Tuesday, 12 December 2017

Down's Syndrome

Down syndrome is a chromosomal disorder caused when an error in cell division results in an extra 21st chromosome.There can be impairments in cognitive ability and physical growth, mild to moderate developmental disabilities, and a higher risk of some health problems.
Through a series of screenings and tests, Down syndrome can be detected before or after birth.
The likelihood having Down syndrome is around 1 in every 700 pregnancies. It is determined by many factors, but research suggests there is a higher risk if the mother delivers at over 35 years of age.
Before the age of 30 years, fewer that 1 in 1000 pregnancies will be affected by Down syndrome. After the age of 40 years, this figure rises to about 12 in 1,000.
Snowdrop has experienced some really good results in treating the developmental problems produced by Down's syndrome and this article is a good example of that. http://www.madeformums.com.baby/downs-syndrome-mums-story/42812.html
This morning we welcomed another little boy of 2.5 years, with Down's syndrome for his first assessment. It turns out he is a very good judge of character as he would not have anything to do with me! I had to work through his mum, but we got there in the end. We are hoping for similar results to the little girl in the article.

Monday, 4 December 2017

3P25 Deletion Syndrome.

3P25 syndrome is a very rare genetic disorder affecting something like 1 in 500,000 live births and the problems it can cause for the child can vary widely, creating a spectrum.  Therefore each person with a 3p25 deletion is unique and will have different developmental and medical concerns. No one person will have all of the features listed her – even if their chromosome deletion appears to be exactly the same. However, a number of common features have emerged:

  • Low birth weight, most children also grow slowly and remain short. 
  • Feeding problems
  • Delay in reaching baby ‘milestones’ and later developmental delay 
  • Hypotonia - floppiness 
  • Need for support with learning 
  • Ptosis – an inability to fully raise the upper eyelid 
  • Unusual facial features, such as wide-spaced eyes, low set ears, and a long groove between the nose and upper lip 
  • Small head (microcephaly)
  • The head is sometimes an unusual shape 
  • Autism and challenging behaviour 
  • Many children have a cleft palate or other palate anomalies 
  • Extra fingers and/ or toes 
  • Dimple near the base of the spine 
  • Bowel or intestinal problems 
  • Seizures 
  • Hearing impairment, temporary in some children 
  • Kidney problems 
  • Heart conditions 
  • Pits/ tiny holes in the cheek just in front of the ears 
  • Scoliosis or other mild skeletal problems 
This afternoon a new family with an absolutely beautiful 14 month old little girl joined us on the Snowdrop programme. She has 3p25 deletion syndrome, but mum and dad have already worked so hard with her and done really well. Let's hope we can add even more to their achievements. She is such a cutie!

Thursday, 23 November 2017

Neonatal Alloimmune Thrombocytopenia

 Neonatal Alloimmune Thrombocytopenia is a disease that affects babies in which the platelet count is decreased Platelet antigens are inherited from both mother and father. NAIT is caused by antibodies specific for platelet antigens inherited from the father but which are absent in the mother.  Fetomaternal transfusions (or fetomaternal hemorrhage) results in the recognition of these antigens by the mother's immune system as non-self, with the subsequent generation of allo-reactive antibodies which cross the placenta. NAIT, hence, is caused by transplacental passage of maternal platelet-specific alloantibody and rarely human leukocyte antigenn (HLA) allo-antibodies (which are expressed by platelets) to fetuses whose platelets express the corresponding antigens. NAIT occurs in somewhere between 1/800 and 1/5000 live births. More recent studies of NAIT seem to indicate that it occurs in around 1/600 live births in the Caucasian population.

 Today we met a 5 year old little boy and his parents for their initial assessment for the Snowdrop programme. The little one had suffered brain injury through neonatal alloimmune thrombocytopenia, which had caused cerebral bleeding and hydrocephalus. His visual abilities are almost completely absent, but he does understand some language, (but only produces a few words). He experiences tactile hypersensitivity and is constantly producing self-stimulatory vestibular behaviours. His left side limbs are very weak and his left hand is hardly used. Looking forward to getting him started and seeing what we can achieve

Thursday, 16 November 2017

Cockayne Syndrome.

According to Genetics Home Reference, Cockayne syndrome is a rare disorder characterized by an abnormally small head size (microcephaly), a failure to gain weight and grow at the expected rate (failure to thrive) leading to very short stature, and delayed development. The signs and symptoms of this condition are usually apparent from infancy, and they worsen over time. Most affected individuals have an increased sensitivity to sunlight (photosensitivity), and in some cases even a small amount of sun exposure can cause a sunburn or blistering of the skin. Other signs and symptoms often include hearing loss, vision loss, severe tooth decay, bone abnormalities, hands and feet that are cold all the time, and changes in the brain that can be seen on brain scans.
People with Cockayne syndrome have a serious reaction to an antibiotic medication called metronidazole. If affected individuals take this medication, it can cause life-threatening liver failure.
Cockayne syndrome is sometimes divided into types I, II, and III based on the severity and age of onset of symptoms. However, the differences between the types are not always clear-cut, and some researchers believe the signs and symptoms reflect a spectrum instead of distinct types. Cockayne syndrome type II is also known as cerebro-oculo-facio-skeletal (COFS) syndrome, and while some researchers consider it to be a separate but similar condition, others classify it as part of the Cockayne syndrome disease spectrum.  It is estimated to occur in 2 to 3 per million newborns in the United States and Europe.
Today we welcomed a 5 year old little girl who has Cockayne syndrome onto the Snowdrop programme.  Such a poor little princess who could only just see me at close range and who had very little motor abilities.  However, there is always hope and all we can do is to work methodically on the problems she displays.  The brain is incredible and I have seen the wonders it can perform, even in some of the most severe cases.  Let's see if we can't improve things for this little one.
sometimes. Let's see if we can't improve things for this little one. 

Monday, 13 November 2017

Autism, Sensory processing and Social Communication.

One of the defining attributes of what the world likes to call 'autism' is problems with sensory processing.  I have yet to meet a youngster with autism who does not have some sort of sensory processing issue, be it visual, auditory, tactile, etc, or indeed all the senses.  This is so important because it is these sensory input channels to the brain which dictate the way in which we see, hear and feel the world around us.  This in turn then influence what a child produces by way of the output pathways of gross and fine motor behaviour, vestibular behaviour, fine motor function, language, social communication and emotional behaviour. 

Today we welcomed a four year old little boy and his family from eastern Europe for their first assessment. The little on has a diagnosis of autism, but his major problems lie in the areas of sensory processing and social communication. Of course these two areas are linked.  Because he experiences auditory hypersensitivity, he doesn't like to interact with people he doesn't know, in particular with children.  Children are unpredictable and produce many sounds at the frequencies to which he is sensitive.  His visual magnocellular pathway is under-active, (this pathway helps us to notice movement and aids with visual accommodation) which is why he is focussed on objects which move, in particular objects which spin, (he is unwittingly trying to activate that pathway by creating more and more movement).  Some children with problems here will sit and wave their hands in front of their eyes in an attempt to stimulate this pathway.  This is also why he holds objects close to his eyes in order to observe them.  He spins himself around and spends time upside down in a clear attempt to stimulate the vestibular pathways, which he needs because his balance is very poor, (his brain innately understands this, hence the self - stimulation. - The brain shows us what it needs, we just need to observe)!

He was a delightful little chap who has lots of possibilities. Our first steps, as always are to try to improve sensory processing, because as I say, if the input channels which feed information into the brain are not working correctly, then neither will the output channels because they are operating on faulty information. Let's see how he fares on the Snowdrop programme.

Friday, 10 November 2017

IDIC-15, Chromosome 15q, - DUP 15q syndrome.

Isodicentric chromosome 15 syndrome is a developmental disorder with a broad spectrum of features. The signs and symptoms vary among affected individuals.
Poor muscle tone is commonly seen in individuals with isodicentric chromosome 15 syndrome and contributes to delayed development and impairment of motor skills, including sitting and walking.

Babies with isodicentric chromosome 15 syndrome often have trouble feeding due to weak facial muscles that impair sucking and swallowing; many also have backflow of acidic stomach contents into the esophagus (gastroesophageal reflux). These feeding problems may make it difficult for them to gain weight.

Intellectual disability in isodicentric chromosome 15 syndrome can range from mild to profound. Speech is usually delayed and often remains absent or impaired. Behavioral difficulties often associated with isodicentric chromosome 15 syndrome include hyperactivity, anxiety, and frustration leading to tantrums. Other behaviors resemble features of autistic spectrum disorders, such as repeating the words of others (echolalia), difficulty with changes in routine, and problems with social interaction.

About two-thirds of people with isodicentric chromosome 15 syndrome have seizures. In more than half of affected individuals, the seizures begin in the first year of life.

About 40 percent of individuals with isodicentric chromosome 15 syndrome are born with eyes that do not look in the same direction (strabismus). Hearing loss in childhood is common and is usually caused by fluid buildup in the middle ear. This hearing loss is often temporary. However, if left untreated during early childhood, the hearing loss can interfere with language development and worsen the speech problems associated with this disorder.

Today's family travelled from central Europe to see us with their beautiful 15 month old little girl. She has IDIC-15 which occurs in around 1 in 30,000 births. This was her second assessment, the first one having been a distance assessment, so she has been doing the Snowdrop programme for 6 months. Despite the genetic disorder trying to slow down development, she had made many gains, in visual development, where she is now looking at pictures in a book, auditory development where she is now understanding a few words. In gross motor development she is on the verge of crawling and she is actually moving herself forward. We also see improved hand function and socialisation. Well done to a mum and dad who travelled such a long way and who have worked so hard to fight a genetic condition which is working to stop development. To make gains despite this is truly remarkable.

Wednesday, 8 November 2017

Cerebral Palsy / Developmental Delay.

I often wonder about the term 'cerebral palsy.'  What does it mean?  There are various types of this condition, spastic cerebral palsy, athetoid cerebral palsy, dystonic cerebral palsy, ataxic cerebral palsy, dyskinetic cerebral palsy and mixed cerebral palsy.  All of these are associated with a varying spectrum and degree of developmental delay, in various, or all areas of development.  CP is a description of symptoms, - symptoms which can be so wide ranging and of differing degrees of severity as to make the term virtually meaningless.  Some children with CP can also have elements of what is known as ADHD, Autism and other conditions too.  It is as though when a child suffers a 'neurological incident' he / she places their hand into a bag of symptoms and scatters them onto a table.  Some fall into the circle marked 'CP,' others fall into the circles marked 'autism' or ADHD.  These disgnoses can be 'fuzzy concepts where the boundary of one condition crosses over into the territory of the next, and so it was with the visit of today's little one to Snowdrop.

Today we welcomed back a 3 year old little boy for his fourth assessment. He has a mixed diagnosis, some saying CP and others developmental delay, - essentially it amounts to the same thing. He was a bright button from the start, but now at 3 years old he is performing cognitively at the 5 - 6 year level. His previous tactile undersensitivity has gone and in the 18 months he has been on programme, his language development has jumped from the 16 month level to the 48 month level. The most difficult area for him has always been gross motor development, but he is now taking pleasing steps forward and he is now quadruped crawling. He dressed up specially for us today, wearing a bow-tie, - he looked really cool. I just wish I had his hair, - don't ever dare cut it! Well done to mum and dad, you have worked wonders.

By the time they settle on this one's diagnosis, he'll be fine!

Tuesday, 7 November 2017

Neonatal Arterial Stroke.

Many people associate strokes with age, but they might be surprised to learn that a great many young children suffer strokes.  Stroke happens in about 1 in 4,000 live births. The risk of stroke from birth through age 18 is almost 11 in 100,000 children per year.  So it is a great deal more common than one might imagine.

Today we met a nearly 3 year old little girl who has developmental delays due to a neonatal arterial stroke. She was absolutely delightful, just starting to walk and talk, mum and dad, as with all mums and dads have already performed wonders with her. Can't wait to get her started on the Snowdrop programme.

We have a few children on our programme who have suffered varying types of stroke and most of them are making good progress.  Let's hope this little girl follows in their footsteps.

Monday, 6 November 2017

Cerebral Infarction, Leukomalacia and HIE

Today we welcomed a nearly 3 year old little girl and her family back to Snowdrop for her fourth assessment. She had suffered a cerebral infarction, leukomalacia and HIE, but she also has retinal dysplasia which curtails visual ability markedly. For those of you who are unfamiliar with these terms, please allow me to explain.

(1). Cerebral Infarction. - This refers to a loss of brain tissue in an area, caused by lack of oxygen.

(2).  Leukomalacia. - This is loss of white matter, (the myelin sheath which surrounds axons and enables the electro-chemical signal created in the neuron to travel at great speed).

(3). Hypoxic Ishaemic Encephalopathy, (HIE) is a type of brain damage that occurs when an infant's brain doesn't receive enough oxygen and blood. So really it is another way of framing an infarction.

Even though she has retinal dyslpasia, she made eye contact, pulled my glasses off, (a favourite pastime of children) and I noticed her follow my wife, who was a short distance away. Auditory cognition is now above age level with her previous sound sensitivity having been resolved. Her tactile processing issues also seem to be resolved and socially she is an absolute delight, performing at near age level. Such a friendly, playful little twee, it is so nice to see her making progress.

Friday, 3 November 2017

1p36 Deletion Syndrome

1p36 deletion syndrome affects between 1 in 5,000 to 1 in 10,000 children.  It is characterised by severe intellectual impairment, lack of language development, temper tantrums and other behavioural issues.  There can be structural abnormalities in the brain which also cause low muscle tone and difficulties in swallowing. Children can take a long time in rolling over, sitting, etc The only treatments which have been widely used are physiotherapy and music therapy, which have had limited impact.  

6 months ago I was delighted to welcome a 12 month old little girl with 1p36 deletion onto the Snowdrop programme where we try to harness the inherent plasticity of the brain in order to stimulate development.  Today the little girl in question attended with her parents for her first reassessment.  we saw some promising improvements. She is now rolling and sitting, her visual performance was improved and she is now listening to the voices around her, which gives her a chance to begin decoding language. She also now recognises her own name. Hand function is also showing good improvement with the development of a pincer grip and we also have gains in social development.  As I say, children with this disorder usually have feeding and drinking problems due to their difficulties with swallowing, but we seem to have had a positive effect here with this little one eating and drinking with impunity.

All this in the face of a genetic expression which is acting to prevent development. If we can do this in 6 months of programme, imagine what we can achieve in the long term!

Monday, 30 October 2017

Meningitis and Hydrocephalus.

Today's assessment was on of the most amazing we have hosted.  It was with a 20 month old little boy and his family. He has been on the programme for 16 months and this was his fourth assessment. 

His background is a complex one.  In his Mum's own words in her first email to me.

"My identical twin boys were born 8/3/2016, 12 weeks early. ------ had fluid on the brain, a brain bleed on both sides, ventriculitis, and both twins contracted ecoli bacterial meningitis at 8 days old. ------- nearly died, he was having bad seizures, so much that his body was jerking off the bed (------- wasn't as sick) we were told there would be long term effects of this meningitis as he was so sick.

Unfortunately ------ got meningitis another TWO times. He's had an MRI which showed extensive brain damage and unfortunately has had to have a shunt fitted this week as the third bout of meningitis finally cleared up and he was well enough for surgery. The hydrocephalus has been very severe and neurosurgeon mentioned more brain damage since the last MRI.

I got talking to a mum of a little baby called ------- from York last night, we are at Leeds hospital together. She mentioned Snowdrop and I've been reading your website.
------- still not been discharged from hospital and yesterday started twitching down one side of his body again which he always did everytime he had meningitis, but part of me wonders if it's cerebral palsy or from the brain damage. We are waiting for neurology to come review him. But the hospital aren't being very open about his brain damage as I understand they can't say how it's going to effect him, but there is something clearly wrong. We don't even know if he can see or hear. He just states vacantly. The hospital describe him as a very angry as unsettled baby, he settled yesterday when I put his twin in his cot with him and actually looked directly at him.

We don't think we would be able to get to Devon having twins and a four year old. But we are very interested in the snowdrop programme for ------. I just wondered if you could advise me as to what to do next?

I know ------- is a very complex case but that's the basics of his history in his short 13 week life so far!"

In short, he was in a sorry state with a prognosis which was savage, the little one was going nowhere. Today, after 16 months on the programme, he walked into the assessment room and is at age level in every area of development. In fact today I graduated him from the programme, - he no longer really needs it! Of course we will keep a 'monitoring eye' on his progress, just in case an issue raises it's head, but I'm sure it won't. Not a bad start to the week! Well done to mum, dad, big sister and twin brother, - together we rescued him!

Friday, 14 July 2017

Learning with Music Helps Boost Changes in Brain Structure.

I have understood the importance of music for some time now, how it can influence the plasticity of the brain and how in particular it can influence the development of spoken language.  This is why there is a musical element to all Snowdrop Programmes, whether that be through offering clients access to the 'EASE' programme, the 'Listening Programme,' or whether it is using music to calm a child.  Now we have evidence that we can use music to stimulate better motor performance.  This will be immediately implemented and incorporated into our programmes.  With thanks to domain-b.com.  Learning with Music Helps Boost Changes in Brain Structure 

Wednesday, 5 July 2017

Successfully Treating Down Syndrome

This article was written by a Mum who has a little girl with Down Syndrome who used to be on the Snowdrop Programme.  I first saw Eloise when she was 3 months old and she was already showing signs of having severe issues.  However, we got to work on trying to stimulate development, on trying to change the way in which her brain worked and we were successful.  Eloise is now 5 years old and she is just like any other 5 year old child, hitting all her milestones and looking forward to a bright future.  With thanks from 'Made For Mums.' Continue reading here - http://www.madeformums.com/baby/downs-syndrome-mums-story/42818.html

Tuesday, 4 July 2017

Treatment of PACS1 Syndrome.

Today we welcomed back a 7 year old little boy for his 8th assessment. He has a rare genetic condition called 'PACS1 Syndrome.  This is a very rare genetic condition caused by mutation of the PACS1 gene. It is NOT inherited from either parent but it will be passed on to a patient’s child (“autosomal dominant”).

The first two cases were identified in early 2011 by doctors in the Netherlands. As of early 2017, there are just 40 cases that have been identified worldwide.

PACS1 children have the following issues.

  • most of our children have similar facial features such as similar facial features.
  • Widely spaced eyes and low-set ears
  • Down-slanting eye corners and mild uni-brow
  • Highly arched eyebrows and long eyelashes
  • Round “button” nose with a flat arch
  • Wide mouth with down-turned corners
  • Thin upper lip and widely spaced teeth

Other common traits the parents have seen:
  • Low muscle tone
  • Seizures (usually short and sporadic)
  • Repetitive stimulation (similar to Autism Spectrum Disorders
  • Sensory over/under sensitivity 
  • Motor planning difficulties 
  • Delayed physical and cognitive development
  • Chewing and swallowing diffculties
  • Digestion and/or bowel problem
  • Slower growth resulting in lower height and weight

However despite these problems he has made so much progress since we first started him on the Snowdrop programme in October 2013. Back then he was behind in visual cognition, now his reading is surging ahead and he is fully cognisant. He was also behind in auditory cognition but now understands language at age level. His tactile and gross motor skills have improved immensely and he is roughly where he should be in terms of gross motor skills. The most dramatic improvement however is in language production. for so long he was quiet and seemed withdrawn and at his first assessment only having the verbal abilities of an 18 month old. Today we couldn't keep him quiet and he produces a wide vocabulary and perfect grammatical structure. He has an impish sense of humour and he will continue to improve. His future is considerably brighter than when I first met him, but you can see the timeframe with which we have brought about this change? Yesterday it was 5 years, today it is 4 years, so all of you out there, stick with it! Well done to mum, dad and sister, who have 'swam against the genetic current' and are most certainly winning!

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


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