tara
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Post by tara on Apr 2, 2008 20:46:20 GMT -5
Donna, Thank you for your reply, I just read your childrens story what a long haul. I'm so scared for my son. At what stage do they do surgery??Casts? What links should i go to for support?? what is hydrotherapy?? We always do reg baths. Sean goes to bed every night with ice packs he falls to sleep with them. He prefers ice. He does moan in his sleep alot. Do i need to realize this is a long haul??Its so hard to watch your child in so much pain.Does the weather have much to do with the pain? We had two really bad days last week, bad weather days. This week is a little better. Does a child with perthes qualify for any disability services?? Did you work??There seems to be alot of hospital visits. Thank you for any help!!! It seems the doctors where I live don't do much to treat this. I was told we are in stage one. this means its only the beginning??? Tara
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Post by Donna Brown on Apr 2, 2008 22:41:42 GMT -5
Hi Tara
Surgery is done when the femoral heads are not contained - the words the specialist will use could be sublux/subluxation or lateral extrusion. Also if his ROM (range of movement) really deteriorates, they will want to look at why this is happening and see if something can be done to help. It is possible that they may look at using petrie casts (ankle to thigh) with or without a tenotomy (cutting the tendon) to loosen the hips up. Sean is borderline at 7 years old and they may still choose that path first, before attempting surgery, just in case it works.
I can forward your email address to Barb Kelly who runs the Legg Perthes Support Group and as I am a moderator on the Information-Perthes group, I will send you an invitation from there - whether or not you choose to accept either invitation, is entirely up to you, but you will meet some wonderful people on both groups, who totally understand what you are going through.
Hydrotherapy are exercises that are done in the water. If you go back to the main site here and look at the therapies page, I have added some links to new photos showing some of the exercises that my daughter is currently doing. I am hoping to get photos of other kids too soon, so that people can choose ones that help their child.
As hard as it is going to be, this is a condition that has no quick fix for it. Average time a child is affected is 3-5 years, however for some kids this can be longer, like my daughter.
The weather can most definitely affect the pain levels. I know that Caitlin and I tend to stiffen up and are more sore when its damper, more humid weather.
As far as disability services go, it depends on where you are, as to what you can access. On the online support & info page, at the bottom, are links to information about services in New Zealand and USA at this point. I don't know where you are, but if you were in New Zealand, I could point you towards all sorts of information and help here. That is another advantage of joining a support group, as this is something that others have been through and can help with advice about the pitfalls and suggestions of what might also be available.
I worked until Caitlin had her pelvic osteotomies, as she was hospitalised for 3-5 days for each surgery and was off school for 6 months in total. The following year, she was back off school again for the bulk of 3 months after the external fixator. I worked at a cleaning job for a year or two, as I was on call, but only this year have I gone back to work part-time finally.
Hospital visits will inevitably be 3 monthly at this stage and will continue at that interval for quite a while. If Sean does get sorer than usual or his ROM deteriorates markedly, then you should get him back in sooner if you need to - if nothing else, it helps you to cope better when you know what is happening.
Stage 1 takes about 6-12 months, then Stage 2 is fragmentation which takes 1 year or more, then Stage 3 & 4 take as long as they need to, to do what they are meant to! Really precise, huh? I asked that same question of our original specialist and that was his answer. Didn't make me happy at the time, as it wasn't really an answer, but now I realise that he was right and you just have to accept that the body will repair the damage the best it can, within the time it has to do that. In Sean's case, he isn't in the older age category, which is great, however being on the border of that and younger age, means that if it does appear that surgery is needed, then the sooner that happens, the better.
Donna
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Julie
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Post by Julie on Apr 12, 2008 6:27:26 GMT -5
Hi all
Tara, sorry to read of Sean's struggle with Perthes. Sounds like he is having a really tough time.
Matthew is also still in the first stage. He's not experiencing much pain yet. We live in a hot, dry climate so maybe this is an advantage. Matthew uses crutches when he leaves the house to slow him down more than anything, especially when at school. They help him to remember he is not allowed to run.
We met another family last week in the town we live in whose 6 year old son Josh has Perthes. He was diagnosed exactly 12 months before Matthew, also when he was 5 and in his first year of school (Kindergarten here in Oz). It was so encouraging to see Josh, 12 months on walking around with barely so much as a limp. Josh fragmented in ~June last year, spent a few weeks in bed, then returned to school in a wheelchair for part days, building up his hours until he was back full time. Josh last saw the Specialist in February 2008. He has commenced reossification & the specialist is confident he will make a full recovery. We just hope Matthew follows a similar path.
Personally I find the waiting extremely frustrating. Of course I do not want to see Matthew in pain and certainly am not looking forward to this, but when he complained that his leg was hurting last night, I found myself hopeful that he was starting the fragmentation phase. Knowing there is nothing we can do prevent or limit Perthes, I find I want to get on with it. It's the nature of my personality I know. Does anyone else feel like this?
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Post by Donna Brown on Apr 12, 2008 21:08:41 GMT -5
Oh yes! Totally relate to that feeling of frustration. Its like - ok, we know whats wrong, we've read up what to expect, now just get on with it!
A very wise older specialist told me years ago with Caitlin that perthes will take as long as it needs to, to do what its meant to! Didn't understand that at the time, but now that we have experienced more, it makes a lot of sense. Mind you, Caitlin has been 6 1/2 years since diagnosis and has only been in regrowth/reossification for approx 12 months, so she is taking far longer than normal!
Hang in there and know that you all aren't alone - there are many, many people in exactly the same predicament as you and they are experiencing the same feelings of frustration, anger and the need to vent too!
Donna
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Julie
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Post by Julie on Apr 29, 2008 20:53:34 GMT -5
Wondering how everyone's kids are doing? Matthew developed a significant limp overnight. He has improved a little following a hot tub (spa) and as the morning has gone on. We sent him to school eventually. He is on crutches. We also picked up a wheelchair for him this morning. We suspect he may be starting to fragment.
I wondering what have others experienced and how much/little non-weight bearing is recommended during the fragmentation period? We've had advice from 'complete bed rest' to 'he'll be fine at school in a wheelchair'. Matthew is 5. He's not in constant pain, it just hurts when he tries to walk. He manages the crutches well & was so happy to be at school when I dropped him off. We'd prefer him to be at school if it's okay, but do not want to further aggravate the joint. We phone his specialist (a generalist Orthopaedic Surgeon) for advice this morning, but I found the response a bit vague. Any advice from those who have been through this stage would be appreciated.
Thanks,
Julie.
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Post by Donna Brown on Apr 30, 2008 15:24:27 GMT -5
Hi Julie
Our specialist is of the 'use it, or lose it' thinking and I would advocate that too, having been through it and seen others too. If you do things like total bed rest, you are looking at a certain amount of muscle atrophy and loss of ROM (range of movement), which are extra things to deal with later.
Has Matthew been taught how to use the crutches properly? Its really important that he try to walk as normally as possible with them, otherwise you then have issues with his gait that will need to be resolved later too.
Limiting his weightbearing on the sore leg is easy enough to do. Get a thick book like a phone book and put it on the floor beside a set of scales. Get him to first stand with both feet on the scales, so you know how much he weighs, then get him to put his good foot on the phone book and his bad foot on the scales and look to him taking approximately 50% of his body weight on his bad leg, by taking some weight through the crutches. You may have to do it a number of times, but there will come a point where he will remember how it feels to do this and should help him. This was he can use the leg as normally as possible, so keeping the joint working well, but by taking some of his weight through the crutches, he is lessening the impact on the joint.
Use the wheelchair for distances. One thing I have noticed is that the more tired the child is, the worse their tolerance of the pain is and also their gait deteriorates, so they cause extra problems. If he uses the wheelchair to get to and from class and the crutches in the classroom, then it should help with his pain.
If he is at home and hurting, then some quiet time sitting down watching a movie, or playing on a playstation or something, isn't a bad thing, if it keeps him sitting quietly for a while too.
If you don't already have him in swimming, then that would be something that will be worth pursuing, as its the best exercise for these kids, as its totally non-weightbearing and helps with maintaining ROM.
Good luck
Donna
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Julie
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Posts: 11
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Post by Julie on May 1, 2008 0:15:19 GMT -5
Thanks for the advice Donna. All makes logical sense. Julie
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Julie
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Posts: 11
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Post by Julie on Jun 3, 2008 21:58:48 GMT -5
Matthew had a fresh set of X-Rays and visit to the specialist this week. Appears he has full head involvement and the head is just starting to fracture. This is consistent with his increase in symptoms over the past 2 weeks and increasing stiffness. The specialist is also concerned that he may end up with a lateral extrusion so is sending the films off to a paediatric orthopaedic colleague for a second opinion. Matthew is coping well with crutches. We're going to ramp up his hydrotherapy to 2-3 days per week. Anyone know what is recommended? Also if anyone can provide advice regarding the types of exercises we should be doing with him in the pool, we'd appreciate it. The local swimming instructors have asked us to find out more information. Julie
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Post by Donna Brown on Jun 4, 2008 22:54:31 GMT -5
Hi Julie
Our specialist would have had Caitlin swimming, or doing hydrotherapy daily, if we could have managed it (time wise and financially). Let his pain guide you, but it should help.
Walking in the pool is a really good place to start - forwards, backwards, sideways. Ensure that when walking forwards or backwards, that he draws his knee up towards his chest (flexion), then steps out as far as he can (extension). For sideways walking, this will give abduction and if when he bought his feet back together again, he could cross them, that would give some adduction. All exercises need to be done with the back straight, bottom tucked in as much as possible, so that no excessive strain happens to any other joints.
Any swimming is going to be good for him, although try to keep breast stroke kicking to a minimum, as that rotates the heads quite a bit and can be painful. The body action that is done for butterfly (Caitlin's teacher calls it 'dolphin body action') is good and she does that with her arms out in front of her, clasped, stopping for a breath when she needs it.
Any landbased exercises can be adapted to the pool and if it has rails around the inside edge of the pool. then Matthew can use them to steady himself, while he stretches and flexs, to keep him safe.
Hope that helps as a starting point anyway.
Donna
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Julie
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Post by Julie on Jun 5, 2008 20:10:46 GMT -5
Thanks for your quick response Donna. We've had Matthew in the pool day per per week but probably need to increase this now as his symptoms are increasing. My husband coincidently completed a learn to swim instructors course early this year so can work with Matthew daily if required. I've downloaded the hydrotherapy exercises from this site. They are excellent.
Thanks Donna. Your advice is much appreciated.
Julie.
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Post by amywilliams on Jun 12, 2008 7:50:06 GMT -5
Hi Tanya, Donna and all the other parents of kids with Perthes,
I had posted to this site early on in Patricks diagnosis (in May 2007) but haven't been back in a while. It's been 25 months since diagnosis and we've been told the entire course of the condition can take from 2 to 5 years. Here's how it's been for us so far.......
Patrick was diagnosed after a couple of months of intermitent limping. We took him to the doctor several times before we were taken seriously... this was really disapointing for us. Options for what it was were suggested by our GP, but none proved to be even close to the real problem, so we finally got fed up with that and took Pat to my physiotherapist. His thoughts were that the pain was coming from the hop area... sure enough, an x-ray showed it was a hip related problem... Perthes.
Neither my husband nor I had any clue what that actually was. There is a lot of information on the internet though (and that's where we found Donna!) and we were quickly referred to a specialist.
Initially, Patrick was thought to be Herring B and the specialist thought it best to X-ray once a month and wait and see. Pat spent a bit of time on the couch at home, but his pain subsided fairly quickly after the initial diagnosis and he went back to school on crutches. Only a couple of months later the specialist decided the damage to the femoral head looked more like Herring C and that it might be better to perform and Osteotomy sooner rather than later. It was explained to us that although the need for surgery was not absolute (given Pat's age 7) and the fact his ROM was very good, there was only a small window of oportunity with the timing of how the condition progresses, so it would be good to just do it "in case".
Patrick had a Pelvic Osteotomy performed on his left hip on the 7th of September 2007. The surgery took nearly 3 hours and the surgeon was confident that he had been able to get enough of a wedge in the Pelvis to ensure containment of the femoral head. Following surgery Pat was put into traction for one week. This was probably the most traumatic part of the whole thing. The thigh muscles start to really hurt after a few days and it was very painful for Pat. It was about 48 hours of 'not very nice' but Pat was very brave and we were home within 10 days from the surgery date. The hospital is 2 1/2 hours from here, so we all stayed in a motel and my husband and I took turns at staying with Pat in his hospital room. He did not have a cast, but was given a wheelchair for about 6 weeks. He was back at school within a month of the surgery and was treated like a king (in fact this is so throughout the whole experience... the public health system really came to the party).
After that, he went back onto his crutches. By December the X-rays showed that the deterioration of the femoral head had worsened, therefore everyone involved in the decision for surgery felt vindicated... Myself, my husband and Pat's specialist. Although the fragmentation process was still happening throughout this time, Pat's pain was minimal. He has a significant 'limp' which you would think surely must be a sign of pain, but when asked if he is in pain, he always says no. Certainly the condition has not slowed him down. He has been restricted from many activities since diagnosis but he keeps finding new ways to 'cheat'. He can walk faster with his crutches than I can run! He's a maniac on is bike and is definitely not slowed down by the condition. In fact, if you saw him on his bike and didn't know he had any sort of condition you would think he was absolutely fully able. He also swims twice a week and rides a pony. He's just got a set of golf clubs and is having a great time hitting the balls way up the paddock and sending the dog off to find them. There is no slowing this boy down. In fact, the only reason he was kept on crutches was because he insisted on continuing to run when he was without them, so at least with the crutches he can't do that! It would be a cause of concern for a lot of parents regardless of Perthes! I have worried that because he is mostly pain free that he does not take the restrictions seriously and therefore his prognisis will not be so positive... however, throughout the condition so far, the ROM has remained very good. There is definitely stiffness there, but it is within an acceptable realm for our specialist. He also has physio exercises which he does every night and he is much stronger since he began these.
In saying that, as of the last x-ray, Pat is still in fragmentation. It seems to be fairly slow moving in his case. We will not know of the outcome for a while yet. He is 8 now.
All I can say to any other parents who have children with Perthes is stay really positive. We did not go down the road of applying for disabled parking etc... and treated Pat as we normally would. We have always been kept fully informed by our specialist and told that the prognosis is good, so we have accepted that and got on with life in the meantime. He is fully able and asks for no special treatment, so we don't give him any. He still helps with jobs around the farm too! Of course he is treated with respect and there are some activities our family has refrained from in the meantime, but as a whole, it is something that will now just take time to get 100% better and we believe he will. We have always been told that this is a temporary condition and have always considered it so. There is no point in dwelling on the negative. I am sure that one outcome of having this condition is that Patrick will grow up to be a really special person and his life will be especially happy and rewarding.
Patrick is so very brave and accepts what has happended to him as part of life. Of course he would love to be up the mountain on his snowboard this winter and I wish I could tell him he can... but it won't be long and he will be back up there and playing rugby and doing triathlons etc... like the other kids in his class and he'll surely be able to reflect and appreciate it more than anyone!
Pat is going back in for surgery on Tuesday to have the pin in his hip removed. That is what prompted me to post here. He is more worried about the needle going in his arm than anything else. Last time he has an alergic reaction to the numbing cream that was applied and it was very diffiicult to find the vein... ouch! He's already told me this time he wants the gas mask. Fair enough too!
All going well, this should be the last time Pat needs to see the inside of the hospital and the condition will now just run it's course until he's better.
I will keep you all posted on when any new developments happen and the time frames etc... that's the biggest unknown for everyone really and I know it's good to hear about what it's like for other people in similar situations.
Amy
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Post by Donna Brown on Jun 12, 2008 20:37:15 GMT -5
Hi Amy
Great to hear how well Pat is doing.
They can give him a 'thingytail' pre-surgery that will relax him and make the needle or mask in theatre that much easier to handle. Caitlin had this last time with scar revision and was like a happy drunk with the mix! Giggling, telling jokes and generally acting the fool, between her eyes closing LOL!
Donna
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Post by amywilliams on Jul 1, 2008 2:26:37 GMT -5
Hi Donna and everyone here,
it's now been three weeks since Pat's operation to remove the pin in his pelvis. He woke up pretty sore and quite worried that he would be as sore as last time... memories came flooding back for the poor wee guy. He spent two days in hospital. He was pleasantly surprised when the physio got him up that his hip was actually more stiff than sore and he was able to leave hospital on crutches.
The bone had grown over the pin and was difficult to find, so that caused quite a bit more irritation than the surgeon had hoped for. He had quite significant bruising round his groin and even on his backside, which he did not have last time. The cut this time was about siz inches long, so about a third of last time. You can now hardly see where they went in and the scar is so minimal it's unbelievable.
Pat uses his crutches to aid his walking nearly all of the time. He is back to being as active as ever after three weeks. I had to grab the camera the weekend after his op... he had surgery on the Tuesday morning and by the Saturday afternoon he was hooning about the farm on his bike!! He is amazing how quickly he heals and his attitude to getting on with things is always so remarkable.
He's been back in the pool and got a certificate yesterday for being the best swimmer in his class. Next term he is going to be doing two lessons a week and two fun days at the pool.
Unusually, he was not x-rayed at all when we were in the hospital and our surgeon said he did not look at the femoral head while in surgery, but he is having his regular check-up this Friday and is having X-rays then. We're hoping that the fragmentation will have halted and he will be on the road to a full recovery. Fingers crossed.
Cheers Amy
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Post by justlooking on Jul 6, 2008 8:48:53 GMT -5
Hi All, l just came across this site .... We have a little boy who is now 8 and was diagnosed with perthes at 2. He was constantly stumbling and falling over things that were not there. Doctor after doctor told me l had a lazy child, then the limp came. Having delayed speach and a very high tolarance to pain l had no idea, we went to Westmead hospital in Sydney but were told on two occasions he was fine. After a trip to visit Nanna in Melbourne her local Doc ordered an xray he was refered to the Royal childrens hospital and was in traction the next day !!! The first few years were full of long stays at hospital in traction, we done 12 weeks in a broome stick cast 12 weeks out for 12 months, he got great at scooting on his bum !!! Now at 8 years we are told there is not much left to offer him , he has minimal re growth and they (his specialist ) would like to see him in two years. TWO YEARS thats a awful long time, alot can happen in that time especially with a child that feels little pain, he walks with a limp (obviously) but never complains he's sore. Any advice ? l just feel l cant sit still for two years just to hear again had it been identified sooner he would have had a better chance of recovery. JA
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Post by Donna Brown on Jul 6, 2008 14:56:48 GMT -5
Hi
Sorry to hear your son has been through such a long journey and then to have to wait such a long time between visits with the specialist.
The advantage I can see that your son has is his age, as until he gets to about 17 years old, he will still be growing. Apparently most of the growing around the pelvis is done before approximately 8 years of age, but it does continue to grow from then, albeit slower. So at 8 years old now, he still has 8-9 years of time for his body to rectify the damage done by perthes.
Are his femoral heads contained now? What is his ROM (range of movement) like? These are crucial to his longterm recovery. Are you following any sort of exercise program for him, like physiotherapy or swimming?
You can help him improve his ROM with swimming and/or hydrotherapy (exercises in the water), also there are land-based exercises designed for perthes kids too. Do you live near somewhere where he could go horse riding, as thats another great exercise for these kids, especially if its a place that works with disabled children and offers therapeutic riding - horse is chosen carefully for the width of its back and its gait, to match what the child needs.
I do feel personally that two years until your next appointment is excessive, as the children that I know of with perthes - even when they have finished with regrowth - are at the longest, on yearly visits to the specialist until they finish growing, just to keep an eye on things.
If you go to the page called 'Therapies' you will find some basic information about hydrotherapy, physiotherapy and horse riding there, but there are also links that take you out to more photos and explanations. If you need further information, email me at perthesnz@yahoo.com.au
All the best
Donna
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