Monday, August 11, 2014

A Success story... almost a symptom free life after Perthes

I've wanted to post an update as it's been a few years and we are so busy living a more "normal life"  I forgot briefly how important it is to share with everyone that there can be a "light" at the end of the tunnel...There are successes and normal lives to be had after Perthes - though during the long and tedious process (years!) and the uncertainty that comes with it, its easy to question if things will ever be normal again.

I remember in the early years of Simon's perthes disease I would search online for stories of other kids with Perthes... and I think most of the ones I found were the severe cases that had rockier outcomes.  I'm thinking this may be more of the outliers than the norm now that we have been through a very severe case ourselves and I've talked with other parents who have come out of it in a postive way.

That's why I wanted to write with a update!   This month is exactly 6 years after Simon's first symptoms of Perthes disease -  right before his 3rd birthday.    It's now been a year since his last close monitoring appointment with Shriners where we saw the best Xray of his hip that I've seen since this all started.

Yes, the joint is  bigger than the other side - by quite a bit.... but it is beautifully and perfectly round!  And it had great space all around the hip socket.  Yes, it sticks out of the socket - 40% too much.... but the doctor is shocked at his fantastic range of motion.  (I will order a picture to show you!)

No limp at all.  No visible leg length discrepency.  He is one of the fastest runners for his age group.   He can do anything - there is no restriction and there is nothing he cannot do.  No one who has just met him in the last year or two would ever believe what he went through or that he ever had any deficit of any kind.  It's just unbelievable how "normal" he is - and actually how athletic he is - even beyond his age/size.

Speaking of size,  he is still small.   But is up to about the 10% in height for his age - up from 5 - 6% during his perthes years.  And he is still super energized and can be a ham (see above pic!) but has mellowed out tremendously over the last few years and I think less pain issues - means less crazy behavior too!

He occasionally had pain flares the last few years - even after everyone thought he was "fine".  This usually happened during a growth spurt or when the weather turned cold quickly (December).  I think the growth spurt affected the placement of the joint in the socket.  Since the joint is alittle too large already for the socket, it had to readjust to the growth change - and he is a "spurter" and not a slow grower.   He will grow and inch or two in the Spring over just a few month, then another smaller spurt in the Fall.    But even the pain flares have lessened.
He does mention that he can't sit on the floor at school for long periods of time without feeling sore - but he just takes it in stride and readjusts himself.   It's not anything that holds him back.

What was helpful for us was late in Kindergarten  (2 1/2 yrs ago?) we came up with a school supported plan for health reasons which allows him to sit in a chair instead of the floor (if he wants or on a worse day) and explains that he may adjust his seating position regularly to accommodate stiffness in the joint.  This follows him each grade and helps me not have to "explain" everything all over again the start of each school year and class to each teacher - and gives it some substance (and diagnosis) behind it.  It gave him a reason (and excuse) for his wiggliness sometimes in class - thought that's really gotten better each year!

The most amazing current accomplishment is the start of competitive soccer (U9), which he has wanted to follow in his older brother's footsteps and has been doing for several months now with no complaints or limitations. He had tried to join soccer many times over the last 3 years, but he couldn't keep it up after the first few weeks because he would start to have more and more pain issues.   What's amazing too is that he is so recovered that there isn't even a reason to tell his coaches or anyone that he had this major hip disease, or "may need to rest" -  it's just not necessary!   And after years of doing this,  it's amazing when you really have no reason to mention it anymore.    It's still hard for us to think -  we can file this away now.   It's not a part of of current life anymore!

There is the risk that his too big for his socket hip joint will develop problems in the future - he is not 100% out of the woods never to think of this again.   When he becomes a teen and has bigger growth spurts, that big joint may stir up trouble.  He will probably have arthritis at some point during early adulthood.  But for now -nada!   He is great!   We don't have to talk or mention the word Perthes in our lives.   We are relishing in this new life.

So there is hope - it's a long journey and the progress is ever so SLOW and TEDIOUS.  But hang tight.  Know that each phase takes "x" amount of years.  It's true - it really does.  A year or more for the bone to break down after the initial event... then it seemed a year of stagnation while the arteries rebuild new blood lines to the joint to feed new growth... then 2 - 3 yrs for it to slowly slowly grow back... and all the time hoping it gets it right the first time.   5 years - Simon was like a text book on the time frame.  We were lucky - ONLY 5 years... some have it longer than us.    But if you told me "only 5 years of this" when he was 3 or 4yrs,  I'm not sure I could have handled it.  But I eventually got use to the time frame and started living life WITH the limitation and then life got easier.

And here we are today - out the other side.   Unbelieveably grateful.