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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

just got home from hospital

19 replies

sparklymieow · 19/01/2005 14:09

Today was DS and Dd1 six monthly checkup and Dd2s yearly checkup. Ds is being referred to Stanmore hospital because he now needs surgery Dd1 is doing ok and Dd2 is doing great! I also had to take DS to get a night splint made and a shoe raise put in, but when the doctor measured him, he found that Ds' legs are actually the same size but he has an apartant difference, which means that when he was measured from the chestbone down to his ankle bone there was a 12mm difference and it means that there is a problem with his hip or a curve in his spine. DS has to have xrays now to see where the problem lies. I feel terrible and don't know how much more I can take

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logic · 19/01/2005 14:14

I'm sorry that you are having problems, mieow. Just wanted to send hugs and hope that your little ones will be ok.

heartinthecountry · 19/01/2005 14:14

Oh mieow, hugs to you. Wow that sounds like a marathon session at the hospital. No wonder you feel exhausted by it all .

Original poster

sparklymieow · 19/01/2005 14:16

it started at 9:30 and I finished at 12:30!!

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Potty1 · 19/01/2005 14:22

Hugs to you mieow - you must be worn out.

Dd has a leg length discrepancy - its notoriously difficult to find out exactly where the difference is , leg, hip or spine, by taking manual measurements, or how much it is. The best way is by CT scan, hopefully that's what they will do for your ds - it's very quick, just takes a few minutes. Dd's difference was thought to be 1.5 cm by manual measurement, on CT its 3cm with some compensation(?) in the hip.

chatee · 19/01/2005 14:26

hugs mieow,
it must be the time of the year for those appointments as we have ours with dd next monday......although we're still awaiting an emergency appointment for orthotics due to ill fitting new splints
got to go babe awake
take care

Original poster

sparklymieow · 19/01/2005 14:26

Thats a great help Potty, I will ask for a ct scan when we get to Stanmore, as that where the physio and the doctor want him seen. We have been saying for ages that DS has a problem with his hip and leg length but everything was put down to his cerebral palsy.

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Original poster

sparklymieow · 19/01/2005 14:34

typical doctors eh??

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Dingle · 19/01/2005 16:11

Mieow, can't give any advice, but I can send you our love and hugs to help you through it all.
I hope things get sorted out soon for all of you!xxx

misdee · 19/01/2005 16:24

it never rains but its pours mt dear. you'll get thro this just as you egt thro everything. it all seems to much to bear at times, i know, but you'll do it.

Merlot · 19/01/2005 19:03

Feel for you mieow >

Davros · 19/01/2005 21:46

Sorry to hear you've been put through the wringer Mieow (still sparkly though eh?). Hope you can have a slug of wine tonight and relax a bit.

Original poster

sparklymieow · 19/01/2005 21:55

Whoops haven't changed from my xmas name, so well....

I have been away with the pixes today, welling up while driving, and very quiet. I can't believe that we have to go those investigations again. Poor DS is struggling atm with his walking
and I know its to do with his hip/spine, I am hoping that whatever it turns out to be they can fix it and he will be able to walk further again. I feel so sorry for the little lad as I know that there is nothing I can do for him except put him through more pain The physio said to keep up with the physiotherapy, gaiters and splints day and night, and hope we can keep him mobile. I have thought about taking him to a private hospital to have all the investigations possible, just so I know full stop what is going on.
I have a feeling this ain't going to be the last thing that will be discovered, and it wouldn't surprise me if it is something else, after all they have said that DS' CP isn't typical, and his
brain damage isn't typical too.
Fingers crossed and I'll keep you all updated when we know more.

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ThomCat · 20/01/2005 10:34

I wish I had something helpful to add, just want to say sorry babes and hope that the investigations show a problem that can be easily resolved.
TC xxx

Socci · 20/01/2005 10:39

This reply has been deleted

Message withdrawn

Merlot · 20/01/2005 10:49

Life's crap sometimes isn't it? . Hope things improve for you Mieow.

Original poster

sparklymieow · 20/01/2005 11:00

Went and spoke to Ds teacher today and said that the hospital had discovered a problem with his hip or spine, and that is what is causing the pain, and she said she will not make him do PE as the last couple of weeks he has complained of pain, so she hasn't been making him do it anyway. And she doesn't want to cause him more pain. Bless her!

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chatee · 20/01/2005 12:18

weird mieow isn't it....my dd as you know has cp, she also has a leg length discrepancy that is added to her poor gait and has already had corrective surgery as a baby for being born with a dislocated hip.....she wears afo's and a lycra suit(or should i say SHOULD wear afo's and a lycra suit as both of the new ones were ill fitting so she is wearing her old afo's that are so old only come half way up her leg and the velcro is non existent.DD can do about 5-6 steps unaided but uses a K walker all the time.
hope your feeling a little chirpier today....lots of love chatee xx

Original poster

sparklymieow · 20/01/2005 21:32

Chattee, Ds has been referred to get the lycra shorts too, I have put the splint and gaiters on him tonight, poor little lamb, he is so accepting of it all too, just gets on with it, I think it upset me more then him

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Blossomhill · 20/01/2005 21:35

Oh Mieow . Hugs to you my love Blossomhill ((((xxxx))))

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