Snowdrop for Brain Injured Children.

14/04/2021

Today we welcomed back an 11 year old young man for his 16th assessment. He has a very rare genetic condition called PACS1 which causes intellectual disability, developmental delay, low muscle tone, feeding difficulties, seizures and more. He has come such a long way since his first assessment at 3 years of age. Visual and auditory development are at the top of the profile with just a couple of minor issues. There is no intellectual deficit here, he knows exactly what he is doing! His gross and fine motor skills are good, he walks, runs etc and his spoken language is functionally complex with just the occasional dip in clarity. He is an absolute superstar, - his main problem is lack of self - belief and performance anxiety. What a great little guy and well done to his fantastic family for refusing to accept defeat.

12/04/2021

Today we welcomed back a 29 month old little boy for his 4th assessment. He had suffered HIE and was developmentally behind in many areas. We last saw him nearly 10 months ago and in that time he is now age appropriate in visual cognition. He has moved from the 12 month to the 24 month level in language comprehension and his tactile perception. His gross motor progress is very exciting at the moment and he has gone from sitting, to almost independent standing and today when we put him to the test a little, he took his first independent step. Spoken language is also coming along and he has 3 words of speech which pushes him up from the 7 month level to the 14 month level. This is all excellent progress and a very nice start to our new phase of face - to - face assessments.

10/02/2021

Get those kids a keyboard! https://www.inc.com/geoffrey-james/want-smarter-kids-teach-music-not-coding-according-to-mit.html

03/12/2020

I was discussing the importance of singing to language development with the family attending today's assessment with their child. It made me recall this article, which highlights its importance. https://www.theguardian.com/lifeandstyle/2011/may/08/singing-children-development-language-skills

New book claims that 'signature' melodies and inflections of traditional rhymes prepare children's brains for language

02/12/2020

This is interesting and justifies several of our techniques used to stimulate language development. It also highlights the importance of 'pruning' in plasticity, to make the neural pathways as efficient as possible. https://neurosciencenews.com/language-exposure-infant-brain-17343/

Taking turns in "conversations" with adult caregivers synchronizes activity in language areas of the infant brain.

21/10/2020

Yesterday, Tues 20/10 we welcomed a nearly 3 year old little boy for his first assessment. He currently does not have a diagnosis, but is globally delayed. It was good to welcome him and his family to the programme. We wish them every success.

20/10/2020

On Monday 19/10, we welcomed back a 4 year old little girl for her 7th assessment. She had suffered HIE grade 2 at birth and we first saw her when she was just 6 weeks old. She suffered sensori-neural hearing loss on both sides, was later diagnosed with CVI, but she obviously had potential. Today she has visual issues, but her vision is good enough so she can cope in her everyday life. She can see well, with a few deficits. Her understanding of spoken language is excellent and she walks and has gross motor skills approaching the 36 month level. Her functional language is excellent in structure and complexity, it is just one area of her mouth which is not being used which detracts from clarity. She is an all round superstar and a credit to her mum and dad who work unremittingly.

23/09/2020

Today we welcomed back a 3 year old little girl for her second assessment. She has a diagnosis of Rett syndrome, but what a change there is from her first assessment. Visual cognition is now moved up to the 30 month level and auditory cognition which was at the 8 month level, is now approaching the 24 month level. She is almost standing independently, it is just a matter of confidence and a final little bit of balance which will get her there and her language development has moved from the 4 month level to the 14 month level of first words. Impressive progress.

23/09/2020

Earlier in the week we welcomed an almost 4 year old little boy back for his 8th assessment. He had suffered a neonatal hypoglycaemic brain injury which has affected every area of his development. It was nice to see improvements in close vision, wher he is now noticing most of his environment within a 1 metre radius and in auditory development he is understanding more words. Gross motor skills are improving too with an improved sitting balance, quadruped position and we can now begin working towards a standing balance. Some nice progress.

17/09/2020

Today we welcomed an 8 month old little girl for her first assessment. She has a rare genetic disorder, - CDKL5 and has suffered infantile spasms. Despite her problems, she presented as a lively, socially engaging little twee who clearly has the potential to move forward in many areas. We wish her well on the programme.

16/09/2020

Today we welcomed back a 20 month old little boy for his third assessment. He has a rare genetic / metabolic condition called RFT1-CDG. Usually children with this make poor visual contact, but his vision is improving all the time and he makes good eye-contact. There is also usually sensorineural hearing loss, but his hearing is now great with his understanding of language being above age level. There is also usually strong retention of reflexes, but we now have most reflexes successfully integrated. He is also making good progress with spoken language, now possessing several words of speech and he is catching up on his age level quickly. Gross and fine motor development are now his biggest challenges, but there is great potential there, if we can just slow down the rhythmic, writhing movements a little which will enable greater control of the limbs. He is making fantastic progress. https://rarediseases.info.nih.gov/diseases/12394/index

A collection of disease information resources and questions answered by our Genetic and Rare Diseases Information Specialists for RFT1-CDG (CDG-In)

15/09/2020

Today we welcomed back a 2 year old little boy for his fourth assessment. He had suffered bleeds to the brain around birth which had caused significant white matter loss and his development was affected in every area. Today he is a little boy who is above age level in visual and auditory cognition, his language is starting to develop nicely and his social development is now at the 24 month level. He is so close to a sitting balance and he is dragging himself forwards along the floor when on his tummy. Nice to see good progress, - well done to his family for their hard work.

10/09/2020

Today we welcomed back a 3 year old little girl for her second assessment. She has a genetic condition called MEF2C haploinsufficiency affecting gene 5q which has affected every area of development. I was very pleased this morning to see large gains in ability in visual cognition alongside gains in auditory cognition, hand function and social development. The most pleasing aspect of her improvement however was in gross motor skills, where she has moved from the 11 month level to the 24 month level and she is now walking, jumping and trying to run. Excellent progress.

08/09/2020

Today we welcomed back a 22 month old little boy back for his second assessment. He had suffered two strokes early in his life but also has a rare genetic disorder COL4A1. It was good to see today that there had been progress in several areas and it turns out that this young man is a very bright spark, possessing cognitive abilities well above age level.

04/09/2020

Today we welcomed a 3 year old little boy for his first assessment. He has a rare genetic disorder, a 14q12 microdeletion encompassing the FOXG1 gene, causing global delay with lots of seizures. We wish him well on the programme.

03/09/2020

Today we welcomed a 3 month old little girl for her first assessment. She was born at 33 weeks with severe hypoxia. We wish her well on the programme.

01/09/2020

Today we welcomed a 22 month old little boy with a diagnosis of PVL and who has also recently been diagnosed with CVI, - (although you wouldn't have known it today, - he didn't miss anything visually). Today, was his second assessment and he had made considerable progress in many areas. Visual cognition had moved from the 8 month level to an age appropriate level and auditory cognition is also age appropriate. A previous tactile senitivity was absent today and he is now so close to crawling. Language development has progressed to the 10 month level and in terms of social development he is showing some age appropriate behaviours. Well done to Mum and Dad on some great progress.

29/07/2020

Today we met a lovely 4 month old little girl for her first assessment. She had suffered infantile spasms. She was bright, interactive and full of smiles, - such a happy little thing. We wish her well on the programme.