Extreme exhaustion in a 13-year-old

[tatman303]

Hi
We have a 13-year-old girl who is sleeping in excess of 18 hours per day, for most days of the week and has been for about a month now. To give some background, she is currently under the hospital for a genetic condition with her foot (that does not restrict her activity so much, more her mental health). She was on Amitriptyline (5mg) for over 6 months to help with the pain and discomfort of the condition, which was tied closely to her pain reaction which affected her anxiety levels. The medication seemed to be having a few slight adverse effects relating to more tiredness so she was moved onto Nortriptyline (5mg) over Xmas, but lasted just one week as she became more tired.
By early January she was having very, long deep sleeps, sometimes for over 18 hours and we were quite often unable to wake her without her drifting straight back to sleep. After taking her to the doctors she had blood tests which showed a low level of iron (level 12) and low vitamin D. She eats a moderately normal diet for the 12-year-old and is now on iron and vitamin D supplements and is encouraged to eat such as Spinach and Steak to get her levels corrected before her next blood test.
There is much suspicion (that is to be investigated by medical professionals) that she may be on the Autism Spectrum, she has long had various traits, although these are usually individual signs rather than one continuum in her behaviour.

She has lost much of her spirit and character, although we do often see it for an hour each day, usually at night. Obviously, we believe that Lockdown has also played its part in knocking our daughter for six, as it has many children. Added to the ongoing issue with her foot in which she has had CT Scans MRIs and other medical procedures, including a steroid injection into the bone of her foot, it has been a tough two years where she has missed most of school.
We hope that we could help her catch up with home schooling with a mixture of classes and BBC Bite Size, but she is unable to do more than just an hour or two a day at best.
We also know that now she is a teenager that she would start to move away from us socially (into her own room) and would need more sleep, but we wondered what other member's on this forum have experienced with their 12-14 year olds, especially with regards to sleep and certainly with any kind of iron deficiency. I suppose we also cannot rule out that she may have had Covid and this is a post viral issue on top of everything else she has.
Any guidance or suggestions would be most appreciated.

Thanks

I came on to say that it sounds like a teenage growth spurt but 18 hours a day seems like a lot. I'd get her seen by the GP again.

I agree with above take her back to GP. They need to do full blood panel and especially check whether she is positive for glandular fever. She could have post-viral chronic fatigue. Test to see too if she’s had Covid, same could apply post-viral chronic fatigue also called “long Covid”.

If she does have CFS caused by post viral fatigue, then she qualifies as a student with SEN and you can work with Drs and school for her to be accommodated at every level up to and including even skip rest of this academic year and start the year over in Sept 21.

@BlowDryRat

I came on to say that it sounds like a teenage growth spurt but 18 hours a day seems like a lot. I'd get her seen by the GP again.

Many thanks for replying. I have just contacted her GPs to ask for a different level of iron supplment to see if that makes any difference and give it a few days.

@PlanDeRaccordement

I agree with above take her back to GP. They need to do full blood panel and especially check whether she is positive for glandular fever. She could have post-viral chronic fatigue. Test to see too if she’s had Covid, same could apply post-viral chronic fatigue also called “long Covid”.

If she does have CFS caused by post viral fatigue, then she qualifies as a student with SEN and you can work with Drs and school for her to be accommodated at every level up to and including even skip rest of this academic year and start the year over in Sept 21.

Many thanks for replying, I have just contacted her GPs to ask for a different level of iron supplment to see if that makes any difference and give it a few days.

This does look like post viral fatigue, but until we get her iron levels back up, I would imagine the GP won't look elsewhere.
It's useful to know about the school support, of which she has recived much already due to her longer term condition.
I wonder if any other parents have seen this level of fatigue in their children, especially if they have been given a positive diagnosis of Long Covid.
Thanks

What was her vitamin D level when she was deficient, and what dose is she on now? Do they plan to retest that soon? Unfortunately we can only get about 10% of our requirements from food. Was she any better during summer months?

@DianaT1969

What was her vitamin D level when she was deficient, and what dose is she on now? Do they plan to retest that soon? Unfortunately we can only get about 10% of our requirements from food. Was she any better during summer months?

Sadly we don't know that, as the doctor was more concerned by her iron. She does now have a sray vitamin D, she usually got enough in the summer, but obviously with Lockdown and the winter she isn't getting enough, on top of fact she is too tired most of the time to take the dog a small walk.She was better in the summer, but she also had social contact with another child, which certainly helped.