My Children's cfc treatment

[marcus26]

Both my children have been diagnosed with chronic fatigue syndrome. They are on nhs treatment plans with an occupational therapist. They also have other conditions and are under other consultants. One is under neurology for a condition called syringomyelia and the other is under a different neurologist because he is having seizures and abnormalities have been discovered with his recent MRI brain scan that warrant further investigation. Our problem lies with the occupational therapist. She is pleasant enough but very domineering and will assume things you haven't said to her. She has been trying to interfere with the consultants investigations into one of our sons seizures. Prior to the abnormal MRI she told our son that the tests would be normal and then tried to suggest to the consultant that his seizures were because of his cfc and migraine. She then told us that his MRI results were normal but when we saw the consultant we were told that they have come back with abnormalities. Basically all our Children's health complaints have to be associated with cfs and not possibly any other condition. This has been quite destructive. She told a general consultant that both our children had improved when they haven't and one was taken off his books and a report was done by him to suggest he was well. This one was the son with the seizures. We are not happy. Our children don't like her or he treatment methods and are now refusing to take part and we are at a loss as to what to do next. The only good thing she has done is to refer them both for hospital educational support as they find it too difficult to attend school at the moment. Can we request another OT in a different area or even ask our GP take over their care as they simply don't relate to the therapist or the plans they have been put on. If anyone can advise will be grateful.

[msBrightside]

Hi, not sure I will be of much help.

It sounds too familiar to me, I was told my M.E symptoms were migraines and my seizures have been put down to migraines too now. I've been referred to neuropsycology as there is a specialist is unexplained seizures.

I think you should be entitled to a second opinion. You should just speak up about what you're unhappy about that is sadly the only way to get the right treatment these days.

Sorry to hear they are missing alot of school and hope both keeping as well as they can.

[Bevvy]

Can you speak wit OT privately? Remember your children will pick up on your feelings. Sounds 'out of order' what happening but you need to confront OT about it.

Some of OT plans can sound difficult but can help in the long term.

I am lucky my OT is expert in CFS, but even so she has been difficult to work with sometimes. Plus had to take friend with to a meeting with consultant after she said something 'well out of order'!

[Maggie-mae]

Hi Marcus 26

So sorry you are in this situation - sad to say ME/CFS is still poorly understood - have you contacted AYME ? This is the Association of Young People with ME : telephone helpline : 08451 23 23 89 Mon-Fri 10am - 2pm. email: [e-mail]

website : ayme.org.uk

Best wishes.

[ME65]

Hi Marcus 26. Sorry to hear of your OT problems. You can ask to be transferred to another OT. As both the children are unhappy they aren't likely to improve under her care. You will need to find out who is the head of Occupational Therapy under whom she works. Is it the hospital or the council? Write a formal letter of complaint stating what the problems are and how they affecting the children (their welfare is the priority) and state that you have lost confidence in her and you wish to be allocated a different OT.

I had a problem with a social worker years ago. She was bullying me and restricting the care I could have. She even had care staff report back to her what food I had them prepare, saying I HAD to eat ready meals. With my daughter's help I compiled a complaint and was transferred to the loveliest social worker you could wish to meet.

It's well worth being firm and assertive when things couldn't get any worse.

Best of Luck

[sil1564]

my child has chronic symtoms i do believe that antibiotic given to him as a baby not only killed the bad bacteria but also the good , yeast begins to thrive as the good bacteria has been taken away this then becomes a candida overgrowth, in my sons case candida albicans along with parasites in his gut , its worth researching this condition to help , doctors seems to disregard this as an illness maybe cos it does not need any perscription drug just common knowledge to diet and what you are putting in your gut as a nation we are ellergic to the 21st century which is causing chronic symtoms and disease .

[sil1564]

please investigate CANDIDA ALBICANS do the spit test on the children not 100% but will give you an idea at to whats going on ..... also yeast overgrowth this may connect you with the symtoms your children are having its worth researching this coditions is what my son had the doctors dont seem to believe this condition at all as a mother you will know if this ticks boxes in your gut instinct kind regards Sylvia

[Calliepet]

I feel for you. I think you have to go back to your GP and explain the situation, just as you have here, and ask their advice. As there is absolutely no way to prove a patient has ME/CFS any health problem must be rigorously checked out to ensure that it is not due to another reason. There is a list of conditions that should be tested for and ruled out before the diagnosis of ME/CFS is given and surely something as serious as seizures must be monitored by a specialist. Our situation was not as crucial but we did have to deal with a school nurse who thought she knew how to cure ME/CFS and caused no end of problems for my daughter.

Did you see the TV program on treating seizures by using a high fat diet - it might be worth looking in to. There is evidence that what goes on in the gut can have real impact on all sorts of things. I have given up the love of my life (sugar) and it has really helped.