Legg-Calve-Perthes Disease Member Introductions

#24

my son was diagnosed last year and was doing well until recently and now may need surgery. not that much information out there on this disease

0 Likes

#25

I am a mom of a 5 yr old son with Perthes. He was diagnosed 15 months ago.

0 Likes

#26

My son has Legg-Perthes. I want to learn about yoga and any other strength training exercises for my son who is in the healing phase.

0 Likes

#27

My son has the disease and one dr wants to do surgery and cast and the other wants to do just cast because it is in regrowth stage.

0 Likes

#28

I am a 46 year old male that was diagnosed with LPD when I was 7. I went through 2 weeks in the hospital in traction, then one year (2nd grade) bed-ridden at home with a school tudor. Then in my 3rd grade year wore a leg brace and crutches for another year. Progress was little and then had “new” surgery to correct. It worked. Was told I could become crippled later in life and will most likely develop arthritis. Would have pain when over doing it from time to time. Lately did too much and hurt myself. I want to find more information for adults that have grown up with LPD and how they are coping and what has happened to them. I am worried that LPD may be starting to affect me again in the prime of my working life–I cannot afford to become crippled.

0 Likes

#29

HI ! MY NAME IS DARRYL-AKA DABIGD. I HAVE HAD LEGG PERTHES SINCE I WAS A CHILD. I AM NOW 40. MY HIP SEEMS TO WORSEN, AND NO ONE WILL DO ANYTHING OR KNOWS ANYTHING ABOUT IT. IT EFFECTS ME SOCIALLY, FINANCIALLY, EMOTIONALLY, AND MENTALLY. MY REAL FATHER, A CARRIER, LEFT ME WHEN I WAS BORN. MY MOTHER, MARRIED A STEPFATHER WHO FELT SORRY FOR ME ONLY TO BEAT ME. AT SCHOOL, I WAS ABUSED ALL THROUGH IT, ONE TIME IN FOURTH GRADE BEING PUSHED DOWN, MY LEG BRACE TWISTED AROUND MY LEG, AND DRAGGED FOR A HALF A BLOCK. I CAN’T KEEP DECENT EMPLOYMENT, I HAVE NO CLOSE FRIENDS, NOR A GIRLFRIEND BECAUSE EITHER I PERDCEIVE THEM AS HATING ME BECAUSE OF MY HIP, OR IF THEY DO LIKE ME, I FEEL ASHAMED, AND PUSH THEM AWAY BECAUSE I GOT TOLD A CHILD I WAS NOT GOOD ENOUGH DUE TO MY HIP. NOW I HAVE FLASHBACKS, AND I AM SCARED. I INJURED MY HIP LAST FALL, NO JOB, AND NO ONE UNDERSTANDS OR WILL HELP. WHAT DO YOU SUGGEST?

DABIGD
MIDDLETON, WI.

0 Likes

#30

Families with children who have LCPD. Our Son is 7 and has been diagnosed.

0 Likes

#31

HI ! I just learned about this webiste from another support group. My son who is 8 has Perthes. I just want to learn all I can about it. He has a varus osteotomy in October on his left leg. The hip is actually doing well , but he has fractured his wrist and his ankle recently, and broke both of his arms at the dame time a year ago. I am concerned that this may have something to do with Perthes. The doctors (7 of them) have all told me that it is just becuase he is a boy and unlucky, but it has nothing to do with perthes. I am just curious if any other kids with perthes are experiencing fractures for no apparant reason
Thanks, cheri

0 Likes

#32

My 5 year old son has this disease. I want to learn about the progression of the disease and I would like to connect to experts and people with the disease or loved ones with the disease to share their experiences.

0 Likes

#33

My 7 year old son was recently diagnosed with LCPD.

0 Likes

#34

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. I’ve 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.

0 Likes

#35

I’m 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 “Safety Plan” 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 “consistent results for the disease”; 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?

0 Likes

#36

Hi! My name is Elizabeth and my 4 yr old has Perthes. I’d like to hear from other parents dealing with this.

0 Likes

#37

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 child’s case is different some need casts, wheelchairs or surgery some don’t 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.

0 Likes

#38

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 “balls” 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 Shriner’s 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. I’m 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.

0 Likes

#40

I was diagnosed with LCPD as at 5 years old,now I am 31 and living with LCPD.

0 Likes

#41

Hi I’m 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

0 Likes

pinned #43
0 Likes

#44

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 wasn’t 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 wasn’t the main pain. Like you I though my work days were coming to an end.

1 Like

#45

Hi , I’m 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 don’t 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 don’t 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 wouldn’t believe the difference the first time . Hips swing when I walk instead of walking from the knees down

1 Like