How to get a letter of support of undiagnosed child health problem

[AGenie]

Hi,

My son had obstructive apnoea for years as a baby and toddler, and also food intolerance. He is now much better and is getting stronger all the time, but he still gets viruses a lot.

The school Headmistress has figured out that he gets ill when he is tired and started giving him pre-emptive afternoons off last term so that he could get his energy back before getting ill. It worked a treat and he was well for the whole term and only missed about 6 afternoons.

However this year she cannot continue the scheme unless I get a letter from a Doctor confirming that he has a specific medical condition that is causing the tiredness. We have been to see a Pediatician and she said that while the afternoons off were exactly the right answer, there was not a specific diagnosis that she could give and so my only chance was to advocate really hard for him.

The Headmistress says I should keep trying to get a letter from some from him as the afternoons off were clearly the right answer, but I don't know what to do or where to go to get such a letter.

I wondered if any one might have an idea? I don't know whether a private GP or someone like that would help. It's pretty clear that ds (6) is exhausted and run down from the obstructive apnoea (I know I am) but how do I get that in a letter?

As an aside, my son tells me that he is tired because the school teaches him too much, too fast, and we asked the school if he could be put down a group so he could have easier work. The school says that as far as they can see he can do the work and they won't put him down a group as it will show on their statistics and they will be punished.

Ds also has intermittent glue ear and we are not having surgery for him as it comes and goes.

I despair of the system that has brought this all about but I wondered if anyone might know what to do?

Thanks!

But he has obstructive apnoea which is a medical condition. Why won't the paediatrician put that in the letter- are they disputing this?

my son used to be able to have quiet time lying down in the book area, and sometimes I picked him up after afternoon registration (doesnt affect absence stats). are either of those options?

How old is he? Tbh I'm not sure going home is a great idea , he needs to get used to school.

Actually, posted too soon. If he had a medical condition that called for shorter attendance, or made him too ill to attend full time, wouldn't the paed have been able to confirm that? Is it that they don't understand it, or that it doesn't usually cause this amount of illness?

If pre-emptive afternoons off have helped, couldn't the paed write a letter saying roughly what the problem is, and that he/she supports the afternoons off to help prevent further problems?
Why would the Ht need a specific diagnosis?

He had very severe obstructive apnoea from age 5 months to about 3 years) but it went away with diet change. He slept through at age 4 and he is now 6. He had mild obstructive apnoea again last summer but he is okay at the moment.

He has glue ear in one ear (both ears last year, but one resolved spontaneously) and the Ped thinks he may be anaemic (I agree) but we are having play therapy to try to get a blood test done and no blood test has been managed her.

He may be tired still from the years of obstructive apnoea, or maybe the anaemia, but as the obstructive apnoea is gone, it is not a current condition, and we don't have proof of the anaemia.

We were having him home after afternoon registration last term but the headmistress says she can't do that any more without a doctor's note.

The pediatrician said she understands that the school system is very pressured now but that she's not allowed to say that in a letter. The senco agrees but she says they're not allowed to slack off even if it is hurting ds. They said they won't even put in in a lower level of group as it will hurt their statistics and as far as they are concerned he can do the work.

I'm both extremely knackered from years of looking after an ill and non-sleeping child and also ready to scream aloud from sheer frustration at "The System" which had done so little to help us and seems to have no compassion for ds.

have they tried fingerprick blood test for the anaemia? I know its not the same but I think its all my kids had for that test, I guess it gives a reasonable result? whats the problem with the bloods? wont they do it if he is resisting/crying?

I see. There is no actual medical diagnosis at the moment then. To be honest I can't see any medical professional making recommendations without evidence of a diagnosis as there's no 'clinical' justification. I understand how frustrating it must be but I think you probably have to work on getting that blood test to confirm any suspicion of anaemia. Is there anything the school can do in the meantime to support ie letting him rest in a quiet corner for a short while when he gets tired etc?

Is it possible to have a fingerprick test for anaemia then? I don't want to have to hold him down for a blood test as he's had oodles of forced medical procedures and the fear level that he's carrying around is just beyond a joke now. Especially as the interventions never seem to help at all.

I suppose he technically does still have obstructive apnoea but as it's controlled by his limited diet, he's not actually losing sleep.

How do you know he isn't losing sleep? He may still be losing substantial amounts of sleep that would be picked up on sleep testing but not as dramatically as he used to so you don't see the waking that you did before but it would be picked up by sleep plesthysmography but he probably can't do that being so young.

So I'd go for sleep apnoea being a current condition.

I think he's not losing sleep because the sleep loss before was caused by his nose having grown shut with enlarged adenoids. When his nose closes he has to partially waken in order to mouth breathe and it is very obvious. When things are going well his nose is open and he can breathe silently through it at all times. The situation very bad before and it is still intermittent so we have never moved him into a separate room and he sleeps between my husband and myself where we would quickly be awakened if his breathing deteriorated. When his breathing does deteriorate as it did last summer, we have to wake up several times a night to flip him onto his side. Once he's on his side he seems to breathe much more clearly.

I think that if I claimed that he had continuing obstructive apnoea they would be obliged to treat that medical condition quite agressivsly, as the loss of oxygen in the night would cause problems with his brain development. It's a relatively serious condition, and whilst it would get us the letter we need, it would also cause them to do a whole series of pretty unpleasant things to ds as an emergency process and I don't think that would be a good idea.

I could sensibly claim that he has diet controlled obstructive apnoea but I'm not sure how that would justify his being too tired to attend full time school. It's a bit of a puzzle.

But if he has OSA it needs addressing by one means or another. A sleep study is only one night.

Has he still got tonsils and adenoids?

What dietary restrictions is he under? Milk allergy?

You can ask the school for a formal flexischooling arrangemrnt whereby he is at home for one afternoon per week. There is no law to say the school can't agree - it's very much in the gift of the school.

The system had me tearing my hair out for a similar reason (although in my case my DD has complex health and lots of diagnoses). So, sharing what I've learnt... School cannot just allow part time attendance due to medical needs because every child is entitled to a full time education. The get out clause to full time attendance is a footnote in the gov policy "5 All children must receive a full time education, unless this would not be in their best interests because of their health needs". So, the school is right that they need proof that it is 'in your DS's best interests' otherwise lack of attendance is unauthorised for the school. You need to get a medical professional to put this 'in his best interests' in writing. Perhaps you can persuade GP or paed to base this on symptoms/history and ongoing proposed investigations even if they can't write a diagnosis? Good luck. I found all this stuff stressful!

shurely Gosh! really?

He's had his adenoids out twice and had inferior turbinate reduction once. We also dug up our lawn and threw it away to control hayfever, and cut wheat and dairy out of his diet. The wheat was causing swelling inside his nose and the dairy was causing mucous to build up inside his nose.

The dairy thing resolved with probiotics (bifidobacter) and he's back on dairy now. I tried him back on wheat recently and he managed one digestive biscuit a day for a week and then his nose breathing became noisy again so I stopped the test.

He was also off everything with added vitamins up until last year, when I figured out that he could tolerate ReadyBrek. Before that, fortified things caused him abdominal pain. In that last couple of weeks I've discovered that he can also manage coco pops and rice krispies so I'm giving him those as dessert sometimes and he also has a rice krispie bar every day. It's a really handy way to get iron into him in case he really is anaemic.

He used to also be on no chocolate (because it kept him awake) and very very low sucrose (because it caused oral thrush) but he seems to be a lot better with both of those now.

The improvements in tolerating foods have really helped as he has a much wider diet and it gives him so much more pleasure and freedom when he has a wider diet. This is the thing that makes me feel really optimistic about the situation.

I do wonder if the food intolerance initially caused the sleep problems but then the sleep problems exacerbated the food intolerance. He's been sleeping soundly through the night for two years now and it's making me think that maybe all this sleep is somehow helping to heal the food intolerances.

How does the flexi-schooling work? That sounds like fantastic idea. I'd be very happy to home school him just a little tiny bit.

Just keep him off or collect him when he needs it. Who cares if the school kicks up a fuss. Look at your counties attendance policy and you will see that the head is allowed to authorise absence in special situations. This is a special situation and you can tell the ESW if it comes to it. Make sure your reason for absence is logged by yourself and the school. Your child's health has to come first. Even if non attendance is recorded as unauthorised, you would have to take a whole week off to receive a letter of concern.

Pointing you in the direction of gov policies on flexischooling that has been mentioned above via a school website that specialises in it. As said, it is at the headteachers discretion, but could be an option if you cannot get a letter of medical support?

That's really useful Buntingsmum. It doesn't say anything at all about a formal diagnosis. Interesting. :-)

Thanks Buntingsmum. I'll look at the flex-schooling too. That's great to have that as a backup.

I don't think I'd have the brass neck to just keep him off like that GoldFishFingerz. Brass neck isn't really my strong suit.

Out of everything in that webpage, the legal bit appears to be:

The Legal Basis of Flexi-schooling (also see table of DfE Documents at the base of this page)

Reference needs to be made to the following document - Elective Home Education Guidelines for Local Authorities (England) 2007 Subsection 5.6 which clearly states;

5.6 “Flexi-schooling” or “flexible school attendance” is an arrangement between the parent and the school where the child is registered at school and attends the school only part time; the rest of the time the child is home educated (on authorised absence from school). This can be a long-term arrangement or a short-term measure for a particular reason. “Flexi-schooling” is a legal option provided that the headteacher at the school concerned agrees to the arrangement.^ The child will be required to follow the National Curriculum whilst at school, but not whilst he or she is being educated at home. Local authorities should make sure that headteachers are made familiar with flexi-schooling and how it may work in practice. Further information is available in the DCSF’s guidance Keeping Pupil Registers.(21)^

So without the head teacher agreeing, it's a non starter. Plus flexi schooling isn't about going home to sleep it's about home and school education combined.

Buntingsmum the paragraph on flexi-schooling (5.6) seems to have been removed from the official government document on the subject and I can't find the replacement.

www.gov.uk/government/uploads/system/uploads/attachment_data/file/288135/guidelines_for_las_on_elective_home_educationsecondrevisev2_0.pdf

Are you sure that this option still exists? Thanks!

This seems to be the up to date information.

edyourself.org/articles/flexischooling.php

It seems as though the problem is that they would have to mark him absent on his afternoons off. It seems better to mark him absent for a few afternoons then do to it for ten or more full days every time he gets ill thought. Hum.

AGenie, there's a patient advocate group called SWAN (Syndrome Without A Name). They're on FB etc. I just wondered if they might be able to help with some ideas or some support. I'm sure that other parents within the group must have experienced similar issues.

It sounds like the Head Teacher just wants some supporting evidence that they can point to though - wouldn't a letter from your GP suffice, that just summarises the situation and says that they support afternoons off when required (or something like that)?

Space yes it's possible. The government documents do just say that the letter only had to say that it's in his best interests. Nothing about a diagnosis. I think I should double check that with someone who knows before I talk to the GP. I wonder if that means the senco, the headmistress, the board of governors or the welfare officer. It's hard to know who is in authority and whether I could put the head's back up by asking the wrong person. I'll look up that facebook group. Thanks!

I'm not sure his difficulties are severe enough for SWAN to be appropriate ? Isn't that a group for people raising children with undiagnosed genetic conditions causing significant learning difficulties?

From your op, it's unclear what he needs beyond him appearing to be getting run down and then having an afternoon off to avoid getting ill?

If I'm wrong, I apologise sincerely.

As far as I'm aware, It's medical information they need for the best interests. Often for when someone needs an alternative to full time school such as LA funded tuition?