Friday, November 27, 2009

Shriner's Appointment early - Surgery planned

Shriners called us and had a cancellation so we got in early - this past Tuesday! We were so happy! We were really pleased with the surgeon and his knowledge and experience with Perthes. He feels Simon needs the femural osteotomy. We tried to hear everything the doctor told us, while Simon was bouncing loudy around the room (after we had been there for a few hours....) so we are still trying to remember everything and will continue to ask questions.

Between the Seattle Orthopedist and the Shriner's MD - (Dennis Roy) we have learned that Simon has a severe case of Perthes - especially for his age. He has lost some containment of the femural head. The ball or head has also become very enlarged and is about 3 times the size of ball on the normal hip. We could clearly see this on one slide of the MRI.

Dr. Roy confirmed that there is no one easy answer or solution with Perthes. Doctors all over the world are trying different strategies at different times to get the best outcomes for these kids. Nothing can cure or stop the process of Perthes. The intervention is just trying to fix the "fallout" so to speak. His decision to do the osteotomy is basically based on his long time experience with the disease against the best outcomes he has had. He feels that doing the surgery now will possibly prevent doing "salvage surgery" which is the worst case scenario with Perthes and what often happens with kids who aren't diagnosed until a later age. This is when the bone has already grown in (and not in a good way) and they try to make the best out of the situation - but often have poor outcomes.

By doing the osteotomy now, they hope to position the head into the socket and get the bone to grow back in the best shape possible. The surgery entails breaking the femur and angling the top part of the femur into the hip socket and putting a plate on the femur where they break it. In about 4-5 months, they remove the plate. He will have a spica cast most likely for 6 weeks post surgery (this is the cast that goes from toes to arm pits). When the cast comes off, he will go back into the hospital for a few days of Rehab and then have several weeks where he will need to rebuild his muscles to walk again.

After this is all said and done, the doctor said he usually lifts a lot of the restrictions on activity. Yeah, there is some hope on the horizon. One downside, is that in 4-5 years when the bone is all grown in and he begins to grow more, they will have to re-evaluate if the head is too entrenched into the hip socket which can happen and impede movement. If this happens, he will need to go through the reverse surgery (breaking of the femur to pull it back out some....). Hopefully this won't be the case.

So, we felt really good about our experience at Shriners. They were so nice and patient with Simon. He is also doing a few extra tests to confirm that he doesn't have any other type of dysplasia going on because of of few unusual aspects of his case (such as his small size .... he is only in the 7th percentile height for his age and a few other bone abnormalities). However, he feels pretty confident it is Perthes and so do we. But it is nice to put our minds to rest as we move forward with such a big surgery to make sure it is not really something else happening.

So we are on a wait list for surgery. It can easily be 3 months away - and that is expedited in the Shriner's system. They provide all of their services for free - so there can be a wait for things. But their experience is fantastic and we feel it is worth the wait. He will be on a "short call list" in case another child has to cancel their surgery - so we will plan to be ready after Jan 1st.

In the meantime we are going to try and keep Simon as healthy as possible so when his surgery date arrives he is ready! We are also doing research on alternatives to the Spica cast - such as a hip spica brace and plan to talk to the Care coordinator at Shriners about this next week. Simon has a bad reaction to the Petrie cast because of his eczema and we feel a brace would save us all a lot of agony.

Stay tuned!!

Friday, November 13, 2009

The Latest! To Shriners on Dec 22nd

Here is the latest update after our Nov 2nd appt. with Seattle Children's hospital. We actually did not go in person, as the lead Ortho MD Dr. Goldberg felt that additional test may be needed and didn't want us to drive the 3 hr trip just to need more tests and drive back. He actually wanted to do the tests when we got to Seattle, but because we have Kaiser insurance, we couldn't get it covered or approved, so we waited to see what he thought of the tests we've had so far.

Anyway, Dr. Goldberg and a team of ortho radiologist specialists reviewed all of Simon's tests since Jan 09 including 2 sets of xrays, the arthrogram, and the MRI from October '09.

The conclusion so far is this: Simon has a somewhat unusual course for Perthes for his age. He most likely DOES have Legg Calve Perthes, but he still wants some skeletal xrays to definately rule out a skeletal dysplasia. One support of this concern is that Simon falls in the 14th percentile for height for his age which has steadily gone downward as he gets older. This could be due to the steroid use for his asthma, but only the skeletal xrays will prove it.

He also states that Simon has a severe case of Perthes and recommends an osteotomy. Because of the distance to Seattle children's hospital which would require an extended stay away from home, Dr. Goldberg suggested we try Shriner's children's hospital which specializes in pediatric orthopedics and recommended Dr. Dennis Roy. They also happen to be right here in Portland only about 5 miles from our house! We were very grateful that Dr. Goldberg did an extensive write up of his findings, describing what he saw in each test which helped us understand the severity of the situation.

So we applied for Shriners hospital for care last week and just found out we were accepted! We feel so fortunate! The soonest appt. is Dec 22nd and we are on a will call list for a cancellation earlier than the 22nd. This is also fortunate since some kids have to wait 4 months for an appt. after being accepted to Shriners. Shriners hospital is well known for it's excellence in comprehensive care and compasion for children and they cover all expenses as well for their care.

In the meantime, we are trying to get Simon as healthy as possible. He started on a barage of liquid vitamins to include multivitams, extra calcium, digestive enzymes, OPC, and probiotics a few months ago and has not had his usual Fall list of illness like the last two years. We are also seeing a NAET provider who started him on homeopathic meds for his respiratory illness (Asthma) in hopes that we can wean Simon off his daily inhalers (which may be harming his Perthes progression) This will be a VERY slow process so he does not have an asthma attack and we expect it to be early Spring before he is hopefully off all inhalers.

He seems to be doing OK physically except that he falls down unexpectedly almost daily - but doesn't seem to hurt himself. His leg just buckles under him. He also almost falls much more frequently and you can see that he barely recovers his balance over and over again because of the loss of strength in that leg.

We are hoping for the best - at least the best care and follow up care we can find to get him the best he can be in spite of this illness. One day it will hopefully be behind us...

Thursday, October 15, 2009

Finally an update! and xray too!

I have been needing to put up an update on Simon's progress- but there has been absolutely no time - but I haven't forgotten! I'm coming out of a (month long) fog and ready to report! He is riding his pedal bike without training wheel! Yeah - he is finally tall enough to put his feet down. But of course he fatigues very easily so it's only a few minutes at a time then rest. But he still has fun!

Well, we went to Seattle Children's hospital on Sept 22nd just to get confirmation that we were still on track with everything and got a big surprise. They felt he was not on track with what they expected from his xrays and things started to unfold from there. It was suggested we see a surgeon... but one was not there at the time, so we returned to Portland.

Simon's case was presented at Ortho grand rounds the next day and then we were called. There was concern that Simon could have another illness (possibly...) that needed to be ruled out called Skeletal dysplasia. There are hundred's of different types.... so there was no use going on the internet to try to figure out what this might mean for him (because some are a lot worse than others I didn't want to freak myself out!) . There was a doctor at that meeting that I guess is the top doctor for skeletal dysplasia in the NW and he took an interest in Simon's case and would like to see him. He also wanted an MRI and some other tests.

It was felt by several doctors that Simon's progress was quite rapid and the deterioration of the bone more advanced than expected for his age. The ortho PA also told us that she felt that surgery was definately in the future and they are concerned the head of the femur will soon break through the cartilege that holds everything together so to speak. I know, I'm alittle rusty right now on all the language and terms... lack of sleep and overwhelmed. Here are his xrays from August:

You can see on his right hip that there is bone travelling outside of the hip socket. No one is quite positive what this means - but everyone seems to think it is bad... You can also see the inside of the femur bone near his pelvis is shorter (the curved part) than on the other side. This is also bad.. and a sign that the hip joint is being pushed outward. The Ortho PA in Seattle said that the muscles will keep forcing it outward.

So here is the plan. He is getting an MRI under sedation on Monday Oct 19th which is suppose to rule out skeletal dysplasia (yeah it's at 1:45 pm and he can't eat after 3:30am...) . We see Dr. Goldberg, the specialist on Monday November 2nd and get his opinion on the whole deal...... High hopes here that we will at least know what we are dealing with and where we are headed.

Simon seems to be falling more lately. He will be running and playing and his leg just gives out. Otherwise he seems fairly normal and happy. Doesn't complain. Doesn't walk very far either. After about a half block of walking - always wants me to carry him - not sure if it's fatigue, pain, or just his age... but definately a pattern.

That's the update for now! I promise to update more often and after the next appoitments!

Thursday, September 3, 2009

Back to Seattle on September 22nd

Just a quick update.... We decided to take the 3 hour trip back to Seattle children's hospital in a few weeks, where we had a second opinion done last February. We would just like some confirmation that we are on track (with just waiting things out at this point) and also have them take a look at the hip xray - where there is a thin line of bone coming from the flattened head of the femur out to the edge of the ball - if that makes sense. I wish I could get a picture of the xray online! I may try to request that.

Simon limps at his baseline now - whether he's running or walking. I don't really know what that means - OK - or bad. But he's sleeping through the night and doesn't complain - so we are just waiting.... He does fatigue easily so we don't go anywhere where there is more than 5 minutes of walking without a stroller (the umbrella one) - or else I'll be carrying him! And he does seem to be getting heavier! I guess they do gain weight.... ha! - but he's only gone from about 31 to a max of 34 pounds in the last year. But he's gained alittle height so that makes it trickier for carrying. Luckily for us, we can still do it.

So I'll post an update after our appointment in Seattle. Lots of times it's just status quo info.... so don't get too excited!... I use to wait on pins and needles for the appointments - hoping for more info, something to say we were moving in at least some direction - good OR bad. But with perthes, it's usually a snails pace progression - so a lot of times, little changes between appointments. So I try not to get too excited. However, I will be very happy if we hear that things are looking favorable for NO surgery - at least for now. So we'll see!

Tuesday, August 25, 2009

How we are coping....

I'm feel like I've been slacking with the posts! It's because life has been alittle hectic to say the least - with Simon's symptoms and behavioral reactions to them, end of summer crazies, and big brother broke his finger and sprained his ankle.... so everyone is cooped up and going bonkers!
Well, the above picture coincides with the title of this post! We have planned many times to get rid of the binkie..... but then something would happen with his health, and we couldn't do it....
Then it was when he turns four - which is just in about 10 days....
Well, we just went to the dentist - and he is all for not getting rid of the binkies! So there, we are keeping the binkies for awhile longer. And in the picture above you can understand why. Now he does not put all the binkies in his mouth usually - but this does describe how he feels about them! They are his security - his blankie so to speak - and while we are trying work on his high energy behavior - we thought taking away his main security may not help things too much.
I know we will get some slack for this - and already have over the last year! Luckily for us - he is still just the size of a turning 3 year old - so that may help some. We know that he won't be going off to high school or walking down the isle carrying his binkies.
As far as his Perthes goes - we are coming off the most recent flare. He still limps more than early in the summer, and we aren't sure what that means as far as the final outcome of this disease, but we are using less Motrin, and he is sleeping now through the night. So for that we have to be happy. His limp is more pronounced in the morning and tapers off in the afternoon.
We don't see the Ortho MD until November. We've considered going back up to Seattle Children's hospital where we had a second opinion last Feb to have them look at his xrays again... but I haven't gotten around to making the appointment. They seem to be in line with what our current doctor has done, so it seems like a big trip to just get some pat answers. However, for the peace of mind we will probably do it. You want to know that you did everything you could when you are facing a not so perfect outcome like we have been prepped for. Until next time!

Thursday, August 13, 2009

Update on last Ortho appointment...

I'm usually so prompt in putting up an update after Simon's appointments with Dr. Turker, however this week was so exhausting, I've been lagging. Sorry!

The news is definately mixed. The xray did not show a significant difference or anything serious enough to require immediate intervention. However, the doctor states he has a very serious case - expecially for a 3 year old, and he is very unsure how things will progress from here. It was quite somber. He did seem impressed though with Simon's ROM - which I really think is a result of going to the swimming pool. Simon can practically swim now and spends half the time in the pool exploring under water and moving his legs all about on his own. This allows his leg to move in all sorts of positions that he would otherwise not move it on his own out of water or while walking or running.

On the upside, Simon's mobility has improved each day and his limp is starting to be less and less noticeable. In the morning right after getting up, it is more prominent. But as the day progresses, much less so. He does do this "gallop" running which he has done a lot since he has had Perthes, which alleviates some of the pressure off his right leg when he is running. We have been giving him Motrin - and hopefully that has been helping.

His behavior has been quite awful. Loud, wild, not listening..... We are hoping it is just a reaction to this flare up and not some new stage that will test our sanity....

Next appointment is in 3 months with xrays unless something happens in the meantime to make us concerned. It's really a waiting game at this point.

Friday, August 7, 2009

BIG Setback. Hopefully he has just overdone it....

Simon started limping a few days ago. He didn't let it slow him down so we weren't worried. We asked him if his let hurt and he said no. Each day he limped more. Yesterday he would only take a few steps and walked on the ball of his right foot and would ask me to carry him - which I did of course! Today, he can barely walk at all and says it hurts. Ack. A week ago, he seemed fine.

We weren't suppose to see his Ortho MD until Sept 1st. I called him up and he's seeing him on Monday August 10th with new xrays. He is on modified rest and motrin around the clock until he shows improvement until Monday.

We are hoping it's all just inflammation. He has been in summer camp the last 8 weeks and today was suppose to be his last day (but he didn't go of course). We spoke with his teacher and they said that he doesn't jump.... (yeah, he finally gets it!) but he runs constantly - including up and down a small hill on the playground. This actually made us feel alittle better. If he over did it the last few weeks, then it could just be inflammed tissue and not a worse scenario of his hip coming out further from the socket. He also says that there is a clicking feeling or sound in his hip. This doesn't seem like it could be a good thing. But again , no way to tell what's really happening under the skin.

It's the terrible waiting game of Perthes. Even waiting until Monday is stressful - wondering what they will say, what the xrays will show. But we are happy we have a responsive doctor willing to get him in immediately - because we know from his nurse he is booked out 2 months.

More updates to come Monday afternoon! Lets keep our fingers crossed....

Tuesday, July 7, 2009

Status Quo - waiting for xray to see whats really happening....

Before I begin - this picture is of Simon (the little one!) and his big brother Sebastian (6 1/2) on 4th of July on their balance bikes. My older one already rides a pedal bike but he was test riding this bigger version balance bike for kids 6-9 years old for my balance bike business. And no, I don't let Simon ride barefoot or without a helmut! I got them to pose briefly for me (which is a rare opportunity!) before sending Simon back to get shoes and his helmut on!

Things are status quo with the Perthes. Simon tires out easily when walking and after a few blocks (or less) usually wants me to carry him (luckily he is only 33 pounds - but he still feels heavy!). I noticed over the weekend when he is running that his gait is off slightly and there is a small gallop. He doesn't ever complain about it and he is sleeping fine through the night. So who knows exactly what that means! It doesn't always mean good news for the hip - but it does make our lives easier for now with no major issues glaring down on us.

His allergies and asthma seem to be in check (barely sometimes) so we are hoping to take him off the zyrtec in August - which I think makes him alittle more hyper than his usual self. I did get a metal frame backback for our upcoming vacation so he can ride back there instead of me carrying him! Luckily since he is small he can still fit OK and we tried it out the other day. This is probably the last summer I can use something like that. When we went camping recently, I ended up carrying him a lot down the hiking trails and that got tiring after awhile. Since I use to be an avid backpacker, I think the backpack will work just fine.

Wednesday, June 17, 2009

Not much new on the Perthes front... however....

I wish I could post something interesting and new about Simon and his Perthes. However.... we are so consumed with the weather change and how it's affected Simon's eczema and asthma, that the Perthes has taken a back seat (WAY back!!) He had a bad asthma attack 2 weeks ago and had to go on Prednisone.

The Prednisone kept his eczema (and asthma) under control, but once off that, the humidity and seasonal allergies seem to have sent thing south. Poor guy has little scratches all over his body from itching! We tried stopping his Zyrtec because we thought it might be causing his irritability. However we started it up again because his skin was getting so bad and today he does seem alittle better.

It's so easy to forget how these season changes affects his health! We haven't had these types of problems for several months (and I think we innocently think it's gone for good...). Hopefully in a few weeks things will settle down and we will skate through summer. Fall is always bad for him and his asthma.... so we are gearing up this year to increase his daily inhalers (at his doctors suggestion) to see if we can have a peaceful Fall this year. Stay tuned!

Monday, June 8, 2009

Good news, so-so news.....

Simon had his check-in with Orthopedist Dr. Turker today. We ended up having xrays which we didn't expect, but I'm always happy for because I get to see what's happening under the skin!

Good news is that things aren't worse. The growing bone looks aligned with the top of the femur. His ROM is better than before the casts. He is active and not in pain, and not really limping (barely noticeable).

The so-so news is that there is still a deformation so to speak or growth outside of the socket. Dr. Turker states that this will not go away. If it remains stable and does not get worse, and the rest of the bone aligns with the top of the femur, then we probably won't need surgery. These are a lot of ifs and he is cautiously optimistic. However, even he says he cannot say what will happen next. No one knows with Perthes disease what the next xrays will show. Simon's right leg will also probably be slightly shorter than the left and this may cause some problems later on. Still unknown.

So we will just continue onward. Swimming twice a week. Biking as we can. I will do some small form of stretching exercises, as Simon tolerates and does not cause pain. Dr. Turker feels that when a child is in pain from stretching exercises, they will not move freely because of that pain and it will further cause stiffness and possible poor regrowth in the joint. Again, with this illness, there are so many different schools of thought! I often hear parents state they saw three doctors who all told them different things or ways to treat Perthes. And this is true. Even the doctors we saw (three different doctors) confirmed the wide differences in treatment for this illness! So we are going to have faith and trust our doctor and hope we have a positive outcome. He wants to see Simon back in about 2 1/2 months with more xrays so that will be right before school starts in the Fall.

So we will forge ahead with summer plans and enjoy!

Monday, June 1, 2009

Coping with multiple health issues - and enjoying life anyway!

The other day someone at work asked me how Simon was doing - " you know, his allergies and asthma, is everything under control?" Oh those ole things I thought to myself! Oh yes, those are old hat. You must not have heard about the Perthes. That's the "big thing" I was thinking.

But it got me thinking. With each issue Simon has dealt with in his life - each one WAS a big issue at the time - almost all consuming just like the Perthes was the first 6 months after his diagnosis. Each diagnosis or health issue set off a rash of research on symptoms and weeks of worry... does he really have it? What are the symptoms? What is the treatment? What are the alternative or natural treatments? And most of all.... when will he outgrow it (or more like - when will it go away?!). Once we exhausted all our reseach and started just living with the issue - it got easier and we stopped thinking about it so much. But then something else would creep up...

It (really) started the day he got home from the hospital and he was pooping every 15 minutes OR MORE. The advise RN said this was normal - but I knew it wasn't. I was going through boxes of diapers a day! So I started cutting out foods I was eating because I was nursing. No big deal. I did this with my oldest. Couldn't have dairy. I guess I could survive. But things only got worse. The eczema started around 5 weeks old. Then the severe scratching/itching. I had to sleep with him to make sure he didn't cut himself too much from itching. He had to be swaddled until he was over a year old due to the itching. We tried all sorts of medicines - benedryl, atarax, acupuncture, nothing helping much. The color red couldn't even touch his skin. No perfumes, no bounce, no chemicals. I tried to have him food allergy tested at 4 months old, but the doctor thought I was just a nervous mom (even though it was my second!). He couldn't have any type of formula - I even tried pasterizing goats milk myself - he seemed allergic to everything and I was starving - well we both were because I was having (wanting) to nurse him and he seemed to react to everything I ate. We finally got a GREAT PA (physician assistant) allergist who tested Simon for food allergies at 8 months old. Boom - we got it - all dairy, eggs, nuts, peanuts, marginal soy, dogs, cats.... Anyway- food allergy crisis over and under control just in time for the asthma to start at around 15 months old.

It took about 4 months to get the asthma under control. We finally had to accept to start him on a daily inhaler - Qvar. OK, finally the asthma was not an all consuming struggle.

Everyone kept telling us - "Oh, many kids usually outgrow food allergies and asthma around 4 or 5 years old". OK we were thinking..... we can handle this for a few more years.... boring eating and daily inhalers that makes our child hyper. A few years.... anyone can get through that right? Then the chronic ear infections started...... and then tubes. OK, that's fixed.

Just when we thought we were hitting a status quo with only maybe 2 more years of allergies and asthma to go and we'd be home free we were hit with the Perthes. Whoa.... OK . Now were were reading 3-4 years to recover from Perthes (if you are lucky).

OK, I'm starting to wear thin now. Three to four more years of health problems. Gosh, I'm wondering if I can 'wait' that long? 'Wait' for our lives to become 'normal'. 'Wait' until we can really sit back and relax and not worry so much (at least about health issues). 'Wait' until we can start doing fun things we want to do like a normal family (and without emergency kits of motrin, benedryl, epi pens, rice milk and stinky soy cheese) .

Then it hit me. What are we really waiting for? What if he never grows out of these health problems? What if we don't have the best outcome with the Perthes? Who knows what the future will bring for any of us. We have to just forge ahead and have our fun in the moment.

Yes, it's more work for sure and we do have to plan some.... but the fun we have in the end is more than worth it! I've decided that there really isn't much we can't do as a family (besides bounce houses right now!) and there are really so many things to do and see that we are missing out on. The few things we can't do pale in comparison to what we can.

It seemed easier to put thing on hold (trips, outings, even eating out) because it was a lot of work (and sometimes worry) to make accommodations and was out of our comfort zone. We kept thinking - oh, in a few years we can do those things.... it will be easier then.

But you never know what the future brings. THESE could be our easy years. No one really knows. So we are moving on.... a new outlook, a new stage. Today IS our new normal now. No more excuses why we can't/shouldn't do something if we really want to. It's all out there waiting for us. And we are very excited to begin....

Monday, May 25, 2009

First day on a two wheeler! (and no training wheels!)

We took Simon's training wheels off his bike today and he was riding it alone within minutes around the track! We pretty much knew he could as he has been on a balance bike for over a year. However, he is so little for his age, he really can barely put his feet on the ground to stop.... so we are still working on that one. We were going to wait a few months to take them off to give him "bike therapy" of just pedalling around, but at a family outing yesterday he went 90 miles an hour trying to keep up with his older brother and cousin and I thought he was going to tip over for sure and break an arm - or worse! So I thought - those training wheels are coming off - now! He is very proud of himself, and his big brother Sebastian was a great help in cheering him on and "pretending" to race him around the track. I will have to bring the video camera the next trip to the track.

He is of course still limping. A bit more today and I think it is the bike riding. I think I'll email his MD to see if this is adversely affecting his hip joint or if the ROM is just causing inflammation, but helping him in the long run keep his ROM. He is happy, so I'm not over ly worried. But don't want to jeapordize his hip recovery at all!

Our main issue right now is actually his eczema and itching - which is causing him to wake at night. This can be a seasonal thing, but we are always taken off guard on what to do when it flares - maybe once or twice a year. We always have to reassess - are we using the right soap? shampoo? laundry detergent? dish wash detergent? EVERYTHING! Our house is already de-chlorinated and that helps. But he has been swimming more for therapy, so that could also be the culprit. Hard to know. We are going to try him on daily zyrtec - which is for allergies and see if it helps him. But those meds usually just make him over hyper - something we don't need! So we will try it for a week and see what happens.

Saturday, May 23, 2009

Alitte stiff after a very active week...

Well Simon is really enjoying his cast free freedom.... and so are we as a family. But maybe alittle too much! Together with the wonderful weather have been many opportunities to be very active outdoors and we have! We put the training wheels on Simon's two wheeler (which we had taken off because he can practically ride it if he were only alittle taller he could stop and get off it). We've read it's great exercise with Perthes to ride a bike. He is thrilled and has been riding 100 miles an hour everywhere. Then he started limping a few days ago. Oops, maybe a bit too much riding. But we don't know if this is really a bad thing (his hip is working, moving in the socket... that is suppose to be good!). But we backed off a wee bit the last few days and his limp is almost not noticeable. He is now able to run which he couldn't do the first 10 days post cast. So that's another workout for the hip. We are just hoping that this is all good and will result in a good outcome, despite the limping. We have been told that the limping is due to inflammation usually and from over exertion - not necessarily that the disease is going south...
So we wait and see. Looking forward to the June 6th appointment for a teeny piece of any information to think things are going well. In the meantime we are enjoying the good pre-summer weather to the MAX and making the most out of everyday and having FUN!

Sunday, May 17, 2009

Enjoying our cast free days

It's about 11 days since Simon's casts were removed and you would almost not notice a limp if you didn't know him. It's amazing how each day he gets stronger... much to our relief. He can do the stairs now, but slower than normal (which is usually dangerously fast anyway.... so this is good.. ha!)

We've decided to try and enjoy our summer and not be over obsessed with what's to come with the next few sets of x-rays. What will be will be. We will do the swimming and all the "allowable " activities (staying away for the impact ones) and hope for the best. We are going to try to live our summer as "normal" as possible. Yeah, I'm excited. If the Fall brings bad news, we'll deal with it then. But we are going to think positive here.

In line with this we did an impromptu trip to the beach yesterday and had a blast! Our old thinking would have been.... oh, Simon's legs may be too weak to walk in the sand, it may cause pain... but then I thought I could always carry him, right?. He could still enjoy the ocean view and build sand castles! And that we did! And flew kites! And he was amazing in handling the sand and didn't complain at all. Both boys were so excited to go to the beach (we've only been once since Simon was born) they were ecstatic! It was so fun to see. It really made our weekend.

Friday, May 15, 2009

Review of our Petrie Cast Experience

Even though the casts are now off, I wanted to share some of the things we experienced for those who are interested! And before I can happily forget the whole experience!

Like I mentioned before, the casts were a surprise to us the day of our appointment for an arthrogram, so we did not have time to do any research OR preparation (for Simon or the family!) so we really did "wing" it at first.... and really most of the time. We did do some google searches on petrie casts and got a few tips from parents who went through it, but there wasn't a lot out there. So here are some of our thoughts and experiences. Oh, it is important to know that Simon did not have any surgical procedure done before the cast was applied and was given full permission to move freely in the cast. It was just meant to help keep his joint in the socket while he moved and help loosen up his ROM (range of motion). So moving around was a must in order for the cast to do it's job!

1. The first few days.... will be different than the rest of the experience. Simon did not know how to move in the cast and was "stuck" pretty much where we put him. This was especially hard at night because he could not reposition himself so we had to do this for him sometimes every hour because he got uncomfortable (so goodbye sleep to the one on duty!). But after several days he started to move around and within a week or so could flip flop himself all around, including at night to sleep anywhere from on his stomach, back, or side, and back again. This was a life saver!

2. Moving around.... at first was scary for us as parents. It looked quite dangerous and if he had a fall he could hit his head or break an arm because he would have no way to brace his fall. I even wondered if he should be wearing a helmut! We were ultra cautious at first and followed right behind him most of the time he was up and around. By the last week though after NO injuries, we started to relax and he roamed freely around the house. These kids CAN get onto furniture , chairs, and attempt stairs, so you do have to know where they are at all times! The younger they are, the more their judgement is going to be way off the mark! Simon was super active in his cast and could practically run in them and loved to "crab" walk 90 miles an hour! The last few days of his cast he started doing this handstand on the couch.... I guess it was fun and he was getting bored!

3. Sleeping and night time.... ok this is a big one and I could probably write a book - not with expert advise, but with stories of frustration and trial and error to get it right! Our biggest problem at night was the itching inside the cast. That may not be an issue for all kids. Simon had eczema as a baby/toddler and has always been a chronic skin itcher.... so he was definately prone to having this problem. We tried benedryl at first, but after a night or two, that did not stop the itching. We then got a prescription - Atarax- from his doctor and that worked well for several days, then started to wear off in it's effectiveness too. What worked more in the end was getting the environment right. This is what worked best:

* He slept on a futon mattress on the floor with Mom in the livingroom. He felt better knowing I was right there and if he woke up and saw me, he was more likely to go back to sleep than if I was sleeping away from him or on another bed. He had pillows all around him to support his leg as he flip flopped around (see picture below)
* We used an ice pack (the soft kind that has gel inside) and he put it on his body to cool down. The hotter he felt, the more he itched - so the ice pack worked well. Also, I had to be sure NOT to cuddle with him! This was hard especially if he was yelling out from the itching! But if I did, he would get hot and MORE itchy, and once he got itchy and started yelling - it took a long time to get things turned around. No cuddling! booooo.
* We had a fan on high (I was freezing, it felt like I was in the arctic) and the cable TV "toddler tunes" channel turned on for background music
* We found it worked best for us to keep him busy and active about an hour past his usual bed time, then get him laying down as quick as possible and tell stories to distract him. We initially had him watch TV to fall asleep because it did help distract him from the awful itching, but sometimes it would just zone him out and make him realize how much he itched, so the other plan actually worked best in the end.

4. Clothes.... who would have thought this would be so complicated? The bar that is cemented between the legs prevents any clothing from being pulled up - including underwear! Simon did wear a diaper for 2 days though he had been potty trained almost a year already. Then he wanted the diaper OFF! So we cut the underwear on the sides and added snaps. It worked, but was kind of a pain. We lucked out with the clothes as Simon could still wear a 3T or even squeeze into a 2T so we were able to go out and buy overall shorts that snapped in the crotch area and they worked perfect. I will be doing some research on how to find these and how big they go up to. I've talked to parents who have had to cut and velcro or put snaps into their own clothes. May be worth having it done by a seamstress if you don't sew and will hold up a lot longer. That's what I will do if we have to do this again and he's outgrown the 3T's.

5. Baths.... sponge baths that is.... we didn't get an A+ for this one. We read a lot how parents would bathe their kids and wash their hair everyday they were in the cast. How they did this I don't know! I was half asleep most of the time and it took a lot of effort to get him bathed (not to mention he did not care if he bathed or not and we practically had to force or bribe him...). We ended up doing it at the kitchen sink. He stood on a wide dining room table chair turned backwards in front of the sink. I wrapped his legs in saran wrap. He would play in the water and make a mess while we quickly washed him down and did a quick hair wash when he'd cooperate putting his head in the sink. We finally did get his hair cut really short the last week in the cast to help with hair washing as well as to cool him down some due to the itching.

6. Transportation... seemed tricky at first, but it wasn't bad. We may have had it easy because Simon is so small. He was able to fit into his brother's booster seat. For a bigger child, we read the booster needs to have arms that retract back to accommodate the leg spread, and ours did that too. We did get a wheelchair with leg extenders the first day. He loved wheeling around in it. But it was alittle bulky carting that thing around to stores and such. We ended up using the red wagon we had to go everywhere and it worked great. I put some heavy beach towels down to make it softer and it fit pretty easy in the back of our minivan. Also, I had control of the wagon, where with the wheelchair he was always getting away from me!!

7. Carrying him around... was definately difficult - and he only weighs 32 pounds (without the casts). We read that you should never lift a child under the arms (like you usually do) because the weight of the casts put too much pressure on their hips. So you have to pick them up in a chair position or like you are cradling a baby. They are really dead weight this way and it is a strain. We tried to avoid lifting him after he could walk around unless we had to to save our backs..... but it was definately necessary part of the time. Also, you are not suppose to lift the legs up by the bar as it can break or come out (and ours did once and we had to glue it back in!)

8. Cast damage... is to be expected! Simon pulled out most of the "cotton padding" out of the top 1 1/2 inches of his cast the first 2 days! Who would have thought to put fun looking "fluffy" cotton like padding in a small child's cast! ha! He then started picking at the top of the cast which made the edges sharp. Of course he then cut his skin one day on it. We went back to the cast room a few times in the 3 1/2 weeks he had the cast on for minor repairs. They were really friendly and said these things happen all the time with small kids and they are always repairing casts. The put mole skin around the top of the cast to make the edges soft, then put the fiberglass casting material over it so he wouldn't peel it off (and he would have!)

9. Last but not least expect bad behavior and crankiness..... At first everyone is understanding of this... you feel bad for what they are going through and they are experiencing pain and frustration.....but after awhile it starts to wear on you! Their schedule is off - everything from no school or playdates, eating whenever and whatever, sleeping is off (if they are even getting much!). Kids thrive on routine and expectations and all of this is WAY off when casts are thrown on unexpectedly! We did our best and got alittle stricter towards the end of the 3 1/2 weeks and started setting more limits and following family rules alittle closer to the norm than at first. We thought he needed to start getting into a routine for his own sanity as well as ours! After the casts came off, things didn't return to normal right away either! He needed to get use to sleeping in his own bed again, and we didn't want him eating in the livingroom watching dragon tales any longer (but this is SO fun mom!) amoungst many other things. After about a week, things are feeling much more on track - whew!

Thursday, May 14, 2009

Getting stronger each day

Just a quick update on Simon's gait and strength since he got his petrie casts off one week ago. He is definately getting stronger and limping alittle less each day. He cannot run yet, but he is trying to gallop. At least he wants to try.... which is an improvement! I heard back from his Ortho doctor today after I emailed my concerns that he was still so stiff. He said this was completely normal and it could take one to two months to get his strength and mobility back to where it was. So I felt alittle better knowing that!
Still focusing on activities that will improve his strength and ROM such as swimming, biking, and just plain running around. We will talk with our doctor on June 7th about starting more structured exercises. In the meantime he has slept through the night 3 nights now. Yippee! Hope I didn't just jinx myself.....

Monday, May 11, 2009

Casts off! But still weak....

Simon's casts were taken off earlier than we expected ( 5 days earlier) because he was sleeping so poorly and the doctor did not think the 5 extra days would make a difference. We were so excited! What we didn't expect was that he wouldn't be able to walk at first..... or even very well for several days. The doctor said his knee muscles were deconditioned and it would take "a few days" to strengthen them. This is day 5 and he is still having problems so we aren't sure if he is on track or lagging alittle. He seems to be stronger every day, but he cannot go up or down stairs or do anything that requires he bend his knees to lean down. I will probably be emailing his doctor soon. We haven't been slated to do any physical therapy, so I will ask about that as well, although I have a hard time imagining him cooperating with it.

We are working on getting back into routine - which is NOT EASY! After sleeping with mom for almost 4 weeks - being back in his own bed just isn't very fun. I'm not up to just letting him cry it out in his bed either, as I'm still feeling alittle sorry for him as he is still struggling all day as he gets around and I can see he is in alittle pain. But after 5 more nights of still not sleeping a full night, I found myself bribing him as he went to bed tonight that if he slept all night without crying for me he would go up the reward ladder (a system we have for good behavior) and get the $1 at the top and can go buy gum! Yippee. Lets see if he bites on that one.... probably not. Desperate times calls for desperate measures. ha!

Monday, May 4, 2009

Kids are so adaptable.... One more week in casts!

Here is Simon at the schoolyard a few days ago. He thinks he can do anything - even with the casts on. Nothing slows him down!

It's been awhile since I've posted.... mainly because it takes almost every waking second to care for a child in bilateral casts! Even in the night hours! The prescription medicine for itching and sleep works pretty good, but not every night. I think by the time this thing comes off, we will have the routine perfected! If we keep him busy and active until around 9:30pm, then turn out the lights and say it's night time (and lay with him of course....) he falls asleep pretty quick. Our mistake before was letting him watch TV in hopes he'd fall asleep and not think about the itching - when actually just sitting there REMINDED him about the itching. So now he plays until he drops and for 2 nights we have not had any yelling and crying for hours about the itching. Six more nights to go....
Daytime hours have gotten easier and we don't feel compelled to follow him around every waking minute to make sure he doesn't fall backwards onto his head. He only has fallen once forward and scraped his nose when he was crab walking 90 miles an hour yesterday when his cousins were visiting. He even insists on "spring boarding" himself onto the couch instead of having someone help him up.
We've had a few trips now to the cast room for "repairs". Tonight the bar came detached and we panicked for a moment as his legs could move freely (and he loved it!). But I finally called the cast room and they said to glue it back in and it worked! (hot glue gun) for now at least....
Next Monday is the big day for the casts to come off! Yippee. We are very excited about that, however we will also find out more about where he is in the progression of the disease and the doctors thoughts on whether to brace him, or need for possible surgery in the future.

Friday, April 24, 2009

First 2 Weeks in casts

Simon is 3 1/2 years old. He was diagnosed with Perthes Disease in October 2008 after limping for about 3 months. His x-rays have been showing deterioration of the hip joint ever since his diagnosis so an arthrogram was scheduled on April 13th to better see what was happening with the bone. During the procedure his doctor felt his joint was gravitating outside the socket and growing too large for the socket, so he was put in these casts as a method to turn things around and hopefully avoid surgery down the road. We were not expecting this when we went in for the appointment so we were quite shocked and unprepared for what was to come!
In short, we have now survived 11 days of the 28 days he is to be in the cast. It is getting easier, but has been definately a HUGE challenge! Luckily, Simon has adapted quite well and is actually nearly "running" around in this thing! Of course he is quite "dangerous" - just imagine, an active, high energy 3 year old with 2 bats attached to him.... I don't think our hardwood floors will ever be the same! The biggest challenge has been the night time. Around the time he is finally starting to fall asleep he starts itching terribly inside his cast and yelling out. This can last 20 minutes or 2 hours and continue off and on throughout the night. Some nights benedryl worked well, however last night was quite dramatic and it took him 3 hours to fall asleep (crying half the time that his leg itched) and he woke up several times crying as well. So I called his primary doctor today and she prescribed Vistaril (Atarax) and we tried that tonight and it was amazing! It was the first night he went to sleep without crying about the itching.
More to come on the ins and outs of life with casts including bathing, eating, cast destroying, and clothes challenges!