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!

@PermanentlyDizzy

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.

Thank you so much for this! I'm sorry to hear your DC have struggled and wish them both well.

@ToooOldForThis

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!

Quite! So why the receptionist thought it a good idea to throw this in I have no idea!

@PermanentlyDizzy

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.

Which is why I feel so terribly guilty.She had all afternoon thinking mum didn't have her back because the flipping receptionist made out I said she should stay for longer when I said nothing of the sort!

@cansu

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?

To be honest if she was able to access a reduced timetable it is more than she is doing at the moment. There isn't a proper head at the moment only an executive principal but I think I'll start by seeing if I can speak to the Senco.

I found aloe vera tablets really helped my covid tummy. They are tiny to swallow, the ones I had were holland and barret brand. I would take a couple and they worked almost instantly. Might help.

@Ohsugarhoneyicetea

I found aloe vera tablets really helped my covid tummy. They are tiny to swallow, the ones I had were holland and barret brand. I would take a couple and they worked almost instantly. Might help.

Thank you so much for that.

I hope you can navigate through this, but just wanted to let you know that covid seems to be triggering type 1 diabetes in some (not that many, but enough to be noticed) post covid syndrome children. So keep an eye out for symptoms going forward

I have a chronic pain condition that started as “ probably post viral fatigue” according to GP 8 years ago so I think I know how your daughter feels.
It is very difficult to convey the degree of pain and how it affects every part of you. It’s been difficult for me at times so even more so for a child.
You can print pain charts online. Find a really simple one, you need just a few degrees to choose between, not 10.
Agree with your daughter which level of pain means she needs to come home. She only has to ask this number to be relayed to you.
If she is straight off to bed / sleep when she’s in pain and gets home then she needs to be at home.
I get pain to the extent it takes over my body and mind, saps the strength from me —- I’ve even felt at times I don’t have the energy left to breathe. It’s a horrible thing for a child and I hope your little girl recovers in time.

Not everyone needs to know why, the DC are allowed some dignity.

Your dd would have had more dignity and a better time if the receptionist had some knowledge of the history. From the conversation it could have come across like you wanted her to stay for half an hour. A note on your DDs file would have made it really clear.

Staff don't need to know the ins and outs of everything I agree. I may be jaded by the number of parents who complain about things which they later find out the teachers knew nothing about. Sharing information is a fine balance but in this case would have helped your dd.

Thanks for your reply to my message. It's certainly worth getting on the Long Covid clinic waiting list as it took over year for my DS to get his first appointment.

Things that work for DS -
Vagus nerve breathing exercises
Insight timer app on his phone so he can fall asleep listening to relaxation music
Low gluten diet

Specific things for my DS -
Putting on weight to help combat the fatigue
Making sure he eats snacks between meals so his energy levels don't drop
More fluids and salt as he has developed PoTS (low blood pressure/high heart rate) so he's in danger of fainting

@SeaToSki

I hope you can navigate through this, but just wanted to let you know that covid seems to be triggering type 1 diabetes in some (not that many, but enough to be noticed) post covid syndrome children. So keep an eye out for symptoms going forward

Thank you, I will do.

I think it was unfortunate that the hd usd of language madd your DD feel insecurd. I think I would givd xchool a miss for z shile. R

This no edit is driving me mad. Sorry.

@Xpologog

I have a chronic pain condition that started as “ probably post viral fatigue” according to GP 8 years ago so I think I know how your daughter feels. It is very difficult to convey the degree of pain and how it affects every part of you. It’s been difficult for me at times so even more so for a child. You can print pain charts online. Find a really simple one, you need just a few degrees to choose between, not 10. Agree with your daughter which level of pain means she needs to come home. She only has to ask this number to be relayed to you. If she is straight off to bed / sleep when she’s in pain and gets home then she needs to be at home. I get pain to the extent it takes over my body and mind, saps the strength from me —- I’ve even felt at times I don’t have the energy left to breathe. It’s a horrible thing for a child and I hope your little girl recovers in time.

Thank you for your kind wishes. A pain scale is a really good idea.

@Hercisback

Not everyone needs to know why, the DC are allowed some dignity.

Your dd would have had more dignity and a better time if the receptionist had some knowledge of the history. From the conversation it could have come across like you wanted her to stay for half an hour. A note on your DDs file would have made it really clear.

Staff don't need to know the ins and outs of everything I agree. I may be jaded by the number of parents who complain about things which they later find out the teachers knew nothing about. Sharing information is a fine balance but in this case would have helped your dd.

I was very clear that if she wanted to come home I would come and collect her immediately. In the moment I assumed the half hour thing came from the teacher but it turns out it was from the receptionist who, imo, shouldn't have got involved. I agree in this instant a note could have been put on her file (school know she has post-covid syndrome so they could have put a note on the file), but my point was receptionists don't know all sorts of things and they should keep that in my mind when unilaterally deciding to go against the wishes of the teacher and parent.

Keep that in mind not my mind!

The school SENCO just rung and we have an appointment for tomorrow.

If her stomach pains come and go, I suppose the TA was maybe thinking that maybe if she waited a little bit longer it might ease off and she could have the whole day at school - but either way, that wasn't what you'd agreed and I can see why you and DD are upset about this. As others have said, anxiety can be really tough on the stomach so extra worry is the last thing she needs on top of her stomach inflammation.

Hope all goes well with the SENCO and I hope your poor DD feels better soon.

@incognitoforthisone

If her stomach pains come and go, I suppose the TA was maybe thinking that maybe if she waited a little bit longer it might ease off and she could have the whole day at school - but either way, that wasn't what you'd agreed and I can see why you and DD are upset about this. As others have said, anxiety can be really tough on the stomach so extra worry is the last thing she needs on top of her stomach inflammation.

Hope all goes well with the SENCO and I hope your poor DD feels better soon.

Thank you so much.

I met with the Senco today. We have agreed a plan for if she is feeling unwell at school. First she will try having some water and going to the toilet. If that doesn't help she can sit at a 'quiet' table outside the classroom. If still struggling she can go and lay down on a sofa in one of the pastoral care rooms. (The Senco mentioned giving her some pain relief at this point if she is in pain. She won't take Calpol but I am going to ask at the pharmacy if there is a tablet she could take). If after half an hour of lying down she still feels unwell then they will call me to pick her up.

We also discussed a reduced timetable. We have agreed to try 10-2. She said she just needed to get it agreed by the head of year. She was concerned that DD would 'get used to being at home' and said there would need to be a plan for her to go back to full time school. I did feel at this point there was a lack of understanding that Long Covid can go on for a long time and the doctor's can't tell you how long it will last. So how can we plan at this point as to when she can go back to school full-time?

Poor soul sounds really difficult. Have they suggested treatment for her tummy? You can get probiotics for kids in capsule form - I had to empty them out and pop in yoghurt for my son when he was tiny - recommended by dietician and they helped loads. Also avoid ibuprofen for pain. There has been some amazing advice on here I hope your daughter is feeling better soon.

Head teacher here.
There has to be a plan to move your DD back into full time education as she is entitled to this, and it is the legal standpoint. A reduced timetable can’t be open-ended and should last no more than a few weeks. Good practice would be to tweak it slightly every few days so it gradually builds up her stamina to full-time (for example, 3 days at 10-2 and then 3 days at 10-2:20)
At every stage, you can take into account how she is doing and what medical advice is, but it can’t be open-ended. Sounds like the school is being very supportive.

DD can take paracetamol tablets - half a tablet (which is 250mg, so slightly less mg than she could have with liquid) every 4-6 hours.

Part time timetables should be short term aimed at reintegration, so the SENCO is right to be looking at ahead to working towards getting DD back attending full time. If DD cannot attend school full time the LA should be providing alternative provision to ensure DD is receiving a full time education. Only if DD cannot receive a full time education, which isn’t the same as full time school, at all for medical reasons is part time education appropriate.

I think the plan the senco has is a good one. Reduced timetables can lead to long term problems getting a child back into school long after the reason for the initial reduction.

@Iamkmackered1979

Poor soul sounds really difficult. Have they suggested treatment for her tummy? You can get probiotics for kids in capsule form - I had to empty them out and pop in yoghurt for my son when he was tiny - recommended by dietician and they helped loads. Also avoid ibuprofen for pain. There has been some amazing advice on here I hope your daughter is feeling better soon.

Yes, the advice is so good and thank you for yours too. I've been giving her the 'gut health' yogurts. Not sure if a probiotic capsule would be better? The GP pretty much gave no advice atall.