Talipes Information and Parental Support Group
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Alex's Story


Date:    17 Sept 1998 Alex4.JPG (69170 bytes)
From:   Fiona & Paul Colcheedas <fionaetc@alphalink.com.au>

I have twin boys, Sam and Alex, who will be four years old in December 1998.  Alex was born with talipese in his left foot.  At 3 weeks of age, he underwent corrective treatment with plaster casts, up until he was 5 months old.   He then wore a splint until he was walking at 14 months of age.  The orthopaedic surgeon seemed quite pleased with the progress of his foot, and did not need to see Al again until he was 3 years old.
So just a few months ago we returned as requested, thinking he would get a clean bill of health for his little, high-arched foot.  But the surgeon seemed to think he would benefit from surgery.  "Minor - a cast up to the knee, just an overnight stay..."  We were relieved to think it was going to be no great ordeal.   Poor Alex had had enough of a bad run since he was born - we didn't want him to endure any more trauma.Alex1.JPG (14481 bytes)
Just last week, Alex went in for his surgery.  He came out with a pin (which we think looks more like a tent peg) and a plastered slab (to allow for swelling) from toe to thigh.  He was on morphine for nearly three days, he was in so much pain and distress.  On the third day, they began to wean him off the morphine and administered panadol, coedine and valium (for his painful muscle spasms).
Well, coming home has been a nightmare.  His pain has been managed with panadol only, which is a great relief.  But what we weren't prepared for (as with most of this whole procedure) was "Post Operative Stress", or "Regressive Behaviour", as the many phone consulations with specialists and help-lines have diagnosed him as having.  And the valium?  Well, it seems he has an iron cast will, that even valium can't calm him down - let alone the muscle spasms that wake him at night (WHEN he sleeps, that is!).
Has anyone else had behaviour problems with their child/ren post-operatively?  I know Alex is only trying to make sense of what is happening to him, but it's wearing us down to the point of being quite a crisis.  And then there's the other twin to consider in all of this, who has been an absolute angel.Alex3.JPG (15526 bytes)
So it's wheelchairs, tent pegs, tantrums and angst for the next 6 weeks or so. Alex is also afraid to go into hospital again, which he is next Thursday to have his cast changed.  I hope it's not too painful.
And can somebody tell me how pulling a tentpeg out of a little person's foot doesn't hurt very much?  I'd at least want a local anaesthetic.
What about bathing and showering?  Is the 2nd cast waterproof to allow boys to do what boys want to do: play in the sand and dirt with their trucks and tractors, then have a bath or shower to wash it all off?
 

Updated 28 Sept 1998Alex2.JPG (25218 bytes)
Since Alex had his second cast just last week, he has slept better. Whether this is because of the cast, or of the 'sleep talk' therapy, or of the warm bed, or of the acceptance, or of the strategies given to us by a psychologist... we don't know. But our days have been less traumatic (though he still has at least two or three tantrums per day) and our nights a little easier (only wakes about three times and not for hours and hours on end...) since last Thursday, when all of the above were put into place. And next week, we take him to see a psychotherapist, who is supposed to be excellent with children, and uses play therapy to help them express what it is they are experiencing... So, we're doing all we can to make his life a little more comfortable in all sorts of ways.

Updated 10 October 1998
Well, it's been four weeks since Alex had his so called 'minor operation' on his right foot to correct the Talipes. What was supposedly minor, was in fact, a nightmare for all of us, both physically and emotionally. Alex and the rest of us have been in consultation with a psychologist and more recently, a psychotherapist, which has helped us, and him, in managing his emotional response to the opeartion.Alex5.JPG (23870 bytes)
...So we've made it to the four week mark, and are counting down the days until Alex gets his cast removed.
Thank you to everyone who has sent me emails from all over the world to offer help and support - even words of comfort and reassurance. I told someone yesterday that in all our searching for answers and help since the operation, the most effective has come from the internet - in particular TIPS. So thank you!
When Alex had his cast changed (under a general anaesthetic) two weeks ago, his life has been a little more comfortable, though we are still working with his waking and crying and tantrums. But all that has subsided somewhat. It's great to see him now shuffling along on his bum, riding his bike with one leg out at right-angles, and plopped in the sandpit making truck noises. Never thought we'd see that until the cast came off!
We have been advised to encourage lots of play in expressing himself emotionally and creatively. We purchased a hospital play kit and have bought some gooey paints for painting. We have also marked on a sheet the number of days to go until the cast comes off, on which each day we draw a 'leg of his choice' - sometimes it's a plastered leg, a crooked leg or even a 'leg like this one' - i.e. his other normal leg and foot.
I suppose my next concern is what happens when the cast comes off. I've been reassured that it is not very painful when the pin is removed, which is a relief. Is it traumatic for them to have the plaster sawed off? And what do we expect to see what's underneath? The surgeon tells us that he will have to wear a splint for about 6 months afterwards. What does this look like? Is it uncomfortable? And will he be able to walk on his foot straight away or not? I feel that I want to have all the information possible, so that we be prepared...
If anyone can give me some clues as to the 'what next' stage, it would be greatly appreciated. It seems our medical profession forget about the after-affects of their marvelous work. They also tend to assume we know exactly what it is they are talking about. We were even unaware that he needed a splint until I made an appointment for the plaster to be removed.
Thirteen days to go. Feels like years have passed. But in the scheme of things, it's a drop in the ocen. But this drop feels more like a dollop - and we're in the middle of it!

Updated 26 October 1998Alex6.JPG (35807 bytes)
Alex had his plaster removed three days earlier than planned due to the pin sticking out nearly two centimeters and causing a lot of discomfort. Unfortunately, our usual paedatric surgeon was away, so landed a 'stand-in' surgeon for the occasion, who was adamant that Alex should have another cast put on for a further two weeks! But as I am a mother not to be reckoned with after 6 weeks of sleep deprivation and mental torture, he then checked with the receptionist who agreed with me - this was Alex's second and final cast. Phew! (Lucky for the surgeon, I reckon!)
So the plaster is off and we're on a home run now I hope. One thing that may be of interest to other parents is how much Alex's foot has healed with the help of laser-acupuncture, administed by our local GP. Two days after the plaster was off, Alex was still distressed and in some pain, as well as the foot being rather red and swollen. About three hours after the acupuncture, the swelling had gone down and he even put his foot flat to the ground! It's a painless procedure - simply a silver 'rod' with a red laser light coming out of the end and is not invasive at all. The GP recommended treatment twice a week for two weeks.
Tommorow, Alex goes back to the Children's Hospital to have his splint fitted, which he is to wear for six months "when he is up and about". Let's hope this is an easy transition for him, both physically and mentally.
But all drama and angst aside, his new foot is perfect! The photo we took prior to surgery and after the cast came off really illustrates the remarkable difference in both structure and length.
I hope our story is as beneficial to others, as the stories we read and the support we received, were to us..

Updated 20 November 1998
Alex has his plaster off for about a month now, and is walking with an accentuated hobble. We are hoping things will continue to improve and that one day soon he will be running and walking and spinning around like he used to, before the operation!
In retrospect, how little we knew before we embarked on the surgery! Even when the plaster eventually came off, we had no idea that minutes later another cast would be put on, to make a casting for the splint (AFO). In all of this, it seemed that the medical staff did not take into consideration at all how Alex was going to fare with all this. He was distressed when the cast came off, only to be told by the surgeon "It doesn't hurt, he's just not used to an unplastered leg". Well, surgeons can be wrong, you know. It did, and still does create some pain and discomfort - especially if he knocks or presses hard on his foot. We then had to explain to Al that he was going to get another plaster so they could make him a 'special shoe', and that the plaster was only going on for a few minutes. (There will be a photo here soon of this plaster going on, to make the cast for the AFO.)
And while on the subject of the AFO (should be called a UFO - it's such a alien thing to wear!), it doesn't fit inside his shoe, like it's supposed to, so he only wears it at night. The surgeon said he was to wear it during the day time only, and didn't need to wear it at night, but we're doing the other way round - it just makes more sense. We figure that his foot is being held into position with a shoe during the day, and the AFO is supporting it at night. We're to go visit the surgeon next week, so I suppose he'll let us know if that's an okay thing to do.
Anyway, the good news is, we do have our little boy back - the one with the same cheeky smile, the one with all the energy and the one who just loves to play outside with his trucks. The more his foot heals, the better he feels - less frustrated and more happy. It's been a very long journey, and we're glad we've come out of the worst bit. It seems that the post-operative stress he suffered has not had a long-term effect. But then again, the day is young!

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