Management of AOPVFS in Children

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CFS/ME in Children

Paediatric Consultants treat children up to the age of sixteen so in this context I am referring to children in the same age bracket. After the age of sixteen patients are considered to be adult. Quite clearly, however, a lot of the problems with regard to education would apply to younger adults; through the university years, and anything up to twenty five years of age.

In essence the treatment of CFS/ME in children is exactly the same as with adults but there are, quite clearly, more difficulties as I can’t use as many of the medications as I might with adults.  The only antidepressant that I would use under the age of sixteen would be Amitriptyline. Therefore if we are going to use other sedative tricyclics at night like Doxepin or Trimipramine, or the more controversial medications of Prozac,   Seroxat and/or Venlafaxine or Cipramil, they would have to be given on a ‘named patient’ basis and I am reluctant to do that unless it is absolutely essential. 

A ‘named patient’ basis means that the adolescent patient and, of course, his/her parents are  fully informed of exactly what these medications do and what they don’t do, the possible problems and all of the side effects. Also, and most important of all, this is unknown territory and it is not known what long-term effects these medications may have on the central nervous system. The potential problems, therefore, have to be carefully weighed up with the potential benefits. 

I have always justified the use of these medications to myself by saying that, when  a fourteen year old has had CFS/ME  for two, three or four years and is not going anywhere, in terms of recovery, and has not responded well to Graduated Exercise Therapy and Cognitive Behaviour Therapy, then the medications are justified.  The long-term damage of being long-term sick is profound. 

The youngest patient that I have ever had was a little girl of five who had a history of internalising her own stressor factors that she had had ever since she could walk.  She was one of those little girls who are very bright, always want to do well at school,   rush at their homework, and even do extra. She would worry about having the right books for school, was very fastidious, wanted it all correct, was very friendly, very outgoing but also a worrier. She worried about other people’s health, and she worried about her friends being ill.  It is clear, also, that she got all of this worry from her mum who, in turn, got it from her mum; it went back through at least two generations.  I never met grandma but I was led to believe that she was probably of the world’s worst worriers ever!  This little girl’s classic problems of fatigue, headaches, muscle aches and pains were there and, of course, the profound sleep disturbance and waking unrefreshed.  It was clear that she was not progressing.  She had been ill for about a year before I saw her and was literally going nowhere.  After a lot of soul searching her mum and dad agreed to try Amitriptyline. They were not very keen on medications and of course I totally understood that.  The Amitriptyline was given very cautiously. It simply did not help her sleep pattern and when we got up to 20mg at night, she then developed a rapid heart rate and we had to stop it.  Again, reluctantly, after a few more weeks we tried a sedating anti-histamine but that gave her diarrhoea so we decided that we were not going to use any more drugs and, at the moment, I am totally stuck.  The problem here, of course, is that the little girl is now six; she wants to be at school but can’t manage it; she wants to go and play with her friends but can’t manage that. She doesn’t sleep well, is crying a lot and she is irritable and depressed. The parents are both very worried and concerned but you can’t pin her down; you can’t forcibly make her not do the things that you would want to curtain to allow her symptoms to settle.  She is on the go all the time until her energy runs out and she collapses in a heap.   We have got the full support of her friends and family and CBT is just not a problem; but this little girl tries to do everything she possibly can and fails, constantly, through no fault of her own. So, I am currently struggling here.  

I must admit that it is always a struggle to help children and the set of problems that I have just outlined is reason for this. Children don’t want to be restricted. They don’t want to stop doing the things that make their problem worse.  They want to watch television, want to play with their computers, they want to be on-line with their friends, they want telephones, want to be sending text messages.  They want to be on their Playstations, reading and going to school.  Parents, of course, want their children to get better and start telling them not to do this, that or the other and this produces resentment in the children, who simply don’t fully understand why they need to adopt this programme. 

With that to one side, we are immediately left with having to solve the stressor factors just the same as we do with an adult.  The problems are probably a little easier to resolve in children than in adults. At least they have no responsibilities elsewhere, other than to themselves.  Over a period of time they come to understand that being fastidious, pernickety and obsessive is bad and they can’t always get their work 110% correct.  Sometimes of course, it is bullying at school, peer pressures, family pressures, which again can, usually, be removed and the success rate in treating children is probably greater than that of adults.  My success rate in treating children is about 85% to full recovery or recovery to a very satisfactory level.  This is not anecdotal but was published over a year ago now in the Archives of Diseases of Children. (Vol 88 pages894-898). {Click here for a direct link}     

A little bit of bribery and corruption goes down quite well.  Rewards for not watching television, for going to bed a little bit earlier than usual, for not being late and not playing on the Playstation all day, can be given in the form of more permitted recreational things like painting sets, artwork, hobbies and model aeroplanes. In one case I can remember a young man did everything we wanted provided he was allowed to have a .22 air rifle.  Before everybody throws their hands up in horror, he was only allowed to shoot this on an air rifle range to which he was taken most nights.  Other games that are not so intellectual like Subbuteo, Lego, construction kits etc. are also better than fast visual games which, I must admit, I am not over keen on anyway. When you are playing on a Playstation you have got noise, music, fast moving visual images and, of course, bilateral hand dexterity. Therefore,you have got four level processing, which drains your energy four times more quickly than anything else, so they are, effectively, lethal.  Also, once you go past your concentration span on a Playstation or a computer you can’t do your homework. 

Apart from the obvious priority of getting somebody better, their health comes first and in my book happiness a good second.  A priority third has to be their education and it is usual that we have to restrict the amount of educational work.  The amount that you reduce it by is, of course, dependent upon the morbidity of the child, and the child must be allowed to have some fun, maybe, at the cost of a couple of lessons at school.  I usually spend several weeks or months negotiating with the family and the child exactly how much work we are able to achieve and how much homework they are able to do, but the same principle as in adults applies. Do a little bit, stop, do a little bit more, rest, change the modality of the function, mix intellectual activities with physical pottering. It works quite well.  Homework, reading and studying should never be done for more than fifteen minutes per hour, certainly at the beginning of the process and it may even be less, depending upon the difficulty and the intellectual content of the reading.  It is also true to say that study can be more successful if some or, even much of the input is audio. In other words, rather than visually reading something the child or the young adult can have their education read to them, and perhaps the homework is put onto a tape. You can go to WH Smith and get GCSE coursework on a CD, or on tape, as an alternative to books or videos.  It is also of interest to note that, apart from doing visual mathematics, which is, in effect, reading doing mental maths goes to a different part of the brain to that dealing with reading, and can be processed separately.  

If the level of morbidity suggested that the child could attend school half-time then in my opinion it is better that they attend all of the lessons that are necessary for a part-time curriculum.  For instance, if they are doing English, Maths, one language and two Sciences then they should attend all of those lessons, rather than miss the lessons held at fixed times when they are not in school. It is better to go in at differing times and complete a reduced number of subjects that are studied, rather than miss lessons in the prime subjects.  Reduced subjects, of course, should not be the core ones English, Maths, Science and one language. On occasions, I have suggested that if they are only capable of doing one more subject, in addition English and Maths, (which are pretty  fundamental), then it might be one that the young child enjoys, rather than what would be ‘good for them’. Art, Resistant Materials (woodwork etc) or something of a more practical nature, would be preferable, rather than the school insisting that they do French or Science. 

It is also important that these subjects should be done by not reading for the whole of the lesson. So if an English Literature lesson was an hour and ten minutes long it would be better that the child simply attended that lesson and took in a tape recorder to record the lesson, didn’t make any particular notes, took the tape recording home and learnt in little chunks of fifteen minutes or so at home or at the weekend.  A little bit and then rest, a little bit and do something else works much better than prolonged episodes of study.  You can, of course, work out the child’s visual processing span in a fashion that is identical to the one that is outlined elsewhere on the adult section. 

As the child continues, hopefully, to improve, then other subjects can be added. However,  if by the time the child is getting better you have now approached the end of Year 9 or 10 and they have missed two or three years of study, it would be unreasonable, and indeed unfair, to introduce a core subject that needs a lot of background education over a number of years.  It would be better to put in less academic studies such as Art, Music, IT which can be picked up more easily.  

It is quite clear to me that patients with these problems require a lot of background support from me.  Fellow pupils and members of staff at schools are not always particularly sympathetic or understanding, so the patients need to be frequently followed up.  I find that I write a lot more letters to schools and to support agencies than I do with adults. 

As I have already said, the primary object is to get the patient well and happy. It is also true that you can get your education at any time.  It is not ideal to postpone it and this is not something that I am trying to suggest is easy but it is also true that the young adult, the young child, should have a high priority in sustaining their friends, and making sure they don’t ‘get lost’ from school. Even if they are not able to attend school very much  they might be encouraged to go in for lunch or break times or go to a non-academic class, as suggested earlier, or for a subject that doesn’t require too much intellectual input. No disrespect is, of course, intended to highly valued teachers in these subjects – it is just that the style of learning involves processing by different parts of the brain. It is extremely important that social bonding and ties are maintained and that we don’t lose friends.  They should be encouraged to visit each other and talk   rather than simply connect on the internet, which I find is quite common these days.  I know  lots of kids who are sick, who can’t go to school and spend their whole day communicating by ‘MSN messenger’, chat rooms etc., literally frying their brains to bits.  

It is also true that if somebody doesn’t get better until they are sixteen and only does a couple of GCSEs they can leave school and go to further education and catch up with other subjects, hopefully without losing everything.

Whilst my success rate in helping children is high I also have to admit that there are several children who simply feel they cannot undertake this programme.  As I haven’t studied the figures I am not sure, but it must be around 10% who feel they simply can’t do it. They can’t cope with these television, computer and Playstation restrictions.  Whilst it is also true that CFS/ME is bad for anybody, it can be, and often is, seriously bad for children. They lose a great deal and it is a great shame when you see a very bright, studious, young child who has great ambitions which may have to be put to one side.  But at least we can get them well, and then we can help them   to fulfil their best potential.