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

hd single your DD is getting about now with Harley 😊
Thanks-that is all such useful information.

I had words with my Mam yesterday-I mentioned the wheelchair and she was horrified. She said it would make DD lazy and would be a slippery slope. I almost cried with frustration and ended up having a bit of a go at her.

For reasons beyond our control,DD didn’t get to rest nearly as much as she needed to yesterday. By 9pm she was so white, it looked scary. She was curled up on the chair and said her headache was awful.
I’m expecting a tough day for her today.
It’s so upsetting to witness,isn’t it? 😔

so glad not ‘single’ 😊

I'm so sorry your daughter is going through this.

Just to share my experience, I had glandular fever at about 13 and was subsequently diagnosed with ME/CFS.

The symptoms were very similar to your daughter's.

I had extreme exhaustion. Was confined to the house. Could barely walk anywhere. My parents considered getting me a wheelchair at one point. My father had to carry me up the stairs to bed at night. My mother had to do basic things for me like wash and brush my hair.

I had a home tutor as I couldn't manage school.

I had very low blood pressure, was white as a sheet, had swollen glands, suffered with frequent, severe nose bleeds and experienced dizziness when standing or sitting too quickly.

The post exertion malaise that a previous poster mentioned is definitely a defining characteristic of this illness. Any exercise or exertion led to extreme exhaustion the next day.

If your daughter has the same thing my advice would be to rest as much as possible and avoid overdoing things.

It did take two or three years but I did go on to eventually make a full recovery and have had no further problems since.

I hope your daughter starts picking up soon.

The shitty ME team we had basically had the argument that using disability aids would encourage reliance on them, and so had a blanket approach to blocking their use.

But for my DD to have a stair-lift would have meant getting downstairs with help as opposed to not at all. A bath chair would have meant she could get in and out of the bath as opposed to me trying to lift/drag her in and out of bed-bath her. A wheelchair would have meant she could have been pushed to another room to sit on my bed and look at the view rather than lying in her own bed all the time. And even now that she is improving a wheelchair is the difference between doing some meaningful activities and then resting versus using ALL her energy to do a few suggested exercises in bed and then resting, and repeat....

I had to use a wheelchair after a serious accident for quite a while, and it is not an easier option than walking around. Trying to get anywhere when you have to think about where the chair will fit, see things in a shop when someone else is pushing you at their speed not yours, and you are at a child's height. Having to work out where the next dropped kerb is so you can actually get across a road. I could go on, a lot. Using a wheelchair is really frustrating compared to using a normal body. But it's a huge improvement to not being able to get around at all without making yourself so ill you can't function for hours, days or weeks.

Believe me, using a wheelchair does not make you lazy.
Feel free to share with your mam.

The point I was trying to make is that most people who use mobility aids end up doing a lot more that they would without the help they need, not less. Sorry, on a rant lol.

I would be looking very specifically at vitamin levels, both B12 and iron deficiency can cause a lot of issues.

And people are right about the "normal" level - ferritin for example has a normal range that starts at about 10, but really it needs to be 50 to stop some people experiencing some quite bad symptoms.... however other people are fine. My Ds had hair loss caused by low iron - but he was still within the normal range .

A private specialist was the best money we spent. However I would be looking very hard at nutrition levels

Looking at the symptoms below she may have all of of these - to correct it she would need lots of high strength suppliments for months before it begins to correct..... With DS it took at least 6 months....

Iron deficiency anemia signs and symptoms may include:
Extreme fatigue.
Weakness.
Pale skin.
Chest pain, fast heartbeat or shortness of breath.
Headache, dizziness or lightheadedness.
Cold hands and feet.
Inflammation or soreness of your tongue.
Brittle nails.

Symptoms of Vitamin B12 Deficiency
Weakness, tiredness, or lightheadedness.
Heart palpitations and shortness of breath.
Pale skin.
A smooth tongue.
Constipation, diarrhea, loss of appetite, or gas.
Nerve problems like numbness or tingling, muscle weakness, and problems walking.

Here are 8 signs and symptoms of vitamin D deficiency.
Getting Sick or Infected Often. Share on Pinterest. ...
Fatigue and Tiredness. Feeling tired can have many causes, and vitamin D deficiency may be one of them. ...
Bone and Back Pain. ...
Depression. ...
Impaired Wound Healing. ...
Bone Loss. ...
Hair Loss. ...
Muscle Pain.

five so glad you recovered,but it sounds awful. Back then,I expect there was even less understanding of it and definitely less support.

hd I’m exactly with you on how DD would do more with mobility aids. My mam’s attitude was as you described -as if DD would choose to be wheeled around and it would make her lazy 😡

ticking m going to push for some more bloods. She has one or two of the B12 and Vit D symptoms but has had high doses of both and my instinct is that there are other things going on that aren’t explained by some of the deficiencies mentioned.
It could be a perfect storm of all of her deficiencies ? We need answers though.
So pleased your DS got back on his feet-that was a long recovery.

I’m glad it’s helping you too six- it’s so isolating isn’t it?

We have seen DD’s symptoms peak and wane too- at the moment her sore throat and nausea are the worst for her.

I remember the pallor was definitely noticeable. Another girl in my year had it before me and I remember everyone saying how ill she looked.
When I did manage to get back to school for initially short managed periods, I had the same comments.
Another weird thing was my hair went very straight and only got its bounce and waviness back after I got better.

Honestly, I was dx with ME 11 years ago and I would make sure they look for every possible explanation. Make sure that all levels of vitamins etc are optimal, not just in normal range. Make sure they’ve checked her heart and other issues. Honestly, being diagnosed with this has been a nightmare as they just refuse to investigate anything and just say it’s ME.

I wouldn't listen to your mum about the wheelchair by the way. My mum had a lot of negative comments from relatives about how she should just make me go back to school.
They didn't understand how ill I was.

@tickingthebox what sort of specialist did you see? I need someone to look at various issues and help me get to optimal range, not just normal range!

Have they tested for low/high thyroid?Good luck. Persist till you get a diagnosis.

Sounds exactly like POTS caused by the HPV vaccine.

Unfortunately this reaction is not that rare.

If this linked to the HPV vaccines but dismissed as coincidental it’s VERY worrying given the number of similar stories that are heard of

Yet it’s said the vaccine is safe - but that is because side effects aren’t reported in the first place unless they occur within a few days

I will not be giving this vaccine to my kids

@legodisasterzone

We were referred to a dermatologist for the hair loss. NHS wait was 5 months so I went back to the gp for a private referral.

Bearing in mind I had a child who was going bald I thought the five month wait wasn’t acceptable really.

We saw the consultant twice (£395 per visit) and had two private prescriptions (£40each)- although you can go back to the go to get the prescriptions free.

We then went back to the nhs for our “first” appointment with the same consultant for the third appt and then a 4th discharge appt.

It took around 4 months for us to see anything getting better - ds was on iron and vitamin d . 6 months to see definite results.

You need to bear in mind that you need to also solve the reason for the vitamin deficiency (if that’s what it is) just giving vitamins otherwise may not be enough.

I didn't give the HPV vaccine to my daughter having developed me/CFS myself not long after having the flu vaccine. I was too concerned about the risk, especially as it is thought that there can be a genetic predisposition to me/CFS. Prior to getting ill I was never anti-vaccine.

Thanks for all the additional messages and food for thought. I’m taking notes on all of the points.

The HPV vaccine is new to me-DD actually started to get ill not long after having it. I hadn’t heard of a link 😔

Her pallor is dreadful-and I noticed tonight how much weight she’s lost in a short space of time. I need to be the squeaky wheel now.

I was diagnosed with M.E/CFS aged 16. I was never awful but had to do 6th form part time and feel I lost a lot of my teenage years. Happy to answer any questions/ give advice if I can

My dd developed PoTs at 7. She had been diagnosed with EDS at 3 and also pectus excavatum amd scoliosis
She was then diagnosed with CFS at 15
PCOS at 16
Anorexia and anxiety issues as well

PoTs and CFS are very similar. It’s hard sometimes to know what’s causing her symptoms
My dd has not had the hpv vaccine

Thanks Rachie that’s kind. Have you had any relapses and how long did it last originally?

Hedgehog how is your DD now?
My oldest DD is in recovery from anorexia and has anxiety and that is hard enough, without the additional issues your DD has. It sounds so difficult and I feel for you.

I am going to ask about PoTS too,as it’s come up a few times.

Please do look again at her B12 deficiency. I have pernicious anaemia and it's taken me a couple of years of twice-weekly injections to get back to nearing normal. The anti- intrinsic factor antibody test is not specific enough to rule it out. Basically it's something like 40% of people with PA will not show a positive result on that test. If it's positive it shows PA almost definitely but a negative test doesn't mean you don't have it. B12 deficiency attacks your nervous system so there's an enormous range of symptoms. Once you've had some injections though you have 'surplus' B12 in your blood (inactive B12) and blood test levels should not be taken as 'real' levels until you've been off supplementation for 3-4 months.

If you think your DD would be able to cope with this, I'd recommend the 2-day CPET (exercise test) which deliberately stresses the energy systems to measure the body's response to this. We got it done in a sports lab at the university for £100 and it was worth every penny. That said, it took 2.5 years before DD was in a position to be able to do it as she had to exercise on a bike to exhaustion (in reality only about 5 mins) and then go back the next day and do it again.

But in DD's case we were able to prove she suffered from post exertion malaise, and therefore had M.E. The results showed that her anaerobic threshold (which I explain to people as simply her maximum energy level) reduced by 42% on day two of the test just because she'd used up all her energy the day before. This puts her in the moderate-severe category of M.E. Her paediatrician accepted these results and that it showed that graded exercise therapy was completely inappropriate for her.

I think once you have that information, you can understand much more easily why rest, rest and more rest is the key to getting better from M.E, why using a wheelchair to conserve energy is a good idea and why pushing through and exercising your way to recovery is never going to work. It helps a lot to make people who don't understand shut up too.

There's also a really helpful parents of children with M.E. group on FB if you can join that. Lots of helpful info and support for us parents who are living day-to-day with our DC with M.E and venting about the endless battles we have trying to get recognition and services for them. Lots of DD who are 14 too. You don't need to have a diagnosis to join up.