My son to be 6 year old was diagnosed with LCPD today. I am flipping out to say the least. I have no idea what to do for him or what to expect. Will he ever walk or run normally again?
Any & all information that you have is welcome.
Please help me learn about LCPD.
Our doctor said that about swimming too. I’m so glad to hear another mom confirm it!
Hi, I know what you are going threw, I was there 18 months ago. To be as honest as possible there is really nothing you can do except wait and see what the bones are going to do. You have to keep your child from running, jumping, and flat out overexerting themself. My son has been in a wheelchair for the last 18 months to keep him off his legs to get the bone to regenerate. He will be 8 tomorrow June 6, 2008. He is not in his chair all day but when we are out and about he does not have the strength to walk long distance. Keep the faith and know that this is NOT a life long sentence for your child. Please let me know if there are any more questions I can offer to you.
Sarah
OMG a wheelchair?! That hadn’t even crossed my mind. If you don’t mind me asking. What stage of LCPD does your son have? I apologize if it seems like I’m freaking out, but honestly I am. Our doctor said that swimming would good. Have you had any success with that?
We’ve lived with the diagnosis for a year now. I was as flipped out as you are now then. We’ve had a really good 10 months with no pain and just a slight limp. There are days where I completely forget that he has Perthes. What you are going to find is that there are as many opinions about care and surgery as there are doctors and parents out there. The one sure thing about Perthes is that is nothing sure. A doctor can’t look at an x-ray and tell anything about the child’s quality of life - my doctor told us he’s seen x-rays that look relatively normal and the child is in excruciating pain and then there are kids like my son who’s x-ray show most of the head completely gone now and he’s pain free. My doctor has basically said that we can allow Nate’s body to determine what he can do. We don’t let him jump on trampolines, but we don’t restrict him very much either. When it comes right down to it - the studies out there really can’t prove one way or the other that any one treatment has better results than another. You can find very sound arguments for every side of every argument out there. My son is now 8 1/2, but his bone age is only 4-6 so we are still waiting it out to give his body time to grow new bone. All I can really tell you is that you have to find a doctor that you trust and then you have to trust your own instincts as well. It’s a one day at a time thing - as many good days as we’ve had, I know that in a heartbeat that could change and he could be back in complete lock-up and pain. I don’t let myself read the forums very often because it gets very depressing. I think that if you are one of the parents who has a child that is on the really bad side of things, then the support is great, but if your child is not there, then it’s just a very scary thing. Know that it can go there, but then focus on where you are and don’t borrow trouble. Best of luck to your family.
FYI for all Moms who read this …SWIMMING IS THE BEST THING WE COULD HAVE DONE FOR OUR SON…We put him in swimming when PT was not getting the job done. His pain and stamina has been soooooo much better then before. Our Doctor said that the swimming would be the best for him and it has.
Even that proves that nothing is certain. We got the same advice about swimming last year when we were diagnosed. My son had a horrible time with pain and locking up all through June until mid-July. Coincidentally, all his pain and tightness stopped abruptly when swim team season ended. So, it’s not always a great thing. We are trying it again this summer because he’s had such a great year and so far so good, but we are watching carefully. I think that competitive swimming and cold pool water may not be the right thing to do depending on where you are in the deterioration.
Does anyone know what the difference is between the stages? Or where to go to find out? Right now Ryan is in Stage A. The doctor said he should be alright. He also said that I didn’t have to hold him back from playing I just had to slow him down if it begins to hurt. None of which makes any sense to me. Why would I wait until it hurts?! instead of just not letting him run around. I swear, I get more & more confused everyday.
I found this web site to be one of the easiest to understand and it’s what I print out for Nate’s teachers and anyone who asks about his condition.
http://www.nonf.org/perthesbrochure/perthes-brochure.htm
My doctor has also told us to allow Nate’s body to determine what level of activity he can do. When he was having a hard time, we made him take it easy and concentrated on his mobility with some stretches that our PT gave us. Our doctor did say that if his range of motion degenerated, then traction was a likely course of action. So far that has not happened. When he’s pain-free his range of motion seems to be very good.
I have a two year old son that was just diagnosed with Perthes today. Is there anything that can be done to minimize the pain aside from Motrin and massages? How bad does it really get? The doctor made it seem like it was going to be minimal. Like this disease was not very serious. At least that’s the impression I got.
I found that swimming has helped with the pain. Ryan has been in alot more pain since we’ve cut back on the swimming everyday( Due to school). You may want to get your son into a pool, even if it’s just kicking around.
I got the same impression from our Dr. that this isn’t a big deal. But it is. No it’s not life threatening, but it’s still scary. Especially after reading some of the horror stories about the disease.
The one peice of advice I would give you is NOT to read every bad story out there. It will only stress you out more & it will not help your child. I’m not saying not to find out all the info you can. I’m just saying try to limit the personal stories that are available. Every child and every case is different. And the disease is treated differently than it was in the past. Unfortunately, No one can tell how bad ( or not so bad) things will get.
I think the worse thing about the whole disease is that as a parent you just want to “fix it” & make it go away. I still feel that way. Unfortunatley we can’t magically fix it . All we can do is follow the doctors orders, PT & medication for pain. Ryan was just switched to Naproxen, from Motrin. But your son may be too small for that. Besides that I think the Motrin works better.
Anyway… I know how freaked out you probably are. I still freak out, when ever Ryan has a bad day. But you will learn what to do & watch out for. I’ll be here if you want to talk.
~Dina
Dina,
Thank you for your message.
I just feel so scared. I don’t know what to expect and most importantly I don’t want my son to suffer. We went to the mall today and people turned to stare. My heart went out to my baby.
I will get him into swimming classes and hope that this helps.
Do you do PT with him at home? According to my Dr & therapist. it’s really important to keep the joint mobile. Good Luck with the swimming lessons. I hope that it helps 