Functional Neurological Disorder – Paediatric Blog
FND or Functional Neurological Disorder although has only recently been used as a term or diagnosis with children, it is a condition which I have been assessing and treating throughout my career of working in paediatrics. Back in the 1990’s we really didn’t understand the mechanism or nature of the condition and the children would have been referred to physiotherapy as having an “illness behaviour” or more harshly “refusal syndrome” as that is what it appeared that they had. I would have been referred a child, who could have been of any age, who had reasonable but inconsistent power in their legs, no muscle wastage, pain but no consistent pattern, they could no longer walk but in some instances when asked to come and sit with me at a table they may have been able move across a room to me. It was fascinating to see; but difficult to manage and heart breaking for the families and traumatic for the child. To have a label that you were refusing to move when actually your body would just not let you do want you wanted to do!
At Neurotherapy Worx we are now seeing a large number of adults with FND and we are having some favourable results. Back in November a family approached us as their son, Sam, had been recently diagnosed as having FND by Alder Hey children’s hospital following 2 recent admissions into hospital. At that point he was using a wheelchair full time for his mobility and performing sliding transfers between the bed, wheelchair and toilet. He was no longer able to attempt stairs and had not been in full time education for 8 weeks. He was only 12 years old and had only just started in secondary education.
The previous year he had come over the handlebars of his bike and there had been a change to his personality, he was having difficulties in regulating his moods and interacting with his family. He had been an avid swimmer and had also started recently boxing. In the September he had developed a virus which had given him joint pain in his knees and arms and his walking had become difficult. He subsequently had a variety of hospital admissions due to the severity of pain and increasing weakness and reduced mobility. On his final admission to the local children’s hospital, he was reviewed by the psychology team who gave the diagnosis of functional weakness. All other tests had been negative. He had been given a support worker / home help at home to encourage him engaging more and manage his moods better.
Sam had been a toe walker when younger, he had previously dislocated his kneecap, fractured wrist, torn his rotator cuff and chipped a bone in his elbow. He also had had a few falls causing injuries to his ankles over the years and parents regarded him as accident prone!
His goals were to be back on his feet and independent again, be able to go back into his bedroom upstairs and to be able to ride his bike.
A physiotherapy assessment especially with young people is very functional, based on movement, throwing and catching balls, kicking balls in sitting or standing for example. During the assessment he also used a static wheelchair bike called a theratrainer and managed to go 0.5 Km forwards and the same distance backwards. We also stood twice at the parallel bars and stepped with one leg and moved his hands on the bars whilst weight bearing independently. Over a couple of sessions it was evident that he was hypermobile especially in his knees, which would cause underlying joint pain and the frequency in falls and history of injuries. His physiotherapeutic goals were around standing, walking, dynamic standing balance, lower limb strength to protect his knee and ankle joints from further damage and general cardiovascular exercise to improve stamina.
Initially twice weekly appointments were initiated. As Sam engaged with the sessions and started doing more at home and engaging with local services – OT and physio; these went to weekly. Each session was different depending on his pain threshold that day and his general psychological wellbeing; but they all had a theme of lower limb strengthening exercises in lying, use of the theratrainer and badminton. Each being progressed and alternative activities were also included whenever possible. This would include step ups, use of free weights, balloon tennis, use of large therapy ball, outdoor badminton, balance work, use of interactive D-wall and treadmill. Within some sessions he would refuse to do any activity; in some sessions if there was a significant achievement, there may have been a significant emotional response would mean we would have to stop the session. When Sam worked with the psychologist, we were advised not to discuss walking or standing at the parallel bars. I also found that it was difficult to introduce new activities to the sessions. He worked best if new ideas were suggested or he was encouraged to develop his own treatment plan each session, sometimes he would try new activities at home first; he then started to enjoy coming to physio to show what he had achieved goals and he also enjoyed when there was a competitive nature to the sessions or us working together.
He was walking independently after 5 months of intervention. This initially started with standing in physiotherapy sessions which he continued to practice at home. Then one session whilst in the gym he just got out of his chair and started to walk around! He told me that he had started walking about 5 metres at home and pushing his empty wheelchair to get around the house and into the kitchen. We continued the weekly physiotherapy session to consider endurance ready to return back to high school and education around protecting his joints and improving joint and soft tissue awareness. Sam continued to work on the theratrainer, he enjoyed beating me at badminton outside, continued with the lower limb muscle strengthening exercises; also included balance and upper limb strengthening. A month later we suggested trying steps ups in the next session, the week after her reported that he had tried the stairs himself at home! That month he was able to move back into his newly decorated bedroom.
The next month we did have a set back in that Sam returned to clinic one week on crutches. He had gone over on his ankle at a friends house and damaged the soft tissue. With a course of non-thermal laser and continuing with exercise in weight bearing to encourage proprioception, joint awareness, he improved and quickly came off the crutches and continued improving his mobility and stamina.
Over the next 3 months he generally became more able to be involved in age-appropriate activities, he went to a local gym, he was enjoying family holidays and swimming whilst away and even started back cycling in his local area, his final goal!
This is what Sam’s mum shared at his last session in a thank you card:
Thank you for all your help and support. You’re the only person Sam has worked with and trusted throughout this whole process and if it wasn’t for your dedication we wouldn’t be here today. Can’t thank you enough Clare, Joel, Sam and Neve XX
We can’t thank Pam and the team enough for the patience and dedication to helping our son get back on track and to help him walk again. They helped him work at his own pace and listened to what he needed and wanted to work on. The activities were made to be fun and interactive.
If we ever need help again we would return back for all the help we would need.
Sam’s final words on his physio:
I would like to thank Pam and the team and all their equipment for helping me over these past 10 months to help me get back on my feet and achieve my goals of walking and being independent again
It is wonderful to see someone with a long-term condition achieve their goals and return back to normal family and their social lives. Although not everyone is happy to be in school Sam really looked forward to going back and joining his peer group after missing on formal education for 12 months.
