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 27, 2009
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...
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:
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!
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.
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....
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....
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