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

POTS isn't new. It's newly recognised and not fully hit mainstream in recognising how it's detected and treated but some of us were busy having classic symptoms of it in the 90s.

In fact my DM had all the symptoms of it, including the onset of puberty back in the 50s.

Minimum the only things that flagged up as being low were Vit D (been in a heavy loading dose for 6 weeks and now on high maintenance dose) and B12. She had 5 injections over 2 weeks and his for another one after Christmas.

I am going to ask for repeat bloods anyway but luckily,our GP always were on the side of caution and if a reading is low but not in ‘deficiency zone’ he tends to medicate.

Poor DD is in a bad way today,after the cinema outing yesterday. She looks so ill and has been slumped on the sofa since waking.
I’ve managed to get her in the bath,but need to supervise now as she feels so dizzy.
The waiting around is going to be horrendous 😔

Hope everyone else is having a better start to the week 😊

lego I said this earlier in the thread but low B12 will NOT be fixed by 5 loading doses. It can take years of very frequent injections to get back to normal before it's sufficient to move onto less frequent jabs. B12 deficiency is very serious and affects your whole nervous system. A blood test now will not give you an accurate picture of her levels unless the GP can be persuaded to do an active B12 test (usually they won't). Levels in this country are set very low in any case - around 120-180 is usually the borderline for deficiency but symptoms can be present if you are below 500ish.

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.

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

Absolutely, the woman who wrote the link I have added collaborates with the BTF. She also recently did a good programme on radio 4 about it.

The op's daughter is lactose intolerant and I think vegetarian? So no fish. It's not something commonly tested. There are deficiencies in vegans in the uk who do not supplement and lots of research around teen girls being iodine deficient due to various restrictive diets (of important due to need for iodine in early stages of foetal developmental) Better to check tsh and t4 however.

A Basic multivitamin which includes 100% iodine will only help; the body can cope with more than this guidance.

I agree hypermobility really can be a big issue. If I am slightly underactive I feel extremely unwell and go down hill (very weak) quickly due to hypermobility as low thyroid levels weaken muscles. I don't have much to loose. Adding in low vit d and 12 etc, it's a recipe for cfs.

@legodisasterzone it's worth nothing that it can take 3 mo or more to recover strength from deficiencies. Do find out what the thyroid results were as normal has a wide range.

I’ve made notes of these points for when we see the paediatrician.
Half an hour ago her appointment came through the door- 11 Feb! 😭😔

How are we going to keep going like until then?!

You will all get through it.

Scale back on all but non essential activity. Even personal care needs to be paced so only having a bath on a day when nothing else is going on. Same with hair washing. And not doing the two together on the same day as that'll be too much.

Plan a quiet Christmas if at all possible and give the paediatricians secretary a call to say you can attend any cancellation appointments.

Thank you Missis - I appreciate that.

I had already made a note on my phone to ring the secretary tomorrow 😊 and I will be phoning every week.

I have had to let DD sleep today- we always try to avoid it,but she couldn’t keep her eyes open. It’s so heartbreaking and I take my hat off to everyone who is dealing with it or has got through it.

It's ok for her to sleep. When I was first ill I slept every afternoon. I was doing mornings at work, sleeping as soon as I got in and then rushing out to pick up the DC from childcare, dinner and back to bed again. No wonder I didn't recover.

Now a few years on after stopping work I only sleep the days after really overdoing it. On regular days I try to avoid napping any later than 3pm as I know it'll have a knock on affect on my sleep later that evening. Just resting in the quiet in the day gives me enough energy to be able to help the DC with their homework do dinner etc and be a normal mum.

Some of the mindfulness meditations can be good at helping you feel properly rested. Lots on YouTube. Or yogic breathing. Anything like that, that helps bring down adrenaline will help.

I meant to add, at secondary school there were three people in my year who also had me/CFS/postviral CFS and they've all made a full recovery and lived normal lives.

Ah thanks for the positive stories -tbh I’m finding it terrifying to witness.

I just came in from an exercise class and she looks so ill and has a temp. I’ve given her Calpol and she’s gone to lie on her bed. This has been a really bad day.

You have done so well getting control of your own illness and I’m so grateful for the moral support and positivity -It’s a lonely place.

There is plenty of hope. My favourite hopeful story is this:

There is a person who had severe M.E. from the age of 10. The first years were spent tube-fed, they were that bad! No formal education for 12 years. At 22 this person started some OU courses and a few years later went to Cambridge. Completely recovered and no trace of M.E.! Their mother is my MIL's GP.

Aw Bonnes that is a lovely story and so wonderful that the person has a happy ending.
I need to keep it in mind -thankyou for sharing 😊

www.drmyhill.co.uk/wiki/Summary_of_my_approach_for_CFS_/_ME_sufferers.

Dr Myhill is a private GP who works in Wales she doesn't often take on new patients but do read her website. (Including the GMC trial info so you have full information..)

I would suggest Folate not folic acid and see if you can get her stared on some fermented foods... water kefir, kombucha, sauerkraut. . If you put a shout out locally you will find someone who has got some kefir grains or kombucha skoby to share. I will PM you with some info on how to do this and why it's good.

You can buy kefir in Sainsbury's these days!

Yes survival but not water kefir.. plus it's cheaper to make your own!!!

Kefir in milk is usually ok, as the fermentation kills off most of the lactose

I have CFS renders me bedbound and using a wheelchair.

The issue with CFS is it was classified within psychiatry as a somatic disorder and despite studies, evidence refuting it many, many medics still see it as a MH problem. It's now been reclassified away from psych, but labels stick. There are some very powerful people who still promote CFS as mental health. Go google Judy Mikovits, and get her book Plague too. Your eyes will be opened. The stigma surrounding CFS is overwhelming.

Oh. While you're googling, check CFS. and CBT: CFS and GET. They do not work, are contraindicated and can make things significantly worse.

Feel free to PM if I can help with anything. Best wishes to the children mentioned going through this.

Insist on bloods for Lyme disease and AChR (Myasthenia Gravis). AChR bloods are terribly insensitive, as are all M.G tests, but you need it ruled out. There are lots of people walking around with it misdiagnosed and it can be very nasty.

And hi @CFSKate , wonderful to see you're still around :)

Sorry for chain posting. @legodisasterzone has she been given gabapentin or pregabalin yet?

https://www.amazon.co.uk/Diagnosis-Treatment-Chronic-Syndrome-Encephalitis-ebook/dp/B01N9QGN7Z/ref=sr11_1?ie=UTF8&qid=1542737231&sr=8-1&keywords=sarah+myhill

Get this book also.

@legodisasterzone what were her ferritin levels?

As other people have said, you need continuous high dosing of vitamins to get them "back to normal"

It took 6 months to get Ds's Iron and Vit D back to normal, and that was with him being "cured" of the issue that caused the deficiency in the first place.

Thanks for the recent posts -I’ve kind of got lost off with who I’ve replied to,so sorry!! (feeling unwell today)

I have taken note of all of the suggestions and thoughts though and will be haveing a good read of the links.

ticking the said her Ferrari’s levels were fine but I’m arranging to get all of her results so I can have a good look.

Am I doing the wrong thing in this instance? DD is home educated and I attempted some maths with her today. She managed 20 minutes and wasn’t too bad,so I sent her to rest.

When we attempted a bit of English work half an hour later,she couldn’t focus or think straight and was yawning continually and looked awful. I think I attempted too much-or is that normal when she does any activity?
TIA

I think that's too much.

Go for one thing on a good day or leave a good three or four hours in between before you attempt a second thing of the same type of activity. No longer than 15 mins on e activity until she's started to show some improvement.

A good guideline is for your daughter to only do 60% of what she thinks she's capable of. Once she's started to feel tired, she's already too tired and it will have an impact on the post exertional malaise. The key is stopping activities before she starts to feel tired iyswim.

I can normally only manage one type of activity a day. Mental activity is just as exhausting as physical.

Do nothing on a bad day. There's no point as her brain won't be able to learn.

Thanks Missis- you’ve confirmed what I thought and given me some good guidance to follow there.
Thanks for your advice.
I definitely messed up there! She’s actually asleep now,but am letting her nap as she is seeing some friends later.