Daughter diagnosed CFS-ME, struggling... - Myalgic Encephalo...

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Daughter diagnosed CFS-ME, struggling with professionals different views and attitudes.

mummy-26 profile image

in short approx. 2 years ago our now 7 year old started to become exhausted constantly complained of pains all over, struggled with infection after infection. She was so exhausted it changed her activities and even school life, she has good days and bad days and some bad days continue for days on end, wiping her out.

xmas eve she became ill again and diagnosed with Pneumonia, and 10 days later a secondary ENT infection , followed by 7 days later being rushed into hospital with a strange tip toe walk and it seems dehydration and sickness. Various tests were done to see what was up but seemed she had picked up a viral infection, she spent a couple days on the mend then when down ill again then picked up again... it seems there are many doctors out there that dismiss the diagnoses and or do not understand it, we have had to battle the past week whilst admitted to have any one understand her needs. The pushing and nothing short of bullying from drs and nurses, saying its in her head or by choice, how is this any way by choice.. makes us so angry, very frustrated mummy right now and no end in site for them to back off and let her do things in her own time Pushing her is only going to lead to her suffering 24-48 hours time when she's exhausted from it and hasn't had time to catchup with her self let alone get over the latest virus!!!

11 Replies

I'm so sorry. People who don't suffer with this condition, have no idea what it's like. Even when you have a diagnoses it's not helpful. I'm so sorry.

Thankyou. It’s such hard work when fighting the so called trained professionals who need to re educate or at least have empathy :-(

My heart goes out to you both.

Hi mummy-26, has your daughter been diagnosed with anything? Unless I am reading the post wrong I can't see it and from checking, (again unless I am missing it), its your first post.

I cant imagine the fear and frustration you are feeling - its bad enough when its yourself. Have they ruled out other conditions such as Lyme's disease, Post-Viral fatigue, etc?

If you look at my first posts on M.E. there is great info from a specialist - Dr William Weir - who I saw and was very knowledgeable and sympathetic - if you are able to afford it he's a good man to see imho.

I hope this helps.

mummy-26 profile image
mummy-26 in reply to

Hi, sorry yes she diagnosed cfs, they tested for lymes and glandular fever and concluded she had cfs. She has a plan in school which we work together to support her and the school tbh are great but this recent admission has really rocked us

in reply to mummy-26

Ah, that makes a lot more sense, thanks.

Damn that is harsh, I am so sorry you all have to go through this. An ill child in a house must be very difficult to cope with.

I was advised Vit D supplements - * 30,000 ius of Vit D over 11 days I think with a maintenance dose of 2000 ius - apparently those with ME are deficient in it D.

Omega 3 Oils

Gluten and dairy free diet.

I've found that those have helped me quite a bit where I have gone from sleeping all the time to spending a lot of time a wake and active(ish).

Best of luck.

Hugs. Its incredibly stressful when your child is so sick.

Have you been referred yet to your local ME CFS specialist service for diagnosis? They ensure eliminatory screening is done so the diagnosis is clear and confident. The fatigue must have persisted for 3 months I believe in children.

There are some useful pointers on this page in context of the bullying you mention about having the right to withdraw from inappropriate treatment like GET. Also the right to be seen by a specialist and their registry.

meassociation.org.uk/about/...

Hospital doctors are unfortunately poorly trained with out of date information and either do not understand it or wrongly assume it is psychiatric. Neurologists in my experience are particularly bad for this so steer clear if you can.

The ME association has a helpline which may be worth calling if you are worried.

Thinking of you xx

Have you looked into B12 deficiency/pernicious anemia? Tests will probably come back 'normal' but there may still be a problem as the tests are not really fit for purpose. If you do decide to get tested don't supplement first as this will mask any issues.

pernicious-anaemia-society....

NB You don't have to actually have anaemia despite the name. This affects every system of the body, neurological, immune etc. and other symptoms can show up long before anaemia.

Also, my son caught everything going when young, but improved a lot with vitamin D3.

Hi, Sorry that your daughter has been so unwell.

Do you know if a blood test was carried out for B12 and folate. This is because on top of my daughters me, cfs symptoms, she finally had a test that showed that she was deficient and had injections for six weeks. B12 deficiency throws up lots of symptoms, including fatigue, repeated infections and neurological symptoms. Might be worth asking your surgery if it was done. You are allowed copies of your blood test results and I always get these now. Sometimes the results show that the tests are just within range. It gives you a better knowledge to get advice if the ranges are borderline. My daughter still has me, cfs, but many people have not had B12 checked out. You can find more info on Healthunlocked for Pernicious Anemia, as they also help those with B12 deficiency, website b12d.org, can also help with symptom checker. Hope things improve for you all, keep asking questions, you know your child better than anyone x.

pushing her will lead to a vastly increased risk of severe disability.Yo need to get in contact with the ME association ,they may be able to offer the chance for advocate to speak to her doctors on yor ad her behalf.It is very hard to stand up for yourself ,i know they pushed me and ive been very severe ME now for 18 yrs.i have never recovered to where i was before they forced me to exercise?Dont try to fight them on your own, get help behind you. if all else fails try to contact Dr. Nigel Speight. he is a very ME/cfs educated doctor with long history of helping children and their families in just the situation you are finding yourselves in. i hope this helps. you. bedt of luck and i hope she feels better soon.

ps another great doctor is Dr. William Weir .He is harley street based but i was able to see him and have a report sent to my g. p of his findings for 140 quid. bedt money we ever spent. He works tirelessly for peoplewith ME and is hugely knowledeable. Hehas long history of being consultant in Nhs for morethan 30 years before going into practise fr himself. He isvery down to earth and if anyone can help he can ,even if its just a phonecall to her doctors. to advise on best standard of care. .sorry i dont have tel number for these drs but they are very well known in ME circles . goodluck

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