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

Friday, 20 May 2016

Snowdrop, - A Week of Developmental Assessments. Week Beginning 16th May 2016

We had three assessments this week, on Monday we saw a 5 year old little girl for her fourth assessment. She has 'Phelan McDermid' syndrome, which is basically where a chunk is taken from chromosome 22, - it is quite rare and can produce all sorts of problems, but commonly comes through with autism type issues. I was overjoyed today when for the first time she walked into the room, looked me straight in the eyes, flung her arms around me and gave me a cuddle. Other improvements were both hands working cooperatively for the first time, spontaneous interaction, - she was constantly trying to involve me in her play. It was also good to see her and her little sister 'tussling' over possession of a toy, - a very natural, normal scene. we have a little girl who is beginning to emerge out of her bubble, - we have 'chinks in the armour.' Now to prize them open!

On Tuesday we saw a 3 year old little girl who does not have a diagnosis. She does have severe neurodevelopmental problems however and she was returning with her mum and dad for their first reassessment and what a stunning difference there was. Visually she has moved from the 12 month level to the 24 month level, with similar surges forward in auditory development where she is understanding much more language. She even produced independent forward movement when I placed her on her tummy. In fact there were improvements in every area of development. Yes, she still has problems, but is she moving in the right direction, - definitely! She is a concealed intelligence, but I can see her! Well done to all!

 On Thursday we received a two year old little boy who has developmental delay, for his third assessment and my, how he is coming along. When he first started the Snowdrop programme 10 months ago, his vision which is affected by optic nerve dysplasia was at the 12 month level. Now however, he is much more visually 'switched on' and is operating at more like the 30 month level. His auditory abilities which were at the very basic levels of a 3 month old baby are now at the 24 month level where he is understanding simple sentences, listening to stories and understanding what some parts of his body are called. His tactile processing problems are much improved and we are just starting to work on developing a standing balance, where before, he wasn't even sitting. He has made huge gains in every area since we first met. He is a delightful little chap with a great family around him.

Another very satisfying week!

Friday, 13 May 2016

Snowdrop. - A Week of Developmental Assessments. Week beginning 9th May 2016

We began the week by seeing a 7 year old little boy with ADHD for his second assessment. Such an intelligent, gentle little boy caught up in a whirlwind of his own hyperactivity, but definitely calmer than his first assessment and his attention definitely easier to capture. Sometimes it can take time to slow hyperactive kids down, but I feel we are making progress.


On Tuesday we saw a 4 year old little girl who has PVL and developmental delay. Today was her 7th assessment and although she still has significant problems, she is streets ahead of that 1 year old I first saw who was locked away within herself. She is using her vision beautifully to explore her environment, understanding more language, making choices, crawling on all fours and we are not far away from standing. Like me though, she is totally motivated by food!


On Wednesday we welcomed a 4 year old little boy for his 9th assessment. He has a diagnosis of severe cerebral palsy and was forecast not to live. Yes he still has many problems, but he is absolutely streets ahead of where he would have been and is thriving. His visual and auditory cognition have risen to where they will soon be at the top of the developmental profile, - he can sit, can stand with support and his tactile processing issues are resolved, as is his inner anxiety. His muscle tone is much improved and we now have 3 words of speech, (with many more to come I think). There is a massive difference in his awareness of and engagement with his environment and the people in it. It has taken a while and a great deal of hard work, battling against epilepsy too, to achieve all this, - but look how far he has come in comparison to that initial prognosis, which was as bad as it can get!


On Thursday, we welcomed a 7 year old little girl back for her 3rd assessment. Her diagnosis is cerebral palsy and CVI. Today I watched her visually steering her hands, taking the top off a pen and replacing it with great precision, which is great because hand function is also a problem. Visually and auditorially she is now 'switched on' and has visual and auditory abilities at the top of the profile, is trying to get herself into the 4 point crawling position and has an expanding vocabulary of words. A super assessment with a highly intelligent little girl.


We finished the week by meeting a great new family with a 20 month old little boy who has no formal diagnosis but what the medical people feel looks like developmental delay / cerebral palsy. He is such a bright gregarious little chap, I could have stayed there all day with him. Again, a little one with huge things going for him despite his developmental problems. A lovely way to end the week.

Wednesday, 4 May 2016

Mowat Wilson Syndrome

Today I saw one of the most incredible transformations of a little boy. The little one in question has Mowat-Wilson syndrome,  Mowat-Wilson syndrome is a genetic condition that affects many parts of the body. Major signs of this disorder include distinctive facial features, intellectual disability, delayed development and intestinal disorder
.

Mowat-Wilson syndrome is often associated with an unusually small head, (microcephaly), structural brain abnormalities, and intellectual disability ranging from moderate to severe. Speech is absent or severely impaired, and affected people may learn to speak only a few words. Children with Mowat-Wilson syndrome also have delayed development of motor skills such as sitting, standing, and walking.

We first saw the little chap in question 5 months ago when he was 15 months old, - he was not sitting, not crawling, not understanding any language, had poor hand function and was generally behind in every area of development. Today, after 5 months on the Snowdrop programme, I met a little boy transformed! He was visually and auditorially curious, understanding some language, sitting, crawling in a good cross pattern, trying to pull himself to stand and well on the way to developing a standing balance. His hand function was dramatically improved, to the point where he was using a pincer grip in both hands and trying to feed himself with a spoon. Dramatic gains in 6 out of 7 developmental areas, against the background of a genetic expression trying to prevent that! Not a bad start to the week and another little superstar is born!