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.
Tuesday, 7 November 2017
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.
(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!
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!
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.
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!
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!
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