Блог мамы - врача, посвященный ее 6-летней дочери с тяжелой степенью дцп и их успехам на ABR. Здесь ее наблюдения за последние 4 года, с выводом, основанном на ее субъективном опыте, что при сложных формах параличей развивающие мозг терапии достигают успеха лишь при одновременном воздействии на структуру:
I knew I wanted to write about the progress we've seen in Emma since we started with ABR, but looking through my photographs today, I'm once again amazed what a huge difference there is.
In the pictures on this page, you'll first see unhappy 20-month-old baby. This was back in November 2011. Then, a year later, you can see progress, but compare this with the most recent pictures I've added – ones we took in June 2015.
Each time I look to these recent pictures I'm filled with happiness seeing just how moveable her spine is, and look to the joy on her face!
I don't want to deceive anyone with these pictures, Emma is still a quadriplegic and she cannot sit completely unassisted, but the progress is very clear.
One of the first signs of progress was on was her facial features. When we started, Emma's eyes were crossing a lot, but within six months there was a significant difference and I stopped patching her eyes. I'm entirely convinced that if Emma didn't have ABR she would've had distorted facial features and dental issues.
Over time we saw more improvements, including:
• She has elegant neck control. This means Emma can focus her gaze and track objects more easily, which has led to better hand-eye co-ordination and huge improvements in cognitive function.
• She is now able to drink from a cup, is not drooling so much and is eating a normal diet.
• She is less sensitive to sensory input. This made such a huge difference to our quality of life. Before ABR we were practically housebound because being around lots of other people would startle her and make her cry.
• She has a better immune system and better bowel function.
• She can communicate with us better. Today she nods her head for yes and shakes it for no – see what neck control can do for you! She can also say "yes" and is trying to vocalise other words more and more. This is incredibly exciting, initially I expected her to stay non-verbal forever.
• She can roll, point to things and grab them – she is also trying to feed herself with a spoon. (Exciting and, yes, challenging for us.)
• And importantly, she knows where her body is in space. Before ABR she was like a head with no body. This was because her body couldn't communicate properly with her brain when she moved – but it was not a brain issue, the issue was because of her distorted structure (again, a longer post on this specific topic soon).
All in all, a huge difference in Emma's quality of life. And our experience of this is not isolated. A recent study on a group of children with severe CP (GMFSC 4 and 5) in Canada found a significant increase in the quality of life in children who received ABR. (When you click on the link you will find it under section E8 on page 67 under the title :"Results of a 3-year prospective cohort study investigating the influence of home-based therapy on patients with cerebral palsy in GMFCS levels IV and V")
I don't credit ABR with all the progress, but it is very much the base therapy. After working with ABR for a year, I quit all the other therapies – they seemed a distraction – and focused on ABR for two years. I also supplemented the ABR with optimised nutrition, medical cannabis, melatonin and the ABR gel that you apply topically. (Again, I'll write more on each of these in future posts.)
After two years I could see how Emma's body had responded, so then I picked up Conductive Education (CE) again, and this time the effects were really evident, purely because her body was so much more receptive. If you recall my earlier blog, I mentioned that CE was initially frustrating and fruitless. This time she was able to learn from CE. For example, she learned how to grab on to object to stabilise herself. Here's why this was such a big deal: for Emma to become able to do this, she needed to become able to focus object and maintain the focus while she moved her arm and hand towards the object to grab it. Without proper neck function (it was the case with us) she would see the object, but had to forfeit the focus and head position in order to lift her arm. She would miss her intended goal and lose her balance. The arm simply could not move without the head being in a dropped position. After two years of ABR, this mechanism of head/neck/arm/hand was improved and so she could now successfully grab on tightly with hand-eye co-ordination. This experience showed me that brain targeting therapies are only successful in cases of severe cerebral palsy when the structure issue is addressed in some way.
I'm aware that I'm being controversial. In my experience of many people in the Cerebral Palsy community, there's very much attitude "all treatments are equal". I find this hugely frustrating, especially when people say, "you must do what works for you and I will do what works for me". This attitude undermines scientific inquisition. It also reminds me so much of the early days of being told "become patient" and "hope".
I don't want to hope. I want to help my child. And I have. And doesn't she look beautiful?
http://my-emma.org/blog/healing-my-daughter-s-cerebral-palsy-at-home-1
