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slowing down as he gets older

(38 Posts)
sparklymieow Mon 28-Feb-05 10:45:09

You lot proabably can't help as I think you all have younger children, but I need some advice. DS is 7 now and has Spastic Diplegia. I have noticed that he is defo. slowing down. It takes longer to walk very short distances and his 4 year sister (who also has Spastic Diplegia) is much faster than him. It doesn't seem that long ago he was able to walk and run, but over the last few months he has slowed down to snailpace. I was expecting this to happen when he got to teenage years but not now. How can we help him? He is also quite unsteady and he falls very easily.

lou33 Mon 28-Feb-05 10:48:23

sorry to hear this mieow, i can understand how you must feel for him, and yourself. Have you spoken to the physio or the paed?

sparklymieow Mon 28-Feb-05 10:50:19

all the time. They have said about using sticks in the future, but all they really say is this is a sign of age-ing within CP.

lou33 Mon 28-Feb-05 11:01:24

that's not good enough is it?!

he is 6 ffs

when did you last see someone about it?

sparklymieow Mon 28-Feb-05 11:04:52

he's 7 actually Lou I saw someone last week at GOS. I was allow to watch the videos they have of him from when he was 4. I can see an improvement in his leg foot (not so high on his toes as he used to be) but you can see the fact he has slowed right down. I feel so sorry for the little man

lou33 Mon 28-Feb-05 11:07:02

oops sorry, typo!

oh well if he 7 he must be given up on and consigned to the scrapheap

have you thought about asking him to be referred to the bobath centre in n london for a 2 week specialist assessment? They are fantastic, ds2 is going back in may

sparklymieow Mon 28-Feb-05 11:08:05

does that cost? I thought they only see young children

lou33 Mon 28-Feb-05 11:09:05

get the physio to apply for funding from the pct, t doesn't cost us anything, and no they see all ages.

coppertop Mon 28-Feb-05 11:10:15

No experience of this but surely they can't be writing him off at 7??

lou33 Mon 28-Feb-05 11:11:23

they will set up for him to see physio, ot and salt if he needs it, all under the same roof. They invite his therapists for a day on the second week to see what they recommend, and will video the therapy and give you a copy to take home, as well as a detailed sheet of what they suggest to be the best approach to take. You can pay for it yourself but it costs. Worth asking about imo

lou33 Mon 28-Feb-05 11:11:49

i know ct it is making my blood boil thinking about it

sparklymieow Mon 28-Feb-05 11:14:32

he has a block session of physio starting again next week so I'll ask his physio.

lou33 Mon 28-Feb-05 11:15:21

you may have to push for it, i think most places are not as eager to do it as where i live, but don't let them fob you off

dinosaur Mon 28-Feb-05 11:16:27

mieow, no advice but it sounds outrageous that they could possibly write off a child of 7!!! Grrrrr!

sparklymieow Mon 28-Feb-05 11:17:14

he has been referred for surgery, but that really won't make a diffence to his stamina, I just keep getting told to push him harder

lou33 Mon 28-Feb-05 11:18:42

how are the physios trained mieow? Do you know if they are Bobath, Peto or Cheyne trained? They have diff styles of working, and another type might suit him better

sparklymieow Mon 28-Feb-05 11:21:56

his physio is from New Zealand, excellent physio (much better than the old one) not sure how she was trained tho. Should I ask?? would that appear rude??

lou33 Mon 28-Feb-05 11:24:28

not rude to know the credentials of the person working with your ds imo. Ds has physio who are bobath trained, and from the info i have gathered in the past it seems a better style of therapy than the others. Bit complicated to explain online tho

sparklymieow Mon 28-Feb-05 11:26:38

I'll ask her, she is very good at what she does tho. Have to pick up his support shorts this week. great.... more work!!

lou33 Mon 28-Feb-05 11:29:35

listen, if there is anything i can help you with just cat me ok?

sparklymieow Mon 28-Feb-05 11:31:04

I will, thanks lou, I know there isn't many CP mums on here, and I hate asking for help here, as normally its gets pushed down the list very quickly.

lou33 Mon 28-Feb-05 11:32:15

well i mean it, anytime, just do it, will try and help if i can

gotta stick together eh?

sparklymieow Mon 28-Feb-05 11:33:09

yea!! Hows your DS doing?

lou33 Mon 28-Feb-05 11:35:09

he is great

wheelchair, but we have had a few emotional steps with a frame, though he obv can't do it for more than 6ft. Great little chap with a wonderful personality. Starts reception in sept

sparklymieow Mon 28-Feb-05 11:38:01

bless!! Ds now has a wheelchair for distances and going round shops etc, I don't let him use it all the time as I want to keep him mobile, but he is just so slow.

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