Teenage daughter being investigated for CFS

[legodisasterzone]

Hi
I would appreciate any help or advice those of you with experience of this could offer.
Sorry,it’s lengthy!!!

DD2 (14) has been poorly for about 18 months now. She has got the following symptoms:
exhaustion,pale, struggling to sleep, sore throat,head aches, aches and pains,poor memory and concentration and lack of motivation. She can’t walk far without needing to rest and can’t do much in the way of mentally challenging work without needing a long recovery.

She had blood tests,which identified a Vit D and Vit B12 deficiency and she has had medication and 5 B12 injections. The deficiency is diet related,as she is lactose intolerant me vegetarian (her choice).

However,none of the medication made a bit of difference and she continues to be ill and exhausted. She is also on the ASD pathway -we removed her from school in the summer and now HE her due to the school not meeting her needs and a very traumatic and stressful school year.

Two separate GPS mentioned CFS -as her bloods are now fine and there is no other reason they can find for her illness. They said her symptoms match the CFS symptoms.
She has been referred to CAMHS for further investigations. We were told to carry on as we have been in the meantime (pacing her activities ,rest periods, fresh air, good sleep hygiene)

However, in the meantime, I’m worried sick. She seems to be getting worse and she looks so pale and poorly. I don’t know how to help her ,how much to ask of her or how much to let her rest.

Does anyone have any ideas or opinions please? This is all new to me and I feel like I’m winging it so far!

Oh and she isn’t depressed-she has anxiety and sensory overload due to probable ASD and it can be hard to separate all of her issues.
TIA

I know it is very very controversial but I thought I would mention it anyway. Since my last post here I met up with an old friend and she said she had suffered with ME (I haven't seen her in years) and cured herself with Phil Parker's lightning process. Just thought I'd mention it. Or even just for hope that people do recover and become 95% better.

Have you got a referral to CFS centre of excellence?

It is very very controversial.
I did the lightning process out of desperation and it didn't work for me. It did make me be kinder to myself so wasn't a complete waste of time and £. But not the outcome I was looking for.

Glad you've had some positive feedback from her GP. That sounds really hopeful.

I hope the appointment goes well.

@MissisBoote unfortunately from reading online it is hard to see how successful it has been. There's lots of positive stories but not many negative, but I'm sure obviously it doesn't help the vast majority. But maybe some.

Good luck with the GP.

I think that perhaps there are fewer negative stories online is because people feel embarrassed that they've forked out lots of £ on something that hasn't worked. It cost me over two months of my sickness benefits money.

Thank you. I’m going to ask her advice about using a wheelchair -as the days go by, DD is leaving the house less and less and is getting no fresh air.
For the first time today,she said it’s all starting to get her down and she’s sick of being in the house. 😔

It might be worth seeing if she can get a referral to camhs for some counselling - note as a cure for the CFS but to help her come to terms with her current situation. I had Interpersonal therapy which was about coming to terms with a change in my life situation.

It might be that there's something out there that can give her tools to emotionally manage her limitations. Winter is always a difficult time though as in the summer at least she can sit out on the garden, and life is generally much nicer then. When it's cold and dank everything looks a bit more depressing.

I just remembered. I read this book a few months ago and so wish I'd read it when I was first ill.

It might be good for all of your family to have a read of it. The author had CFS/me but lots of the info can be applicable to any long term illness.

www.amazon.co.uk/dp/1614292485/ref=asc_df_161429248557107646/?hvlocphy=9045045&linkCode=df0&hvptwo&psc=1&hvnetw=g&hvadid=310834580283&creative=22110&hvpone&hvlocint&creativeASIN=1614292485&th=1&hvpos=1o1&hvdev=m&hvdvcmdl&hvqmt&tag=mumsnetforum-21&hvtargid=pla-565192728901&hvrand=5667866909172326225

Oh my God-can I come here and rant in a safe space? That appointment was horrendous!

The positives are that I got an earlier paediatrician appointment and managed to get a higher maintenance dose of Vit D.
However, the GP started by saying she knew very little about CFS (!) then came out with the following gems:

• ‘She needs to build up the muscles in her legs. Get her a skipping rope and make it fun.’
•’Sometimes I don’t want to go to he gym,but I need to push myself and I always feel better afterwards’
•’ If you don’t push her to exercise,she will get lazy and be less likely to do it.’
•’ She might need a wheelchair at some point but (to DD) it isn’t noce cos people walk into you and bang their bags into you’

I really don’t even know where to start.....

Thanks for the link Missis- I will definitely have a look.
She already has a CAMHS referral in-appointment at the end of Jan.

Oh no. How thoroughly disappointing and frustrating

Vent away!

Perhaps order a copy of this for the gp. It's free for health practitioners.

www.meassociation.org.uk/shop/books/mecfspvfs-an-exploration-of-the-key-clinical-issues/

OMG, pushing someone into physical activity is one of the most important things not to do. Sorry you had a rough time @legodisasterzone

Missis I may just do that

Steve I am so new to this,but all the advice so far agrees with you.
I almost wanted to laugh at DD even having the energy to pick up the skipping rope!

Yes absolutely don't do anything that is going to increase her heart rate.

Interestingly there is some guidance in the NICE guidelines about using heart rate monitoring. They talk about it in the context of graded exercise therapy which we all agree is harmful for people with me/CFS.

I spent a few weeks wearing a heart rate monitor and found it a useful tool as it reminded me when I've was doing too much and was actually doing myself harm. I'll see if I can find the relevant info tomorrow.

Just to confirm, I also had a weird, metallic taste in my mouth. I'd forgotten about that until I read your question.

six has today been any better?

Missis thanks for the info-very interesting,escpecially given that DD gets dizzy when she stands up from sitting /bending etc.

Thanks five- DD says she isn’t sure what the taste is but that it changes the flavour of things?

She slept this afternoon . I know the guidelines are not to let them sleep in the day,but DD is so averse to daytime napping that I knew she must be desperately tired.

We managed half an hour to visit MIL and she seems to have coped.

I also bought a very high dose B12 mouth spray from Holland and Barrett- I thought anything extra I can get into her will help.

As some mentioned, it may be important to review all levels of nutrients in the body. Have you also considered CoQ10? This may be another to review with your doctor. Here is some background research on mitochondrial disease and CoQ10 (not necessarily CFS, but this may be relevant):
www.sciencedirect.com/science/article/pii/S1357272514000375

CoQ10 was one of the supplements that my ds was prescribed in high doses. You can have blood levels of CoQ10 tested.

Could you see a qualified nutritional therapist?

They can order private tests looking at cortisol levels, gut health and similar things for CFS. Your GP will poo poo it but it’s not like they have any answers!!

ck and sofia thanks for the Q10 information-I will have a read up and give it a try. Can’t hurt,can it?

calledyou totally agree about GPs-don’t get me started!!! The nutritionist idea is definitely a good one -especially given that DD has such a restricted diet.

six good luck today-let is know how it goes.
It’s so great when you manage to get them out of the house,isn’t it?

DDanaged lunch at a garden centre yesterday but had to wait in the car while I visited a couple of shops-she just couldn’t do it.

We are having a couple of rest days as we are going to the Pantomime in a local city on Saturday. I have contingency plans to help her,but I admit I’m concerned about how she will cope.
We have written off Sunday so she can recover.

It's easy to lose yourself down a rabbit hole when you stay looking at supplements.

Dr Myhill recommends a keto/paleo diet which should be ok for your daughter Lego bearing in mind she's already on a pretty restrictive diet.

After reading her guidance done time ago I started taking the following for a few years.

Coenzyme Q10 as ubiquinol – 200 milligrams
Vitamin B3 as niacinamide – 500-1500 milligrams – slow release
Acetyl-L-carnitine – 1-2 grams
D-ribose – up to15 grams
Vitamin B12 – 5 milligrams sublingually or ideally B12 by injection
Magnesium – ½ ml 50% magnesium sulphate, ideally, or 300mg orally

I've no idea if it made any difference. I now take an over 70's multivitamin from healthspan and 3000iu vit d3 a day.

Good luck with the pantomime. Good to see you've got some rest days planned in too.

Six hope your daughter's appt went well and was productive.

It might be worth having a look on here for practitioners.

naturalhealthworldwide.com/show_medical_doctor.php

A friend has used Craig Robinson, who co-authored books with Dr Myhill. He's full up atm but might be with a call - he may be able to recommend someone or give an idea of when his list will re-open.

Dr Myhill has a tonne of useful stuff on her website.

The GMC tried to strike her off. It would actually be funny if it was so sad. She is trying to help - and succeeding - people and conventional medicine does nothing and lambasts her.