16 year old daughter - in limbo

My daughter was diagnosed 2 years ago, after to'ing & fro'ing from various GPs for a year. We see Paediatrics every 6 months, mainly at my insistence, however, no real help. We just keep being told she needs to "battle" through, & she will get better one day, as she is so young. No idea when though, or what caused this!

Seeing a Nutrtitionist now, to see if this will help. Any other ideas gratefully received.

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  • Hello Gwyn. I presume your daughter was diagnosed with ME/CFS but you don't state this or how old she is. Please tell us more about what is actually happening. There are people who can help you and her. I will message you privately on here. Please look this up and then we can discuss this privately, as you may not want to tell all to on an open space.

    Miriam

  • My daughter was diagnosed at 11 and made no improvement until she got the "pacing" right. If it is ME/CFS "battle through" is not a good idea at all. Yes it is tough , ir that is what they mean but "rest and care" would be the phrase I would want to hear.

  • Getting in touch with Tymes Trust tymestrust.org/ was great for my youngest nephew who along with little paediatric support was experiencing increasing pressure from a school looking at attendance figures ahead of pupil welfare in their priorities.

  • Thanks to you all. She has been diagnosed with ME/CFS, & is nearly 17 now. She actually gets a lot of support from the school, who have been fantastic, so that's something at least. Yes, battling through doesn't work, & the Nutritionist has given advice from Dr Sarah Myhill, which we have been following.

    Will check out Tymes Trust, Firebrand, & thanks for any input, Miriam, happy to keep it public, as it may help others.

    In my daughter's case, possible link to HPV vaccines (controversial, I know) as this is all started when she was given these.

    We keep positive & looking forward. She is very determined, as am I!

  • At 17 and still in school I guess your daughter is doing A levels. I don't know how ill your daughter currently is but it may well be worth considering spreading the A levels out a bit. What I mean by that is drop a couple of subjects now to allow her more rest and perhaps carry on at a sixth form college when she is 19. My daughter spread her A levels out over 3 years and went on to get her degree at Cardiff. Looking back I would say it was a good idea to stay in the system but if I was given that time again I would definitely encourage her to do even less than the 50% school time she did manage. There is plenty of time for education the health issues are much more important. The other thing that really helped was asking for extra time and rest breaks during exams. I think AYME covers this here ayme.org.uk/documents/10228...

  • Hello Gwyn,

    We run a support group in Cardiff and we visit too, for miles around. If you want a visit to talk it all through, that can be arranged. MESiG has a £10 annual sub is you'd like to join as a Group is stronger than one person or a family and you get support and a newsletter and we pass on info via email from other organisations. We also assist with PIP applications top. We are planning an Awareness Event in May in Cardiff. Very active even though the Group is small.

    Very happy to keep in touch.

    Miriam

  • HI my daughter is 16 and just waiting for the final diagnosis of CFS after lots of test over it seems many years. She is struggling with A levels at the moment but the college will be giving her rest breaks in exams and extra time and a separate room for her to do them in so she can stretch/move about if needed. It's been hard work over the last few years and with my daughter it also seemed that it all started after the HPV vaccine as well. She is under the Bath hospital undergoing an active management trial and she also received CBT as well. Trouble is she's 16 and wants to do things like meeting up with friends in the holidays but this also means she crashes completely after a while, it's hard

  • CFS can be caused by mercury in amalgam tooth fillings as well as MANY other problems. I've had my amalgam fillings for years, I just found out about this and I plan on getting them replaced soon because i experience symptoms of CFS and anxiety and think they have been a major cause.

    Mercury is highly toxic and i don't think many dentist's are aware of the danger they put themselves in yet alone the patient that has to live with mercury in their teeth for years. Amalgam fillings are 50% mercury!

    3.0 —17 mcg is the daily intake of mercury from amalgam tooth fillings.

    Not a single atom of mercury is good for your body.

    Many Vaccinations contain small amounts of Mercury, Aluminium and Formaldehyde.

    To strengthen your Immune System

    and detox from toxic Heavy Metals i recommend:

    - Pure Magnesium Chloride body oil (and or) Magnesium supplements (Magnesium is good for your body in many ways, helps create energy 300+ chemical functions rely on magnesium)

    - Coriander in meals (Coriander has been said to accelerate the process of removing heavy metals from muscle tissue)

    - Nascent Iodine Supplement (strengthens immune system & health benefits)

    - Healthy and varied diet (Avoid processed foods)

    - Vitamin B rich foods and supplements (For energy)

    Hope this helped! - Benjamin

  • Hi I am 13 and I am going to a paediatrician every 6 months too. You are right about them not helping much. It was my GP who helped most. Sorry to hear your struggle

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