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Original poster

Chronic fatigue (?) A levels - argh help

38 replies

Abthdust · 01/10/2025 09:20

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!

OP posts:
LillieLoo · 01/10/2025 14:16

Does she have regular periods?

vitamin D?
vitamin B12?
Thyroid function?

b12 and D and on the standard panels x

Original poster
Abthdust · 01/10/2025 14:10

emboxing · 01/10/2025 12:19

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.

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.

OP posts:
Original poster
Abthdust · 01/10/2025 14:08

tryinghardtostaycalm · 01/10/2025 12:18

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.

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 ...)

OP posts:
Original poster
Abthdust · 01/10/2025 14:06

flawlessflipper · 01/10/2025 12:04

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.

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. :(

OP posts:
emboxing · 01/10/2025 12:19

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.

tryinghardtostaycalm · 01/10/2025 12:18

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.

flawlessflipper · 01/10/2025 12:04

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.

ArseInTheCoOpWindow · 01/10/2025 12:00

Abthdust · 01/10/2025 11:48

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.

Show quote history

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

Octavia64 · 01/10/2025 11:51

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.

Original poster
Abthdust · 01/10/2025 11:48

ArseInTheCoOpWindow · 01/10/2025 09:51

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.

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.

OP posts:
Original poster
Abthdust · 01/10/2025 11:45

HawaiiWake · 01/10/2025 09:45

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.

@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.

OP posts:
ArseInTheCoOpWindow · 01/10/2025 09:51

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 · 01/10/2025 09:45

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.