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Teenage son with ME/CFS

13 replies

iwillmakeit · 09/10/2018 10:26

Looking for some advice or support really, my 14yr old DS has finally been diagnosed with CFS. And we are both struggling with how to manage, him with cutting lessons, social activities and life as a 'normal boy' and me with the constant emotion turmoil of whether I'm doing the right/wrong thing! Any others out there who can help?

OP posts:
Are your children’s vaccines up to date?
iwillmakeit · 09/10/2018 10:28

Totally the wrong place, apologies!

OP posts:
educatingarti · 09/10/2018 10:29

If you report the thread. MN will move it for you to somewhere more appropriate.

BackToTheFuschia7 · 09/10/2018 10:30

Hi OP, I have reported your thread and asked it be moved somewhere more helpful.

Is your son under an M.E. Clinic?

iwillmakeit · 09/10/2018 10:35

Thank you!
Yes we've just been referred.Been there the once but didn't feel it was a place I could share...

OP posts:
AnyaMumsnet · 09/10/2018 11:20

Hi OP,

We're going to move this over to Children's Health, we hope that's alright with you?

Sixcupsoftea · 09/10/2018 22:26

This reply has been deleted

Message withdrawn at poster's request.

Mumof1andacat · 09/10/2018 22:34

Does you hospital have a child psychology team? Might worth a chat to your child's consultant about a referral to them. It will give you some space for you as parent and for children to have a chat about what's going on.

butterfly56 · 09/10/2018 23:09

Hi OP
How long has he had symptoms?
What triggered the CFS?...virus, bacterial infection, insect bite, tick bite , head injury, chemical exposure etc, etc.
Did he play contact sports e.g. rugby, football, hit his head, suffered whiplash?! Fallen off his bike. Any head injury at all during childhood can lead to problems with hormone imbalance and take years to manifest themselves.
Just some things for you to think about how all this may have started for him.

The main thing to do at the moment is for him to rest as much as possible because exertion will just worsen the condition.

The problem with ME/CFS is that most people with it try to fight their symptoms to try and force them selves to get well and use mind over matter which does not work!

How bad are his symptoms?....Severe? where he cannot get out of bed at all or does he have good days followed by bad days in which case.....
He needs to pace himself.

I was diagnosed with CFS a good few years ago and it took years to find out that the cause of the CFS was that I had damaged my pituitary gland due to a significant head injury.

I have Hypopituitarism. Which means that I have hypothyroidism and severe adult growth hormone deficiency among other issues.
No one was more surprised than me when I found this out(except my GP who had never had a patient with this condition caused by a head injury!).

I was fortunate to get to see and Endocrinologist that knew exactly what he was looking for straightaway. So I did not get told to go home and deal with as I had been told many times before by GPs.

If you want to google CFS and head injury you will find a number of articles about it.

Hope this helps

Sixcupsoftea · 10/10/2018 21:15

This reply has been deleted

Message withdrawn at poster's request.

butterfly56 · 10/10/2018 22:52

@Sixcupsoftea
So glad to be of help and I do hope the Endo can give you some answers.

When I went to see the Endo.....
I had written a comprehensive history of what had happened around the time I started with the symptoms right up until the time I saw him.

I was too exhausted to speak so giving him the information to read saved me having to talk and there was no way I could have remembered everything I wanted to tell him.

It also saved time in the appointment as I gave it to the Nurse on arrival at the Clinic and she gave it to him to read before I went in!

Here's a link to the article that I took to my GP if you haven't already seen it
www.meassociation.org.uk/2014/05/the-brain-injury-that-could-be-behind-30000-case-of-chronic-fatigue-mail-online-18-may-2014/

Here's a link to an Adult Growth Hormone Deficiency questionnaire that is used by the NHS(and I had to fill in) as part of the assessment for severe Adult Growth Hormone Deficiency.

The other 2 tests were the Glucagon Stimulation Test and the Insulin Tolerance Test.

www.imperialendo.co.uk/AGHDA.pdf

Sixcupsoftea · 10/10/2018 23:45

This reply has been deleted

Message withdrawn at poster's request.

iwillmakeit · 20/10/2018 18:29

Sorry for the absence after setting up the thread, my DS went downhill fast from Feb 2017 so its been a long time getting a diagnosis.
Its clear that despite cutting his hours at school he is still doing the 'boom and bust', I'll read the article on the head injures link as he was a rugby player, and had always been really active, seeing him unable to go for a mess around at the pool for 30mins without major payback is soul destroying.
He did go on a back to basics camp in the early Feb, I have mentioned this but no-one picked up on it, I might see if they will test him for Lymes, he did have Glandular fever but without any symptoms, it just showed up on blood tests.
Thank you butterfly for your advice, and sixcupsoftea wishing you and your daughter all the best. I have found "Action for ME" site helpful and they have a teen and a parents forum I'm going to sign me and DS up to.

OP posts:
SugarandVinegar · 20/10/2018 18:39

Can I suggest a supplement - a simple sugar that is accessible to the cells for energy. D-ribose, 3 x daily. Not a cure by any means but it does help some people.
The science: www.ncbi.nlm.nih.gov/pubmed/17109576

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