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Post by justlooking on Jul 6, 2008 20:25:14 GMT -5
Hi Donna, Thanks for your prompt reply. My little man has a much better range of movement now but our specialist grades it on 8, 9 good hip 4, 6 perthes hip. He has done several casts, cut tendons, lots and lots of traction and even had a brace he wore for 12 months constantly then another 12 months only at night. We tried swimming but he had a awful experience in one lesses he had a new instructor who swam with him up the deep end and left him there with 3 other kids to tread water and hold onto the side while he went back to get another student. Well the hip seized and under he went. Now he has a fear of water. l tried to get him into RDA but was told he did not qualify, there is a RDA school in my suburb. Having grown up riding my girls have ponies and l have often got him up for a walk around but the look on his pale little face he is terrified, He is not much of animal person at all. He is a stocky little fella which does not help, starting school helped him lose weight and he is aware he can not do the things the other kids can even if he cant feel the pain he still needs to take it easy, he also only has the one kidney so contact sports were always a big no no. We are off on Friday to have our daughter x rayed to check for perthes, we were told it was virual arthritis that effected her hip causing her to limp and be in pain, but l am just not happy with this diagnosis as she is limping too often. Unlike my son it comes and goes she has had it happen 4 times now and for a two week period cant bear weight on the leg and from the way she is walking it is certainly the hip. We have had x rays before but this time she is off to a specialist. My experience is with GP's it's a 50 /50 chance they know what to look for. l even had one GP when filling out a form asked me to spell perthes ??. JA
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Post by Donna Brown on Jul 6, 2008 21:30:54 GMT -5
Hi
No wonder he isn't happy about swimming! As for the RDA, we have never had an issue with qualifying for that and I know that other perthes kids qualify also.
Fingers crossed that your daughter doesn't have perthes as well, as one child with it is more than enough.
Donna
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Julie
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Post by Julie on Jul 13, 2008 7:25:36 GMT -5
Hi justlooking
Sorry to hear of the problems you have encountered with your young bloke. I notice you are from Australia. So am I and I work with GPs and GP practices. My advice is to find a GP you are happy with and stick with them. There are GP organisations across Australia called 'Divisions of General Practice' (DGP's) which keep information about GPs in their patch including special interests (such as paediatrics and/or orthopaedics). It might be worth giving them a call for a recommendation. I'm happy to provide you with details of your local DGP if you would like assistance.
We received a letter from the specialist this week advising that 'Matthew is young to have full head involvement'. Disappointing to find he has full head involvement, but hoping that at 6 he still has age on his side.
Julie.
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Post by kentsmith on Sept 20, 2008 22:23:45 GMT -5
Hi All,
My daughter Lara has just been diagnosed with perthes on her right leg, the doctors that have seen her to date have mentioned growing pains in her right knee but no one ever thought of this! We have a specialist appointment this week and will soon be enlightend to the extent of the damage done to date, here's hoping that she makes a fast recovery and she stays postive. I will keep you all informed of her progress
Kent.
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Julie
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Post by Julie on Oct 5, 2008 23:38:14 GMT -5
Hi Donna I want to thank you for the hydrotherapy advice you provided a few months ago. The discomfort Matthew experienced in his mainstream swimming class meant we had to arrange for a one on one class. His freestyle and butterfly in particular are coming on strong. We had X-Rays on Thursday & he is now fragmenting with significant bone loss. What we find amazing is that with so much bone fragmentation (he has 100% head involvement), he is virtually asymptomatic & has been since about June. The only time he experiences even a slight limp is if he has had a busy day with peers. And he almost never complains of any pain. We are convinced the hydrotherapy sessions, complementing his modified swimming lessons have led to his progression so far. Thanks Donna
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lisak
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Post by lisak on Oct 29, 2008 6:39:00 GMT -5
Hi all, My now 10yo son was diagnosed at age 4 with Perthes bilaterally. As well as this he has now been diagnosed with Severs disease. The poor kid can't cop a break. I have noticed that your site is NZ based and I was wondering if you know of a AUS based one....? It seems lately he is so much worse and he is very hard to keep off his feet. He hobbles around in the morning and hobbles back to the car after school. I am at my wits end. He has seen his specialist again (last week) and we need to get another set of xrays to see what's going on. I am wondering if there are any specific treatments I can 'demand' (ask for) that will help. How do you keep a 10yo male of his legs? ? He plays basball twice a week as well as training twice a week. Thanks, Lisa
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Post by Donna Brown on Oct 31, 2008 22:29:09 GMT -5
Hi Lisa
I'm sorry I don't know of an Australian based group. There is an awesome one based in the States, that does have members from NZ, the UK and other countries, including the occasional one from Australia, if you are interested.
There are a lot of the older kids on there too, so lots of ideas from other parents in your situation with regards to allowing them to participate as much as possible, but still with the need to keep activity levels down at a manageable level and the attitude stuff that goes along with that, when your child is in the pre-teen and early teen age group. If you are interested, email me directly at perthesnz@yahoo.com.au and I will ensure that an invitation to the group gets to you.
Donna
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osky
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Post by osky on Feb 18, 2009 23:55:21 GMT -5
Hi, I felt compelled to share my 'little' adventure with Perthes. I am a 35-yo male who was diagnosed at 9 while we were living in Invercargill. I spent 5-weeks in hospital, traction etc which was not pleasant. However, what put into perspective for me was there was a girl the same age who had just lost her whole leg to cancer.
I was put into removable splints with velcro straps, I was told at the time I was one of the first to have this type of split. I went through 4 sets over the next 2-years. At 12 I was given the all clear to resume my life as a kid, not that the splints slowed me down much anyway. We moved to Australia the next year and have since grown up, married and have 2 boys. Very nervous about passing it on...... Last year I decided on hip replacement to fix the ongoing pain and 'locking' sensation that i was always going through. The first 6-weeks is hell, don't let anyone say otherwise, sleeping is difficult, and you can't tie shoe laces yourself. However, one year on, I can say it was the best thing I have done relating to my hip. My wife has noticed I am not as moody, I no longer have pain when I am flying or chasing the kids.
For the parents who are going through this for the first time, my thoughts are with you. I know (now) that I gave my parents hard time, it was unintentional, however, you generally vent at the closest people to you. It also didn't stop me from being a kid, i didn't suffer much with self pity, I think Mum did that for me! My advice, give them the space they need and let them play as much as possible. It made me a stronger person to deal with the other kids etc
Good luck!
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Julie
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Post by Julie on Jul 20, 2009 20:58:38 GMT -5
Hi all Though I'd share an update on our son Matthew (now 7). Last set of X-Rays in June show while he is still fragmenting, there is now a very good blood supply which has been re-established and he is showing signs of reossification. Head remains well contained and we are hopeful that he will continue with a pain free recovery. Matthew's specialist (Dr Michael Bellemore at Westmead in Sydney) has advised Matthew that he will be able to resume playing soccer from the end of the year. Lisak, have you found any other families with kids with Perthes nearby? We live in rural NSW (Australia) in a town of about 25,000 population and have found 3 other boys in town aged between 4-8 with Perthes in addition to Matthew which is great for support. Thanks for sharing your experience osky
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Post by Donna Brown on Jul 30, 2009 14:32:03 GMT -5
Does anyone here from Australia, know of a surgeon there who uses the external fixator? I have a family in Adelaide that really need to access this treatment.
Cheers
Donna - NZ
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Post by connie on Sept 16, 2009 5:08:36 GMT -5
Hi All,
My son Austin has been diagnosed with perthes on his left leg in May. We went to see the specialist in Westmead Children Hospital. He said Austin was on very early stage of perthes. He cannot do anything for him at moment, but the specialist will see him every 3 month.
Austin is still limping but does not complain much about pain. Next Tuesday we are going to see the specialist again. What kinds of questions should I ask him to make sure i know my son's condition? i live in sydney, does anyone here live in sydney ?
Thanks
Connie
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Julie
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Post by Julie on Sept 16, 2009 21:26:44 GMT -5
Hi Connie We don't live in Sydney, but our son Matthew (now 7) is under the care of Dr Michael Bellemore at Westmead. Some question we asked initially were: • Explain exactly what happens in Perthes; • Where Matthew is up to in terms of progress through the phases & what we could expect (long & short term); • Does Matthew's X-Rays indicate he progressing ‘normally’ through the course of the condition? By this I mean femoral head remains well contained in the hip socket and head regrowing in a normal rounded shape (it may be too early to tell yet. We only had our first indication of this last visit). • What are Matthew's treatment options; • What are Matthew's’s limitations in terms of activity (eg. sports); • What is Matthew able to continue to do normally (eg. walking, swimming, school activities); • Typically how long until Matthew can resume unrestricted activities; • How can we best manage Matthew’s pain; • How often do we need to have X-Rays/see the specialist; A few other tip you may or may not be aware of: - Make sure Austin 'always' has a lead protector across his genital area when having X-Rays. My husband is a radiographer & insists on it, but some do not think it is important or even discourage it. - If Ausin's limp/pain affects his mobility significantly, you are eligible to apply for a mobility parking permit so you can park in disabled parking spaces. We did not need to apply for this fortunately, but we did have our GP complete the paperwork just in case. The form can be picked up from the RTA. Hope this information is useful to you Connie & that Austin's prognosis is good. Julie
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Post by connie on Sept 17, 2009 7:47:51 GMT -5
Hi Julie,
Thanks for you reply. The advices you gave to me are really helpful. I also will ask to put a lead protector for Austin when he has next X-ray. Thanks a lot.
I just picked up Austin's X-ray report which shows femoral head more flattened and smaller than last X-ray(in May). I feel sad. Anyway, i am looking forward to see the specialist.
Connie
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Post by heatherengelbrecht on Nov 1, 2009 19:02:20 GMT -5
Hi, just joined this forum. Our 5 1/2 yr old son Ethan was diagnosied with Perthes in June 2009 after complaining of a sore hip. First xray showed about half the ball joint (right leg) worn away. Second xray on 23/10/09 showed nearly a complete flattening. He was admitted to hospital on 25/10 and spent two days in springs to stretch the tendons (to avoid cutting the adductor tendon) before being put in a petrie cast (this comes off on 9/12). His doctor has advised he will also need a femoral osteotomy (cutting the bone and inserting a metal plate and screws to tilt the femoral head into the socket). He has advised we should have this operation done in mid January. Have any other parents of perthes children had this operation performed. We have concerns about taking such a drastic measure. Surely we could follow a strict regime of physio exercises coupled with slings and springs at home. Look forward to any feedback. Heather
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Post by Donna Brown on Nov 2, 2009 23:42:25 GMT -5
Hi Heather
Sorry to hear about the diagnosis.
No-one wants to hear that their child has to have surgery and the osteotomies aren't the easiest ones to get your head around, so I understand how you are feeling at the moment.
Have you considered getting a second opinion? It might be that with a rigorous stretching and exercise programme, that you can avoid surgery, however, if his femoral heads are subluxing (the balls of the hips are dislocating), then surgery is the best way to get them re-contained, so that healing can commence with the body in the best position possible. There are alternatives to the femoral osteotomy, including the pelvic, which is less invasive and also the external fixator, but this one would depend on where you are, as to whether or not there was a specialist trained to do it.
Contact me directly at perthesnz@yahoo.com.au and I will help you where I can, to put you in touch with alternative specialists and/or families in your area, to help you with getting all the information you need at this time.
Donna
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