone me. I agreed that with DD. About 11.30 the office phoned me to say her stomach was hurting her. The lady asked whether she should suggest she tried to stay another 30 min. I said please can you ask my DD if she wants to try another 30 min or if she wants me to come and get her now. She phoned the class and then told the member of office staff told me she would try for another 30 min. After 30 min I rang back and was told she had been crying but had now perked up a bit.

When my DD came home she was really upset and clinging to me. Apparently her class teacher had her ready to come home but the message given to her that she passed onto DD was that 'Mum said you need to try to stay at school a bit longer'. Obviously, that went against what we had agreed and DD was completely bewildered and started crying. She was still in a lot of pain but didn't say anything else as she didn't think there was any point. So she stopped crying and the teacher thought she had 'perked up'.

Not only was thinking s bad enough but due to circumstances my DD is very sensitive to being 'abandoned'. This was why she appeared to 'perk up' as she just pushed it all down to cope emotionally.

What is worse is a comment was made by a TA insinuating that she was making it up, perhaps as a response to them thinking I refused to pick her up. But I find it so disheartening. DD loves school - she's not making this up!

Now, her teacher and pastoral care know all about the post-covid syndrome and all the background. Obviously, the receptionist does not and I think she got involved inappropriately. She should have followed mine and the teachers instructions. Also TA probably doesn't know so also shouldn't have got involved.

I'm now feeling really uncomfortable about letting her back to school and she's feeling if she is in a lot of pain noone will believe her/I won't pick her up. So now she is less likely to want to try if she is in pain in the morning.

When I emailed the school about the situation I did ask if the school nurse could help. I'd like a proper plan of how to deal with this. For example is there somewhere she can lie down quietly if her stomach is hurting or she is feeling sick. I didn't get any response to this.

So what would be best? Try and contact the school nurse myself? Speak to someone at school? Sorry this is so long and thank you for reading!

Have you considered that this may be partly anxiety-driven? She's seen you suffer with long covid already and she feels safer at home with you. This may not be conscious thinking, I know you say she likes school, but the mind can be very powerful over our bodies and can create symptoms.
I am not at all suggesting this is in her head or making it up before anyone gets the wrong impression.
My daughter had all sorts of tests for stomach pains a few years ago and no definitive cause was found, but we got it under control in the end by thinking emotionally rather than physically and dealing with her anxiety.

@Imitatingdory

If DD is missing a lot of school the LA have a statutory duty to provide alternative provision. This should begin once it becomes clear DD will miss 15 days, for ongoing conditions the 15 days don’t have to be consecutive, they can be cumulative.

I'm not sure exactly how many she has missed but it could be almost there or even reached 15. Thank you for the advice.

She only went and got thread worms too so had to have a day off for that!

@WhatHaveIFound

I think the school office were wrong to suggest your DD tried another 30 minutes in school and that's probably what led to the confusion with the nurse. I hope your DD is feeling reassured now that she's home.

In your position I would have probably gone straight away to pick her up.

My DS (17yo) also has Long Covid and the clinic were very keen for him to reduce his hours in school to help with the fatigue. He's currently doing about 60% of the hours he should be there and all his subject teachers, form tutor and HOY (on top of the school nurse) are aware of his health issues.

Has your DD been referred to a Long Covid clinic? If not it might be worth getting her a referral or alternatively to a dietitian. We've had lots of useful advice from ours.

Thank you for the advice. I wish your son all the best in getting back to normal. She's not been referred to either. I will speak to the doctor about this.

@curlyLJ

Have you considered that this may be partly anxiety-driven? She's seen you suffer with long covid already and she feels safer at home with you. This may not be conscious thinking, I know you say she likes school, but the mind can be very powerful over our bodies and can create symptoms. I am not at all suggesting this is in her head or making it up before anyone gets the wrong impression. My daughter had all sorts of tests for stomach pains a few years ago and no definitive cause was found, but we got it under control in the end by thinking emotionally rather than physically and dealing with her anxiety.

This is sensible advice.

From reading your posts I wonder if an official reduced timetable to ease her back to school would be more sensible- mornings only, for instance. Then you could plan with a bit more certainty and avoid the ‘just 30 mins’ thing because she’d feel sure of coming home by 12.30, or whatever.

@curlyLJ

Have you considered that this may be partly anxiety-driven? She's seen you suffer with long covid already and she feels safer at home with you. This may not be conscious thinking, I know you say she likes school, but the mind can be very powerful over our bodies and can create symptoms. I am not at all suggesting this is in her head or making it up before anyone gets the wrong impression. My daughter had all sorts of tests for stomach pains a few years ago and no definitive cause was found, but we got it under control in the end by thinking emotionally rather than physically and dealing with her anxiety.

I wouldn't rule it out and I definitely think looking at things holistically is important but she has been examined by a doctor and her stomach is inflamed which would cause pain and nausea. The fatigue is obvious as she sleeps so much. Her teacher has also noticed how exhausted she is and has sent her home when she could tell she was in a lot of pain, even though DD didn't complain. She does have things in place at school for anxiety which seem to work well. But in particular she has a really great teacher this year and her confidence had increased so much. Until Covid hit

You don’t need to wait until DD has already missed 15 days, the provision should begin when it becomes clear DD will miss 15 days.

@NoSquirrels - yes, I think that may be a good plan. She comes home exhausted. Sometimes she has had days off because of pure exhaustion, besides the other symptoms. She has been skipping P.E for the last couple of weeks but I don't think it's enough.

@Imitatingdory

You don’t need to wait until DD has already missed 15 days, the provision should begin when it becomes clear DD will miss 15 days.

Ok, great, thank you.

Aw bless her. I hope she can recover soon. I also agree with the suggestion that she needs a reduced timetable for now. Maybe they can maximise her time doing maths English and science and then forget any of the extras? Or even half days with the day starting an hour late and finishing an hour early? She needs her rest and sleep right now to recover. I would arrange a meeting with school and explain she’s struggling to stay awake at home due to exhaustion, and can’t cope on this timetable.

Definitely seconding the advice of speaking to the SENCO about getting a healthcare plan and making sure it’s circulated to staff especially if she finds it difficult to speak up about being in pain. This would also help if her stomach started hurting at lunchtime for example where she might not want to tell the MDS supervisors they’d know to keep an eye on her.

Id speak to head and senco and ask for a risk assessment to be put in place for staff to follow.

@ikeepseeingit

Aw bless her. I hope she can recover soon. I also agree with the suggestion that she needs a reduced timetable for now. Maybe they can maximise her time doing maths English and science and then forget any of the extras? Or even half days with the day starting an hour late and finishing an hour early? She needs her rest and sleep right now to recover. I would arrange a meeting with school and explain she’s struggling to stay awake at home due to exhaustion, and can’t cope on this timetable.

Thank you for the advice.

@Birdkin

Definitely seconding the advice of speaking to the SENCO about getting a healthcare plan and making sure it’s circulated to staff especially if she finds it difficult to speak up about being in pain. This would also help if her stomach started hurting at lunchtime for example where she might not want to tell the MDS supervisors they’d know to keep an eye on her.

Yes, that makes sense, thank you.

@autienotnaughty

Id speak to head and senco and ask for a risk assessment to be put in place for staff to follow.

Ok, thank you

Is stomach inflammation a common symptom of long Covid? Just because illnesses/stress can trigger other things, such as coeliac disease. It might be worth suggesting that GP does start to investigate if something else could be causing ongoing symptoms.

I didn't ask her to try another 30 min, I asked if she wanted to try another 30 min or if she wanted me to pick her up immediately. I'm sure noone one wanted to upset her intentionally, but the members of staff involved should realise they don't know all the details about a child so should follow the instructions of those that do.

To be honest, the staff member probably thought that's what you were trying to do by saying does she want to try another 30 mins.

You need a healthcare plan so that all staff are aware of the issues. It's not fair on the staff at the moment because they don't know why your dd needs treating differently to other students.

Interesting reading about the school nurses in other areas - where I am it would certainly be worth you calling up to discuss with them. They may just give you first line advice or they may accept the referral, I can’t tell, but it sounds like it is structured differently as we have a school nurse team that covers the whole area, not individual schools.

This is the statutory government guidance that states they must put educational support in place as soon as there is an indication that the child will miss 15 days in any academic year - the days do not have to be consecutive.. Bear in mind that the burden in on the Local Authority to ensure they receive adequate education. Page 4 is the relevant page here.

This is the one regarding supporting children with medical conditions in school.

In my experiences (two dc with long-term health conditions) schools will often refuse to put an Individual Healthcare Plan (IHP) for conditions which don’t require medical intervention at school (things like ME, CFS, PoTS, EDS, which have symptoms in common with long-covid). I have one dc out of school long-term for health reasons and another that has been through something extremely similar to your dd, but is back on track and loving school again.)

Regarding the stomach pain. As a family we suffer with a combination of the above mentioned conditions, which are similar to long-covid in presentation and symptoms. My dd was in the same position as yours in Year 3, lots of time off with extreme stomach/abdo pain. She loved school and was really distressed at missing so much. I won’t bore you with the whole story re referrals and hospital tests etc, but eventually what helped her was pre and probiotics (we use Bimuno and Optibac High Strength) taken with breakfast and peppermint oil tablets, eg Colpermin but there are cheaper generics, taken half an hour before each main meal. Peppermint is well researched as a treatment for gastro/abdo pain, is often used in paediatric gastroenterology and has been proven very effective at reducing the pain hypersensitivity that tends to come with inflamed digestive tracts. My dd was started on the above by a paediatric gastroenterologist and it was a game-changer for her, within a couple of weeks she was back to school full time and as long as we stuck with the plan she was fine. I was highly sceptical that any of the above would help, but had to eat my words and do my research!

We were also told to give her half an otc Cetirizine morning and evening (exactly the same stuff kids take for hay-fever daily for months over the summer, we use Piriteze) for Mast Cell Activation, as the gastroenterologist felt the pain was relating to mast cell proliferation in the gut. The combination of the above meant that she was back in school full time within the week. She is now 13 and her gut has healed to the extent that she has recently stopped taking the above with no problems at all.

There have been quite a few studies done regarding Mast Cell Activation in Long Covid, so it may be worth having a read and trialling the above, as it’s all over the counter and easy to stop if it doesn’t help. If you were going to try just one thing, I would recommend trialling the Colpermin first, as there is so much scientific evidence backing the use of peppermint oil for gastro pain and it’s a common treatment.

Teacher here - I would maybe suggest not letting dd choose? That's another stress in itself, pupils really find it hard to gauge if they are well enough to stay or not. You know your daughter and her situation, if you trust her not to "use" her sore stomach as an excuse, then when she says she needs to come home, that should be it, no going back and forth. Remember too that while these phone calls are going back and forward to the teacher, there's a lesson going off track and possible behaviour issues arising!

Forgot to say, we have had similar problems with reception staff trying to jolly dc along to stay at school a bit longer when they clearly needed to be at home, even when their health needs had been circulated to all staff and raised at staff meetings.

It does sound like it was a case of miscommunication on this occasion, so I would put it in writing exactly what you want to happen if dd is distressed an in pain at school. Make it clear that they should always call you and you will make the decision about when/if she comes home. That way you take the responsibility off them, as as a pp said, they don’t have the knowledge or experience with her current issues to be able to make an informed decision. It also sends a message to dd that you have her back and will be there when she needs you. It’s so hard for our dc with these bizarre symptoms that not every accepts or understands, what they need more than anything is to know that Mum is always there for them and they will be heard.

Autienotnaughty
Risk assessments are not usual for dealing with a child with stomach aches and fatigue.
If the OP wants her dd to have a reduced timetable she needs to discuss that with the head. However I would be wary of going down that road. She will miss a lot of school and could then really struggle to return after he is well again. I think that you should send her in and then agree with school staff in advance when she will be sent home and in what circumstances. Would a hot water bottle help when he stomach aches? Could you send in one of those heated wheat bags? If this might help, step 1 could be try the wheat bag for half an hour before going to call home and send home?

@tinkerbellvspredator

Is stomach inflammation a common symptom of long Covid? Just because illnesses/stress can trigger other things, such as coeliac disease. It might be worth suggesting that GP does start to investigate if something else could be causing ongoing symptoms.

There are receptors Covid can attach to in the stomach too. We all had gastro symptoms with Omicron. The doctor has done some other investigations but nothing else has shown up currently. As the symptoms started with Covid it is likely to be post-covid syndrome.

@Hercisback

I didn't ask her to try another 30 min, I asked if she wanted to try another 30 min or if she wanted me to pick her up immediately. I'm sure noone one wanted to upset her intentionally, but the members of staff involved should realise they don't know all the details about a child so should follow the instructions of those that do.

To be honest, the staff member probably thought that's what you were trying to do by saying does she want to try another 30 mins.

You need a healthcare plan so that all staff are aware of the issues. It's not fair on the staff at the moment because they don't know why your dd needs treating differently to other students.

It was the receptionist who suggested it not me! It threw me!

Treating differently to other students? Well, I've never had her treated like this before! When the teacher sends her home the receptionist normally passes this on and I pick her up!

And there's loads of reasons DC are dealt with differently and not everyone knows. My DD has been particularly looked after by pastoral support since she started. The only people that no why are the pastoral care team, the play therapist and her teacher. Not everyone needs to know why, the DC are allowed some dignity.

@DistrictCommissioner

Interesting reading about the school nurses in other areas - where I am it would certainly be worth you calling up to discuss with them. They may just give you first line advice or they may accept the referral, I can’t tell, but it sounds like it is structured differently as we have a school nurse team that covers the whole area, not individual schools.

Thank you for that.