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

That's very interesting @BonnesVacances. I've never heard of a test for post exertion malaise before.
It definitely backs up my own personal experience with ME. The fatigue would always set in the next day if I'd overdone things.

Perhaps a diary might help @Sixcupsoftea?
You could record what your DD has been doing and the impact next day and see if you see any pattern? It might just be a case of seeing what works for your DD.

I don't really know anything about PoTs, only that it's a co-morbidity. Have you read the paediatric primer for ME/CFS? I know it says something about it there so might give some pointers how to marry the two sets of management needs.

Link to paediatric primer

Here's some more info on the 2-day CPET. It has to be considered with caution and guesswork as to how long it would take to recover from the PEM. But in the 2013 study no-one who took part had any long-term effects from it.

Workwell Foundation
MEpedia entry

Very interesting talk @BonnesVacances. Thanks for posting that.

My dd is still very unwell. Recovering from anorexia but I’m still acutely aware how it seems to be hovering over her and the slightest thing will trigger it again so things are fragile
The difficulty we have is there seems to be conflicting advice as to how to manage CFS and PoTs so we are effectively ‘stuck’
All we can do is pace activities as best as we can. Try desperately to avoid sleeping in the day and keep to a strict bedtime and sleep routine but she’s often bedridden even if not actually asleep
We literally take it a day at a time. Not having much luck with understanding from college they seem to not get it at all and we wanted to avoid the situation we had with school as we had to in the end home educate

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

I apologies for not coming back sooner.

I developed a thyroid problem aged 20 but it manifested as cfs (as it does) and I was given ads etc and so got progressively worse. I've had 'flares' all my life as I also have hypermobility, low bp, and more recently diagnosed with mild asthma which I've know I've always had but normalises / coped with bad times. Basically; I know a little of how she feels and it's fucking awful. So, many .

Regarding thyroid: could you find out the results? Deficiencies can be boosted to slightly improve thyroid function, even if 'normal'. Ferritin levels (iron stores) are very important and over 70 is classed as normal; I notice a clear difference. Iron, iodine and selenium are all very important for normal thyroid function. (If you're on thyroxine iodine is less important) Our main sources of iodine are dairy and fish. Vegans have a documented risk of iodine deficiency and raised tsh/ low t4/t3 as a result as the uk do not supplement foods. So anyone with limited dietary habits could be at risk.

It's likely to be fine but I'm just adding iodine into the mix of nutrients to be considered to maximise things for her. Do not take single iodine supplements as to much is bad. A basic 100% in a multivitamin is fine. (It may take a few months to level out).

www.bda.uk.com/foodfacts/Iodine.pdf

Note that haddock and cod are good sources.

For additional info; marks and Spencer's make the only plant based milks that have currently a good level of iodine in them compared to milk. It may be listed on other plant milks but it's not an effective amount.

Sorry, to add, brain fog and fatigue are common difficult symptoms of low thyroid. Children with iodine deficiencies have lower test result scores.

Is there alternative info to this story on that? It's an important vaccine.

www.meassociation.org.uk/2017/06/no-increased-risk-of-chronic-fatigue-syndrome-after-hpv-vaccination-24-june-2017/

I feel like there is some very dangerous anecdotal evidence on here. It is more important to vaccinate your children against HPV. I say this as somebody that suffered with chronic fatigue as a teenager.

Hi again. Sorry for the delay in replying.
I would love to reply individually but am struggling to keep up-testament to how many of you and your children are suffering 😔

I have read all of posts and am grateful for all of the information,advice and suggestions.

My immediate plan is to push the GP to check her bloods again and to get her some pain relief. I am also going to do a diary,to get a feel for how much she is actually able to do. I will also be stopping her during any kind of activity before she reaches the point of exhaustion and encouraging a LOT more rest.

DD hasn’t moved from the armchair today apart from getting dressed and using the loo etc and she really seems better for it-still looks dreadful and feels very tired but is able to hold a conversation at least.

Regarding the HPV link, I’m aware of it and am wondering if there is a link. However, i need to look i to it all further down the line.

I’m so sorry to read about all of the suffering this illness causes. I feel so out of mundane depth and am trying to formulate plans for DD to see what will help her the most.

Another question-apologies!

Those of you who have been diagnosed/child has been diagnosed with CFS- what happened between referral and diagnosis?

We are looking at weeks or months I expect and I just don’t know what I need to do in the interim,apart from what I mentioned in the post before this one.

Do I assume it is CFS and treat DD accordingly? I feel in limbo and want to move it forward far more quickly than 3 months’ time.

Hi lego. I originally was diagnosed with post viral fatigue after a virus in Feb. Late that year they changed to M.E/CFS as it hadn't improved when blood tests etc had all been done.

It lasted all of 6th form, so 2years. I then went off to uni but didn't go out much or attend all my lectures, I had support from the Uni, I was in catered halls. By the start of yr2 I was getting better and gradually improved

There have been minor relapses. The most major was when I only ever worked full time for 1year as it proved too much - my attendance averaged 80%. This was 8 yrs ago or so. I dropped to slightly part time and have only had slight relapses since then. I now work part time, have a daughter aged 4 and another due in 2w. Pregnancy has been fine but birth and the early days of daughter were very tough.

I hope this helps :-)

Meant to say I still have to be careful about getting enough sleep, making sure I eat for energy etc but a fairly normal life x

Just seen this. Apologies - I can't RTFT as my ds is ill. Just wanted to say it does sound like CFS.
My dd has had CFS for six years. Please look at the ME Association site and also get a diagnosis (which is just ruling out everything else). Then it's living with a horrible illness which is still poorly understood.
CAMHS kept asking my dd to get up and go out, as did the GP. I would say the best thing is to ignore those who think she's lazy, or believe the less she does the less she'll be able to do. ME/CFS isn't that. And most importantly to listen to your dd. She will come to know her body best. I wish her well.

That is helpful Rachie thankyou.
I’m glad you managed to get better (although I appreciate how careful you have to be) -it gives me some hope for DD.
Look after yourself-sounds like you have found the right balance.

Sticks you have voiced some of my fears ie that people think she’s being lazy,or that I’m enabling her to be ill.
The thing is,we all know our own children best. Poor DD keeps apologising to me when she needs to rest/can’t go out/can’t be bothered to speak and it’s hard to get through to her that there’s no need at all to feel guilty!
I will have a look on the ME site. Thank you.

She is struggling to control her temperature atm- going from being freezing cold to being red hot and fidgety. As a child who has always felt the cold,this is unusual.
I wondered if this is significant or just a coincidence?

Thanks again to everyone who has posted.
I feel so out of my depth,worried and scared we won’t be taken seriously,so the support on here is invaluable.

Action for ME have done really good leaflets to download, including ones for family and friends to read, and for schools too.

www.actionforme.org.uk/living-with-me/friends-and-family/my-child-has-me/

My DD also has problems with temperature regulation. Seems quite common for people with ME/CFS.

Not a coincidence at all. People with me are heat sensitive. I'm constantly freezing. Poor circulation and blue fingers. Uniqlo heat tech wear has been invaluable. Your daughter will need to layer up. Buy her an electric blanket. It has the benefit of keeping her warm, but also helps relieve some of the aching muscles and joints. Feels like a hug.

DD was diagnosed by a paediatrician after 3 months 1 week of illness. But as soon as I'd realised what was wrong with her, ie before diagnosis as no-one reacts to activity like this unless there is something wrong!, we cut back on activity, took her out of school and let her rest. I think the fact that she wasn't in school accelerated the referral process.

I used the activity diary from the Bath ME/CFS clinic (about the only thing they produce that's useful) to record her activity to try to understand what drained her the most and then tried to regulate it so that she could do as much as she could in a day and get the best value out of the energy she had.

I had zero expectations from the diagnosis, which was good, as nothing happened after that. All I had was a letter for school (which was bog all use because they were still extremely unsupportive) and a referral for graded exercise therapy (which I didn't proceed with). But at least I knew what was wrong and that someone believed us. The sad truth is that they don't know what to do and you don't get enough advice about how to manage it. I found the paediatric primer under my own steam and pretty much take heed of what it says in there.