Information for Parents and Carers of PFS Sufferers
Our Danny suffered from Posterior Fossa Syndrome as a result of his brain tumour and we found that there was very little information available for us to look at or details of where to turn for help. One of our aims as a charity is to provide some information regarding this syndrome and to offer support for you as parents/ carers and to your children.
Posterior Fossa Syndrome (PFS) is a group of neurological symptoms that can occur primarily in children after brain tumour surgery to remove tumours, such as a medulloblastoma, in the areas of the cerebellum and brainstem, without evidence of a stroke or injury to the brain tissue.
Symptoms generally appear 1 to 3 days after surgery and can persist from months to years.
Symptoms of PFS can include mutism, weakness in one side of the body, ataxia (unsteadiness/poor balance) emotional lability, poor muscle tone, facial paralysis on one side, an eye that turns inwards (gaze palsy) and incontinence.
Cerebellar Mutism tends to include all of the findings of Posterior Fossa Syndrome and the child has little or no ability to speak and in severe cases the child may be unable to drink or eat. A few will continuously drool as they do not have the coordination to even swallow their own saliva. However, these symptoms can be overcome.
The exact cause is not known. Research shows it could be due to the location of the tumour and the type of tumour (medulloblastoma being the most common) and it is more likely to occur when the tumour is larger. As PFS mainly effects children under the age of 15, findings suggest that the developing brain is especially vulnerable.
It does get better. How much better and how long it takes is variable for each child. For many children, it will take months to years for them to regain their physical abilities. Most, but not all, will be able to walk independently. A significant percentage will have continued issues with balance, coordination, fine and gross motor control. The mutism generally lasts 1 to 6 months with speech returning although this may not be of normal quality or quantity. Mutism has been reported to be as short as 6 days or as long as 52 months.
The return of motor function tends to be in stages that follow the normal development of a baby. There will be the return of head control, then trunk control, then on all fours followed by walking. Improvement can be seen even years from diagnosis.
Some children suffer from emotional, social and behavioural issues which can persist for at least 1 to 2 years following surgery. Children can be irritable and uncooperative which can be a result of the initial stages of recovery from brain surgery similar to that seen in children recovering from a brain injury. It could be due to the fact that the child is scared or unable to communicate especially if they are suffering from Mutism.
PROVIDE FAMILIARITYHospitals may allow a variety of items in the room with the child which will provide comfort such as a favourite toy, teddy, music or family photos.
TALK TO YOUR CHILDImagine waking up and not being able to move or talk. Most of the children suffering from PFS have normal hearing and are comforted by hearing a familiar voice just talking or reading a favourite book.
PHYSICAL CONTACTMany children are consoled when they are held or touched.
PREVENT OVER-STIMULATIONMany of the children are hypersensitive and become more agitated with increasing stimuli such as bright lights and hallway noise.
FINE MOTOR ACTIVITIESStringing beads or pasta, playdough, putting pegs on objects or using scissors for cutting out shapes.
VISUAL MOTOR ACTIVITIESThrowing and catching games are very useful starting off using balloons which are slow and easier to manoeuvre.
Physiotherapists provide exercises aimed at maximising strength and mobility. Children with weakness or ataxia also need adaptive devices including braces and walkers. This can be continued by parents at home or at convenient times of the day outside of physiotherapy sessions.
Occupational therapists provide guidance for completing activities of daily living despite new physical limitations.
Speech and language therapists assist children with impaired cognition as well as dysphagia issues (problems with swallowing). Cognition is another word for thinking and the process that describes how we understand and interact with the world. Cognition also describes how the brain perceives and expresses experiences. When a person is diagnosed with impaired cognition, it means their skills and abilities may have diminished or disappeared as a result of a medical problem.
The Danny Green Fund can help by providing a grant to fund various therapies such as neuro-physiotherapy, hydrotherapy, horse riding therapy or a piece of multi sensory equipment. We can also provide a one-off grant for a piece of equipment such as a special needs buggy to assist the recovery of a child who is suffering from Posterior Fossa Syndrome (PFS).
As we are sure you have been told, you are on a roller-coaster journey and you will have tough days ahead, but don’t give up! Everything you do to help your child will help them to recover but it takes time and over time you will see them progress. Give yourself credit for helping them and getting through this. The highs are wonderful but you will also face lows, however, with love, support and encouragement you will help your child to slowly recover. Each small step leads to giant strides over time.