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

Meant to add that DD has no temperature control either. Most days I have to tell her what clothes are appropriate as she'll wear a t-shirt when it's 5 degrees or a hoody when it's 25 degrees. She doesn't seem to notice!

@Sixcupsoftea I'm sorry your DD isn't improving. I know how hard that is as I can be optimistic when I see change and I find it very hard to bear when DD goes through a setback or seems to plateau. I have found improvement extremely slow and DD gains around a hour of functioning energy per year, so often we can only tell by comparing it to the year before.

But hold in your heart that recovery rates are much higher in children. A study of around 700 children showed that the average duration of illness of those who report having “recovered” was 4–5 years with a range from 1 to 15 years. By 5 years, 60% reported recovery, and by 12 years, 88% reported recovery (taken from the paediatric primer I linked to earlier in the thread).

Re the HPV I know there's a lot of anecdotal evidence supporting a link and I have a friend who is very involved with the campaign against it. All I know is that there were approx 135 girls in DD's year who had the HPV and only DD has ME. She also developed it 12 months after having it, so I don't believe there is a connection in our case.

And I really hate any suggestion that a vaccination which cannot be taken back should be the cause of any long-term illness. Parents have enough to bear dealing with a DC with ME without being made to feel responsible because they vaccinated their DC. It's not going to change the future for DC who have ME nor inform how to manage the illness, so imo it's really unhelpful and can be very upsetting for some parents.

six I believe the body can always recover when given what it needs. Hang in there.

I had mild CFS in my late twenties and recovered through an odd combination of rest, fresh beetroot juice and yoga! Very anecdotal I know.

bonnes I completely disagree with you. This isn’t about blame. It’s about assessing risk and we shouldn’t ignore that just because people might feel guilty (which they absolutely should not feel). But we need a proper assessment of the risks of the vaccine and if that is 1 in a 1000, then let parents decide and NOT the medical profession.

The vaccine hasn’t been shown to reduce cancer rates either!!!!

If she is on the ASD pathway I'd strongly suggest POTS and possibly hypermobility too as they are all linked. ASD is probably making her rigid about her diet and that won't help.

I'm 40s and only just diagnosed with all 3 - it's been a lifechanger. However the hypermobility came from private physio after I kept twisting my ankle, ASD my own realisation after years of mental health probs and POTS from paying for private cardiologist.

If you are struggling with GP, this is worth spending money on if you can as controlling my blood pressure and dizziness has made the world of difference to me after years of falling over and fainting and being written off as emotional or attention-seeking

Called But there's no point assessing the risk here if the vaccine has already been given. Discuss it on other threads but not on this one where young girls are already ill and it'll make no difference at all. That has no place here imo.

Hi OP I'm sorry to read about your DD's illness but I have to say you sound like an incredible mum 💐

I wondered if she is in pain? Any joint of muscle pain?

Every symptom you mention is a symptom of fibromyalgia which both Myself and my mum suffer with. The victim D deficiency, fatigue and temperature control scream fibro. It takes years to get a diagnosis in most cases because it does show on bloods and has so many symptoms it's often Mis diagnosed.

I hope you get to the bottom of this soon and you'd dd can start to recover xx

Anna, can I ask you about the hypermobility please? Our DD has really obvious over-extension of joints and also a degree of sclerosis - but these things were sort of mentioned by drs as a casual observance as part of other things. No real suggestion if anything could be done. She was referred to a physio, but it seems to be just general physio and while a couple of things helped a bit (mainly becoming more aware of how she moves since the pain and overextension have led to her using her body really awkwardly which only makes things worse) but the last time she went she was given something to do which left her in severe pain and immobile for 3 weeks. She phoned and told them and said she won't be doing that again and won't be going back till she feels recovered.

Hi-I haven’t disappeared, just had a manic morning!
Will be back tonight to reply properly 😊

hdh747 I went through a phase of falling over a lot. Basically my ankles go over all the time. I would never have thought I was hypermobile - I can't touch my toes or anything like that but at medical school learning anatomy it did turn out I had some hypermobile joints. I didn't make anything of it.

Whenever we go anywhere, I complain my feet hurt A LOT. Any standing around eg going to museums is governed by how much my feet hurt. Eventually I found out about gait analysis and saw a podiatrist who did this who told me my arches collapsed which was why they hurt so much - a bit more evidence.

Finally I really sprained my ankle. By this time I'd been doing it so much, I already had strapping ready to put on it straight away. I went to a physio and the private physio in my little village used to be head of physio at the Royal Ballet. She said the diagnosis was obvious. I got some exercises to do, haven't sprained my ankles since and wear v boring shoes.

In terms of the POTS, I tried the GP route, it became apparent that I was getting nowhere and booked to see a specialist privately. He made the diagnosis in one visit and the advice I was given just at that one visit seems to have stopped my dizziness and fainting fullstop. Also, without feeling crap all the time, my anxiety is a lot better.

Thanks Anna, that sounds a lot like my DD. Her ankles are particularly weak and always turning over. Her elbows and knees actually look the worst, they really obviously bend back the wrong way. She has to sleep with her knees supported from underneath and with straps on her elbows and knees or she wakes up in even worse pain. But those are measures she started on advice from friends, she's had no official medical advice.
We're going to have to look more deeply into this and see if we can get more effective treatment. She saw a rheumotologist who sort of noted it but didn't actually give us any diagnosis and only suggested the general physio.

Sixcupsoftea I was told to take 2 teaspoons of salt every morning (yum!), I was already drinking 3 litres of water a day but to do that, and wear Class 2 support tights (not stockings) - sexy

Also to do exercise which mainly consists of fidgeting when sitting down, crossing legs is good, squeezing muscles in your bum when standing. Proper exercise when not dizzy would be recumbent bike - not got round to this yet.

If that didn't work there was the offer of medication but he was keen for me to do everything else and avoid medication.

The salt is making a huge difference - the first day I took it work colleagues actually stopped and said how well I looked. Today I forgot to do it and am currently lying down after having got dizzy Also the squeezing bum muscles is a lot more effective than the toe wiggling I used to do.

I didn't want to have salt unless medically advised to do so although I had read about it on POTS websites - so please don't take it as medical advice for your situation, just that something genuinely can be done.

The doctor advised to try it in cordial or orange juice - it is vile in orange juice! Cordial it is bearable and TBH now I do it everyday, it bothers me less. The first day I thought I was being poisoned, now it's fine.

I really need to do the exercise though. I am massively unfit. I tried the 30-day shred once - either I was nearly passing out as my heart rate was soaring or my knees were hurting from the hypermobility. Now I know - no high impact, no arms over my head.

Anna thanks for replying.
I’m definitely mentioning PoTS to her GP. My oldest DD is and I don’t think DD2 has any of the signs but it’s worth bearing in mind.

Sorry you’ve had so much to deal with,all together.

six I totally get your worry and frustration and fear and my DD hasn’t been suffering anywhere near as long as yours has.

mouse thanks so much for saying that-it means a lot
She does have pain,mainly in her throat and back and sometimes legs. She says none of the pain relief she’s taken helps.
Sorry you have been suffering too.

We just went to the cinema as both DDs were desperate to see Bohemian Rhapsody (amazing btw!!)
I made sure DD rested all day yesterday and all morning. She came out white as ghost and said her legs were shaking and like jelly,her throat was really sore and she had felt sick and dizzy all the way through.

I fully expect her to crash tomorrow. I feel so frustrated for her.

On my god no bonne. If we can even stop one more child suffering this way then the discussion is worth it.

This vaccine clearly causes devatating side effects in a very small minority and it must, MUST be discussed.

There is a ghastly FB memoir doing the rounds about saying “sorry” to your daughter when she gets cervical cancer because you refused the vaccine. It’s not even been shown to reduce cancer risks yet!!! It’s a revolting way to pressurise people

I had the symptoms you describe your daughter having. I didn't have the HPV vaccination.

No link has been found between the vaccine and POTS. Please read this as a counterbalance to some of the unsubstantiated claims made on here: http://www.who.int/vaccinesafety/committee/topics/hpv/Junee_2017/en/

That’s because the side effects don’t manifest straight away. How many cases even on here and GPs say it’s coincidental and therefore not reported? If cases are not reported then of course no “link” will be found. Research results are only as good as the research itself

Because research, such as I linked to, shows that it IS coincidental

Because survival the cases and problems aren’t being reported at all under the reporting mechanism! So the studies don’t pick up that these girls become ill.

Read the studies and how they are done. Even the studies done on safety before the vaccine was launched was utterly defective

A few things spring to mind. One is that it doesn't sound like she is having enough b12 injections? Which I believe should be as frequent as every other day initially. Go over to the Pernicious Anaemia website and onto their Health Unlocked forum for advice. I don't think you can rule out PA just because she is vegetarian although that may well be the cause.

What are her vitamin D levels? They should really be about 100. If any lower they may still be causing symptoms. If she was deficient she should have been given a very high dose for a period (loading doses) and then a maintenance dose. Is this what happened?

Has anyone checked her ferritin? Anything under 50 can be symptomatic. You can have low ferritin but not be anaemic (so full blood count will be normal) and still have symptoms.

What about her folate?

Has her thyroid been properly checked? Low vitamins can be caused by thyroid issues. To properly rule out thyroid problems her TSH, T4, T3 and thyroid antibodies need to be checked. I would want thyroid issues definitely ruled out before accepting a CFS diagnosis. Your GP may well have just checked her TSH which won't rule out Central hypothyroidism for example. If GP won't test these you can test privately. I've used Blue Horizon and Medichecks in the past.

If you want any more details on any of the above let me know.

Careful of supplementing iodine as this can worsen autoimmune conditions and cause/worsen thyroid problems. You shouldn't supplement iodine at all unless you know you are definitely deficient.

www.btf-thyroid.org/projects/iodine/249-iodine-faq