11 year old daughter been ill for 4 weeks and 3 days!

[Buttonmoon99]

We cannot understand what is happening here. I took her to the gp on day 4. Gp did all the usual tests and only symptom was enlarged glands on her neck. At that time her appetite was very low and she intermittendly felt sick but no vomiting. Two weeks later and no improvement. I took her back to the gp, saw a different gp who did all the usual tests and found nothing of concern. She referred us for bloods. The soonest they could do bloods was the following two weeks. Bloods done, blood clotted so they had to re-test yesterday and we're waiting on results. Between the second gp visit and now I took her to a & e as over that weekend I became so worried and called 111 who said to take her to a & e. Doctor found nothing of concern at a & e.

In between this time her appetite has returned but she will not do anything at all and the only reason she can give is her energy feels low and she sometimes feels sick. She stays in her room all day and is even reluctant to come downstairs for meals. She seems unhappy and speaks to both her Dad and I in this very quiet sad voice but when speaking to her twin sister her voice is kind of normal, just a bit quieter.

We cannot understand this. She's managed two weeks in her first year at secondary. She managed a couple days back during all this but didn't want to return the following Monday as she said she still didn't feel well. We wondered if it was some sort of school based anxiety but she is adamant there are no issues there.

She's genuinely upset to have missed some Halloween activities we had planned and more than once has asked when will I feel better so this doesn't sound like a child thats putting it on.

We suspect she's on the spectrum somewhere as she finds it difficult to explain how she feels amoungst other traits.

She's not any worse but also not getting any better.

Anyone have any thoughts or experience on this?

Glandular fever? That can go on for ages.

I don't have an answer but I can imagine how distressing it is not to feel you can help her. I would go back to the GP, book an appointment with the most empathetic one who is a good communicator, and ask them to go through the blood results in detail to ensure there's nothing that is a bit off but that has been dismissed as 'close enough to normal' - the NHS can be bad for this, especially with iron or ferritin levels in women, which can be low yet we get told it's 'within normal range'. Is she vegan or vegetarian?

What have they tested for and ruled out?

If you look up long COVID - which can also be long flu, or long cold, or long any virus - does that ring bells?

Also yes to glandular fever - this can be tested via bloods?

How’s her diet? Have you tried a multivitamin?
How’s her sleep? Any screens in her room she might be watching for a couple of hours in the middle of the night?
Second others that a trip back to the GP seems in order.
What are school saying?

Does she have a fever? It would be helpful to keep a diary of the illness, just a few lines each day recording food eaten, hours of sleep, fever, nausea. Having that written down is a useful thing to show the doctors and convince them this is real.

My daughter developed the quiet voice and out of that, it turned out that she was having intrusive thoughts and a type ofOCD so ask her, is her head noisy? That said, her cousin got an episode of depression after a viral illness , so I wouldn’t rule that out either.

There’s a few things that immediately come to my mind
~ school based anxiety as you say , it’s a huge change for any child going up to secondary school but for a ND child even more so (in fact I lost a lot of weight transitioning to year 7 and my parents thought I was anorexic, it was actually just severe anxiety. I felt so physically sick to my stomach due to the overwhelm). Perhaps beginning of an eating disorder, which is much more common in ND girls, but I really hope not

~ constipation. Much more likely in an ND child than a neurotypical child. My autistic son had vomiting and reduced appetite for 7 weeks. Only on the third hospital admission did he have an xray which showed he was severely constipated - we had no idea until then because he was still pooing around the constipated blockage

Just to add , if it is to do with school anxiety/avoidance it absolutely does NOT mean she’s ’putting it on’.

The physical symptoms of anxiety or stress are incredibly real and very distressing.

It’s good blood tests have been done to try and rule out infection, but I imagine she’s feeling genuinely unwell from overwhelm. Read up on emotion based school avoidance.

How was she over summer holidays? Is it half term where you are? Any change whilst on half term?

I feel for you and your daughter OP

Possibly post viral fatigue , it can go on and on and cause depression . It’s very hard when you feel ill weak and tired but nothing is found to be wrong and you just can’t snap out of it .

Lymes disease? You DONT need to have the target mark around a tick bite and a significant percentage of people who get Lymes don't have the rash (I didn't).

It can take 6 weeks or so to manifest, have you been anywhere in the last 6-8 weeks where she may have had a tick bite? The warm weather means ticks are around almost all year nowadays and will be anywhere deer are (so Richmond park for example, not a place you would think of Lymes!).

I had one tick on my shin and didn't realise it was a tick and scratched it out accidentally which resulted in Lymes.

ME/CFS or long Covid? I really hope not. You get normal blood tests with this condition. If it is one of these things, she must rest.

ME/CFs is probably comorbid with autism and ADHD - probably in that there is hardly any scientific evidence but ME/CFs specialists and psychiatrists think that there is a link.

For more info:

https://meassociation.org.uk/

Speak to school and Lea officer for child missing school due to illness (kicks in after 15 days missed per govt guidelines There may be group she can go to to get back into education.

Illness and your child's education - GOV.UK https://share.google/zWTZiTaB9BG0fbmpr

https://www.gov.uk/government/publications/education-for-children-with-health-needs-who-cannot-attend-school

I had glandular fever 12. I had 3 weeks off school and then did a phased return over 3 weeks as I was too tired to do full days. Have they mentioned checking for this in the blood tests?

I can't understand why she has been off school since the start of term apart from 2 weeks, with barely any symptoms. Why can't she go? What is she doing in her room? She really needs to go after half term- missing this much at the start of secondary js now going to be really hard to come back from and she's at risk of long term absence.

Covid, glandular fever, PANDAS. I wouldn’t be so quick to rule out autistic burn out the reaction is physical and transition to secondary is a classic time for it to start.

As the proud owner of an 11yr old DD, this is a very troubling, anxiety-ridden age and the move up to high school is fraught with worries. Forgive me if I’ve misread your post but it sounds to me like she was unwell with a virus for a while and was perhaps also feeling down or anxious about school and/or something else in her life? Perhaps being physically unwell has exacerbated it so she’s said she still feels unwell but now it’s emotionally?
Again, I may have misunderstood but that’s what I’m taking from your OP…?

Yes my DD has had intrusive thoughts. That was a terrifying and emotional conversation but we thankfully have worked through it with absolutely tonnes of reassurance and support.

Yes! This is what we're wondering too! I suppose we wait for the bloods to come back and if clear, we somehow try and navigate the problem emotionally, although I have no idea how

Thanks. I thought about Autistic burnout. She's so adamant nothings wrong school wise, but like I said to her Dad sometimes we feel these things subconsciously and we're not even aware of how we're really feeling

She's been off because she's been unwell. She returned during this period for two days and couldn't manage a return the following school day saying she still felt unwell and that she struggled for the two days she was there.

I have no concerns about her missing school. Her health (mental, physical or emotional) is our main priority at this time.

Yep. This has been requested as part of the blood work.

Thanks. Yeah, this was requested in the blood work we're waiting on

Diet isn't the best. She has a multivitamin everyday and has done since she was small. No screens are allowed in her room overnight. School are extremely unsupportive. The best I've had is "we'll keep an eye on her"