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f.a.o Joanne&brood

Hi Joanne
I am usually on ttc forum - trying for my 3rd!!! Anyway i was having a nosey and saw your post - my eldest daughter ellie has cp. She was born with left club foot and we tought this was the only problem - she met all other milestones except walking - following surgery for club foot more investigations were done and she was diagnosed at 3 with cp. Ellies main areas of concern are her balance and coordination for walking. She is 10 now and i can honestly say that Ellie has fulfilled so much more in life than any of us ever predicted. She is in all her top groups at mainstream school for her language maths etc.. She is one of the most popular in her class and has a fantastic social circle. She swims, goes to brownies goes to dancing etc... Yes she needs more help at time and has mobility problems but on the whole she is amazing and I have a wonderful well rounded, understanding daughter. Our lives have been so enriched by Ellie and meeting children who's cp is much worse - i have gained a greater respect for parents of children with disabilities and the childrem themselves. Please mail me if i can help you with anything specific but most of all enjoy your baby he is just the same as all the rest - just needs a little more help. Love to you all xxxx

Replies

  • Hi Joanne

    Ellie's muscles are mainly affected too - she has had a lot of physio over the years and wears splints on her legs to help keep good position and provide support. Ellie's cp was termed 'mild' although all her limbs are mildly affected except her left hand. Honestly though she is fantastic. Ellie is in a small group run by our ot service - all the girls are around the same age and all have cp - of them ellie is the mildest. I think they know pretty soon how mild the cp from doing the reflex and muscles tests and by seeing how your little one is developing with speech, recognition etc... I really hope all goes well for allof you joanne if i can be of any help let me know xxxmay
  • Hi Joanne

    Its hard to remember but i think ellie was about 5 - thay tried other things before that but the splints seemed to help most - her posture is so much better when wearing them. Ellie continued to get physio, the physio went to nursery each week and now goes into school each week. We try just to keep ellie as active as possible - swimming helps as the water takes the weight. We also asked about botox injections but the doctors felt it wasn't right for ellie although it has worked for others. We have a specialist physio centre called bobath near glasgow i don't know if you have anything near you. Also - hydrotherapy is supposed to be great - in fact just try anything lol!!!!

    keep in touch and let me know how you are getting on
    may x
  • Hi and sorry to intrude. Can I please ask when and how did you know something was wrong initially?

    Thanks
  • Hi Joanne, thanks for your reply. The reason I ask is just because i've been a bit concerned that Leo doesn't weight bear at all. Everyone says its completely normal, but as i'm sure you know i've been told before everything is fine and the docs have been wrong. He's almost upto date with other milestones so I'm sure he's just a little delayed because of his vision impairment.

    Hope you and your family are doing well
    :\)
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