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

OP you don't need to make an appointment to see the results. You are entitled to copies of them which you can request from the receptionist. :)

5 injections over 2 weeks sounds like loading injections to get her levels up but not enough to reverse the deficiency, though I'm no expert.

If you get the copies feel free to post them here.

calledyou I am DESPERATE for her to improve her diet. She is also on the ASD pathway and has a lot of sensory issues around food. I’m also vegetarian, but both DDs have made the choice independently.
I have actually asked her, but I do understand why she can’t face meat.
Someone else mentioned magnesium -I need to get some ASAP.

AGHH I didn’t realise that,I ill ring them.

I’m a bit concerned that we will be ‘fobbed off’ with a Vit B12 deficiency -she has a few of those symptoms,but not many and loads of other symptoms that don’t fit.

All I want is to know what we are dealing with so i can work put a plan to help her.
I must admit to being really disappointed in my usually fantastic GP. He seems out of his depth tbh,even though he was the one to initially suggest CFS.

Does she have symptoms pointing toward a particular system - like loose stools, bleeding, swollen joints etc. Apart from low levels which could be dietary are there any other blood test abnormalities?

six I agree with you about the colour-DD is so pale and never has any colour in her cheeks.
I wonder if a hands off approach is how most medics handle it?
We haven’t had more than the initial appointments yet,but DD hates them and usually refuses to speak and finds them draining.

nomore nothing really specific-main things are exhaustion,sore throar,headaches,sleep problems and brain fog.
She has a lactose intolerance and some stomach issues but that all seems pretty stable atm.

Oh and I did a self-referral to OT today.
They’ve been great with other issues DD has had in the past ,so it can’t hurt.
I’m trying to throw as much at it as I can!

Has she had high dose vitamin D

She has -she takes her last dose on Fri and then goes onto a maintenance dose of 40mcg

It does sound very much like CFS, but there are many other illnesses that others have mentioned that have similar symptoms.

Re vit D I'd increase her daily amount to 3000iu a day as this will get her levels up quicker.

Perhaps contact the Tymes Trust - a charity for young people/children with me. They might be able to help guide you.

www.tymestrust.org

As an adult with me/CFS, my most important piece of advice would be for your daughter to rest as much as possible and not push herself to do more than she thinks she's able to. Easier said that since I know.

I know other children have had some symptom relief on nortriptyline/amytriptaline when they have pain as a symptom. It also gives you a better quality of sleep so your body is able to start to repair itself.

If possible use a wheelchair when being out as this will save energy and limit the impact of the Post Exertional Malaise (the bone crushing exhaustion that comes after doing anything). The red cross hires wheelchairs out or you might have a local charity that does short term loans.

Just reread your op and saw that she's being referred to cahms. Is this for CFS or mental health issues relating to the illness? Be aware that there are massive concerns with graded exercise therapy.

I'd ask your GP to refer her to a CFS service. Some areas have specialist children/young people's service.

Have you looked in to pernicious anaemia? I was diagnosed in my 20's with many of the same symptoms, I was always ill as my immune system was so weak.
It is hard to get diagnosed as gps are Clinton the disease but If it is this then I would say she needs fortnightly injections of vitamin B12 (like myself). Get her some folic acid & vitamin d tablets too
Going undiagnosed can lead to permanent nerve damage & even death, & unfortunately with NHS you really need to push to get referred to a haematologist to get a diagnosis.
Pernicious anaemia is for life, there is not a quick fix, injections for life (she'll get use to it) so she may want to learn to self inject.

Good luck, hope she gets well soon

Hi. I'm so sorry. What's her dairy intake like? Was thyroid checked?

My dd has gone through periods like this and I believe it is stress and anxiety related. She is asd too, and veggie. She's bad again at the moment and struggling to balance university and life (she lives at home as moving away wasn't a realistic option). Oddly it may sound I make her get outside, mostly the 1 miles loop I walk the dog on but I find the less she does, the less she can do. She's sleeping on the sofa now, hardly normal for a young adult. We have the drs next week for blood tests - she still wants me there as she clams up when the gp talks to her.

As I say, it's in waves - oddly working full time last year she was actually better. My friends dd has recurring cfs and does graduated exercise so I'm using the same approach just in case

My daughter has severe CFS, fibromyalgia, and has weak overextended joints and problems with fluctuating blood pressure, (the latter two are implicated in ehlers danlos and potts apprarently but she hasn't been diagnosed with those. She started with this while in college and has spent the best part of the last decade bed-bound and in extreme pain. At the beginning of this year she started seeing a functionalist nutritionalist who specialises in these conditions and under her guidance has followed a specific diet and supplement programme. Whilst she has a very long way to go she can now take a few steps and can get around in an electric wheelchair. She now has a social life, albeit that she has to spend a lot of time resting after every social event. She can now do hobbies like knitting in bed and chat with friends on her computer. For 10 years she could barely do anything. She is still on strong pain medication but is finally finding the pain tolerable on the medication, wheras before it only took the edge off.
Be aware that nice guidelines for dealing with ME and CFS are considered by many to be out of date, and by some to be dangerous. She followed the advice of the local ME expert team a couple of years ago and it landed her in hospital, and it was really frightening.
My advice would be to get to know as many people in the same boat as possible. My DD has a whole network of 'spoonie' friends (google spoon theory) that have been an absolute life-line in terms of support and advice. Most of the stuff that seems to be helping people seems to be from alternative sources.
If you have any specific problem along the way, we, and I'm sure many mumnetters in similar situations will have some handy day to day tips.
eg. For the magnesium my DD finds a spray or epsom salts in the bath work best. Often the problem is one of absorption rather than poor diet for many nutrients.

forums.phoenixrising.me/index.php

www.investinme.org/Documents/Guidelines/Myalgic%20Encephalomyelitis%20International%20Consensus%20Primer%20-2012-11-26.pdf

www.omf.ngo/2018/04/04/rbc-shape-rbc-deformability/

www.omf.ngo/2017/10/19/treating-autism-and-mecfs-could-one-drug-do-both/

It is utterly terrifying to have a chronically sick child-you never knew your capacity to worry was so enormous! My baby had failure to thrive because his lungs were so underdeveloped as a preemie. In/out hospitals for years. Eventually he stabilized after a feeding tube was placed. I’m sending you hugs and love for you and your daughter.

Thank you SO much for all of the posts and advice-I appreciate it so much and will try to respond to you all.

missis sorry you are going through it too. How long have you had your diagnosis?
I appreciate the first -hand advice.
A couple of people have mentioned a wheelchair to me. If I’m being totally honest,I know she needs it so she can get out and about,but without a diagnosis yet,I’m worried that ‘professionals’ will think I’m doing something wrong. Silly,I know 🙄

Oh and I’m not at all happy about CAMHS handling this-the GP said they deal with the diagnosis?
We’ve had very mixed experiences with them in the past and I am very sceptical and cautious around them.

boxing they tested for pernicious anaemia and ruled it out -DD doesn’t h e the Intrinsic Factor. Thanks for the info though.
I bought her folic acid and she is on high doses of Vit D and they said she will get another B12 injection in a few weeks.

Neoro thyroid was normal. Her dairy intake is terrible-she’s lactose intolerant and struggles with the substitutes,despite my best efforts!!

annie so sorry your DD is suffering too- sounds worrying.
I originally tried to get DD to do short walks etc in case it ‘woke her up’ if that makes sense? However,it became apparent that that wasn’t the way to go with her-xercise makes her for worse.
Hope your DD feels better soon.

hdh your poor DD-and poor you!
That all sounds so worrying and scary and I really hope her recovery continues.
Your post was so helpful and it certainly helps to hear from people who are in the same boat. I will try the ideas you mentioned.
Can I ask you at what point you introduced a wheelchair?

CFSKate thank you for the links-I will have a look in a little while.

Older your poor baby. That sounds really traumatic and I hope he’s well now? Thanks for the kind words and support-it is indeed so worrying and I feel constantly sick tbh 😔

You could be describing me at 16 here. I was diagnosed with 'post viral ME' and also put on antidepressants. Basically the GP didn't really know what was wrong with me. I missed a huge chunk of school. I pretty much taught myself the GCSE syllabuses for core subjects at home and went in for the exams.

It's so strange how my brain seems to have deleted large chunks of that year. I was SO tired. I remember my mum begging me to eat a kiwi fruit. I remember lying on the floor of the disabled loo at school and thinking I'd never be able to get up.

Somehow I got through my A Levels. And by uni time I was well on the mend.

I honestly have no idea what happened to me. It felt so physical at the time. I feel now that it was more likely mental.

You sound like such a lovely mum. Your DD is lucky to have you.

I'd be wary of CAHMs handling this too. There are still doctors arguing that this is all psychological, despite a lot of growing evidence to the contrary, and will treat it as such. And, I'm not trying to scare you sorry, but a few people do die. My DD lost a teenage friend. And they STILL in some instances say it is pyschological.

Our daughter was put under the local team, but the ME team in our area is part of a hospital that is largely psychiatric, and although they pay lip service to the fact it may be biological they put great emphasis on the patients pushing themselves and overcoming psycological barriers. They dissuaded us from getting any disability aids such as a wheelchair, which meant she had to crawl to the bathroom. We weren't allowed a bath chair so I had to bathe her (she is much larger than me) and I ended up with a neck injury that still causes me pain. And even though social services were trying to give us a wheelchair and a stair lift because they could see she was suffering the ME team vetoed this and their medical expertise trumped. So she was basically confined to bed, in pain, and not-functioning with people coming to see her telling her to do things that were impossible for her.
When she got so ill she was rushed into hospital with suspected kidney failure and life-threatening constipation (due to dehydration and poorly monitored pain-relief drugs) and we had a real medical emergency on our hands other medical experts stepped in and she wasn't allowed home without the medical aids she needed. This is when we got a wheelchair etc. Even then we couldn't get funding for one on the NHS and had to quickly buy a manual one ourselves, hoping for the best. At this point we started trying to find out everything about the condition that we could from other circles and I'm afraid we had to reject a lot of what is currently on offer from the NHS.
You might be interested to know that there was a debate in parliament recently about it and there is a lot of controversy regarding the research and guidelines. We are all hoping that things will improve, but not so far...
Sorry I'm really not tryng to scare you, but for-warn. Take what you are told with a pinch of salt and don't let your DD suffer if your instincts are tellilng you she needs a wheelchair now, get one.
This Dr on twitter is on the ball with a lot of what is happening now twitter.com/keithgeraghty

survival thanks so much,that means a lot 😊
I’m sorry you went through it too,without any help or support. You did amazingly well to fight your way through it.

hdh I am so grateful for your honest and frank post and I don’t see it as scare-mongering at all. You have verbalised all my fears-regarding ‘professionals’,CAMHS sand how poorly informed staff can cause complete carnage.
I was horrified to read what you and your DD went through-I’m so sorry you had to endure it and go through hell before you got any kind of proper help.

We previously had a hell of a fight on our hands with CAMHS when DD1 was referred there and I lost all faith in them. It’s early days,but so far I’m not exactly encouraged by the support of the NHS professionals I’ve dealt with.

I’m going to have a look at your link,thank you, and have a read up on the research you mentioned. Thanks again.

I also emailed a private specialist just now,to get an idea of prices etc and whether they can help.

hdh that is utterly horrific. Bastards.

Nice guidelines for CFS say that a paediatrician should diagnose young people/children. Have a look at your local hospitals and see if you can find the relevant service and go back to the gp armed with the nice guidelines.

www.nice.org.uk/guidance/cg53/chapter/1-guidance

Follow your instincts as a mum. Your dd needs to preserve her energy as much as possible.

Btw, never thought to say, you can pick up basic wheelchairs on freeshare, ebay and gumtree for little or nothing if you just want to try it out. But if you come to investing in one do try and get some advice or at least really think through how it will be used and what you want it for. And remember to check the wheelbase size and your door-frames if you are going to use it indoors. Our DD has 3 wheelchairs now, her manual which she can self-propel from her room to the bathroom or be wheeled in when too tired, an old but very heavy electric beast from gumtree that can tackle any terrain but is impossible to lift into a car for getting to the shop etc, and and i-go which she bought recently (and cost a lot) but which is a beaut of a nippy little electric machine which folds up like a pushchair and lifts into her boots - which is what she says has 'given her back some life' since now she can be taken to see people, shopping centres, days out, etc. She calls it 'Harley' her dream mean machine.

sorry that's our car boot or friends car boots not her boots lol