9 year old with possible Chronic Fatigue syndrome/ ME any experience?

[PanannyPanoo]

My 9 year old daughter is currently waiting for an appointment with a paeds specialist as our GP feels she may have CFS. I just wondered if anyone had any experience / advice.

She has had lots of blood tests and there doesn't seem to be anything underlying, she is wiped out for much of the day, has given up after school clubs, needs encouragement to play outside is constantly achey and sore and generally a very unhappy little girl. We have a daily battle to get her to school, though once there she is fine, totally shattered when she gets home though and basically stays on the sofa til bed time.

Many thanks for any advice, she seems so young to be feeling this way.

have you had the results of the blood tests or have you been informed they are in the normal range?

typical reasons for fatigue in children that age are viral disease, anaemia, deficiencies (iron, b12, d3), diabetes or thyroid issues.
sometimes absorption issues (coeliacs) can play a part.

if you have 500£ spare (or health insurance) you could see a private paediatric gp.

Could it be her personal response to severe anxiety?

We were informed they were within the normal range apart from one marginally inflamed marker.

We are awaiting an appointment to see an NHS specialist but it is likely to take a couple of months.

Thank you so much for responding, do you have personal knowledge?

dc was investigated for an inflammatory disease.

so yes, we've been through the mill. we went private in the end as we couldn't afford the time off work due to appointments and dc illness.

ask for a printout of blood test results.

refeedsail We thought it was anxiety initially, as school seemed to be the main focus of her upset. Things have progressed since then though, how would we be able to tell?

Greenelephant, do you have any tips on how to help her cope and how to support her siblings through the emotions and cancelled plans?

I had ME for 8 years ish until I had my son which strangely seemed to ‘cure’ it. I really feel for your DD it is truly awful and I wouldn’t wish it on anyone - think of the most tired you’ve ever been and then multiply that by 100 .

Definitely look into pacing it does make a difference, I did find I could prioritise and then manage to do some ‘normal’ activities. Also consider any food intolerances that may make symptoms worse.

we tried to not let if affect the other dc by doing lots of things with them. we reduced activities to one sport dc didn't want to give up.

luckily after diagnosis the anti inflammatory medication was a miracle drug and I had a happy and active dc again. in our case I think it was the pain that caused the other symptoms.

www.tymestrust.org/ Tymes Trust is the only national ME charity dedicated to children and young people with ME and their families.

This charity will help you along the way.

Thank you all so much, that's brilliant Smurfy I havent heard of them yet.

Sorry you are all going through this. I have ME and it's very hard to describe how it feels. Fatigue doesn't describe it well enough. Stonking hangover, full on flu and just climbed a mountain rolled into one.

Google for 'spoon theory' this is a method of pacing and would be helpful to managing the exhaustion in the mean time.

Could you set up an energy diary for her so throygh the day you can work out what her triggers are for fatigue? Mine are
. Physical exertion eg heart rate going higher than sedentary heart rate
. Emotional stress eg getting cross with the children
. Mental stress eg trying to work out dates or add up in my head (I'm a teacher so this used to be fine)
. Environmental factors eg bright sunlight or sudden changes in temperature

Any of these can cause immediate fatigue and also post exertional malaise. Eg I walk up a hill, feel tired all afternoon but the next day I really struggle to move around at all.

By recording her activities every hour and energy levels (points out of 10?) you might notice patterns in her symptoms.

You could have described my DD, but hers is definitely down to severe anxiety around school.
She struggles to verbalise this though - all she says is "everything hurts", "I feel sick", "my tummy hurts" etc
Spends the day on the sofa under a blanket, no appetite, low mood....

Im going to leave you a couple more links as pacing is the way forward,

CBT and GET (Graded Exercise Therapy) are pushed as "treatments" for ME/CFS. AVOID

However, GET has left many people a lot worse than they would have been if they had been encouraged to pace. CBT is aimed at they need to change the behaviours (and usually supports pushing thru) IME and causing harm.

www.bbc.co.uk/news/newsbeat-44004882

CFS is being pushed by the psychiatric lobby over many years and harm has been caused to many, the PACE trial was found to be exaggerated and is in the long process of being overturned completely. Many UK Drs won't diagnose ME (as the name suggests brain inflammation at the least and it is seen by many as a mental illness) and call it CFS instead.

Chronic Fatigue Syndrome which the name suggests is someone chronically fatigued or tired and it is far from the hell people go thru day in day out. It is not a psychiatric illness. This is just for context and is not to start a debate on this thread.

Have a look at this site, howtogeton.wordpress.com/how-to-save-spoons/

howtogeton.wordpress.com/how-to-practice-pacing-for-myalgic-encephalomyelitis-and-chronic-fatigue-syndrome/

The lady behind the site is American so a lot of advice is for Americans on how to access life when cant work and in her own position is bedbound thru various illnesses. The saving spoons and pacing is universal and does help.

Tymes Trust will give you lots more info and support, also assist with school and advise who might be best to help in your region.

Good luck and if you have any questions and want to pm give me a shout

BTW if you happen to be in the South East of England I know of someone who is seeing paeds with m.e but it is private

Very unlikely but what is her heart rate? Have a google of Innapropriate sinus tachycardia. Any stress good or bad wipes me out.

drive.google.com/file/d/11CZkkp8gRetliBiUeOSIu-zL6HAEc8zi/view?fbclid=IwAR1o7fCpi6qxYlxhaMZHeJFk5TeSmsk-Xzhd_BtrdT5GW9RVsO5MGbyNw04

This document shows the fight to overturn GET / CBT

No personal experience but anecdotally when I was at primary school (a long time ago!) a girl in my class had CFS in year 5 or 6. She missed a bit of school, lost a ton of weight and spent some time in a wheelchair but it seemed to improve fairly quickly and she started secondary pretty much as usual. There was also a girl at my secondary who developed it around GCSE time. She missed some school then left so not sure what happened in the intervening period but I bumped into her at university where she was the same year as me and fine so no long-term impact there either.

Sorry your daughter is unwell

before you go down the cfs route other causes must be excluded.
I'm not saying cfs/me isn't real, but that other causes might be mimicking symptoms.

*before you go down the cfs route other causes must be excluded.
I'm not saying cfs/me isn't real, but that other causes might be mimicking symptoms.

I agree with this and also that it’s used by doctors when they don’t have a clue what’s going wrong.

Thanks for the link, I found it useful.

My cousin had ME in her early teens. She was very sporty previously, county netball etc. She is now a fully recovered adult. I think the recovery statistics are better for children than adults

Thank you so much for all the input, I wrote a long reply this morning but it doesn't seem to have posted.

My youngest son has severe food allergies, so we are quite aware of these and I am pretty sure these aren't a factor for her.

We have EDS in the family and Chronic Fatigue/Me is often linked to this, so it does seem a likely possibility. The EDS does leave her exhausted at times but this is on another level entirely.

We are aware of the spoons theory through EDS and are pretty mindful of her reserves, to clarify this through a diary is an excellent idea, I have started noting the amount of sleep, her moods and energy peaks and lows, I will try to formalise this to see if there is anything it flags up.

Swatsup I will ask re her heart rate, that's interesting - Both mine and my husbands family have rare members with genetic disorders and unusual illnesses, so we are familiar with not fitting into what is statistically the most likely diagnosis.

Our youngest has severe and complex food allergies, our middle EDS and possibly CFS and our eldest has a disorder that affects only 33 others in the UK. All seemingly unrelated disorders.

Green Elephant, the GP has done a thorough screening of bloods and has put us on the CFS path - is there anything particular that I should be asking about do you think?

If it may be something else and we can cut out months or years of trial and error by suggesting a few other possibilities that would be beneficial. (We have been there and done that with our eldest!)

We live in Devon and have been referred to Bath. Its likely to be June before we get seen.

Thank you Smurfy for all your thoughts, we are definitely going to be doing all we can to help her pace and get through the days enjoying the bits that are most important to her.

Raveon your DD sounds very like mine. how old is she? Mine is very anxious about goingto school, but ok once there. She often asks if I can sit in class with her and some days I have had to bring her home and calm her down before trying again a bit later. Once she is there she enjoys all aspects, its just getting her there, but after school she is totally wiped out whereas a year or so ago she wouldn't sit still for more than 20 mins or so, even sitting for meals she was keen to get back to physical activity.

I will spend time looking through all the links and rereading your posts.

Thank you all so much.

I think there is a link between Eds and IST, also POT but that’s mainly fainting while standing up. Doctors are only really just starting to take sinus tachycardia seriously and there is now a brilliant drug out called ivabradine that helps. It’s always been put down to anxiety and ME type before.

If you have the money I recommend going private for the first referral appointment. You can choose who you go to and then carry on with the nhs after. (I completely disagree with having to do this and think its is so unfair but have done it in the past with various kids health issues and it does shortcut the waiting system) cost us about £300

Thank you so much. We are very familiar with POTS I will look into IST.
We have seen some excellent EDS specialists at the Mineral Hospital in Bath, do you think it may be worth getting rereferred to one of them to further investigate in addition to the CFS ? or do you recommend anyone privately?