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FAO hayley l

hi i have posted a reply to ur last post but it is showing as no reply but is there. didn't want u to miss it
milliepop xx

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  • Hi, thanks for taking the time to reply, it is difficult to explain how I feel really, obviously I am so relieved Isaac doesnt have MD but it is the worry of what is wrong thats getting to me, He was initially referred to the paed when he was about 16 months as he couldnt walk independantly and when he was on his feet he was on his tip toes, the paed said it was highly likely that his problems were down to his excessive hypermobility, he was seen again in January and he was walking by then but paed wanted to keep and eye on him so he was due to be seen later in the year, he was seen again last week about somethng unrelated, his fontanelle is still open although the paed said he is not overly worried about that, he was however worried about his lack of muscle strength, he did say it could be down to the hypermobility but even taking that into account he didnt expect him to be struggling in the way he is, he did also say that he appreciated that 6 months felt like a really long time but it will give time to see an improvement whereas 2-3 months may not, he did also say if I was worried to ring up and he would see me sooner. He is very good and has referred Isaac for physio but the waiting list is huge and he expects it to be at least 6 months, my oldest daughter is waiting for physio and she has been on the list since Feb and we still have no appointment.

    I guess it is jsut a waiting game and I keep telling myself not to worry about the tests yet becuase if Isaac improves in these 6 months then they wont even be needed. Trouble is I have now found myself watching other toddlers to see how they get up and down off the floor, somedays I wish I could just fast forward the next 6 months
  • i know just how you feel. i was and still am constantly looking at how other children move and comparing them to amelia. the waiting is so hard, i know its easier said than done when its ur baby, but try not too get too worried about what it could be. there's not really anything i can say to make you feel better or stop you worring except to say i'm here if you ever fancy a chat xx
  • my 3rd son joshua has this problema swell. he is now 5 but was diagnosed at 15 months, we have been through physio, doctors god knows how many bottles of calpol and ibrufen, he is in so much pain all the time. he wears sugical boots and has in serts as well. he finds it difficult to ride a bike and do buttons up and hold a pencil, as it also affects his fingers. we last went to physio last month, and we have been told that because his bones are growing so quickly his muscles aren't keeping up and so are tearing as he grows and causing him pain, he has no stabilty around any of his joints and often falls because his joints slip out of place. it's awful to see.
    we have just got to bear it out with him, they have said that he should have been alot better by now, by he isn't and is approaching his 6th birthday. i don't know what else to do.
    hope your little ones are getting on ok. xx
  • hi pen. amelia wears little boots and insoles too. its just so hard watching them struggle isn't it. you feel so helpless. sorry to hear of your lo's struggle i'm sending him a big hug and hope for the futurexx
  • Hi, thanks ladies, Isaac also has insole but my hospital are absolutely useless at times, the orthotics department is short of funding so they wont give him boots as apparantly the ones I buy for him are pretty similar, which is all very well but they cost me at least ??45 a time and his feet are growing very quickly at the moment.

    Pen I remember chatting before about your little boy, do you mind if I ask how he gets up from the floor? Isaac is doing something called gowers sign, which basically means that if he is sitting on the floor and he wants to get up he turns over on to all fours the puts his hand and feet flat on the floor then walks his hands up the floor and sometimes up his legs to get up, that is why they tested for MD as apparantly doing that is almost exclusive to children that have MD, obviously he doesnt have that as they have tested but the paed didnt seem convinced that it was just down to his hypermobility or whether there was another underlying cause.

    Thanks

    Hayley
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