Wednesday, 21 June 2017

Reducing Baby Brain Injuries.

A very interesting report from the BBC this morning concerning the rates of brain injuries sustained by babies in the UK during labour.  This report really resonated with me because 30 years ago my own son was born with severe brain injuries partly due to a foetal heart trace showing severe distress, not being monitored correctly and therefore not acted upon.

As I say, my son's birth was 30 years ago and I was aware of other families at the time who's children suffered similarly.  Although there was a great deal of publicity at the time surrounding my son's injuries and we knew from the lawyers who successfully sued the North Staffordshire Health Authority on our behalf that the medical and nursing professions were aware of these problems nationwide, it seems that it has taken until now, with God only knows how many children's lives decimated, for someone to do something about it!

As readers of this blog will know, I run Snowdrop for Brain Injured Children, - a child development agency who provides programmes of developmental stimulation for brain injured children.  We have been operating now for 10 years and during that time I have heard story after story from families who say that their baby's heart monitor was either ignored, or not interpreted correctly.  This amounts to hundreds of children that I can account for where parents have legitimate questions to ask in this area.

According to the BBC's report, the major issues are "problems with accurate assessment of foetal wellbeing during labour and consistent issues with staff understanding and processing of complex situations, including interpreting baby heart-rate patterns (on traces from CTG machines)"

This is a shocking situation in it's own right, but the fact that I can account for this situation being prevalent for the past 30 years makes it even more disturbing.  Children's lives are being decimated and therefore so are the lives of their parents and wider family.  Let's hope that this report brings an end to the situation, - but I very much doubt it!

Wednesday, 14 June 2017

West Syndrome - Infantile Spasms.

Today we met a lovely new family from Lithuania who have a 12 month old little boy who has West Syndrome.  He has a complex combination of seizure activity, including 'infantile spasms.'

Despite 3 courses of steroids the spasms persist and indeed he had one during his initial evaluation at Snowdrop today.  One of the drugs he is on, 'Sabril' has almost certainly contributed to the demise in his visual function but the spasms and steroids combined have caused developmental deterioration.  I was able to see videos of him prior to his problems coming to light and he was a vibrant, interactive little boy, who was no comparison to the little boy we saw today.  Hopefully as the steroids wear off, some developmental function will return but we also hope that the programme of stimulation we are prescribing will have a beneficial effect, - helping to rebuild abilities.  I will keep you posted.

Saturday, 3 June 2017

Autism

What is autism? Autism is described as a 'spectrum disorder' which means that the problems experienced by a child at one end of the spectrum can be totally different in severity and complexity to those experienced by a child at the other end of the spectrum. It is actually a collection of symptoms which when they co-occur, we call autism. One of the distinguishing symptoms of autism is sensory processing problems and these can take many forms. Some children can be 'oversensitive' in terms of vision, hearing, touch, whilst others can be undersensitive. In some children the sensory system creates it's own stimulation, much as it does visually when a migraine sufferer experiences a visual display and these children see, hear and feel things which aren't present in the environment. Some children experience synethsesia where sensory modalities become 'cross-wired' and noises may for instance be experienced as colours. Snowdrop's approach has been very effective in treating the sensory processing abnormalities experienced by many children.

Another huge factor which many children with autism experience is problems with controlling attention. If you imagine attention as a 'spotlight' which has smaller beams of light at either side of it, then in a normally functioning person, a stimulus moves into one of the smaller beams and this then alerts the spotlight which immediately moves to focus on it. In a person with autism, the spotlight may be too powerful and the smaller beams not powerful enough, meaning that the child over-focuses attention on one stimuli and the attention of the child can be very difficult to capture. In another case, the attentional spotlight may not be powerful enough, meaning the child has difficulty maintaining attention on any stimulus. Again, Snowdrop has vast experience in dealing with such problems and many children have benefited from our approach.

Children with autism produce behaviours based upon the world they perceive. How can a child make eye-contact when he finds it threatening in sensory terms, or cannot control attentional resources? How can a child understand and produce language when he finds the frequency ranges which speech sounds occupy to be excruciatingly painful, or if he cannot regulate his attention to expose himself to the conversations going on around him, therefore not exposing himself to those speech sounds and not processing them? How is a child expected to socialise when he finds the world around him to be a grotesque chaos of sensation? Is is any wonder that children with autism are often described as 'being in their own world?'

The primary aim of the Snowdrop programme is to normalise sensory processing, so that the input pathways to the brain are carrying the correct information and the little one is able to see, hear and feel the world as you or I do. It aims to restore normal control of attention, so that the child then begins to learn appropriately and produce more balanced developmental performance through the output pathways of language, socialisation and gross and fine motor performance.

If you want to find out more about our approach to autism, come and speak to parents who have children on our programme. We have a private Facebook group, which you need an invitation to join. Simply email us at info@snowdrop.cc expressing an interest and giving us the email address which is connected to your Facebook account and we will send you an invitation. Membership of the group is limited to two weeks for parents whose children are not on the programme or our waiting list.

Tuesday, 23 May 2017

4th Assessment for a Little Girl with Cerebral Palsy through Bilateral Haemorrage.

Today we welcomed back a 4 year old little girl and her family today for her 4th assessment. She had suffered a bilateral haemorrhage, leading to cerebral palsy.  She had suffered the bleeds shortly after birth and the doctors had told mum and dad that 'if she survived' and they did not expect her to, she did not have a bright future and would most likely have severe disabilities.  However, she is doing very well indeed. 

At four years of age she is now top of the developmental ladder in visual development being able to read via both sight recognition and through phonological building of a word from it's constituent graphemes / phonemes.  Auditory development which was plagued by sensitivity around 2.6 Khz is now also at the top of the developmental profile.  The sensitivity issue is important because although human hearing goes right up to 20,000 Hz, the 43 speech sounds of the English sound system are compressed within a frequency range of 450Hz - 4,500Hz.  A sensitivity at 2, 500HZ, which is right in the middle of speech sound frequencies is likely to cause problems in processing speech sounds and therefore in producing those speech sounds in the form of language.  The sensitivity has been dealt with by the activities of the Snowdrop programme and she now understands language in advance of her age and produces perfect, grammatically correct language.

Yes she has some problems with visual acuity but when there is also a retinal bleed that is almost inevitable. Gross motor development has progressed from 18 months to the 36 month level, which considering she has been on programme for 16 months, is phenomenal progress, although we have to work on quality of movement. A very intelligent little girl here, who will go a long way!

Monday, 22 May 2017

Today's Assessment, 22nd May 17. West Syndrome and CVI

Today we welcomed back a 3 year old little boy and his family for his 4th assessment. He has West Syndrome and CVI and has been on the Snowdrop programme for 15 months.

 West Syndrome consists of group of symptoms characterized by epileptic/infantile spasms, abnormal brain wave patterns called hypsarrhythmia and intellectual disability. The spasms that occur may range from violent jackknife or "salaam" movements where the whole body bends in half, or they may be no more than a mild twitching of the shoulder or eye changes. These spasms usually begin in the early months after birth and can be difficult to control, requiring steriod treatment.

Cortical visual impairment, (CVI) is a form of visual impairment caused by the brain not being able to process information from the eyes passing along the visual pathways in the brain.  In my observation there are varying forms of CVI, caused for instance by the thalamus not exciting the cortex sufficiently to process visual stimuli, to actual injury to the occipital cortices.  Another possibility is that vision becomes 'de-automated!'  Vision is something which just happens to us, we cannot help but see, - it is an automated programme, however I see children who have to be reminded to 'use their eyes!' - It comes in many forms.

With today's little boy we saw clear improvements in the use of vision, which is now 'switched on' for much of the time. He is also understanding more language, responding to simple instructions and his former auditory sensitivity is now gone. His tactile processing problems are resolved and he is now 'high kneeling' and his upper body control is good enough for us to begin working towards developing a standing balance. He also demonstrated that he now has 2 words of speech. He is though, very busy and we have to work further on slowing him down a little. His biggest change in my eyes is in sociability, he now really tries hard to interact. Well done to his parents who work so hard with him. It was great to see you again.

Sunday, 21 May 2017

Autism Symptoms Improved by Vitamin D Supplementation.

This is encouraging and could feed directly into the treatment of children with autism who are part of the Snowdrop programme

"This study is the first double-blinded RCT proving the efficacy of vitamin D3 in ASD patients. Depending on the parameters measured in the study, oral vitamin D supplementation may safely improve signs and symptoms of ASD and could be recommended for children with ASD. At this stage, this study is a single RCT with a small number of patients, and a great deal of additional wide-scale studies are needed to critically validate the efficacy of vitamin D in ASD."

With thanks to Wiley online library and the Journal of Child Psychology and Psychiatry.

Wednesday, 5 April 2017

Hypoglycemic brain Injury

Yesterday we welcomed back a family with a 5 month old little boy for their first Snowdrop reassessment. We first saw this little one when he was just 5 weeks old and he had suffered hypoglycemic brain injuries. I was so pleased today to see that he was doing so well. In 5 areas out of 7 he was age appropriate, (better than his age level in 2 areas). Such a vibrant, vigorous little man who has come a long way in a few months.  His progress shows just what can be achieved through stimulating the plasticity of the brain and leading that plasticity down the developmental pathway.

Today, Wednesday the 5th of April, we met a lovely family with a great little boy of 18 months who has acute brain injuries. He is a terrific character and a playful little chap who feel has a great deal inside of him waiting to come out. Such a friendly playful little guy. Can't wait to get him started.

Monday, 3 April 2017

Treating Global Developmental Delay.

Today we welcomed back a 2.5 year old little boy for his fourth assessment. He had developmental delay in many areas prior to starting the Snowdrop programme, but now he is age appropriate in visual development in that he is able to recognise familiar people in photographs and recognise himself in a mirror.  He is also age appropriate in social development where he is understanding the emotions of those around him, throwing age appropriate tantrums and beginning to cross over from 'parallel play' into joined play with other children.  He is not far behind in auditory development, following instructions and clearly understanding more complex sentences and more and more vocabulary. He is also on the verge of walking, it is just a matter of confidence and time. Hand function has also improved dramatically. - His left hand was only half as able developmentally as the right, but now it is difficult to separate the two hands. A very different little boy to the one I met a year and a half ago.

Thursday, 16 March 2017

Autism and ADHD in the same child.

Today we welcomed a new family to the programme with a 5 year old little boy with a dual diagnosis of autism and ADHD. The poor little one literally could not keep still and was in a world of his own, but occasionally he would rise to the surface and there would be moments of lucidity where you could see his intelligence. Currently he is lost in a sea of hyper-activity and consequent lack of attentional control.

His world must be turmoil and I watched as he would try to do three different things at once.  Visually he liked to watch moving objects, particularly objects which can be indicative of the under-activity of the visual magnocellular pathway, which enables us to detect movement.  This is why many children with autism are fascinated with looking at their fingers in front of their eyes or with flapping their hands, or with opening and closing doors, - it is to create movement, - a desperate attempt to feed a pathway which is under-active.  Fortunately, we know how to activate this pathway, - it is with exposure to yellow filtered light! (Ray, N. J. et al, (2005). Yellow Filters Can Improve Magnocellular Function, Motion Sensitivity, Convergence, Accommodation and Reading. Annals of the New York Academy of Sciences. 1039, 283 – 293.

Tuesday, 14 March 2017

Infantile Spasms

Today we welcomed a 20 month old little boy who has suffered with infantile spasms back for his first reassessment.  He has now been on the Snowdrop programme for 6 months.  During that time he has made some nice progress in some areas, most notably in gross motor development where he has developed a sitting balance and has sufficient 'cephalo-caudal development' to warrant us beginning to work on a standing balance.  Visually his eyes are straighter and he is making more sustained eye contact and auditorially he is now more in tune with the human voice and is paying attention to the conversations going on around him.  In terms of fine motor development he has gone from not using his hands at all, to the 4 month level of trying to reach and bringing his hands into the midline and intertwining his fingers.  So there is some nice progress to be seen, well done to a hardworking mum and dad.

Problems do remain however in that visually a great deal of his time is taken up in self stimulation of either the magnocellular pathway, (which enables us to detect movement), by waving his fingers in front of his eyes, or of the visuo - vestibular pathway, where he is constantly swinging his head from side to side.  He is also very fidgety, always on the go, which is detracting from his ability to use his attention consistently to engage with his environment and the people in it.  Instead, he is largely living in a world of self - stimulation and internal 'activity and agitation' and this is our next challenge with this little one, to normalise the sensory systems which are keeping him in a world of his own and to take his level of internal arousal down a peg or two.  Only then will we see him beginning to engage with and to make sense of his world.

Onwards and upwards.

Monday, 13 March 2017

Fighting Cerebral Palsy on the Snowdrop Programme.

Today we welcomed back a 4 year old little girl who has a diagnosis of cerebral palsy.  This was her third Snowdrop programme assessment and although she still has problems in the way she uses her vision, visually she is age approriate in terms of cognition and auditorially there has been a huge leap to the top of the developmental profile. She is also now walking and there are clear improvements in her movement and gait from last time. Her functional language, to match her auditory development is functionally complex and at the top of the profile and there is a huge improvement in clarity too. We still have a few issues in hand function but in social development again she is at the top of the profile. A little girl with a bright future!

Sunday, 12 March 2017

Snowdrop. - Who are we and what do we do?

Our story begins 29 years ago with the birth of our own son, Daniel.  My wife's pregnancy had been described as being a "textbook pregnancy," but unfortunately it was not a textbook birth and Daniel had been delivered dead by emergency caesarean section having suffered severe oxygen starvation during labour.  It took the medical staff 20 minutes to resuscitate him and by the time they did, the brain injuries which he had sustained during a mismanaged labour had been compounded.  As they rushed him to the neonatal intensive care unit he was already suffering multiple seizures and we were later informed that his injuries were so severe that he was not expected to survive 24 hours.  An EEG then confirmed his brain activity as being a 'pre-terminal event.'  I remember every minute of those 48 hours as though they happened yesterday.  I remember a little baby boy who fought dearly to live.  As he did throughout his life, he fought everything, sometimes even beneficial things and so it was that every time they put a line into him, he ripped it out.  It was sheer determination that he survived those bleak hours and a neonatal medical and nursing team to whom I owe a great deal.

The next few days were very traumatic but Daniel did survive and eventually we were allowed to take him home.  We were told that he would be very unlikely to have escaped his ordeal without significant disability.  In fact he turned out to be blind, deaf and quadriplegic.  We were told that this was a situation which would never change, - a statement we refused to accept and we set out on a journey to find answers to his problems, - a journey which would take us all over the world.

Daniel hardly slept and this was gradually wearing Janet, my wife down to the ground.  We decided that she needed help and that if we were really going to solve Daniel's problems, that I should give up my career, so that I was available at home to take some of the strain. We also decided that I should enroll at university to study psychology and child development so that I was learning more and more about Daniel's problems.  The degree I enrolled on was full time, so at least we would be in receipt of a student grant, but it had the advantage that my lectures were so spaced out, that I could be at home much more than previously.

Somehow over the next 3 years, despite a profound lack of sleep, I managed to get a degree based in psychology and child development and this combined with other things we were doing meant that we had been able to bring back Daniel's sight and hearing, much to the initial shock of the medical profession, however this shock soon changed to the position, agreed amongst themselves that "it would have happened anyway."  Yes of course if we had done nothing, it would have happened anyway.

So, over the years we managed to give Daniel a good quality of life, using help from various therapies and our own increasing knowledge.  However, at age 13, Daniel suddenly developed an unsafe swallow.  This was a setback because his weight was always judged to be on the 'light side' and so the decision was made to insert a naso-gastric tube.  This did have the desired effect of him putting on weight, however another more sinister complication arose, - he started to display signs that he was entering puberty.  This obviously had the effect of releasing various hormones into his system and the poor little mite just could not cope.  He began to experience brainstem seizures which despite all their efforts his doctors were unable to control.  Then when he was 15 he suffered a brainstem stroke.  Over the next weeks he began to decline and a couple more of these episodes ensured that there would be no recovery.  On the morning of the 21st of December 2003, I saw his eyes close for the final time and at 4-40am we lost him.

As you may imagine, over the next few months, we were devastated, (in fact we still are, losing a child is something you never get over). We wanted nothing to do with the 'special needs world' we totally rejected it.  However, eventually I decided to finish my studies and returned to that world to supplement my degree with post graduate qualifications in 'language and communications impairments in children' and ultimately a degree based in neuroscience and child development.  In August 2008 Snowdrop was born.  We called it Snowdrop because on the morning of Daniel's passing, Janet went into the garden and saw the new life of the snowdrop bulbs just beginning to break through the soil.  We later discovered that the Snowdrop is an international symbol of hope through adversity, - a fitting metaphor.  Initially we had one child on our programme, but today we are bursting at the seams with hundreds of families using our programme from all over the world. We have children on our programme with a wide variety of developmental problems, ranging from 'specific language impairment, through to sever cerebral palsy, autism, ADHD, sensory processing disorder and much more.  We also treat a wide variety of sometimes rare genetic disorders.

Our success has outstripped my wildest dreams.  We have children seeing, hearing, feeling, walking, speaking and much more, who previously were unable to.  This is not just empty talk of success which cannot be substantiated, I can actually introduce you to the families whose children have been helped.   When I was an 18 year young laboratory technician starting out in the world, I never thought my life would take this turn.   If you want to learn more about us, simply visit our website at http://www.snowdrop.cc or you could visit our Facebook page or simply email us at info@snowdrop.cc