steps-charity.org.uk

[tynliz]

Hi I know some of us have put up questions and reponses to tendon transfer questions but i thought if we have one with info advice then bum it every now and then.

If you don't want to retype all the previous info i will copy and paste in the next few days.

A bit of history first my 6 nearly 7 year has had his tendon transfer 3 weeks ago

my first and for us the most important peice of advice is stay one step ahead of the pain .
Teddy had 5 days of pain worse at night and cosequently was exhausted and cried more .
(Teddy has a high pain thresh hold )
stay ahead of the pain even when he seemed pain free i was giving him calpol as we did think he was doing really well and then he'd be in pain and the drugs took an age to kick in .

Secondly for me was my complete misunderstanding about how long the recovery is from the op till he'll be back to his post op physical ability could be as long as 4 months !!
i thought 2/3 at most
so thats my first titbit of info more to follow
Liz and Teddy x
_________________
Ted was born on the 12/9/03 with a talipes to his right foot

Tendon Transfer July 2010
Splint July 2010
I am running the Great North Run for Steps Sept 2010 !!

[melissa]

Hi Liz

Good idea for a thread - it does seem like more people are asking for tendon transfer advice?

Keely was 4 when she had her tendon transfer, I've listed some advice / ideas from our experience.

1. Don't leave the hospital too soon after the op. We went home the same day, as we thought Keely's pain post op. was undercontrol. Half an hour into the 2 hr journey home, morphine wore of and Keely was in real distress with the pain.

2. Keep on top of the pain with calpol + ibuprofen - even when pain seems to have gone. (Nights seemed to be worse than the days).

3. Get a wheelchair with a leg support (we got ours from the Red Cross). They don't seem to have many for children so plan ahead and book one. Book for longer than you think - Keely still didn't want to walk for 2+ weeks after the casts were removed.

4. Get in plenty of thick socks to cover the cast / toes. When your child does start walking in the cast, you need to protect their toes.

5. Foot will be swollen after the cast is removed - Keely got measured for school shoes a week after having the cast removed and she was two width sizes bigger than her non-operated foot. Took 4+ weeks before she could be fitted for shoes.

6. I think its quite common for children to walk with their foot turned outwards - it takes a while for the brain to learn how to respond to the new position of the tendon.

7. If the achilles tendon is lengthened as part of the ATT surgery be prepared for the size of scar. I was expecting a tenotomy size scar - Keelys' was ~ 2-3cm in length!

8. Don't feel quilty if your child has to have the ATT surgery. It is recognised that a small % of children will require this surgery as part of the Ponseti treatment, even when the boot and bar protocol has been followed.

9. Finally - 3 years on Keely is an active 7 year old, loves horse riding, riding her bike etc and people who don't know us can't believe she has ever had anything wrong with her feet.

Mel

[CNN]

All this information is invaluable, thank you. I have no idea what to expect, how much time to take off work etc., and this info helps a lot.
Thanks,

Ciara

[tynliz]

Back again
following a no wheelchair post op available and splint not being ready and then today "you live outside the county " so can't see the physio !! grrrr
(consultant on holiday so it all went pear shaped around us )
make sure you have everything in place for this and any procedure weeks in advance .
I am quite pushy and still this happend to us .

We did see a physio after asking for the hospital directors name and email addy

Make sure everything is sorted do not assume it will be
thats another piece of info for tendon transfer

on a brighter note
take all shoes with you and thick socks as the splints are very stiff and quite large .
Liz
_________________
Ted was born on the 12/9/03 with a talipes to his right foot

Tendon Transfer July 2010
Splint July 2010
I am running the Great North Run for Steps Sept 2010 !!

[tynliz]

Just a quick update
Teddy had cast off and has been wearing splints for about 2 weeks
we are back to see our consultant on Tuesday which will be good as not sure the foot is looking to great.
It's a hard one really as experience and treatments do apear to differ and experiences are hard to find

On a happier note been swimming etc although not convinced this is helping he is struggling to put weight on it
so anyway just a note to bump this for others.
ps (don't start me on shoes !!!)
Liz
_________________
Ted was born on the 12/9/03 with a talipes to his right foot

Tendon Transfer July 2010
Splint July 2010
I am running the Great North Run for Steps Sept 2010 !!