Children with ME, schools and the problems of FII diagnosis

Tilly

Tilly

Senior Member (Voting Rights)
Moderator note
This post has been copied across and several subsequent posts moved or copied from this thread:
Myalgic Encephalomyelitis (ME) or What? An Operational Definition, 2018, Frank Twisk

....

My son is now on a steep decline and because he is of school age I am hounded as a Fabricating and Inducing Illness potential. His Liver now is showing signs of damage which they have just picked up on a blood test. I was given no information or reason why but they will check on this in a few weeks time. Is it about time I looked at asking for a lactic test? Why is this not looked at as a matter of course? I cannot ask for too many tests due to FII and I am very sad to say I have lost all faith in doctors in my area and my son has been so badly treated it is always a risk of more emotional abuse lashed out on him and me if we go to the surgery.

The ironic thing is keeping active lowers your lactic, but with ME when they do any activity their lactic goes into overdrive? so this is not going to help? It's is the same with POTS which he has been diagnosed with.

Fluffy Duck how it is to be a mother with a child with ME I am dammed if I try and find out and we are both condemned if I don't. I know you will give me a good solid and no holds bared answer which would be much appreciated.

Tina Rodwell
 
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Sly Saint said:
I can't answer any of your medical questions, but this is terrible; have you got in touch with TYMEs trust about it?
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Yes and they have been brilliant, but you cannot convince a Dr/Gp that something is wrong unless you have a biomarker. You can give the research but without endorsement of NHS etc they dismiss everything. A little empathy would be helpful but that is a very rare thing. We have been living with this for 5 years and it is really down to my care and that is totally inadequate. Having said that it is better than that of the medical profession, listening to all the experiences of the young people and children out there.

It is always nice to have a comment Sly Saint as it means there are people out there I can talk to.
 
Tilly said:
Yes and they have been brilliant, but you cannot convince a Dr/Gp that something is wrong unless you have a biomarker. You can give the research but without endorsement of NHS etc they dismiss everything. A little empathy would be helpful but that is a very rare thing. We have been living with this for 5 years and it is really down to my care and that is totally inadequate. Having said that it is better than that of the medical profession, listening to all the experiences of the young people and children out there.

It is always nice to have a comment Sly Saint as it means there are people out there I can talk to.
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I can empathize with your situation, though 2 years since diagnosis. Medical history of lots of small issues suggesting something amiss with immune system prior to glandular fever. But no immunology referral possible.

We are now " heart sink " patients, though GPs and consultants are generally relatively pleasant. Noone has a clue, and any suggestions can provoke a look as though you are doing the Blackadder Goes Forth sketch where you stick a hanky on your head, stick a pencil up each nostril, and say " squibble, squibble" .

If you engage in any biochemistry talk , generally you get asked what your background is, and if not science based then some very strange looks ensue.

The nicest medic we had was a student who apologised for not knowing much. When he got his prof to engage to respond to a suggestion of hypometabolic state ( re low T3 paper) , the tone distinctly changed.

My daughter feels that any appointments are a serious waste of energy.
Early hopefulness has given way to a very dry sense of humour and a distinct lack of expectation.
 
Amw66 said:
I can empathize with your situation, though 2 years since diagnosis. Medical history of lots of small issues suggesting something amiss with immune system prior to glandular fever. But no immunology referral possible.

We are now " heart sink " patients, though GPs and consultants are generally relatively pleasant. Noone has a clue, and any suggestions can provoke a look as though you are doing the Blackadder Goes Forth sketch where you stick a hanky on your head, stick a pencil up each nostril, and say " squibble, squibble" .

If you engage in any biochemistry talk , generally you get asked what your background is, and if not science based then some very strange looks ensue.

The nicest medic we had was a student who apologised for not knowing much. When he got his prof to engage to respond to a suggestion of hypometabolic state ( re low T3 paper) , the tone distinctly changed.

My daughter feels that any appointments are a serious waste of energy.
Early hopefulness has given way to a very dry sense of humour and a distinct lack of expectation.
Click to expand...

My son was 8 when he first became ill and was resigned to the fact that no one would believe he was ill and has often says in his now sarcastic teen tone "What do I have to do to make them believe that I'm ill, die?".

He has POTS which they think of as Anxiety triggered, and even though he has been struggling to breath and his HR goes up to 160 when he sits up, they are not troubled by this. Celiac which causes no damage. Hypermobile joints but wont look for EDS because why would I want another tricky label.

I might as well go around with a hanky on my head and two pencils up my nostrils at least I would feel as if I'm achieving something, it would make him laugh.
 
Jonathan Edwards said:
It almost certainly has to do with sites of tensile force in continuous postural muscle action. Most muscles in the body are called on to do specific jobs intermittently. But trapezius and soleus (which is in the same place as gastrocnemius) contract almost constantly just to keep your body upright with slumping. The tennis elbow spot gets tender if you carry something for a long period with the arm slightly bent, and so on. Tender spots in trapezius are something casualty officers and rheumatology trainees get familiar with in their first clinics - and learn to reassure people that they do not mean anything. By the time I got to be a medical student I had already had episodes of tender trapezius and my father, who was a doctor, had reassured me.
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So we have cause and effect, but that is normal and although you get bursts of abnormal tenderness with a virus say (mine always flairs up when I get a cold sore) you get to know the difference? You get someone who is constantly looking at these areas you get two outcomes. They get blase and and expect discomfort so just accept it no matter if it has changed and move on, or they get to know when something is wrong. I would say you and Dr Ramsay are/were the latter?

Me with Angus for instance, I would not have a clue, when he complains of stiffness or soreness and his very often in a low sate of cognition at this point that he would not be able to tell me if it was in his shoulder or ankle. I know this sounds funny but we are talking about a poor lad that opens the fridge and asks me the question "What is my name". He had a glass in his hand at the time and wanted to fill it up with water on the outside of the fridge door. We would not be able to tell a Dr the facts they would need to know to find a problem and so these problems are missing. This soreness and stiffness comes on around 3rd to 4th day of recovery after an activity, so it is not part of muscle being used. I don't think Dr Ramsay would just mention this tenderness without having a very good reason to do so? Not that I knew the man, but he is on my dinner party list along with you and few others.

There is something more here? I have been wondering about this since the time of the fridge incident when I first noticed he walked on tip toes and couldn't hold the glass filled with water. He also blacked out going up the stairs.

This is the other thing I noticed early on - he gets cold on the outside of his calf muscles and just below the elbow about four days in from recovery from an activity. I give him body temp salt baths and just warm those areas up and the pain eases. This really is the most bizarre condition.

I have been summoned to the school next Friday where I will be questioned about my son's illness and his inability to get to school for the meeting. The Safeguarding officer of the school won't come to my house and has never met my son. The paediatric thinks the POTS symptoms (even though he has a diagnosis of POTS by that Drs team) are all down to Anxiety. There is no science they would accept on my side to say any different?

It is a strange world we live in.
 
Tilly said:
The paediatric thinks the POTS symptoms (even though he has a diagnosis of POTS by that Drs team) are all down to Anxiety. There is no science they would accept on my side to say any different?
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I think that is a common error: To think that when there is no" biological" explanation, then there is only a psychological explanation left - or vice versa: A psychological explanation could be disproven by a biological one (like POTS). In my view an anxiety diagnose has to be made based on clear criteria and not on some symptoms which superficially seem similar to anxiety symptoms.

As a matter of fact, the cognitive symptoms we have are the field of expertise of neuropsychiatry or neuropsychology. Thus, in this sense we might have "psychiatric" symptoms, but these I think can be differentiated from anxiety symptoms or other mental illnesses without the need of an alternative proof of a biological cause. (I think we really could benefit from good neuropsychiatrists/ neuropsychologists with regard to be taken serious.)

[Edited to add: The "science" that could support you imo is e.g. that when your son's symptoms have the pattern of ME and he has an ME diagnosis, he does not need an additional POTS diagnosis; it is possible to have ME and an anxiety comorbidity but I think it is also possible to differentiate anxiety from ME related symptoms; there is no evidence that any psychological treatment is effective for ME.]

Best wishes for you and your son, @Tilly ! I hope you will find support.
 
That can be from ME but it can be other things. Maybe they can help to rule these out.

Anyway a person that can not remember his own name is in no condition to attent school.

Tilly said:
I know this sounds funny but we are talking about a poor lad that opens the fridge and asks me the question "What is my name". He had a glass in his hand at the time and wanted to fill it up with water on the outside of the fridge door.
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Tilly said:
It is a strange world we live in.
Click to expand...

It certainly is and I appreciate the impossibility of your situation.

However, I would query whether one should take too much notice of what Melvin Ramsay said. When I look this account I get the impression that he was not a very rigorous observer. He is popular because his name is associated with the term ME but it was not in fact him that invented the term and the term was really invented to describe an illness that is not the illness that we call ME today. It was a pathological concept with implication of a virus that turned out not to have any identifiable pathology. Everything has become muddled and the more I learn about ME the more I think we should forget what was said fifty years ago and focus on people's problems now. Maybe it is better to think in terms of chronic fatigue syndrome, but I appreciate that the focus on fatigue is not ideal.
 
Tilly said:
Moderator note
This post has been copied across and several subsequent posts moved or copied from this thread:
Myalgic Encephalomyelitis (ME) or What? An Operational Definition, 2018, Frank Twisk

....

My son is now on a steep decline and because he is of school age I am hounded as a Fabricating and Inducing Illness potential. His Liver now is showing signs of damage which they have just picked up on a blood test. I was given no information or reason why but they will check on this in a few weeks time. Is it about time I looked at asking for a lactic test? Why is this not looked at as a matter of course? I cannot ask for too many tests due to FII and I am very sad to say I have lost all faith in doctors in my area and my son has been so badly treated it is always a risk of more emotional abuse lashed out on him and me if we go to the surgery.

The ironic thing is keeping active lowers your lactic, but with ME when they do any activity their lactic goes into overdrive? so this is not going to help? It's is the same with POTS which he has been diagnosed with.

Fluffy Duck how it is to be a mother with a child with ME I am dammed if I try and find out and we are both condemned if I don't. I know you will give me a good solid and no holds bared answer which would be much appreciated.

Tina Rodwell
Click to expand...
@mariovitali - perhaps you could share insights re liver with @Tilly
 
Tilly said:
So we have cause and effect, but that is normal and although you get bursts of abnormal tenderness with a virus say (mine always flairs up when I get a cold sore) you get to know the difference? You get someone who is constantly looking at these areas you get two outcomes. They get blase and and expect discomfort so just accept it no matter if it has changed and move on, or they get to know when something is wrong. I would say you and Dr Ramsay are/were the latter?

Me with Angus for instance, I would not have a clue, when he complains of stiffness or soreness and his very often in a low sate of cognition at this point that he would not be able to tell me if it was in his shoulder or ankle. I know this sounds funny but we are talking about a poor lad that opens the fridge and asks me the question "What is my name". He had a glass in his hand at the time and wanted to fill it up with water on the outside of the fridge door. We would not be able to tell a Dr the facts they would need to know to find a problem and so these problems are missing. This soreness and stiffness comes on around 3rd to 4th day of recovery after an activity, so it is not part of muscle being used. I don't think Dr Ramsay would just mention this tenderness without having a very good reason to do so? Not that I knew the man, but he is on my dinner party list along with you and few others.

There is something more here? I have been wondering about this since the time of the fridge incident when I first noticed he walked on tip toes and couldn't hold the glass filled with water. He also blacked out going up the stairs.

This is the other thing I noticed early on - he gets cold on the outside of his calf muscles and just below the elbow about four days in from recovery from an activity. I give him body temp salt baths and just warm those areas up and the pain eases. This really is the most bizarre condition.

I have been summoned to the school next Friday where I will be questioned about my son's illness and his inability to get to school for the meeting. The Safeguarding officer of the school won't come to my house and has never met my son. The paediatric thinks the POTS symptoms (even though he has a diagnosis of POTS by that Drs team) are all down to Anxiety. There is no science they would accept on my side to say any different?

It is a strange world we live in.
Click to expand...
Tina, as an urgent matter, I would seek a supportive private doctor. A single diagnostic appointment might cost £20-100, but at least you'll have an official diagnosis and you can request a letter to show for it.

I know Dr Worthley in Brighton was taking new patients for £20 per 15 mins. He apparently writes very good letters in support of patients. There are others with similar interests. Natural Health Worldwide lists specialists near you. An OT's report can be very persuasive. You needn't spend thousands, but getting that diagnosis with a supportive letter will be a huge first step towards allaying fears of FII.

TYMES will, of course, provide lots of info and support. As I recall, they're keen to point out that schools have to make reasonable adjustments for disabled children under the Equalities Act 2010. They have a statutory obligation not just to be tolerant but to go out of their way to make adjustments. Mention the Equalities Act and they usually back off.

A child is disabled if there's lack of functional capacity, not if they have a specific diagnosis. Even anxiety can cause disability under the law. No matter his diagnosis, he's covered by the act.

At this stage, I think they're just trying to scare you because your son will be affecting their attendance scores. But definitely take an advocate with you, if you can. The local CAB might be able to help, or various charities.
 
At this stage, I think they're just trying to scare you because your son will be affecting their attendance scores. But definitely take an advocate with you, if you can. The local CAB might be able to help, or various charities.[/QUOTE]
Right in one Adam! Hold steady, Tilly, help is at hand.......
 
Tilly said:
There is something more here? I have been wondering about this since the time of the fridge incident when I first noticed he walked on tip toes and couldn't hold the glass filled with water. He also blacked out going up the stairs.
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Hi Tilly, I'm sorry you and son are having such a difficult time.

Has any medical/health practitioner examined your son re: his walking on tip toes?

This really is just a thought, but I just wonder if the tendons in the back of his leg were too short due to growing and perhaps exacerbated by inactivity and the position of the feet at rest. I vaguely remember reading of another adolescent with ME with this problem but I'm sorry I can't remember where. My healthy son, as a teen, was given stretching exercises to do by his podiatrist because his bones had grown faster than the tendons in the back of his leg and his feet didn't flex as fully as they should.

I don't know if this is the case, it could be something else, and perhaps you have already had this looked into. Please just ignore me if my comment's not helpful or appropriate.

Very best wishes for the meeting and for finding better support.

edit - grammar
 
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adambeyoncelowe said:
You needn't spend thousands, but getting that diagnosis with a supportive letter will be a huge first step towards allaying fears of FII.
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I think this needs care. A letter with a diagnosis from a private practitioner, especially if in the alternative medicine network is likely to raise the suspicion of FII rather than lower it. I realise this is a no win situation but it would be a pity to make things worse.
 
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