Chronic fatigue (?) A levels - argh help

[Abthdust]

Asking the hive mind if there is anything I have missed. (Although potentially this should be in SEN, but hey ho starting here).

DD has just started Y12. She suffers from what looks like CF, but according to the GP (and I agree) is mostly likely masking fatigue from undiagnosed ASD. We have been talking about an ASD assessment since Y7 for various reasons; there was an organisational FU in Y7 where they "lost" her in the system; and then in Y10 it was deemed there wasn't time to get her the assessment in time for GCSEs but the school would do their best to meet needs (which to be fair they were supportive). DD dropped out of school at the end of Y10 and we paid for online schooling and iGCSEs which worked really well. We can't afford to do two more years of online schooling and she was looking like she was much better so has rejoined mainstream for 6th form. She has had lots of medical investigations (GP, lots of bloods, low iron which is now supplemented, paediatrician referral who discharged her after a few months at home cos she went pink and had energy again). It is definitively school that is driving the fatigue. She is super smart and is doing all science A'levels and not finding the coursework that hard; however, being in school is hard. The school have said that she can come in late and leave early depending on her timetable, but she is still really struggling. I started an EHCP process which came back "no, she doesn't have SEN" which I can go to mediation and/or take to tribunal; I am trying to instigate (again) an ASD assessment but it can't be done through the GP where we are cos new rules (although GP has been certain for about 10 years now she has ASD). Her diet is terrible and she has ARFID (on her medical record) but the support we had with that was that the nutritionist had done as much as she could for her. Her diet is not supporting her energy levels, but is not (IMO) the main driver.

My question: have others supported a YP through A'levels with chronic fatigue / very low attendance combined with actually wanting to get the qualifications and being willing to work? Any ideas on what support we could reasonably ask for from school? From LEA? Any other resources / groups we could try?

Anything really that might help. Am feeling somewhat at a loss. I am watching DD turn grey in front of my eyes and having been through this in Y10 I'm trying to figure out what I can do within my gift to support the likelihood of her being able to get her A'levels and at a level that will reflect her academic ability.

Thanks for reading massive long post!

Have you check for glandular fever with blood test? Or if you visit the US/Canada there is test for Lyme due to ticks? Also, a few kids do get long term Covid and very fatigued by it all. All three are not diet dependent but managing fatigue and energy levels.

My dd dropped out due to ASD burnout in Y12. We got an EHCP. But it proved pointless.

She did an Access course when she was ready, and is now at uni.

In burnout you need to reduce demand as much as possible. I’d let her recover first.

L remember being devastated when Dd dropped out. But there are other pathway.

@HawaiiWake yes, have tested for glandular fever frequently! The fatigue pre-dates covid; we didn't get much attention on it during the covid years for obvious reasons and it only ramped up into the unmanageable with school a couple of years ago. I know nothing about Lyme disease ... but because she got better when off school for 18 months think although physical factors are contributing it's not the whole story. Sigh.

Yes I'm concerned an EHCP won't actually get us anywhere further forward, although I would love us to get to a point where we can evidence that home-based online schooling works well for her and they would agree to fund it for two years to A'level that might be a solution ... not sure how likely or indeed desirable that is, though. Timing worries me -- everything takes FOREVER and after she is 19 she doesn't get funded education. Thanks for sharing your experience, and I'm glad your DD found a path through ... I guess I'm just wracking my brain to make sure that I have thought through the options and don't miss something that would help.

After 19 if she does not already have a level 3 qualification (a level or equivalent) she can do an access course,

my DD dropped out in year 12. Similar circumstances. No EHCP but school bent over backwards to help.

She will get funding for an Access course. This gets reimbursed if you complete a degree.

An EHCP can continue until 25, or 26 in some circumstances, so you don’t need to worry about being limited to education funding stopping after 19.

An EHCP can fund online provision or other provision otherwise than in school/college. It can also fund non-academic provision.

Without an EHCP, you are limited to what the school can offer. Without an EHCP, most sixth forms will not allow DC to drop subjects because of the funding situation, but you could ask. You could also ask if they have anywhere DD could rest in free periods or lessons she is unable to manage.

Burnout etc aside, My DD really struggled with energy at a similar age due to insufficient fuelling of her body - once she started to eat more calories it did help her to manage everything else. Is your DD having regular periods, as the nutritionist told us that was a good indicator whether the body was physically getting what it needs to function properly.

It sounds like online learning works well for her and she is self motivated. What subjects is she studying? I have some practical suggestions for self study depending on the subject.

Thank you; super helpful. Gives me the reason to keep pressing on with EHCP: was feeling really disheartened and that it might not deliver anything useful. School have said they have nowhere quiet for her to chill in which is hard to believe because she can't be the only person in a big school who needs this. :(

She isn't actively losing weight and (a new thing) sometimes says she is hungry and then actually eats. Her periods were part of the problem: frequent and extremely heavy driving low iron, so they are currently stopped (mini pill) with a view to stop her passing out every month. It would be worse if she were still having periods. (Why is life for so many teenage girls so hard? Another thread but still ...)

Thanks @emboxing . Was wondering whether I should do more exploration about home ed options for A'levels. She's doing Maths, Further Maths and Physics ... was slightly concerned about not having lab time if she does it from home: and, to be clear, I can't help her with these subjects! She is self motivated but not sure she would be able to do it entirely on her own -- I think we all benefit from someone "seeing" our work and achievements and not getting that validation for the whole of an A'level course seems ... ambitious.

Does she have regular periods?

vitamin D?
vitamin B12?
Thyroid function?

b12 and D and on the standard panels x

Oh ok - she has chosen about the best subjects for self-studying!

Both maths and further maths are basically a case of learn new techniques -> do lots of practice questions.

I would recommend:

• A textbook for the correct exam board
• Free online videos to replace the classroom teaching - I think the biggest and most complete are Bicen Maths and TLMaths but others are available and it depends on her exam board and teaching preference.
• ChatGPT (or other LLMs) are also good for walking through the steps of any problems if you get stuck and don't have full worked examples. Obviously you still have to engage your brain, but they are useful if you just need a hint in the right direction.

Physics I know less about but you are right about the lab work - you need to complete a certain number of required practicals as part of the A-level so she should prioritise classroom time for practical lessons. I think 'A-level physics online' is a well regarded resource with video lessons available as well as a couple of paid options.

I just want to say I'm giving the advice based on prioritising getting her to 'keep up' with her year (rather than the EHCP sides of things) as it sounds like she can if she is able to attend on a reduced basis.

I'm thinking if you had a structure where the sixth form let her know what was being covered each week, she completes the work (but using video lessons instead of in-school lessons when she's not well enough to be in) and then submits work to be marked at the same time as her class. She goes in for physics practicals (and perhaps tests?) as a minimum for now?

If you decide to EHE, you can still get lab time and you might surprise you how much doesn’t require a lab too.

It is also something that could be covered otherwise than at school/college with an EHCP.

It is still possible to do the practical endorsement for A level.

Unfortunately, some schools genuinely won’t have the space for somewhere quiet to rest.

@emboxing that is really encouraging and gives me something to speak to the school about -- exactly the sort of thing I was hoping mumsnet might deliver so thank you so much!

@flawlessflipper likewise, thankyou -- really useful food for thought. I will do some more investigating.

Thanks, everyone for your thoughts and input -- mumsnet at its best (well, apart from the very funny threads, but you know, for actual real life challenges!). Appreciate it! :)

You can get Lyme disease in the UK. I have a friend who got it from a walk in the south of England and still suffers.

That sounds so hard, OP. My DCs don't have these problems. However I do. I have autism, ADHD and ME/CFS. It is relatively 'common' to see these three conditions on one person.

I'm curious as to why the GP has ascribed the fatigue to neurodivergence. It is certainly more stressful and therefore more tiring living as a neurodivergent person, especially if undiagnosed because however good your understanding is, without a diagnosis you are unlikely to have a complete understanding. I possibly did have some level of fatigue and when I was at school but not to the extent anyone was worried. I do remember every week being very tired every Thursday and worse on Friday.

Has the GP considered ME/CFS?

If you want to find out more, there is lots of information on the ME Association website. They also have a very good telephone and email help line - they would be happy to answer any questions.

Have you considered an ADHD diagnosis? According to my (incredibly experienced) ADHD consultant psychiatrist, she has never met an autistic person who she can't diagnose with ADHD. There aren't really any meds for ME/CFS but she has me on ADHD meds, fluoxetine (aka Prozac) and another off label medication to help me fall asleep which is actually for menopause. Overall I fell much better. I couldn't directly say it is helped the ME/CFS but it has helped overall, so maybe it has helped.

Fatigue is related to ND due to high levels of masking of trying to function in a NT environment. There is also a big link between ADHD and CF.

My dd had dreadful fatigue for 4 years due to burnout. She also spend a lot of her previous life being very tired due to undiagnosed ADHD.

CF clinic here won’t see ND.

You're gonna have to fight, and hard. Has your GP sent chasing letters to consultant etc. Have you chased the EHCP. You need to be on it, chasing all the time. Plus school, they don't even need a diagnosis to get most things installed. Have you actually written down all you want and asked WHY it can't be installed.

Yes, getting an EHCP is like getting blood out of a stone.

Never ever take the pressure off the LEA.

That’s strange about it the ME clinic refusing to see neurodivergent people! Any idea why?

i was diagnosed witb ME at Epsom and St Helier NHS. It was really obvious that I had ME . Before it started, I was playing competitive sport. I knew I had ME when I nearly collapsed on a short jog. The difference was like night and day. I was having to stay in bed nearly all weekend too to cope with the working week. Before that I had possibly been more tired than others but nothing dramatic.

My Dd has POTS - sounds like your Dd has very similar symptoms. It took a while for Dd to get a diagnosis and we did pay for her to see a consultant cardiologist. She started having problems in year 13 and we now know from blood tests that she had glandular fever in the October ( we didn’t even know she had GF she was just off school for two days with want appeared to be a cold) and then deteriorated massively from December. I know a private appointment is not cheap, but having confirmation from a consultant did make a huge difference.
school was very helpful and from January until her a levels she only attended part time as she could not physically manage to attend every day. It did help that she had a a diagnosis and the consultant wrote a very detailed letter explaining what the symptoms were, what she could and could not do as a results and how the school could best accommodate her. I know you don’t have a confirmed diagnosis yet, but would it be worth a discussion with school re the support your Dd needs.
with regards to exams my Dd received rest breaks - the school can authorise this, does not need approval from JCQ and also extra time- which does need to be approved and we needed evidence that her chronic condition was affecting her ability to work at her previous level. School provided this as there had been a deterioration in her exam results - due to brain fog and fatigue. I know your Dd is only in tear 12 but worth researching what evidence will need to be provided.
of course when you have a chronic condition that causes fatigue extra time can be detrimental as exam go over the three hour mark, you feel more tired etc, but having that time and rest breaks and learning how to manage these access arrangements is helpful.
I wish you and your Dd well - seeing your child so physically exhausted from every day life is just soul destroying.

This. And our CF clinic won't see you if ND is suspected. CF is a diagnosis by exclusion, and fatigue due to masking for ND really common so ...

I know. Knowing exactly what to ask for is part of the problem (quiet space I know, have been told no; flex timetable I asked and they said yes, but it looks like it's not enough ...). Some comments on this thread so far have really helped. There isn't a medical route now: the consultant has discharged her; the GP says there's nothing "medical" having done loads of bloods, and in her view it's fatigue due to masking and the way its set up here she can't do anything to progress ASD diagnosis ... although not sure what that would achieve anyway. I also have a demanding job and two other YP and am tired ...