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Ways to diagnose/help DD13

12 replies

Randomeemoh · 15/08/2025 07:26

Hi there
DD13 has been unwell for over a year now,with derealisation, intermittent headaches, fatigue. Despite feeling this way she has managed to keep up her school attendance and is generally doing well academically.

We have seen the GP and paediatrician who have run lots of diagnostics - blood tests, ECG, blood pressure and neurological checks. We have also seen a psychiatrist who ruled out psychiatric problems as the cause.

The tests have not found any issues or led to a diagnosis. The doctors have advised it is most likely a post viral issue (she had a cough and tonsillitis before this developed). No real treatment offered other than making sure to drink lots of water (2-3l per day) and deep breathing exercises.

Understandably DD is now really fed up, and starting to become anxious and depressed due to feeling unwell, and not knowing the cause.

She has friends who she enjoys seeing, but has become increasingly withdrawn eg spending long periods in her room (although I guess that’s also normal teenage behaviour). She is also less active due to tiredness and is putting on weight (not that I have mentioned this to her, and instead try to encourage her to come on walks with the dog etc).

I had something similar as a teenager but it went away after around 6 months. I was hoping this would be the same and stop after a few months.

Has anyone else experienced this, and found strategies or treatments that help? Any advice to offer in terms of finding a diagnosis? I feel so bad for her, it’s hard enough being a teen :-(

OP posts:
numbfromlife · 15/08/2025 11:38

Look into PAN/PANDAS?

TooHigh · 15/08/2025 12:13

did they check for glandular fever? I had it at about 16 and ended up missing 2 terms of school with fatigue but I did eventually get well enough (though not 100%).

I would firstly make sure her vitamin levels are fine - vit B and D are big issues post viral

secondly see if there’s a ME support group near you

https://meassociation.org.uk/local-support-groups/

also check this out from the ME association
https://www.actionforme.org.uk/supporting-you/supporting-yp-with-me/

https://meassociation.org.uk/wp-content/uploads/CHILDREN-AND-ADOLESCENTS-CHAPTER-MEA-CLINICAL-RESEARCH-GUIDE-2022-MAY-2022.pdf

Local Support Groups - The ME Association

The ME Association listing of independent support groups who aim to provide support in your geographic area.

https://meassociation.org.uk/local-support-groups/

Randomeemoh · 15/08/2025 12:17

TooHigh · 15/08/2025 12:13

did they check for glandular fever? I had it at about 16 and ended up missing 2 terms of school with fatigue but I did eventually get well enough (though not 100%).

I would firstly make sure her vitamin levels are fine - vit B and D are big issues post viral

secondly see if there’s a ME support group near you

https://meassociation.org.uk/local-support-groups/

also check this out from the ME association
https://www.actionforme.org.uk/supporting-you/supporting-yp-with-me/

https://meassociation.org.uk/wp-content/uploads/CHILDREN-AND-ADOLESCENTS-CHAPTER-MEA-CLINICAL-RESEARCH-GUIDE-2022-MAY-2022.pdf

Thank you for this. I would assume glandular fever was checked in her blood test…..but would have to ask. I will see how to check vit B and D levels and look at the ME info. My gut feeling is not ME - it’s more detachment that she has than brain fog, and she isn’t completely wiped out by exertion…..but that said there are some shared characteristics. Poor kid :-(

OP posts:
TooHigh · 15/08/2025 12:20

Sounds awful. I have long Covid and her symptoms are v similar to mine tbh. But it’s a minefield as it can be so many other things so it’s key to make sure they’ve looked for everything like diabetes, thyroid, vitamin issues etc. before they conclude it’s post viral

BensonSVU · 15/08/2025 12:22

I am going through something similar, how is her balance? I am being investigated for vestibular migraine

Octavia64 · 15/08/2025 12:25

The tests for glandular fever are not particularly accurate. My DD had similar when she was 16 and we were advised that there wasn’t much point getting the test as it was frequently inaccurate.

the derealisation sounds unusual. Is the psychiatrist not in a position to offer advice on that?

post viral fatigue etc is unfortunately very common.

RedFluffyElephant · 15/08/2025 13:20

Ask for her to be tested for Vitamin B12, Vitamin D and her thyroid gland.

SummerFeverVenice · 15/08/2025 13:26

Why hasn’t she had an MRI or CT scan of her head? Lots of brain conditions cause headaches and fatigue.

Has her vision been checked recently?

Also, many girls and women have hormonal caused migraines which cause the banging headache (migraine), feeling unwell (dizzy, nausea, light sensitive, and/or brain fog), and then fatigue. As she is 13 and periods are probably underway or close to starting she could have hormonal caused migraines. Have her keep a diary of her symptoms and their impacts. There may be a pattern that aligns with a monthly cycle and potential triggers.

Randomeemoh · 15/08/2025 15:00

RedFluffyElephant · 15/08/2025 13:20

Ask for her to be tested for Vitamin B12, Vitamin D and her thyroid gland.

Thank you. Vit D and thyroid clear, will ask about vit B

OP posts:
Randomeemoh · 15/08/2025 15:01

SummerFeverVenice · 15/08/2025 13:26

Why hasn’t she had an MRI or CT scan of her head? Lots of brain conditions cause headaches and fatigue.

Has her vision been checked recently?

Also, many girls and women have hormonal caused migraines which cause the banging headache (migraine), feeling unwell (dizzy, nausea, light sensitive, and/or brain fog), and then fatigue. As she is 13 and periods are probably underway or close to starting she could have hormonal caused migraines. Have her keep a diary of her symptoms and their impacts. There may be a pattern that aligns with a monthly cycle and potential triggers.

Edited

Thanks - the headaches are non severe and intermittent/infrequent. Paediatrician has fully tested for neurological conditions. I agree it could be hormonal, or exacerbated by that. Unfortunately her cycle is too irregular to spot patterns, but wil keep tracking.

OP posts:
SummerFeverVenice · 15/08/2025 16:05

Randomeemoh · 15/08/2025 15:01

Thanks - the headaches are non severe and intermittent/infrequent. Paediatrician has fully tested for neurological conditions. I agree it could be hormonal, or exacerbated by that. Unfortunately her cycle is too irregular to spot patterns, but wil keep tracking.

Just fyi, not all migraines are very painful and some kinds are even with no pain. It might be worth getting a second neurologist opinion….with a diary in hand of symptoms and severity. At the very least to get a head & neck CT & MRI.

Randomeemoh · 17/08/2025 06:55

Thank you so much everyone for your advice. I will get in touch with the GP tomorrow to suggest the further tests and also see if they can refer for mental health support.

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