My 7 year old son was recently diagnosed with LCPD.
Hi!
I was diagnosed with LCPD in my right hip when I was 5 1/2 years old.
I was in a wheelchair for about 3 months and then in a brace for a year.
I have been able to live a very full life. Iāve had very few problems. Only two sports, gymnastics and figure skating, were too much for my hips to handle.
I had two normal pregnancies and two healthy sons. Neither of them have had LCPD.
I am curious if other survivors have trouble with varicose veins.
Iām a mother of a 5-year old boy who was diagnosed with LCPD in February of this year. Since then he has done daily stretching and strengthening exercises, sees a physiotherapist bi-monthly, swims regularly, has a school āSafety Planā with our board of education (he attends SK all day, every day). He has not had any pain since the onset when he bumped his hip and an x-ray told all. His second x-ray shows āconsistent results for the diseaseā; whatever that means. I nag our son constantly to not run or jump, but he is, after all, a happy-go-lucky 5-year old who wants to explore everything with a jump in his step! Our next x-ray is in October, but I dread the moments of pain that are looming ahead of him. Am I wrong to assume that it will be a terrible time?
Hi! My name is Elizabeth and my 4 yr old has Perthes. Iād like to hear from other parents dealing with this.
My son was diagnosed at the age of 3 and is 6 now,it has been a long road.
All I can tell you is every childās case is different some need casts, wheelchairs or surgery some donāt need anything.So sometimes reading other peoples stories can still leave you guessing.
You just have to take it day to day and follow your doctors plan.My son has not needed surgery just bedrest at times and the wheelchair.the longest he was in the wheelchair was 3 months at a time.
The best advice I can give you is swim swim swim!!! it has been very beneficial to keeping him loose and is one of the activities he can do.also green leafy vegetables their loaded with vit k.my son has whole head involvement and he has been very lucky not to need surgery. i think its due to all the swimming he does. if you live in a cold weather state just join a ymca or sports club.
I wish there was a better support group out there to talk with parents when your at a rough stage of the disease and just need someone else to talk to who is going through the same thing.
I was diagnosed with perthes at about 4 or 5 years old. I dont remember much about it except that no-one knew anything about the disease.
My mom and I spent a few months trying to find out what was going on with my legs. I had it in both legs. 3/4 of one of the āballsā in my hip joint actually broke off and I was unable to walk. We first knew something was wrong when I got out of my bed on morning and walked about 15 feet from my bed and fell to the floor.
After we found out about the disease I was admitted to the Shrinerās Hospital in Tampa, Fla for about 6 weeks. then I was put into a leg brace which made me walk like a peguin. I was picked on a lot growing up b/c of that brace. It did however save my hips. I think. To this day I still dont know much about Perthes disease and I fear that my two boys will end up with it. I dont know how to prepare for that possibility.
I am also having problems now with one of my legs. I have had no recent injuries to it. I just woke up one morning with pain in my left knee and within a couple of hours I was feeling pain in the left side of my left hip.
This has been going on for over six months now. Iām in the military and am a bit scared to goto the doctor complaining about hip pains. My job depends on me being able to move around a lot and since this disease has left me with poor flexablility in my legs, I have a hard enough time moving like I should. I am open to any and all information.
Thanks for reading this.
I was diagnosed with LCPD as at 5 years old,now I am 31 and living with LCPD.
Hi Iām Dina. My soon to be 6 year old son was diagnosed with LCPD yesterday. I have know idea what to expect or what to do for him. Any & all info or advice that you may have is not only welcomed, but needed. Please help me figure all this out. Hope to hear from someone.
Thanks
Dina
Hi , I had perthes desease when I was young , now 47 and had always been living with pain in knee since, unable to sleep many times - UNTIL I went to a chiropractor, apparently my pain was due to my mussels being tight in my buttocks (because I wasnāt really waking straight) and pushing on my nerve running down my leg. He even shown me pics on his wall where the pain was!! I have arthritis in my hip , but that wasnāt the main pain. Like you I though my work days were coming to an end.
1 Like
Hi , Iām 47 and lived with perthes , I have arthritis on my hip and have always had sleepless nights due to pain. Until I went to a chiropractor. Apparently because I donāt walk straight my buttock mussels became tight , causing the muscles to press on my sciatic nerve . He even had pics on his wall showing exactly where I was having the pain in my leg!! . He said that if I should eventually have a hip replacement, and because the surgeons donāt always get it perfectly lined up , that the muscles would still tighten over time. I now go every 6 weeks and have the muscles stretched. You wouldnāt believe the difference the first time . Hips swing when I walk instead of walking from the knees down
1 Like