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Post by Donna Brown on May 6, 2007 20:59:00 GMT -5
Pretty scary huh? You have probably never heard of Perthes before and have got busy online researching away and found some pretty awful stories about it - right?
Lets start with some facts:~ 1. Perthes is a condition, not a disease. So its not contagious, its not life-threatening and there is a light at the end of the tunnel 2. Most (and that is 80%+) kids who get this diagnosis, will get through the entire time with some pain, restrictions and maybe need some pain medication 3. For the other lot (under 20%), the journey has begun! Prepare yourself for a rollercoaster ride - this is a life-altering journey that the child with Perthes, and the whole family will experience
There are so many positives that you will experience in amongst the hard decisions, such as therapy and treatment choices. These are seeing your child mature beyond his or her peers. They will have a mental strength and tenacity that will amaze you and an empathy for others.
There may be times where you question your decisions and also your own ability to cope, but remember 'that this too shall pass'! Perthes does have an end - there is a time where the fragmentation phase of Perthes ends and the body starts to heal itself and that is regardless of whether surgery was done or not. Inevitably, the femoral head won't look the same as it did before Perthes either, but Perthes will have finished wreaking its havoc.
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Post by williamsfamily on May 20, 2007 23:29:29 GMT -5
Hi Donna, thanks so much for all the information you have given about Perthes. We have our first specialist appointment on Wednesday and are a lot better informed now thanks to all of your research.
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Post by ckrhull3 on May 30, 2007 19:44:59 GMT -5
Hi Donna and Williamsfamily. We just got home from the hospital today with our son's first casting treatment. This will be worn for four weeks prior to surgery. Curious what other parents have opted for in treating their childs Perthes. I had it as well and wore braces and crutches for approx. two years. Nice meeting you and hope others will chime in with their own accounts as well.
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Post by williamsfamily on May 30, 2007 21:26:14 GMT -5
Hi Donna and ckrhull3. We wnt to Dunedin to see the Otago Surgeon, John Dunbar, who we have had great reports about (he does most orthopaedic surgeries in Otago). John explained the disease to us very thoroughly and we now know that Patrick is just at the beginning stages of the disease. It's a wait and see what happens game at the moment. In two weeks Patrick will have an X-ray of his hand to determine his bone age (Mr. Dunbar explained that being 7, Patrick is right on the fringe of the age group which does statistically better with surgery). If Patrick's bone age turns out to be younger than his chronological age then surgery may not be necessary. We're hoping his premature birth may have finally had a positive affect... maybe his bones are less mature because he was born at 27 weeks! This is all speculation of course. In the meantime, Patrick is handling getting about on crutches very well and has even mastered a technique for kicking a soccer ball with his good leg, while "standing" on the two crutches! I have noticed his pain is a lot less since he's been using the crutches. We are all trying to look at the situation positively and are thinking of ways we can keep active without doing anything to agrivate the hip at this deterioration stage. We have attached a bungy type towbar to my husbands bike so that Patrick can bike along without actually pedalling. He's happy to be out in the fresh air... not so happy that his older (but smaller) sister is way in front on her bike now though! We still don't know what to expect in the months ahead, but I suppose no-one does as every case is different. Ckrhull3, how old is your son? I wonder if he is similar to Patrick's age?
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Post by ckrhull3 on Jun 1, 2007 0:29:59 GMT -5
My son is 10 years old and will need the surgery because he is a bit older. I was about 7 when I was diagnosed and did very well with containment using braces and crutches for around 24 months. When they took my crutches from me they gave me no restrictions on physical activity and I never had any issues. I lost a little range of motion and mostly it's difficult sitting cross legged. I do occasionally get some soreness but it passes in a couple days. I have always been active and now a U.S Marine for twenty years. My son has played several sports since five years of age and until recently traveled on a competetive soccer (U.S.) team. Riding a dirt bike is also a hobby. Having been through this definitely helps but it is very traumatic for him to cope with. The most important thing is to continue doing what you have been doing and keep his weight off of it. I believe you can greatly reduce the flattening of the femoral head if you minimize the impacts on it from walking/running. Our doctor said swimming and riding a bike were good for my son to keep his hip loose and keep a good range of motion. He got very stiff from sitting still or when he woke up. Hope this helps and we're happy to keep up the conversation.
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Post by Donna Brown on Jun 1, 2007 1:52:26 GMT -5
Williams family - great news!
For the majority of kids with perthes, its common for them to have an immature bone age, which can definitely be of an advantage, particularly when they are right on that cusp of good/bad prognosis! I have my fingers crossed that you get a positive answer from the bone age xray.
However, that isn't always the case and it might be worth researching your options just in case. I have learned a new technique since Caitlin was diagnosed - prepare for the worst outcome and that way if it does happen, you are mentally in the right place for it. If it doesn't come to pass, then you can thank you lucky stars and count that one as a blessing! It also means that if the worst outcome does come along, then you don't sit there with your mouth hanging open wondering what the heck just hit you - you can ask the right questions and get everyone ready for what is to happen (this is personal experience - have done the mouth hanging open response early on! and wasted a valuable opportunity to ask relevant questions early on).
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Post by Donna Brown on Jun 1, 2007 1:58:55 GMT -5
ckrhull
Its a real pain having 'been there, done that' to have to see your child go through the same stuff, but on the other hand its good for your son to have someone who understands what he is going through and can role model so effectively for him that there is a life after this and it can be good!
I also cannot sit cross-legged, but I have never been athletic in any way, shape or form and the extra weight I carry now certainly isn't helping my poor hip!
I am under the care of a physio for a wonky ankle and she is working also on strengthening my pelvis while we are at it, as that will help with my ankle, but also with the hip replacement that is definitely in my future. When this is all working better, then the exercise component will increase and (hopefully) the weight will drop off quicker.
Your sons age does mean that a pro-active approach to his perthes is most definitely needed and surgery is the quickest and most effective way to achieve that. You mentioned a triple osteotomy - do you know much about the external fixator? Its less invasive and is having some amazing results, particularly in the older 'too hard' kids. You can email xrays to Dr Dror Paley at Sinai Hospital in Baltimore, USA at dpaley@lifebridgehealth.org and he will give you an opinion on what he would do to help - there is no charge for this opinion either.
Might be worth pursuing?
Donna
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tanya
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Post by tanya on Jun 4, 2007 0:57:41 GMT -5
Hi Williams family and ckrhull3, So nice to finally get on here and talk! Had forgotten my password and have finally got the right combination. Welcome to another NZ familyHope the bone age scan goes well for you . ckrhull3 wanted to let you know that Samuel is a big soccer fan and used to play. He was to have tried out as goal keeper for a rep team the year he got Perthes. Now we play soccer on the PS2. Better than nothing I guess.
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Post by williamsfamily on Jun 8, 2007 5:09:02 GMT -5
Hi Everyone! It's been over a week since I have been in here to chat. I have been pretty busy with work and had Patrick home as well a few days. We are leaving for Christchurch on Wednesday after having the new X-rays done at our new local country hospital. It is great we have this facitlity and don't have to drive for hours for an X-ray! We have a six hour drive to Christchurch though. I imagine it's going to be pretty hard on Patrick to sit for that long. We have been at the pool a lot (this is also a relatively new facility and I am also thanking my lucky stars we have it... when I was a kid it was a summer time outdoor activity only). We tried to book in for lessons but were told we would have to go on the waiting list, like everyone else. We might get in next term. I bought a pair of togs, hat and goggles and have been swimming with Pat.. working on his freestyle breathing and getting his stroke a bit more even. He really loves swimming. It's been great fun and really quite unbelievable that I have been in the water exposing my thighs to the world! I have found though that he's getting more and more sore. We've been using the crutches a lot and he's been waking up a night every night. He hasn't been on his bike much at all. Funny you should both say you can't sit cross legged... neither can I. My left foot turns inward when I walk... always has since I can remember.... Mum and Dad always saying "turn your toes out." My Dad is exactly the same with his left foot. A chiropractor told me years ago that it was caused by an abnormal hip, but I thought it was just the way we were put together... now I'm not so sure... perhaps Dad and I had mild Perthes when we were little and it wasn't picked up. Food for thought. We are quite concerned that the rotation of Pat's hip has lessened dramatically since diagnosis, so we are preparing ourselves for the worst... I had thought that Perthes kid's often have a young bone age, but then I was talking to another Mum with a Premie daughter and she reckons the steroids have affected her daughters development the other way. She is a big girl and going through puberty at 9, so now I'm worried he will be older... He was 27 1/2 weeks gestation with 2 doses of umbilical steroids to enhance lung development before his birth and a lot for his asthma afterwards. I guess we just have to wait and see if it's been an affect on his bone age. I can't find any research on the subject. Only a few more days now to wait. We are certainly feeling the affects of the change this condition has had on our family already. Patrick was the youngest snowboarder on the slopes the last two seasons. He's awesome on a board; beats me through the boardercross no worries and races ahead down all the black runs. This year we have had to write in and get our money back for our season's passes. We are all gutted... especially now it's finally snowed. Our daughter Indiana is also having a hard time understanding why she should miss out, but we don't want to say "hey see ya Pat we're all off up the hill for the day!" He was given a new snowboard for Christmas from Santa and it's still in his room. I don't want to put it away because I don't want to take all his hope away. Now it's going to be too small for him by the time he gets back up the hill. What would other parents do?
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Post by williamsfamily on Jun 8, 2007 5:18:41 GMT -5
Ckrhull, how's your son going with the casts? Are they the kind that hold his legs straight in a triangle shape? Is he able to walk? Able to go to school? It must be terrible for him to have to give up the sports for a long time. What sort of things is he doing with his time now? My son doesn't have any comprehension of time. I have said it might take two years or more for him to get better, but he still thinks he'll be out snowboarding before the end of the season. I think one month is one year when you are 7.
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Post by williamsfamily on Jun 8, 2007 5:41:01 GMT -5
Hi Donna, you have mentioned that riding is really godd for kid's with Perthes. I have contacted my local RDA for help with exactly what kind of riding and exercises... I don't know anything about whether Patrick should be riding at all at his particular stage, should he be doing certain exercise etc...? The RDA here is closed for the winter and said they don't know anything about Perthes, when I phoned them. We have several horses and Patrick is a competant rider, but riding at the moment hurts and he is certainly very sore when he gets off. Does this mean he should or should not be doing it? Thanks, Amy
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Post by Donna Brown on Jun 9, 2007 22:05:14 GMT -5
Hi Amy
I am assuming that sitting astride the horse hurts? That is because its hard for the kids to abduct (I hope I got that right - I still get confused between adduct & abduct!). Can he sit on the horse with both feet on the same side of the horse (sideways). It will take 3 helpers to do this - one leading the horse, one in front of him and one behind him for safety. This is where the likes of RDA are so good because this is what they do.
With regards to the snowboard, thats going to have to be your decision, but I do know that a lot of families get rid of things like trampolines immediately, as its so hard on the child to see something they can't use.
Email me thru perthesnz@yahoo.com.au and I can give you a lot more info about riding positions, exercises that can be done in the pool etc. If you feel it would help, send me your phone number thru that email too and I will ring you and help in anyway I can.
Donna
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Post by williamsfamily on Jun 10, 2007 20:21:48 GMT -5
Thanks Donna! I will send you an email and I think I have your number, so will call you... save you the toll call. Amy.
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tanya
New Member
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Post by tanya on Jun 11, 2007 16:09:14 GMT -5
Hi Amy, I understand how the feelings of missing out on family activities due to Perthes. Makes it really hard when other kids don't see why they should miss out. Fortunately for us Samuel is the sporty one so it hasn't affected his sibling. However we all miss the trampoline and it is often mentioned. Samuel has choosen to surround himself with all his soccer awards as a reminder that he will one day play again. If Patrick wants to keep the snowboard then let him. If not put it away or sell it. You may want to make him up a special voucher redeemable for a new board when he is able to ride again. That may be a good distraction and something to look forward to. All the best for the up coming hospital visit. Where abouts in the South Is are you? I was born and bred in CHC. Tanya.
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tanya
New Member
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Post by tanya on Feb 4, 2008 13:52:07 GMT -5
Hi All, It's been a while since anyone posted here . I wonder how many are still checking in? Would love to have updates and know where you all are with this Perthes journey. Samuel is doing well. Regrowth has started and while he is still on most restrictions he is able to walk heaps (pain limits the distance though) and even run a few steps! Great for his self esteem. We've still got a long way to go but at least we feel like we are getting somewhere!! Please come on board and fill us all in. Tanya.
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