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

Fuck that. Ignorant fuckers. It’s time to find a different route (honestly try a really good, recommended nutritionist).

Graded exercise has been shown NOT to work and if your DD just had to “get on with it” she would have done that already. Bloody doctors

Ah six so 😡 in your behalf-your poor DD.
What a bloody stupid doctor.
I’m so new to this,but as a mother, you know her best so keep doing what you are doing and trust your own instincts.

Can you imagine sending her back to school AND starting exercises? Your poor DD would be utterly floored.

My DD is HE -would it be worth maybe deregistering your daughter so they get off your back about school? She can work totally at her own pace-or not,if she isn’t well enough.
PM me if you need any help with that.

Called thanks very much for the last couple of links/ideas.

Good luck!
Yes, seeing a Registered Dietitian or Nutritionist would be a better idea as well.
For the CoQ10, a form that is water and fat-soluble absorbs better.

She will get better. She just needs to get on the right path.

I think Ella Woodward (Deliciously Ella person) had POTs or something similar - maybe her story might help your DD?

I am studying nutrition through the Institute of Optimum Nutrition after healing myself of anxiety and chronic fatigue and other issues. (NHS could do bugger all). I’m absolutely passionate about this area! It’s all very much evidence based and not woo at all. But it looks at the body as a whole rather than looking at the bit that isn’t working.

If you could try to find an ION trained nutritionist in your area? Maybe most on a local Facebook group? Also, there is a great book out called The Good Stuff with lovely recipes and ideas for feeding teens.

I think magnesium, a good probiotic, vitamin D and other stuff might help but you don’t want to guess. Get some private tests done. They could do stool samples for example to check gut health.

You will get there and don’t let this set you back.

It was heaven when ds finally got a piece of paper from a medical professional that said that he actually had a disease with a name and that it wasn't just him being lazy or me over indulging him. The huge improvement from the treatment was the next great thing that happened. And now that he's past puberty and is doing even better, I am super happy. His geneticist told me that it would get better when he was done with puberty, but it's hard to believe when you are in the thick of it.

I would say that the most important advice that I can give is to listen to your child and don't make them try to "compete" with their peers. It's ok to go to school part time and do life slower than everyone else. There is a place in this world for everyone.

A “slow” gut? You mean constipated? That’s very interesting. From a functional medicine point of view then it would be viewed her issues were maybe already there and the CFS has developed:

There is a tonne of stuff that can be done. She will get better.

When I had my ME like symptoms, I was incredibly low. This was pre Facebook and support groups etc. Believing she will get better is key because it will help when she needs to eat very nourishing foods and rest.

Even sorting out her constipation now will help as it will mean she is eliminating waste products more effectively and take the pressure off her system.

Gastro issues are a common symptom of Mitochondrial disease. CalledYouLast the list of supplements that you took are pretty much what is prescribed to my ds by his Mito geneticist and are referred to in the literature (and the links I gave above) as the "Mito Cocktail." Dr. Boles has published several papers on the positive effect of them on Mito patients particularly with regard to CFS symptoms. By the way, here's a direct link to the Symptom Guide for Clinicians: www.mitoaction.org/guide/table-contents which is what your GP and CF specialist should have had in hand when meeting with your DD.

Sorry I haven’t been around for a couple of days-I found out the reason I have been so ill is due to shockingly low iron levels and microcytic anaemia

six how are you feeling now,after that awful appointment? And your DD?

Thanks for nutritional info and the gastro information.
Funnily (?) enough,DD has a lactose intolerance and gastritis.

When she got up today,she seemed better than in months. She decided to come to Tesco and literally,within 2 mins of being there , she was ill again and had to sit down.
She went downhill so fast!

Oh and I had got the date of the panto wrong-it’s next week!!!

Definitely microcytic anaemia not macrocytic? I'm asking because macrocytic anaemia is what results from pernicious anaemia and given your DD is also having b12 issues, they can run in families.

Yeah definitely microcytic, but thanks for the info

six the shooting pains could be from restless legs syndrome. I get this when I've overdone it or just stood up for too long. Magnesium spray really helps. You can buy from Holland and Barrett.

I can't imagine what it must be like as a parent of a child with this illness. Having to fight and advocate for them constantly must be exhausting

Missis and Six-the pound shop also does magnesium salts. DD also gets the shooting pains and we give her a bath with those salts in to help.

Six, I hope DD makes tonight. It’s awful to see them missing all these normal teen activities. DD also has one loyal friend and we have to be grateful for that.

DD was singing this morning and it was so lovely. I’ve come out for a breather six but she was curled up in a chair when I left-all from a 5 minute walk round Tesco!
She desperately wanted to come though,to buy some food bank donations, so I didn’t want to stop her.
Thanks for asking -feeling pretty rubbish still (iron is rock bottom!) but will be on the mend soon.
I don’t sleep-I wake frequently and do the same as you : worry,stress,plan.....every morning I hold me breath to see how she is when she gets up. I paint a big smile on my face and try not to show my shock when she looks particularly ill.
My best friend saw her the other day and was really upset at how ill DD looks-brings it home.

Missis -thanks for all of your supportive posts.
I can’t tell everyone how much it means.

Let us know if DD makes it tonight,six 😊

Ah no 😔 your poor DD- she needs to do all the hair stuff to feel good,but it wipes her out for the actual event. What a bloody cruel illness this is.

Just take heart from all the positive stories of recovery.
My friend told me yesterday that her niece got CFS at 15. She was bed bound and in a terrible way. Now, a few years later, she’s a maths teacher and managed uni etc with no problems.
Sending you a virtual box of chocolates-tough few days for you x

Sorry-I keep moaning on here,but nobody in RL to talk to.
After a couple of rest days,DD had a a really good day yesterday. She came out for a trip to Costa with family and bought herself a Christmas tree for her room

She was laughing and bantering with DD2 and it was so special.

So today.....woke up very ill and tired, very painful throat and said she can’t be bothered to speak.

I know this is all part of CFS and it’s to be expected etc, but seeing a glimpse of my ‘real’ DD was so amazing and my heart breaks for her.
I’ve been positive with her and kept her upbeat today,but it hurts.

How’s everyone else’s weekend been?

Your daughter is still there Lego And she will recover. It just might take a while.

I know it's hard, it's great that she's been able to get out but try and minimise trips out to an hour. It will really help with the post exertional malaise. It's hard to get a balance between 'boom and bust'. I still can't manage it all three time.

I recognise the description of the pale face. If I look at family photos taken in the last five years, I look like a ghost. Even when I've put loads of make up on to try and bring me back to life

You're doing brilliantly being brave for her. But equally it's good to acknowledge how bloody difficult it is. I'm glad you're able to talk about it here but sad that you don't have any support irl. You need to keep your cup full in order to be able to support your daughter so make sure you've got strategies in place to help you through this too.

Moan away!

So in my latest studies it was again said CFS is a disorder of the immune system. So I would also suggest a really strong probiotic? Proven Probiotics seem good.

Thanks Missis-I really am so grateful for your ongoing posts of support and advice. I agree that we really need to keep an eye on the ‘boom or bust’ issue.

Called DD used to take one actually and we got out of the habit. I will reorder the probiotic she used to have.
Thank you.

We had progress today. I referred DD to OT and I had a phone call from an OT I have seen with both DDs and through my previous job. She is FAB.

She was horrified about our experience with the GP and gave me great advice about energy conservation and planning.

She shares my concerns about how much DD is indoors (manages an hour or two out a couple of times a week) and wants her to get some fresh air and so on.
I totally agree and when she suggested a referral to wheelchair services,I was a bit thrown but she made me realise that it could help to open up DDs world again.

The whole family is more or less housebound on a weekend,when previously we were always out and about.

DD got a bit upset when I asked her about it and she is very quiet.
I’ve explained it would only be for a trip to the park or when there is a lot of walking involved etc.
She needs time I think-it all feels a bit controversial and I feel about anxious tbh.

That's great news about the OT. So good to hear of an understanding professional.

Re: probiotics. Try getting hold of some kefir grains. You'll get a better range of live bacteria and its much cheaper. You can make dairy free versions of it. I mix it up in a smoothie.

kombuchahome.com/make-diary-free-kefir/

Re the wheelchair. Would she be open to trying one in a supermarket? Just five minutes every now and again might help her start to feel less self conscious about it. I know how hard it is to start using one. It took me 4 years til I 'gave in'. Life has opened up so much more. Once you get over the embarrassment/fear/vulnerability you soon realise the benefits.