Children with ME, schools and the problems of FII diagnosis

To clarify my earlier post, I would second Jonathan's point about alternative practitioners. Dr Worthley who I mentioned is a former NHS doctor who ran an ME clinic (he can be contacted through the ME Trust) and Dr Speight is too, I believe (contactable through the TYMES Trust). Maybe Jane at TYMES can help put you in touch with someone appropriate?

From personal experience, I've also found a sensitive occupational therapist to be really helpful. My OT's report was crucial in obtaining help for me, because it clearly documents which aids and adaptations you need (even if you don't install them), which in turn is 'proof' of disability. My OT supplies reports for the NHS, but I didn't want to wait and hired her privately, and it was the best £180 I've ever spent. Anecdotally, I know a few people who've had better results from an OT's report than anything else.

If you use Natural Health Worldwide (which I suggested in my earlier post), look for GPs or OTs, rather than alternative practitioners. There are some on there. Also check their credentials. Asking people you know may be a better idea, though.

 

I agree that an OT report might be very helpful.

 

In my experience any Doctor in any field that does not go along with the Biosocial model puts a mother under threat , so is a mother having opinion or asking questions, so I have learnt not to say too much or question them as this they take as a direct threat. I do however go public.

I take my son's BP and HR several times in the day, these bounce about around two days after an activity that has disagreed with his body. I can now get an understanding of how he is feeling and adapt things accordingly without him having to explain (teenagers have an aversion to being asked anything at the best of times when they feel so awful this is compounded). I have also began to take his Temperature as a friend has asked me to. Now if I showed the results to any professional this would also ring alarm bells. They would not look at the evidence but would assume it was mother induced. I don't blame them as the readings are bizarre and we don't normally track BP, but listening to Dr Bell I thought well if I can find a rhythm to it all perhaps I can support my son's body to recover from an activity. But and it is a Fluffy Duck BUT

I record his natural wake up time as this is a good indication of how his body is coping so when he wakes after 9.30 or before 6 am I know it is going to be a sluggish day.

10.49 am BP 101/61 HR 66 Temp 25.5
10.56 am Standing up BP 88/48 HR 160

Because I knew this was a bit of a warning sign I kept an eye on him, which in its self is difficult because when this happens he gets agitated. A few days after this I found him on the bathroom floor in the evening when he had just got out of the bath, he could not focus and or comprehend. He thinks he blacked out as everything was black and dark. It took him a good five mins to recover with warm blankets and water. Next day he woke and his lips were dry and bleeding. Angus drinks oceans of water but after an event like blacking out he does not drink so much and I have to remind him.

Now when I have mentioned this in the past to Drs they have looked at me as though I have lost the plot. Like I say I can't blame them as it is odd.

I do think it shows that this is not deconditiononing as his HR will bounce and stabilise until he over exerts. This reaction often happens when he laughs so again this is not due to anxiety or depression.

Have I found this helps? Only in the fact I know he is feeling bad and I now can see a pattern. The other good thing is that when I try something I can see a different pattern.

In a blood test recently that made him spiral into a deep PEM state they found he was low in Vit D this makes him feel better and more able for a short time. This may have just been a fluke so we shall see.

 

Yep When he was first ill they wanted to take him into hospital for a 4-6 week stay with rehabilitation methods of a tutor, lights and action without visits from me. My GP trusted the hospital and thought this was the best way forward. I got in-touch with Tymes Trust and Dr Speight gave a full and rounded diagnosis and some helpful advise which the next hospital put in a draw and left there explaining that they had done the Lightning Process and they were recovered? So I asked you are full time working and able to have a full home and social life. No they replied I have to be careful what i do and if you rebook an appointment makes sure they know it is for CFS as we get extra time and I get anxious if my waiting times get too high.

I wrote to the hospital suggesting some training and told them about Invest in ME as I knew Ron Davies was going with a few others that I knew would be able to help them understand a little better. They had to leave before Ron took to the stage.

However when I saw them next I was able to ask for a POTS test which was positive, but when we took Angus in with some worrying heart rate they did not understand POTS or ME and the senior guy told the junior Dr to get rid of us. What can they do if they don't know.

So I joined the local Community Engagement Partnership and got ME/chronic illness on the agenda to be discussed for educating the hospital and local GP staff and schools.

However, this may come and bite me as now according to the new NICE guidelines on Safeguarding and the new teaching of fabricating and Inducing Illness (FII) as a manipulative mother, who knows too much I could be playing into their hands. :-0

We will see on Friday after the meeting with the safeguarding officer at the academy that my son has a weekly tutor session from. My guess is that they will try and shut me up, accuse me of what they can and try to get rid of me/my son. The family courts are overrun with mothers like me. I have a couple of good and appalled decent people by my side for Friday. However, we need the public to be aware how bad this situation is for many with chronic conditions.

Not time to panic at the moment though I am slowly getting my head around the system (there seems 101 levels of command and all the charities that should support are Gov controlled or businesses gov controlled ) there are some good people in them that are like me getting to grips with things.

I have no doubt though that all mothers with conditions such as Autism, ME, EDS, POTS, Autoimmune and even Rheumatoid are at risk of being told that their mothers are fabricating how much pain they are in and it only takes 30 days to take a child away from their families; as now emotional distress can be the trigger and if you over state the pain your child is in they can get you. As a parent you don't know the good from the bad and if you have a nature like mine that is naive and wanting to trust you can be scuppered.

 

Thank you Skycloud

I had as he has grown at a thunderous pace which they comment on. The POTS dr thinks this is because he is naturally controlling the POTS. I feel like a hamster in a wheel just going around in circles. I would like to take him to get checked out but at the moment he is too sick to do that. But it is on my list.

 

Bless Ya will keep you informed, if I am not gagged and bound by the FII they use as a weapon.

 

I did and have been posting. Professor Rowe came last year to point out the mistakes of not looking at POTS as he has for the last 20 years at AFME, but that did not seem to make any difference?

 

The problem arises when their is no specialist service in an area to do the proper assessment and provide a validated NHS diagnosis. Often, Local Education Authorities insist on referral to a paediatrician who may not be helpful- community pediatricians in particular have been a problem in our area over time. Ask Nigel Speight about East Anglia!

 

No Tilly!.....I think you actually recorded 35.5 c NOT 25.5 'cos he would be deceased that low or prepared for deep freeze!
As we discussed this, we have also been using the Wilson Temperature Chart which helps, but even this chart does not have the right wider range of temp to record.
Lowest on chart is 35.56!
Like you, I have asked husband to start recording at least 3 times a day to see.
Start day on rising was, 36.1 c ( this is a consistent daily pattern) and interestingly went lower in the afternoon to 35.7c and 35.6C.

Now to me this is clinically significant.
His temperature has also been recorded at 35 c on occasion. ( no point on the above chart to record).

Are the Endocrine NHS consultants interested? No!
Like wise very low pulse rate at rest and general activity, and low BP.

 

Hi @Tilly, glad you have support for Friday.

There are pdfs of the slide presentation from the 2015 IOM report that may be pretty relevant:

http://www.nationalacademies.org/hmd/~/media/Files/Report Files/2015/MECFS/MECFS_Powerpoint.pdf

Slides 26 and 28 may be worth printing out. I cannot copy them here, but they include:

26: -School attendance is significantly reduced in a large percentage of patients. These patients are often misdiagnosed with labels of "school refusal" or "school phobia"

28: "orthosatic intolerance and autonomic dysfunction are common in paediatric ME/CFS

Good Luck

 

@Tilly,
The international pediatric primer has a good section on POTS, a decent section on education and info on misdiagnosis of school phobia etc .

It would be worth printing off a few copies.

I will be thinking of you on Friday
It is the classic double bind - say too much and you are FII , say too little and you obviously don' t care enough.

 

My experience of medical reports is to try and get someone ex-NHS who still has clout. I needed medical reports for a legal case and only those with a current or previous NHS clinic seemed to get respect with agencies, govt department or lawyers.

This is not a comment on Dr Worthley or any other doctor who may well have a lot of valuable experience in this specific area.

 

Dear @Tilly,

I very much appreciate your situation but I think it is important not to overestimate what is known about either the illness or its treatment. Ron Davis certainly does not yet know anything of use to a doctor. And I doubt making a diagnosis of POTS tells us much because the POTS pattern in ME might need to be treated quite differently from POTS is other situations and even there we do not really know what to do. My own suspicion is that orthostatic intolerance in ME may have nothing to do with pulse or blood pressure. We really don;t know about these things.

Much as I understand you wanting to monitor I would personally forget about taking any blood pressure or else measurements or temperature. I don't think they tell us anything useful in ME. My understanding is that for PWME any intervention takes up effort and it seems to me a pity to use up effort doing things that probably achieve nothing.

 

@Tilly All good wishes for Friday Tina x

 

@Tilly , have you seen @Kalliope's posts on a project on adapted education for children and adolescents with ME in Norway?

It's in Norwegian, but perhaps it could help to demonstrate that there are some sensible people who take ME and the problems with regard to school attendance seriously and offer concrete support:

https://www.s4me.info/threads/news-from-scandinavia.647/page-16#post-104414

https://www.s4me.info/threads/news-from-scandinavia.647/page-16#post-105033

https://www.s4me.info/threads/news-from-scandinavia.647/page-17#post-106915

Good luck for Friday!

 

I agree with most of this, it is a pity we know so little when POTS has been around for so long. However it is another can of worms that as a parent you have to appreciate and deal with the best way you can.

You can take an attendance officer, teacher and doctors to the diagnosis but you cannot make them drink from the fountain of knowledge and understanding of it. As you rightly point out no one is in a position to tell anyone anything.

However, I need something and so do 25,000 children along with their parents. They need a graph or a picture of some kind to show, as they say seeing is believing and at the moment my son and his struggles need to be seen. Our children need to be protected as there is a very forceful group of safeguard specialists that are backed by the Royal College of Paediatrics and Child Healthcare, convincing Judges, consultant paediatrics (they are taught how to be an eye witness in court for the child, the mother has no protection and a lot of the time the team of layers the parents have are not allowed into the courts as the Local Authority get to pick who is allowed in to court, as it is for the child's protection and not the mother/parents), GPs, Social workers, Attendance officers, teachers and councils that there is nothing wrong and it is the mothers perception.

There is no way of reversing the allegation parents are scared for life with the false allegations. No one looks into the damage caused to the family when this happens even when the child is returned. If they go into care there is no way of knowing if they get the proper care and understating and I am aware that for some that are just left to what I can only describe as fester, with a condition like EDS + POTS + ME/CFS that makes me shudder.

My point of the graph is not so much to show the illness for research or to show how ill my son is, but to show the delay in recovery. Trouble is he is not doing this quick enough at the moment so I can't show recovery but I do have years worth of how recovery happens. When my son bounces back you see a difference in the amount of time he spends in an upright position, his HR and BP stabilises. It will I hope show that this is a circle and a rhythm that cannot be forged by thoughts or feelings. I have nothing else but words and quite frankly words don't count.

When my son starts to come out of a PEM state he automatically and without being asked, gets dressed and springs into action. The downside to this is that depending on the domino reaction that takes time to come out to a PEM decline is just not seen by others just me. We don't know how long the PEM lasts either, which teachers don't like - they think I should know. I can't tell my son to slow down either, as this also has me sitting in the frame of FII on the grounds of holding him back. I have no evidence that resting helps. In short I'm scuppered.

You see a few years ago I could have taken him out of school and allowed him time, but in the last few years this makes me seem even more suspicious. I have no option other than to be compliant with what they offer as treatment (even if I feel this is detrimental I have no proof), keep him in some form of education and work hard at supporting good doctors, teachers, attendance officers, councils and researchers.

In the last two weeks we have lost over 15 children due to false FII (not all ME/CFS related) and these are the ones I know about. Even with a diagnosis you are not protected. You see it depends if the professional understanding the condition, being called MUPPETS (Medically Unexplained Physical Physiological (ET) Symptoms didn't help. Along with all the talk about activity management without proper control of subjective measures.

How can I fight all of this on Friday. I have no treatment to show the teachers? No treatment or biomarker, and no means of showing decline or recovery, so why would they believe me? They have been taught this no evidence means no illness. Many more children are going to suffer because of this.

Having a body Temperature that stays at around 35.5 on some days and then goes to a more normal constantly of 36. on others is not normal?

Neither is HR of 160 when he first stands up in the morning, or when he laughs?

What ever it is we need something to show.

At about 1.37: you will hear Leigh Jackman on the below Youtube video say there are 600 parents on her list they have lost 10 children in the last two days due to the teaching of the master class that is now endorsed by RCPCH. How can mothers fight this?

https://www.youtube.com/watch?v=ezvg54JiLP0

 

Thank you

Thank you that is great advice.

I haven't been down the rout of alternative practitioners, as it took so long to get a diagnosis of Cecelia his tummy does not tolerate multi vitamins.

I am looking into OT to help but at the moment they all recommend GET with CBT. In reality though travelling would be too much for him and as the school insist he has to attend hospital visits once ever three months as telephone calls are not accepted as evidence, this is as much as he can manage. Still looking though for one that will come to the house, but I need this meeting and the aftermath to be over until I think again about that.

 

When it gets to this level, i cannot understand why charities do not have a network of credible ( to authorities) advocates to deal with this basic level of misunderstanding. I know Tymes Trust does make a huge difference, but volunteers working pro bono can only resource so much.

If my background had been law/ medicine/ biochemistry etc , i would not hesitate to do a bit of training and act as an advocate.

Given some of the poor quality research endorsed by AYME, the development and provision of a network of decent advocates could be a means of AfME demonstrating that it understands and actively supports parents and families ( and others - look at the disbelief Bob experienced and its effects)

Where is the MEA/ AfME / MEaction input when the shit hits the fan ?
@Action for M.E. where is Dr Muirhead - if she really wants to make a difference , a dip in the deep end for @Tilly might work wonders.

I shudder to think what the care system would do to a child with moderate / severe ME

Edit to tag Action for ME.

 

@Tilly I just can't like your posts but my heart goes out to you.
I think you are doing brilliantly in the most frightful of circumstances.
Wishing you everything for Friday.

 

As I wrote on another thread, it's hard to take that there seem to be two parallel universes for pwME when you see the examples from Norway I linked above(*) or the development and application of "No-Isolation" robots (**) on the one hand, and the horrible experiences of families like Karina Hansen's on the other hand.

How is it possible that people can be so oblivious to the harm they are causing when at the same time there are excellent examples how to treat pwME with respect and real support?

And how can we enable those oblivious people to see the other universe?

@Action for M.E.

(*) https://www.s4me.info/threads/child...lems-of-fii-diagnosis.5853/page-2#post-107089
(**) https://www.s4me.info/threads/teena...sformed-by-a-robot-that-helps-her-learn.4033/
https://www.s4me.info/threads/my-robot-makes-me-feel-like-i-havent-been-forgotten.5552/