Perthes Disease -Son is now having ankle issues
Posted , 2 users are following.
My son who is now 8 years old was found to have Perthes disease at age 3. He has a bad case. I have taken him to three different doctors all say that just waiting and watching would be the best method. He doesn't complain a lot and still after all this time he has had little regrowth. I'm starting to get frustrated with the doctor. He has a limp and now he is having some ankle problems. He is lossing some of his range of motion in his ankle and they say its because he walks on his tip toes. He does this because of the leg difference. I have tried lifts and he couldn't do them. So I'm unsure what to do for him or if should look at another doctor to see what they say.
0 likes, 3 replies
tina00201 sheila04
Posted
Hi Sheila, my son was also 3 when he was diagnosed with Perthes, and had a very severe form, so I fully understand what you are going through.
what has been your sons form of treatment? Did he have to be non-weightbearing in the beginning?
Just from what you've said so far, I'm getting the impression that your sons treatment hasn't been the best, if his bone re growth hasn't started yet and he has a leg length difference this will cause him significant pain and causing him to walk on tippy toes is not a good thing because his muscles will want to stay in that position. You can ask several Consultants how to treat Perthes and they will all come up with a different answer. When our son was diagnosed we wanted a second opinion but we spoke to the Perthes Association and when they knew what consultant we had, they told us we had one of the best in the country and he has the highest success rates.
I'll explain our story and it may help you. Our son started limping at 3, so we saw a GP who referred us to hospital, we were given a appt for 6 months time but he became worse so I pestered everyone and we were seen as an emergency, it's just as well because when his XRay was looked at, his hip was so bad he had nearly worn away into the growth plate. We were told he had to stop weightbearing immediately, use a wheelchair for 1 year. We were so shocked, but he adjusted well. He suffered a great deal of pain and was admitted to hospital several times, for 2 weeks of traction and in the end we took the traction home, so that he didn't need to be admitted every time he needed it. In that first year he spent 8 weeks in hospital, went through scan after scan, arthroscopes, etc. he confused the doctors because he still had full range of movement but we now know he has Hypermobility. This went on year after year, desperately waiting for the blood supply to return, his pain was horrendous which they didn't understand, so much so they got other doctors involved because they thought it could be cancer as well so did bone marrow biopsies, bone biopsies and loads of other tests but they were all negative. In the end he was 9 years old before the first glimpse of new bone, and he was allowed to gently and slowly start walking, he needed physio and hydrotherapy. It's been a long road to recovery, complicated by a cyst they found in his spinal cord, which isn't doing anything at the moment but has the potential to start destroying his spinal cord, so we have to watch for signs of weakness or pins and needles. He was finally discharged from hospital at 14. He still gets pain if he over does things and has a lot of back pain but walks normally. He has other challenges as he's autistic and has dyspraxia and ADHD.
i would defitely question the treatment of your son, try to get him to rest as much as possible, it's all about trying to keep the bone rounded so the least pressure on it while it is so fragile, the better. I would ask the doctors, if they don't want him in a wheelchair, can he have crutches? Walking the way he is, is going to cause him problems in his leg, ankle and back, if it carries on to long.
I'm here if you have any questions, Ive learnt quite a lot about it as they used to use my son to train new doctors at the hospital.
xx
sheila04 tina00201
Posted
So I believe that he has had some regrowth but I'm always a little unsure because I get a little confused from his doctor. This is from his last check up:
Impression: There has been slight interval improvement in fragmentation of the
left femoral head with minimal increase in height and increased bone density
since the prior study. Otherwise, little change in sequela of Perthes disease
on the left. Normal right hip.
Ever since he was found to have this we have tried PT because he does have loss of range of motion. PT didn't work well and I let his doctor know. Since I didn't feel that was the way to treat it. I went for a second doctor which is still the one he sees today but I did take him to a third doctor. They both told me surgery is something that won't help him. They like the watch and see what happens with him. They also told me and he has been in sports for a while now that he can do anything he wants. They did tell me at one time if the rough housing he does with his cousin could dislocate his hip but they seem to think that he should be held back now. He is starting football in the fall. He runs around a lot and is very active. I think he has a very high tolerance of pain. My husband is the same way. So if he is limping more then I know that it is bugging him more. He tells me that it doesn't hurt him anymore and I kind of figured that he has just gotten used to it. I have never liked the answers I have gotten but I kind of ran out of doctors in our area and his GP always ask why I don't like a doctor. So I'm just at a loss as to what to do.
tina00201 sheila04
Posted
It sounds like he's definitely been allowed to do too much, rest is the most important thing for Perthes, while it is the defragmentation stage there will be a reduction in range of movement and that is perfectly normal. To be honest I'm surprised a Physio would work on him while he was in this stage. Now the bone is growing back, it will be extremely soft, and the most important thing is for it to grow back rounded to avoid it dislocating or becoming arthritic in the future, so while this new bone is growing it's really important he doesn't do too much, he shouldn't be involved in any contact sports because this puts him at risk of damaging the regrowth. His school should learn to watch for signs of him being uncomfortable or in pain and make him stop and rest, my son used to keep going no matter how much pain he was in, just so he didn't appear different, he wouldn't admit he was in pain, so he had to be made to stop to avoid him damaging himself. The fact that he is showing signs of pain, limping and leg length difference shows that he is not in a good enough level yet to start building up his strength, there will be plenty of time to do this once the bone has recovered. I know how incredibly hard it is to stop them doing what they want to, but it is to give them their best chance of a full recovery.
my son is now 15 and still suffers with pain in his hip, but it has recovered as much as it's going to, his hip has grown back to a third of the size of what it used to be, and that is where it's stayed, but this is normal, they very rarely get full regrowth.
I think you need to try and stick to one Consultant with him, but just show that you are more knowledgeable about the condition and ask questions, don't be fobbed off or rushed out the door. X