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

six I’m so sorry your DD is going through be same thing. Has she been able to go to school?

The blood pressure thing is interesting-DD gets really dizzy when she stands from sitting or lying and I’ve wondered if it’s BP related.

Have you found any supportive medics for your DD?

Ah your poor DD-that sounds awful- for her and for you. It’s terrible just feeling helpless,isn’t it? Plus you have been given conflicting advice.
I hope the endocrinologist can help and your DD can begin to make progress.

We had our referral done last Monday,but I’m ringing our regular GP on Monday-we will have weeks or months to wait and I just can’t sit by and watch as she deteriorates.

Maybe have a look at PoTS?

www.nhs.uk/conditions/postural-tachycardia-syndrome/

Thanks quiet- I looked at that link and she does have some of the symptoms. They haven’t actually checked her BP.

Sounds like a long term illness a teenager I knew had. I think it diagnosed as glandular fever or something very similar. He’s fine now but was unwell for many months.

DD (now 17) had glandular fever earlier this year and was bed bound for about 7 weeks. Whilst she didn't have CFS the things I think helped (although could have been placebo/coincidence) were vitamin C/zinc daily and reflexology.

Not sure if they're clinically proven but worth a try?

Thanks for the replies - seems it’s more common than I thought.
Freckled the GP said her glands are fine and no evidence of anything like that in her blood tests.
It’s all so frustrating, as there’s no clear idea of what’s going on. Thanks for the suggestions.

Ask for them to be checked for Lyme's disease. Its often overlooked and can cause a lot of the symptoms you describe

Worth getting checked for coeliac disease if you haven’t already . Hope she improves soon .

Thanks for the additional information and suggestions and good wishes
Coeliac has been ruled out, but I will ask the GP about Lyme’s

six DD isn’t housebound but can only manage very short outings and will need frequent rest breaks. She can’t walk far without feeling overcome with exhaustion .

She was close to fainting in the bathroom earlier and it gave us all a fright .
I couldn’t speak to the GP today but will be chasing him tomorrow.

Sounds like it could be pots. I had something similar as a teenager and was later diagnosed with ehlers danlos syndrome.

You have probably already checked this but what is her iron storage, haemoglobin and thyroid like?
If she needs b12 injections her diet must be very restricted and likely require some tweaking. Vegetarians shouldn’t get b12 deficiency usually.

ellie that’s something else I plan to ask the GP about.

bio she is vegetarian and has a lactose intolerance,as well as a lot of sensory issues around food,so her diet is an ongoing battle 😔 (and a huge pain for me tbh!!!)
She had a huge raft of blood tests last month and they only showed up B12 and Vit D deficiencies. We have seen a dietician and give her supplements too but it’s so hard to get the right foods into her.

When I was 15 I was so tired and lacking in zest for life that after some time I told my mother I thought I was dying. Many, many blood tests later... ruling out all of the obvious problems, it was diagnosed as ME or CFS. It was tough getting through school etc but my teachers were made aware. I managed. 2 yrs later I was high as a kite, doing v well academically etc. I had a relapse in my mid 20s. Couldn’t afford not to work so went to a homeopath. Brilliant results. She said many people with CFS lack certain amino acids. Put me on a raft of supplements inc v high vitamin c. Was back on my feet within about 4 months. See a homeopath for your daughter. It worked for me. 20 yrs later no relapses. xx

Google CFS and amino acids to get more details. Loads of info for you there!!!

Sounds like me when I had anorexia (more overlap with anorexia and ASD than publicised)

But also would rule out celiac disease

How low is the vitamin D and B12? When my Vit D and B12 fall below a certain level I am exhausted (think flu) and can’t get up. In so much pain etc. Only gets better when I have injections of both

It can take a long time (a year) to correct a B12 deficiency. How far apart were the injections? If she had 5 close together then that won't be enough to reverse symptoms if B12 is (part of) the cause.

How are her ferritin (stored iron) and folate (B9) levels?

Her Vitamin D needs to be at least 100 too.

Thank you for the replies.
DD is home educates now-she would never manage at school. I spoke to the GP,who also did a paediatrician referral but said there is at least a 3 month wait!

froglette I will check out the amino acid link -thank you. So pleased you overcame it.

Cherries I must admit I do t know the levels but she finished a course of 5 B12 injections a few weeks ago and is at the end of an intensive course of Vit D meds
My concern is that her symptoms don’t all correlate with those deficiencies and exist when her vitamin levels are normal.

AGHHH I need to ask what the levels were- they just said ‘very low’ 🙄
She had 5 injections over 2 weeks.

I took her to a cafe today and I had to hide my shock when she couldn’t do a walk from the cafe to the supermarket (approx 3 -4 min walk)

I have found a private specialist,but we just don’t have the funds yet (I’m a carer for Dd1) so may have to ask family . She can’t go on like this with no help for months .

Thanks for all of the posts.

What do they mean by normal levels? Some GPs will say levels are normal even if they are lower than normal. See the results for yourself and see if you can speak to an autoimmune specialist. My symptoms literally go away when my vit d and b levels are between a specific range.

Cherries I will make an appointment and ask to see the results. In fairness to that particular GP though,he tends to err on the side of caution regarding these things (eg when DD was not technically anaemic,he prescribed meds)

In terms of immediate action whilst waiting for further tests, I would aim for really nourishing food like soups and stews and even stewed apples.

Is there no way she could eat a little red meat? Her body is clearly struggling.

Magnesium and boron can push up vit D levels. Often vit D doesn’t ride on it’s oen