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Could this be SMA III |
The doctors are currently trying to work out what is wrong with my 4 year old daughter, and after reading the information on this site, I am begining to wonder if I have found the answer. As a baby my daughter never rolled or crawled, though had no problems sitting or pulling herself up to standing. We never had the hard scrawling of crayon stage, every mark she made on paper was very light. Daisy has always been extreamly intelligent though intellegence tests showed she was slightly behind on her physical development. Although Daisy does climb she find this scarey and she often gets stuck, and seems unable to work out what she should do next, she wont jump off things, even a kerb again very scared, and when she does she lands straight legged. Daisy could never get herself on or off ride on toys, and is not able to move herself much, or steer them, she certainly can't peddle a trike or even keep a three wheeled scooter upright. Daisy always goes up and down stairs slowly with both feet touching every step, and she has to hold on, even the smallest of steps. Daisy appears to have a strange gait when running (bum sticking out) and is very slow. Her self care is very poor, even unable to tear toilet tissue or squeeze toothpaste. The peadiatrician said she was very floppy and she does have very poor upper body strength (unable to push a needle through a dead leaf, or press the keys of a piano). Daisy enjoys dancing though she is always behind everyone else. Eating is a trauma, she eats very little, and it takes forever and she suffers with constipation. All the doctors were amazed when the tests for muscular dystraphy came back negative, and it appears not to be dyspraxia. Does this sound like SMA III can anyone help?
Mish |
| Posted: Mon Aug 16, 2004 1:10 am |
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Re: Could this be SMA III |
Daisy: I have sma III, was first with a dx at age 6. I had the gait you describe, awkward, esp if running and steps were ALWAYS difficult. However I had more strength than what you are describing of your daughter.. Hopefully you can find a proper dx. I am 46 and recently using an electric chair.. I will pray for your daugher.
Joan (USA) |
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Re: Could this be SMA III |
| Hi Mish I have sma and have a five year old daughter, Jen, who shows all the same signs. It would seem that Jen is a bit stronger than Daisy appears to be but a lot of what you say is the same the climbing and jumping and not quite knowing what to do. The slow running and stair climbing is exactly the same and funnily enough Jen loves to dance too! I would say there is a good chance she has sma, but don't despair if thats the case. I am a member of the trust so if you need to get in touch contact them so we can get in contact. |
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