Sunday, January 30, 2011

Children with ME/CFS

by Mike Turris on Saturday, January 29, 2011:

Since I posted an article written by Jolene Cargill about “Parents of sick children living in fear” on January 23rd, I’ve received many mails concerning this issue. I would like to summarize all the information and questions I’ve received.

MAIN FACTS:

a) Parents who have been diagnosed with ME/CFS are worried about the possibilities their children can have of inheriting the illness or at least the genetic predisposition to have it in the future.

b) Every time their children get ill, parents go into a “state of panic” until they see that their children recover.

c) When they realize that their child has not recovered completely, they see ME/CFS signs in their child every day.

Be aware that a common complaint of teenagers is “being tired”. If your child is an adolescent, remember that normal hormonal alterations in adolescents might result in “fatigue”. All the body energy goes into growing concerns and in having a lot of fun with their friends. So, if during the day they lie on a sofa watching TV or playing with their Play Station but in the evenings they can go out with their friends and dance till very late, don’t worry. They are absolutely fine.

WHAT MUST BE DONE? Read more>>

See also :A Case Definition for Children with ME/CFS

2 comments:

karina said...

I appreciate what your trying to do, but you information is misleading in many ways and lacks a deeper understanding of the issues involved . I urge you not to spread misleading information like you should hide occasional lack of assistance, or ME/CFS from teachers or schools ! A child, even lightly affected by ME/CFS, cannot not attend school without any special attention and will have issues such as sensory overload, concentration problems, problems with information processing, memory difficulties, which alone could lead to problems and the false believe the child has behavior problem.

A child moderately affected will needs a reduced curriculum (usually not more than two subject) or needs to be home schooled, or both. Special accommodations have to made for learning hours and testing, since children with ME/CFS have usually what is called a window , hours where they can concentrate and do not suffer from brain fog, usually in the afternoon. ME/CFS in children is very variable, one moment everything works fine, the next there can be severe headaches, OI, dizziness, severe brain fog, severe sensory overload, complete exhaustion, and a complete inability to understand any kind of instruction.
Flu out brakes in school have to be considered and all sorts of problems which you have not even touched base with. It is a very complex and difficult situation, which can be only understood if you have either a child with ME/CFS and lot of experience, or you have a in depth understanding like Jane Colby, who is a former head teacher, ME/CFS sufferer herself and the leading specialist concerning children with ME/CFS and school issues.

Please go to www.tymestrust.org if you want to get an in depth understanding. They also work with well informed doctors, who really understand the immense complexity.

Manging school attendance of children with ME/CFS is an integral part of treating the disease and is of up most importance, to avoid worsening the child's condition which can lead to deterioration and severe ME.

karina said...

I appreciate what your trying to do, but you information is misleading in many ways and lacks a deeper understanding of the issues involved . I urge you not to spread misleading information like you should hide occasional lack of assistance, or ME/CFS from teachers or schools ! A child, even lightly affected by ME/CFS, cannot not attend school without any special attention and will have issues such as sensory overload, concentration problems, problems with information processing, memory difficulties, which alone could lead to problems and the false believe the child has behavior problem.

A child moderately affected will needs a reduced curriculum (usually not more than two subject) or needs to be home schooled, or both. Special accommodations have to made for learning hours and testing, since children with ME/CFS have usually what is called a window , hours where they can concentrate and do not suffer from brain fog, usually in the afternoon. ME/CFS in children is very variable, one moment everything works fine, the next there can be severe headaches, OI, dizziness, severe brain fog, severe sensory overload, complete exhaustion, and a complete inability to understand any kind of instruction.
Flu out brakes in school have to be considered and all sorts of problems which you have not even touched base with. It is a very complex and difficult situation, which can be only understood if you have either a child with ME/CFS and lot of experience, or you have a in depth understanding like Jane Colby, who is a former head teacher, ME/CFS sufferer herself and the leading specialist concerning children with ME/CFS and school issues.

Please go to www.tymestrust.org if you want to get an in depth understanding. They also work with well informed doctors, who really understand the immense complexity.

Manging school attendance of children with ME/CFS is an integral part of treating the disease and is of up most importance, to avoid worsening the child's condition which can lead to deterioration and severe ME.

LinkWithin

Related Posts with Thumbnails