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

How are you feeling now Missis? Are you managing to get enough rest? Although I know there’s never ‘enough’.

Petulia thanks for the info. DD tested negative for both- we are actually going to change GP practice because they have been so poor and shown very little interest.

DD saw her friends for a Christmas gathering last night . She had rested for 2 days beforehand and it lasted about an hour and a half and she was so ill last night that I ended up in tears when she went to bed.
It breaks my heart to see her life being controlled by this feckin horrible illness 😔

Absolutely exhausted. Trying to rest during school hours and really not very week this weekend. Just sat and wrapped some Christmas presents and it's put me back in bed.

Your DD is doing so well with pacing and still managing to see her friends every now and again. I think the adrenaline helps you keep it all together when you're at a social occasion, and then as soon as you get in the door you're done for. It must be scary seeing her relapse like that. You're doing brilliantly holding it together.

A change in GP is a good idea. Do you know if there's a local me support group close to you? Have a look on Facebook or check out the Me association's website. There may be people who could recommend their own GP.

Ah Missis so sorry you are struggling - this time of year just makes it all more exhausting,too.
Are you going to manage to get some time to rest over Christmas and New Year?

I came off FB a while ago- I think I will have to rejoin and get some support on there. Thank you.

Look after yourself- busy times ahead x

Yes, I'm always much worse in the winter too. In the summer I only need a few days a week in bed, and I'm able to have a bigger life. The temperature drops and it reverses and I'm only out of bed for one day a week, if that. Once I'd been ill for a few years, the illness seemed to settle into this rough 'routine'

Good ideas to get back onto Facebook - lots of support groups and sources of information on there.

My dd has chronic fatigue caused by chemotherapy and also B12, ferritin and folate deficiencies.

She was quite unwell mentally, and had terrible headaches, her legs were numb her arms twitched and she couldn't get out of bed. These were caused by the deficiencies.

She got iron and folate tablets and loading doses of the B12 and then was expected to cope on one injection every 3 months. She was still bedridden and her other symptoms hadn't gone away so we inject at home once a week.
A year later she's doing a lot better but still not 'better'.

Your dd won't be better after 5 injections of B12. And do not test levels of B12 after injections it's a false reading.
You need to get ferritin and folate levels checked.

My dds haematologist said he doesn't recommend testing for pernicious anaemia as the test is so unreliable. They say you have it regardless of the test.

My dd is being investigated for coeliac and the only way to reliably test for it is to have endoscopy, you can't rule it out unless your dd has had it. However I don't believe my dd is coeliac, I think her stomach issues are autoimmune gastritis linked to the pernicious anaemia.

I agree with the ferritin comment.
I had low levels and it makes a difference to take iron and change your diet. I think in her situation you need to think about a reallly varied diet, even if it is vegetarian.
The impact of my poor diet while I was studying was immense and some fairly simple changes can help (not saying it is a cure at all!!!). But it may take the edge of some symptoms.

I was diagnosed with this aged 17-19 then it just went. I'm thirty now and touch wood I've been fine.

It was horrible I really feel for your daughter.

@MissisBoote I'm in that group too

How terrible to read of the way doctors are treating your children. It's so frustrating when you just want someone to help.
We're 'lucky' that my dd gets really good treatment because she had cancer the doctors are on it with her and take her symptoms seriously. Any tests or scans or other consultants she needs to see her haematologist pushes it through but still I felt they didn't quite get it so I did my own research and treat her myself with things I think she needs.

The Facebook group that's linked is fantastic really knowledgeable people on there and good advice, I was able to treat my dd and get her to a stage that she can actually function quite well, she's still tired but not bedridden and her neurological symptoms have gone and her mental health is 1000 times better. However if she doesn't get an injection she fades quite quickly and the symptoms come back.

six Today's appointment sounds positive and the paediatrician sounds like he knows the risks of pushing through. Hopefully reassuring for you too that your DD is coping and building her resilience despite the challenges of the illness.

^I still feel that no one has (or can?) explain what has happened in dds body to cause this?^

In all honesty, I don't think you will ever find anyone who can explain what has happened or what the cause is. There is so much biological research going on at the moment; lots linking to a stalled immune system that's got stuck into overdrive and thinks the body is still ill, others where they think there's a problem with energy production at a cellular level. The problem is that many types of fatigue get lumped into the CFS banner, without them necessarily all having ME symptoms so it makes it challenging to research with so many different subtypes.

Hi 😊 thanks for all of the recent posts-so interesting.
How have you/your DC coped over Christmas and New Year? I have been wondering.

DD ‘lost’. Christmas Day and Boxing Day due to too much activity on the 23rd and 24th.
She has been ill most of the time and seems to be getting worse-I don’t know if it goes in cycles and can decline; etc?
We are using the wheelchair when out and about now as she is less and less able to walk any kind of distance.

We have a private specialist coming out on Thursday to do an assessment. I can’t wait to talk to her.

Anyone else got appointments coming up?

I forgot to wish you all a Happy New Year
I hope this year sees a return to better health for those suffering.

Happy new year to you too

Well done on getting through the festive season. It'll have been tough on your DD but hopefully she'll start to pick up a bit more now that things are quietening down and it's easier to get back onto a planned pacing routine. Remember - do a thing on one day then two days with no plans.

That's great that's she's using the wheelchair and whilst it might feel like a setback it's actually the best thing for her atm as it's conserving her vital energy. Be careful though that you don't have too many unnecessary trips out though as whilst she won't be using physical energy, it'll be draining her cognitively. Does she wear earplugs when she's out? I find them a massive help.

Some people find that the illness declines, whilst others can remain stable for years, or have longer periods of remission and then intermittent relapsing.

Good luck with tomorrow's appointment. Where did you find your specialist from?

Can you ask the GP to test for coeliac disease? My sister has it and this all sounds very similar to how she was before her diagnosis.

I’m an adult with CFS, and there lots of good advice on here, but I wanted to make a couple of observations.

Your description of Dd, involves lots of she was fine, then she did this, then she was really ill. This is what you need to avoid, the boom and bust. She needs to do little, and rest, even on the good days. At the moment she is continually triggering the post exertional malaise, and is as a result always Ill. I can’t advise reading up on spoon theory enough. She won’t improve until she works out where her limits are, and never, ever exceeds them. There are apps available for cfs and tracking symptoms which can help her work out where her “wall” is, and how to recognise it. The goal is to never reach the point of collapse, and in time, more and more can be achieved, as long as it is never rushed.

My second observation is more controversial, particularly with a child, but the only thing that has ever helped any of my symptoms, is cannabis. It removes the pain, the tremors, the spasms, and allows me to go out and do things which would otherwise be completely impossible. My symptoms are in many ways similar to MS, and cannabis has been shown to assist with that also. I would however be entirely cautious about giving cannabis to an adolescent. Perhaps try the legal cannabis oil that you can get in health food shops, it may not be as effective, but cannot hurt.

Sounds like M.E .. gave they explored that ?

Thanks for all of the new messages

Missis thanks for that info-I will ask her about earplugs,as she is becoming increasingly noise-averse.

I found the specialist through a friend who has CFS -the woman works in the NHS with adults with CFS,but in her private practice she also works with children.
How has Christmas been for you? How are you feeling?

Six I’m really sorry your DD has been poorly. The pale and brittle look is very familiar to me and it’s awful to see -when there’s nothing we can do.
Please keep us updated on the test results and how DD is doing.

First thanks for posting -DD has been tested for coeilac a few times and has had it ruled out.

Altogether I’m so appreciative of you posting,thank you.
Your observations make perfect sense and I’m so glad you drew my attention back to the ‘boom or bust’ pattern.
I will now be reading up on spoon theory and finding the apps.

Re: the cannabis-it has also been mentioned to me by a friend. Admittedly,I have a lot of reservations but I wouldn’t rule out the version form helath stores if I feel DD needs it.
How is your CFS at the moment?

The appointment is at half 10 tomorrow,so I will report back.
I’ve already spoken to the flu in the phone and she was amazing and gave me loads of advice. Fingers crossed.

Hi lego,

I’m not too bad at the moment, when I was first ill 6 years ago, I was bed bound for 8 months, I’m now working full time again.

I have a relapsing- remitting pattern, sometimes I’m well, and others not. At the moment I would say I’m managing about 90% of my normal life, with occasional blips, I had a day in work a few weeks ago where I went into involuntary spasms which was embarrassing, my colleagues know I am ill but don’t usually see it, I can usually get through the work day, and then flake out early evening. I manage work through avoiding certain things, like never using the stairs, and taking work from home days when needed.

I have had patches where I have been almost completely well, but I have learned never to ignore the illness, if I overdo things when well, I go straight back to being ill. The effects of one day’s overdoing things can last for months, and is never worth it.

Gp’s are useless in my experience, when they say they are exploring cfs diagnosis, this is nonsense, as there is no way to diagnose it other than to rule out everything else. No one knows what causes it, or how to treat it.

I was sent to a neurologist to rule out MS due to overlap of symptoms, and he said the best thing a doctor could say- he said there is something real wrong with you, I can see it and measure it, but I don’t know what it is. But it isn’t in your head. Find a good doctor, print off the nice guidelines, and go through them with a highlighter, marking everything they haven’t done or tried for your Dd. It’s too easy for them to shrug and do nothing, and ignore the problem, unless a fuss is made. Your Dd won’t have the energy to fuss, so do it for her. Never let them tell her it is psychological, the only time CAHMS should be anywhere near this, is to help her cope with the reality of her physical illness.

One other thing, I find emotional stress even more debilitating than physical, so avoiding that is just as important.

I use these earplugs - they're pricy but very effective. I wear them at home quite a bit too so other people don't need to tiptoe around so much.

www.amazon.co.uk/dp/B072XSHX32/ref=asc_df_B072XSHX3257840327/?hvlocphy=9045046&linkCode=df0&hvptwo&hvnetw=g&hvadid=310534034814&creative=22146&hvpone&hvlocint&creativeASIN=B072XSHX32&hvpos=1o2&hvdev=m&hvdvcmdl&hvqmt&tag=mumsnetforum-21&hvtargid=pla-350350076316&hvrand=2239342172812220080

I hope today's appointment went well and had given you and your dd some confidence in 'what next?...'