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

Thanks Missis-DD is resisting using the wheelchair,so I told her about your post.
Her world is far too small these days.

Six I’m sorry it’s impacting on the rest of your family too. Our oldest DD suffers from anxiety and that’s why it’s so important we can get out of the house - she has been going stir crazy when we are all cooped up together.

The earlier paediatrician appointment we managed to secure has been cancelled -apparently we are too far out of their area
It really is 2 steps forward and 3 back.
It’s exhusting me,ironically.

It must be hard to try and get a balance for the other children in your families.

I know it took me ages to adapt to thinking about what we could do 'together' as a family as we could no longer go for bike rides, walks by the beach etc. We started playing board games as a way to have quality time together. No phones etc. Sometimes I found the rules too complicated but was just happy to watch and learn that way.

I used the wheelchair for the first time tonight at parents evening. Thank goodness I did as I'm having a terrible week health-wise and the amount of times we had to go up and down the corridor, there's no way I would have been able to make it through all of the appointments and would have been left crawling back to the car on my hands and knees. No one wants to see that

The thought of using a wheelchair was so hard for me to overcome because it represented everything I couldn't do, but once I reframed it in my mind, it's given me my life back. Over the summer I've been to the beach a few times, London for a day out, country parks, even managed a theme park (term time only though - couldn't face that in the school holidays. None of that would have been possible without it.

Gutted that the paediatricians appt has been cancelled. Are they re-referring you? Or just leaving you to get on with it?

Missis, so glad the wheelchair helped you to get some life back-I love these positive stories.
Sorry you have had a bad week though-how are you feeling today?

Did used the wheelchair! We went to a shopping centre and she’s resisted until she got tired. It was a revelation for her and she said she would do it again!!

On a less positive note,she is really poorly today. She had friends over last night, which was so lovely, but is paying the price today.

I could literally weep for her-she looks so ill and has a headache,a temperature and shooting pains.
She’s just fallen asleep again.

What a horrible bastard of an illness this is! ( sorry for swearing but needs must!)

That's great that she used the wheelchair! Huge high five from me to her

Next time, see if she'll use it straight away rather than waiting til she gets tired (that's when the damage has already been done) She'll be amazed at how much it limits her feeling rough the next day.

Don't apologise for swearing - it's a fucking awful illness and no one knows the reality of it unless you've had it yourself, or lived with someone with it, as you only really see people with me/CFS when they're having 'better days'. You don't see them collapse the moment they get home or back to their car. As we know it affects you 24 hours a day, seven days a week.

Lovely that her friends are sticking by her too - it's worth the payback for her, to see her friends; it's just remembering to plan the down time in the day(s) after. It might be worth her sharing those Action for ME advice sheets with her friends so they really understand her limitations. Did I link then before? I can't remember...

Thanks Missis-I told DD.
I also spoke to her closet friend about it (just in a casual conversation) and gave DD the link to share.

So,is it better to get her to go into the wheelchair straight away? Do I let her walk for short periods or should she stay in the chair?
Sorry for all the questions -so hard to know what to do!

The aim is to minimise the post exertional malaise (and reduce boom and bust) so if she's having a better day and is going to be out for longer than 5 mins I'd say use the wheelchair straightaway.

On a better day she may be able to manage a short trip - say popping to one smaller shop (not a massive supermarket) and then if she's ok and feels she has enough energy then let her walk. It is just a matter of trial and error though and she'll soon work out what works for her.

Don't be afraid that she's going to become deconditioned etc if she uses the wheelchair too much. She'll be more active at home if she's not recovering from walking too much when she's out. It's human instinct to do stuff when we feel better so she'll adapt when she's got the energy.

If I had someone to push me in the wheelchair every time I went into town I'd absolutely use it every time rather than suffering from the fallout for the next few days at home.

I think as well it's important to remember that's it's not just the physical effort of being out, but also the sensory overload from lights, noise, too many people moving around, music, the car journey etc. So by using the wheelchair it's already minimising the impact from the physical exertion.

Does that help?

Missis you’ve just clarified what I needed to know-thanks so much for taking the time to to respond to my many questions 😁

At the moment,she gets badly affected from just a 5 minute walk so we know that it’s too much for her right now.

I would push you round town if we were geographically close 😊

Hi - me again

Another shot without considering is B12.

Watch b12deficiency.info/films especially on deficiency and testing

Has she been veggie or not eat a lot of red meat/eggs?

No problem Lego only too happy to help based on what I've learnt over the last five years and what works for me.

One thing I that popped into my head, was that it's very common for periods to exasperate all the symptoms of me/cfs so if your daughter had regular periods to not go too much in the days before her period is due. I know that I'm pretty much stuck in bed for those days. Even after all this time, I'm still wondering why I feel worse than normal and then realise my period's due.

Thanks called - she had a loading dose of B12 as she was deficient and we now give her a high dose daily oral spray.

Missis so funny you should mention periods-DD was so ill on Friday that I was worried sick. Her period started the next morning and she was really poorly on the Sat and Sun too. So I need to be aware of that-tha is for another great tip!

Six sorry your DD isn’t great. I totally get what you mean about barely even moving round the house-DD is the same.
Let us know how you get on with he paediatrician and I will keep everything crossed for a better appointment this time!
How are you? It’s really draining,isn’t it?

DD used a wheelchair again today- I took her for a walk round the park when we visited my parents. She seems fine with it now and I felt better that she was getting some fresh air.

I still feel lousy tbh,but I know I’ve been doing too much. Plus,DH has ASD and has been having a rough time,so I’ve had to look after him too and it’s been hard to keep the plates spinning.
Hopefully my meds will kick in soon and I will stop yawning constantly!!

You can get kefir grains from Dr myhill. Instruction on Google about how to make it with organic milk or dairy free alternatives.

www.salesatdrmyhill.co.uk/kefir-culture---freeze-dried---special-offer-order-2-and-get-the-second-half-price-or-order-3-and-get-the-third-free-56-p.asp

Once you start making it at home they start multiplying so much that you'll be giving them away

That's great news that your daughter is trying the wheelchair out more. They more she sees the benefits, the better.

Wishing you a successful paediatricians appt six

Last tip of the day - try and encourage cutting out caffeine from your daughter's diets. It'll stop them from living off false energy and triggering pem.

Shattered atm but will hopefully be back with more energy.

Maybe get her B12 retested? If she was deficient then injections might be hugely beneficial

Kefir is great but also at least 12 billion in a probiotic capsule daily might really help. Need to be taken with food

Missis how are you feeling now?
How’s your DD Six?

Called good idea-but I will wait for the pediatrician now, as I’ve lost all faith in you the GPs we have seen.

DD looks worse all the time -so pale with bags and black circles under her eyes.
I’m trying to organise Christmas so that she gets enough rest time,but it’s challenging!
Luckily our families are really understanding.

lego oral doses of b12 will make no difference if the deficiency is because she can't absorb it, this is why the treatment is injections.

Petulia thanks, I didn’t realise that. She has had a loading dose of injections.
How do we know if she isn’t absorbing it?

I'm absolutely shattered. I went to pick up my prescription this morning, but apparently I picked it up last week. I have zero recollection of doing this and no idea where the prescription could be Damn the brain fog.

I haven't properly adjusted my brain to the fact that I need to be in bed as much as possible, and trying to organise Christmas, school stuff, emergency house repairs etc is taking its toll.

Luckily I have zero plans over the weekend so will be in bed as much as possible.

I though oral spray was reasonably effective as it enters the blood stream rather than through the gut. No substitute for injections though. There's a brilliant Facebook group that has loads of info on diagnosis, treatment guidelines and even sourcing your own b12 and self injecting. Will find a link.

m.facebook.com/groups/174928999276739

It's a closed group, but lots of really useful info on there about b12 deficiency.

I'm vegetarian & eat tons of dairy to make sure I get enough B12 etc. I did go vegan for a while but felt really unwell, my hair went really thin. If I was lactose intolerant I'd probably have to eat meat unfortunately, for the nutrients.
Sorry OP I'm ASD & know how stubborn we can be around food!
I had all the symptoms of 'CFS' about 4 years ago, I know how poor thyroid diagnosis is & suspected it was really that, successfully self treated with mega doses of iodine & it was sorted, no more CFS symptoms.

Eggs aren't dairy, good source of b vitamins. I'd Also recommend nutritional yeast flakes ( Sari Foods), I have a heaped tablespoon daily.

MissisBoote, I'm in that group too

lego, your DD should have been tested for anti-intrinsic factor antibodies and coeliac disease to check if those are the cause of her deficiency. Loading doses are a start, but regular, frequent injections of b12 are usually necessary for ages to try and combat the damage done before diagnosis. I think I said earlier on I'd been injecting twice-weekly for about 2 years before I got back to a relatively 'normal' state. Please do join the Facebook group to find out more info.

petulia