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.

Finally an UPDATE 6 months after surgery

Sorry for the long lapse of writing on Simon's recovery! Right when he was starting to get around and I had some time to write - summer vacation was here and I had both boys home most of the time. Now they are back in school and some free time is here again as I am only working part time now.

Simon is doing very well. He is actually running ALOT - and FAST especially the last few weeks. Most of the summer he seemed like a very normal child and most people did not notice anything wrong with him. He did have a chronic limp all summer that really only we could see, and his stamina was lower than usual (he is usually very energetic so to most people his stamina seemed fine). We didn't let him go to camp - but I think he probably could have and he got stir crazy being home with mom. The picture here is at the beach end of summer and he did great on the sand - which can be hard to walk on!

I would say it took longer than I expected for him to start walking normally again post surgery. I think you are so glad the cast is off and you feel you are moving forward. It actually takes even longer than the cast was on for them to be safely walking on their own and there is a constant worry about them falling or getting hurt. You have to worry about the normal things kids do - like wrestling with friends or his brother, someone falling on him (and kids do this all the time! I guess it's fun!).

His surgery leg is 1/2 - 3/4 inch shorter than the other leg. We are debating whether he needs a lift. The PT did not think so, but he did have some back/pelvic pain end of summer and we wonder if it's from the leg discrepency and will be looking into that futher. He doesn't complain about it anymore, but he could just be accepting it as normal now and he rarely complains about physical pain anyway.

We saw the surgeon at Shriners at the 6 month mark and they did an xray and all the dead bone seems to have absorbed and there is alittle new growth starting. This is good! He did have full involvement of the head of the femur and it was totally lost.

Now we don't go back until end of January. The 3 inch metal plate may come out in the Spring depending on how much growth has come back and the shape of the head.

In the meantime he is on mild precautions - he can run and jump - but just not off things. He was invited to a bounce house party in a few weeks and we are debating if he should go.... he probably shouldn't but it's hard to keep denying him of all the fun things - but once he is better he should be able to do everything!

Here is his xray with the plate and screws (ugh! those long screws!). I'm glad I didn't see this xray until long after his surgery and recovery!

The Cast is OFF!

Well, I still have a lot of writing to do about our Spica cast experience as I did not post alot the last several weeks.... been alittle busy! However, it is worthy to post that Simon's cast has come off!

yeah!

He was admitted to Shriner's hospital for Rehab 4 days ago, but had a very short stay and actually got to go home on pass overnight and we never spent the night. That was nice since I need to pack most of his food because of his allergies, and he would have been bored and stir crazy (and made everyone else crazy too!).

Unexpected events.... alot of pain when the cast came off. I didn't really expect this. Someone moved him - very carefully, but his knee did bend and that could have been what started the pain. He was "frozen" and afraid to move for over an hour. He was given Loritab (vicodin). He calmed somewhat and we coaxed him to get into the big tub (which was GREAT!). Once he was in the warm water and his leg moved on it's own - he realized he was OK! After that he did great. He went down for rehab and actually walked about 15 feet! That was the second shocker! I didn't even think he'd be able to sit up on his own let alone walk the first day. That was great.

However, we did get alittle too excited I think because that night at home, he wanted to walk all the time and although I was right behind him ALL THE TIME, I turned my head for a second to talk to someone and he ended up falling. He tried to make a 180 degree turn and could turn his leg fast enough. Luckily he was not hurt - just surprised and scared for a minute, but did get up a few minutes later and walked more.



Since that first night he is alittle more resistant to walking. I think he is sore and the novelty has worn off. He is moving ALOT more though and that is progress. He moves all around on the couch or in bed and we have been swimming twice and he is getting some good range of motion in the water. I bribe him to walk from the living room to the kitchen for treats and he can do it without alot of pain. I'm going to start getting creative next week with "where" we go walking to make it more interesting and not just "rehab" or "practice" - because to a 4 year old you know "that's boring"! I did get out his tricycle and was surprised that he could ride it! And at a pretty good clip in the garage. So that's definately doing some good.

Sleep got alittle harder with the cast off. He had been sleeping fine through the night with the cast on - could flip all around and didn't need me after the first 3 weeks. But with the cast off - he is more exposed to pain and it is not as easy to move and he gets stiff. What really helps is we put a small camping pillow between his legs and he is much more comfortable. The therapist at the hospital told us too that if their knees are touching, it can be painful.

Here are some pics of the cast coming off!




Here is the cool "bath tub" they put him in which completely relaxed him and allowed him to start moving. They used this gurney to load him up in from the room and wheeled it right to the bath tub. They then put the gurney over the bathtub and the bathtub actually raised up to make him go under the water very slowly. The bar he held onto gave him the security he needed as he was very nervous at first. But then loved it.




He liked going to "the gym" for rehab.


Keeping busy the last few weeks was not easy. We were both bored and some days quite lazy (at least Mom was!) But we tried to find things to do and we made it through. Here are some pics of things we did:

1. Having a beanbag handy was very helpful. You can bring it almost anywhere and plop them down in it. We brought it downstairs to our playroom as well as outside as pictured below playing with the bubble machine by the swing set. He could also play on his stomach on the bean bag.





He played constantly on this homemade roller board which was his main way to get around the house. The wheelchair was quite large due to the cast and not nearly as fun as this zippy toy.

He painted on the floor (sometimes literally!) as well as helped bake things that were done floor level so he could help.


Though it was a bit of a pain for the "grown-ups" (rather mom I should say), Simon helped with some planting and watering in his wheelchair and got alittle "rare" bit of Oregon March sun.

We went to the mall a few times which was fun, but could get into some power struggles with a 4 year old at the controls of a wheelchair! We tried not to run anyone over! His favorite store was the remote control car store and it was very quite so he got to play


Stay tuned for more info on Rehab! I also plan to write a long article on the Spica cast experience, tips, and things to do while in a spica cast.

The Best Thing Ever....

I never realize how wonderful the disabled parking cards were.... until now. I feel more guilty than ever for that annoying feeling I would occasionally get in the past when all the parking spots were full at Target lets say - except there would be several empty disabled parking spots free. I'd have to park more than a block away... in the rain... two small kids.... seemed like a pain.

But now I realize how much these parking spots allow people to get out and about. I don't know if I would go out with Simon as much as I do if I did not have a temporary disabled parking permit. Today we went to Ben and Jerry's ice cream in a very trendy part of town with very little parking and we were allowed to park right in front of the shop! We usually have to walk blocks and blocks. We have made several quick trips to the grocery store as well because I knew I could easily find parking and get in and out without a hassle (especially now when it's raining so bad and I can't get his cast wet!)

The nice thing about parking in these spaces is that there is usually a space next to the spot for loading into a wheelchair (or stroller) where you are not in risk of getting hit by another parking car.

How do you get one? It's easy. Go online to your state DMV and see if you can download the forms. They are fairly easy to fill out - though you do need a doctor's signature. In Oregon, we needed to bring the signed doctor form to any DMV office and we got the disability plaque immediately. Be sure you have your doctor put their license number on the form! I've heard that some DMV's won't accept it without. Ours is good for 6 months.

Pics and more

Well, Simon is downstairs on the beanbag watching his brother practice pitching with grandparent supervision so I thought I'd run to the computer and post some more pictures!

Here we go!

This is obviously a picture in the hospital the day of surgery. He had a foley catheter in as long as the epideral was in (2 1/2 days). The entire cast was green at this time - which he loved! But when they had to secure the gortex before leaving, they only had blue fiberglass.... so now he is multi-colored!

Below is Simon enjoying the high life! This was the first days home from the hospital, he spent more time in bed. No such luck now! Look at that stack of movies! We rented the hospital tray - but don't really need it now, so are returning it before we incur another month's rent on it ($40). He does still watch the portable DVD player before going to bed at night.

Below is a closer look at the carseat situation. It's the one in the forefront. I added the back to the seat and then built it up with those neck rests that you use on a plane to make it pretty firm and flat. We then use the regular seat belt. They do have harnesses and special car seats for different kid's sizes but this is what they said would work for us. I've thought of removing one of the arm rests which I can do with a screwdriver, but Simon had a fit at the mention of it for some reason. So he barely fits inbetween the armrests with his leg spread.





We put an extra twin mattress we happen to have in the shed on the floor in our den - which is kind of out of the way of the main living area. This has been great for him to lay on his stomach and lean over and play with toys. I then brought down the computer screen which happen to be right near by and he is currently obsessed with nickjr.com free games and videos....

I was quite proud of myself for thinking of this one.... how is he going to poop? Well, at the hospital they mentioned a "bed pan". Knowing my son, I thought he would NOT go for that very easily AT ALL! So I started thinking. We rented a commode and unscrewed the backrest. We put it at the highest leg setting (they are adjustable) and it was almost even with the bed. Perfect! since he is almost flat. We put the pillow and rolled up towel so he is slightly raised and he has been perfectly fine going potty in this chair. We also line it with a garbage bag so we can easily just take it out to the garbage! No mess to clean up! He is also easy to wipe right while he is on the commode (for those who need to know!) and we always kept a box of babywipes nearby. I do sleep with Simon because he has to be repositioned every few hours at least. Luckily shortly after his diagnosis just before age 3, he needed a new bed and I went with a full size and I'm so glad because when he needs a parent to be with him at night - we can also fit and get some sleep unlike on those little twin beds!

At first when we got home from the hospital I just went to bed when he did. But then I never had time to do anything! So I bought these extra long, extra tall bed rails from babies R Us and they are great. They actually slide underneath the bed when not in use. I put my side down when I go to bed and it doesn't even wake him up. These were a good investment - alittle spendy at $35 each - but well worth the break I get when he goes to bed at night. We keep a baby monitor we never got rid of in his room and the living room when we aren't in there so we can hear him stir. He is starting to turn himself from side to side and on his stomach at night by himself! Last night was the first time I think I didn't have to reposition him! But he gets cold, or hot, or tangled in the covers.... so you are awake many times a night - but it's getting alittle better. The first week or so is the worse because they needs meds through the night for pain control (and they don't always want to take it when they are half asleep - but are constantly moaning in pain - so they need it!) Luckily we are past that now.

Successful Surgery - UPDATE

I'm sorry for the long delay in updating the blog! I just can't seem to stay at my computer for more than a second before Simon needs me for something!

The surgery seems to have been successful. He does not have any pain now and the swelling is completely gone and he is moving around like crazy in the spica cast. So that sounds to me like the leg is healing. Three more weeks from yesterday the cast comes off - yeah! A day to party for sure. Though there will still be work to be done. He will not be able to walk - or even sit up for several days as he has lost those muscles from being in the cast. It took him about 2 weeks to walk fairly good after only being in the petrie casts for 3 1/2 weeks. We have a Rehab admission scheduled for April 14th for the cast to come off and to start rehab.

So, as far as the experience so far..... The first several days were hairy - mostly for pain control issues. He did have an epideral (which numbs him for the most part from the waist down) for 2 1/2 days - but it did not work completely. He had a lot of break through pain which was hard to manage. The best drug he was on was IV Toradol - which is like a very strong ibprofen. Nothing else worked as good as this drug - he felt very comfortable shortly after getting it. However, he could only have it every 6 hours and it started to wear off after about 4. He was given Morphine at first for breakthough pain, but it gave him a type of spasm which happens when a child tries to go to sleep. It then "shakes" them awake, causes pain and they can't sleep. He couldn't sleep for 18 hours because of this and that was the roughest part. Finally, valium worked for this (the only thing that worked!) and the morphine finally wore off. He was switched to Oxycodone for breakthrough pain and that worked well.

We went home on day 4 because I was not sleeping at night and I thought it may be easier at home and it was. I was able to give him his medicine exactly on time instead of waiting for staff to come and make decisions and he was fairly comfortable at home in his own bed and surroundings. We went home with Loritab (similar to Vicodin) and oxycodone, and also had on hand Valium for any ongoing spasms. He also used children's Motrin around the clock once home which kind of replaced the very loved Toridol. From about day 6 onward he has had very little pain and from day 7-8 onward he has barely even needed Motrin and we only give him Motrin before bed.

I have so much to write about our experience and tips that are helping us with his care tremendously at home! But I can only do it in segments. Here is some tidbits:

Carseat: This is a bit cumbersome. If your seat goes back all the way flat - you are in luck! If it doesn't then it takes some finageling and it's not perfect. We basically had to build up the middle part of the carseat to raise it up to make it fairly flat. We were lucky that the seat back did go back flat. Af first we only used the seat bottom and that was not as comfortable. Here's a pic on the way home from the hospital. He was in a good mood - thanks to Oxycodone!

For getting around the house he uses a W/C that is reclined. It's alittle bulky - but luckily we have a lot of space in the house. I saw this caster roller on Youtube many months back and thought it would be a great fun toy for Simon to play on. Well, it was a HUGE hit! It's not only a great toy, it gets him around everywhere lickity split and gives him some independence. Here's a pic and video

Simon chasing his brother (they are having fun - really!)

I"ll will be writing more soon on pottying, sleeping, eating and other fun things!

Surgery Day

Well today is it. We are at Shriners for Simon's surgery and he is currently in surgery and we are waiting.... He seemed to do really well and did not seem nervous before surgery. I guess it's the age and a blessing! He chose a green spica cast - so that will be fun. We have a wonderful room and the staff at Shriner's is exceptional as usual. I think I even want to work here myself!

I actually have internet access on my laptop in his room so I can keep things updated on how he is doing if he will let me leave his side for a second. I will be staying overnight the entire hospitalization and he will be here 3-4 days.

stay tuned!