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SN children

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Original poster

This is it, surgery time!! :(

72 replies

SparklyGothKat · 16/05/2006 14:26

Just got home from GOS with DS. The botox didn;t have the effect we hope for, though he is doing well. We now are being referred for tests as to his suitablity for surgery. It will be mutli-level surgery, with his hips, knees and ankle muscles and tenons all being released. It will be a 12-18 months rehabilation period afterwards. :(:( always knew this would happen at some point, its just come too fast for my liking!

OP posts:

Thomcat · 16/05/2006 22:40

oh mate, i can imagine, well sort of and it must be shit. Not knowing is always the worst thing aye.

eidsvold · 16/05/2006 22:45

just wanted to wish you the best....

Original poster

SparklyGothKat · 16/05/2006 22:46

Its has been discussed with us so many times before, DS's consultant at the local hospital wanted DS to have this surgery when he was 3!!!!! We said no and went with Botox, it gave us another 4 years, and last year surgery was discussed with the surgeon, she said that she didn;t want to operate then. We tried Botox again (even though it didn't work the previous time) because there was nothing else to try, and he was having epioses(sp) of severe pain and he couldn;t walk for weeks when it happened.
I know that now would be a good time to have the operation, but he is doing so well at school and I don;t want to hold him back, but at least if we do it now, we don;t have to worry about SATs or anything.

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jenk1 · 16/05/2006 23:03

Sparkly for your family that you have to go through this.

Dont know what else to say, will be thinking of you and your DS.

beep · 17/05/2006 09:37

hi sparkly,her operation took about 4 hours with a surgeon on each leg.She stayed in hospital for 3 weeks and then went back 12 weeks post op for 1 weeks intensive physio.

Saggarmakersbottomknocker · 17/05/2006 10:09

Beep - glad that your dd is doing OK - the photos are brill (I was potty1 on your other thread)

Sparkly - have you told your ds much about the surgery yet?

Blu · 21/05/2006 12:12

SparklyGothCat - sorry I missed this - Dino tipped me off., so I came looking.

Have they said what will be happening in the 18 onths rehab? How much of this tome will be folow-up physio etc? In general, I thought tendon release was fairly straightforward keyhole surgery with a v short recovery time? Though clearly your DS's leg is quite complicated!

ggglimpopo is the person with a dd with twisted tibia and leg length discrepancy.

Have you visited the STEPS website - lots of parents of kids with direct lower-limb conditions, someone will definitley have experuienced this, and probably at GOSH, too.

What will they do about the length discrepancy? How great is it? Will he manage with a shoe raise or are they looking at surgical intervention? It can either be bone-lengthening, or if les severe, an operation to slow the growth of th other leg - Saggar's dd had that.

I really do feel for you, and hadn't realised that your DS neded such complex treatment.

From what I have heard, GOSH make a big effort to ensure that the child's life is disrupted as little as possible. DS's bone-lengthening will go on for a year, but they will time the operation for the summer holidays - and say they actively encourage children to remain as much as possible in thier usual lives - apart from anyhting eles the muscles need the physio that happens in RL use. (we are with a consultant at Kings, but she works in collaboration with GOSH and refers us there for 2nd opinion).

Try STEPS.

XXXXXXX

Blu · 21/05/2006 12:17

SGK - DS's schol are planning to put DS on school action plus when he is havng surgery, so that they can get a little extra help to assist him physically (though I guess you DS ha a statement?). We are planning for him to be in school except when recovering from surgery...but then I am recklesly optimistic! . But I am ancouraged by the fact that when DS had his leg in thigh-length plaster for 10 weeks aged one, he was crawling upstairs within minutes of us returning from the hospital!

Original poster

SparklyGothKat · 21/05/2006 12:18

blu, thanks for your reply :) GOS said that they need to length and swop muscles, and release tenons in the ankles. They are going to get splint made with a foot raise in it, for his left leg as he is putting no weight onto that foot, which will make his spine curve if not corrected. We always knew it would happen, GOS have always been truthful with us, so its not a major shock but I didn;t expect it to happen yet IYKWIM.

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Original poster

SparklyGothKat · 21/05/2006 12:19

Blu, my DS doesn;t have a statement. He is on SA+

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Blu · 21/05/2006 12:25

I'm glad that a splint / raise will work for the length discrepancy - DS currently has quite a big raise on his shoe, and on his night splint - more than 5cms, and he's a petite 4 yr old, but he manages v well with it. It could give your DS more stability immediately. Does he wear piedros? DS's raise is on the outside sole of his shoes.

Original poster

SparklyGothKat · 21/05/2006 12:31

he wears splints, has done since he was 3. He has modarate CP, tho to look at him, you wouldn;t think so because he gets on with it, he is very slow at walking tho. When he was dxd we were told that he had mild CP, but since then we have been told that he has complex asymetical spastic diplegia cerebral palsy. His damage to the brain is not the normal damage seen on a child with SD CP, so we don't know what the future holds, and different problems are picked up all the time, it so sad because he is so bright (he is in the G&T group at school, and is reading at a 12 year old level) yet his legs and hands are failing him.

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Original poster

SparklyGothKat · 21/05/2006 12:43

am off to ikea now, didn;t want you think I was being rude and disappearing.. :):)

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Blu · 21/05/2006 18:46

I went for a pizza!
I had no idea about your DS - thanks for explaining. he ounds as if he is doing REALLY well - but the anxiety of not having a typical model or expected pattern must be intense. Anyway, let us know what is happening as this surgery approaches. XXX

Original poster

SparklyGothKat · 21/05/2006 19:00

lol Blu, not sure if you realised but i used to be Sparklymieow. Its not something I normally talk about because DS is just DS to me IYKWIM.

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Blu · 21/05/2006 22:58

I know EXACTLY what you mean about your DS is just your Ds - but it's always when something new comes on to the horizon that it all becomes an issue again. i was vaguely aware hat at least one of your kids had SN / CP - AND that our cuddly meiow had put on black nail varnish .

What happens next? Another consultants appt? Do you know when they will make a decision?

beetle73 · 21/05/2006 23:03

Thinking of you and your family SGK. Really hope it goes well.
(Beep - lovely pictures, lovely girl.)

Original poster

SparklyGothKat · 21/05/2006 23:23

We have to wait for the Botox to wear off and we have to be seen by the consulant in sept/oct-ish. She will then decided what to do.
BTW I have 2 children with CP :):)

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Blu · 21/05/2006 23:35

There were several children having botox injections when DS was in hospital earlier this year - it seemed quite daunting.
Does your other child have 'leg' issues, SGK? I know it is v common with CP.

Original poster

SparklyGothKat · 21/05/2006 23:40

No she has mild CP, and is doing great, tho she is only 5 (6 next month) and you never know how CP will go as the child gets older and heavier.
Botox isn't a 'bad' thing to go tho, generally. Normally DS is sedated and the process of the actual injections is over with very fast, in March however he was put under a GA for his Botox because they had to inject deep into his hips, as he has been having periods of not being able to walk at all, and the hospital thought that he was having spasms in his hip muscles. That was the hardest thing I have ever done, holding him while he was put under GA and the way he flopped in my arms.

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Blu · 21/05/2006 23:47

Poor little mite. It was clear that some of the kids sailed through the injections with a little local numbing, and some were really in pain.

You know what? DS had 4 operations before he was one, the first one lasted 5 hours - and none of it was as bad as the moment of the GA, and leaving him unconscious on the trolley. I never got used to it. I do know why you feel that big weight of dread at the thought of your DS's surgery. I cried hysterically when the addmittance letter for the hospital came.

But all the kids I have seen having huge and/or repeated surgery have all sailed through it with great resilience. Parents are nervous wrecks, of course!

Original poster

SparklyGothKat · 21/05/2006 23:53

Its was when he had the mask on and was saying 'why are you doing this to me??' my heart broke, I was doing what was best for him, but he didn't realise it. I burst into tears when I left that room.
We have been lucky that he has avoided ops. until now (he was born with both legs up by his face (full frank breech), and were told he might need an op. on his legs then, but he didn't :))

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Original poster

SparklyGothKat · 21/05/2006 23:56

BTW what is your DS's dx?? I tried to search but the archives are disabled.

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Blu · 22/05/2006 00:14

SGK - if he's a bit older, and pretty used to injections etc, he can probably have a canula for his next GA - they put 'magic cream' on his hand for 30 mins, and that numbs the skin and raises the vein, and then they just put in a little canula for an intravenous aneasthetic - no struggling with gas. DS had gas first every time, because of the difficulty in finding a vein, but one time, we had aneasthetist who wafted the end of the pipe underneath his nose so that he was already semi-unconscious before he fitted the mask on the pipe and knocked him out fully. Also, the aneasthetist explained to me that the more they struggle the faster the gas works because they breathe faster and get it into their system faster. It will still never be a great moment in being a parent, though, will it?

DS has no fibula, short tibia, small foot with lots of bits missing, one-off ankle design in one leg. All 'mechanical' problems...the only thng that is really serious is the length discrepancy, because of the potential probolems you mention earlier, and it looks as if his femur might be lagging behind and turning out short too. He has hypermobility in his knee, because he is missing lots of tendons that would be anchored in the missing fibula. He's nearly 5, and I'm actually thinking of looking for a meet up for him with other children who have splints or length discrepancy, because he has recently been asking if he is the only person with a small foot.

Uh oh - turning into a pumpkin - g'night

rubadubdub · 22/05/2006 00:15

hi im new to mumsnet, although i did go on about 2 years ago, my dt is nearly 4 disabled, cerebal palsy, water on the brain, nearly walking , anyone know how good botox is.?

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