For the last month, little Gillian has been limping around, claiming her knee hurt. We asked our wise friends who have children her age and the official diagnosis was growing pains. After a week we took her to the doctor who xrayed her and the diagnosis was that she was too flexible and she overextended. Last week while I was in Cinci I got a call from Steve that she couldn't even walk.
Enter specialist, xrays, diagnosis: Perthes. Technically the name is Legg-Calve-Perthes disease which is ironically not related to the leg and calf but two doctors whose names only sound like those body parts.
There is one doctor in town who is a pediatric orthopedic doc named Mark Maguire. Whose name only sounds like the famous bball player. Gillian claims he is handsome so I guess he is probably excellent.
I called him yesterday morning and he has yet to return my call so I am going to ask my questions here on this blog and go for research by consensus (that means you have to go look this stuff up because I tried and didn't get no satisfaction.)
1. For the first four weeks she is supposed to take motrin twice a day to reduce swelling. How much exercise should she be doing during this time? Should she be participating in PE? If she should, do I tell the PE teacher she can't do it anyway since she hates it and that is probably my fault since she inherited that from me?
2. What is next? I have seen pictures of double-legged casts, braces, and surgery. How likely is that for my little girly girl?
3. Physical Therapy sounds cool--for the women who get to work with attractive male masseuses--but for parents this is a sad affair, right? When Casey was a wee babe he had one of these helmet thingies and we were supposed to do some neck stretches. We tried, I swear we did, and of course we were in our twenties, but consistency was noooo bueno. So how now? How many days a week am I going to set myself up to fail? What if she hates them and cries every night? How will I face her? Are these exercises going to hurt? How frequently do we need to really do them to make this thing happen?
4. What is the long-term worst-case scenario? Gillian said to me the other day "I am always going to walk funny and people are going to make fun of me." It almost broke my heart--and then I was like "hey what kind of kids are at this school??? Am I fighting for a bunch of punks??" I told her that she was young and that we just had to fix her bones up and then she will be just fine. El doctor said that it will take 18 months to 2 years to get her back on track. What does that mean? 2 years? What is going to happen during that time?
5. What else do I need to know? Is this really something to worry about it, or is it a relief that her "disease" is not life-threatening?
Thanks for playing.
Ok...again, no expert...but here's what I know.
ReplyDelete1. Our ortho says NO motrin..that motrin slows bown growth and that is something you don't want with perthes. Yes, it helps w/inflammation but it's not something you want to use everyday. The main thing while she is going thru this process is no jumping and no hard running. Anything that puts hard impact on the hip is not going to help her cause.
2. Age is definetly on her side...statistically kids 5/6 and under do ok without major intervention as long as the hip stays contained w/in the socket and the ROM (range of motion) stays in good limits. Our problem was that Dalton's hip was (and still is) out of socket (they call it sublexing) and his ROM sucked eggs! Don't let them play the age card and use nothing else to go by. We had THREE doctors here in SC say "oh he's 4..he'll be fine" even though the hip was out of socket and his ROM was just terrible! He was also waking up in severe pain around 4 times a week! This went on from December - August! We now see a doctor in Baltimore, MD by the name of Shawn Standard. He is hands down the absolute best doctor for this. He is amazing..I can't say enough good things about him. He even will allow you to send him your daughter's xrays and he can advise you if he thinks you are on the right track. I can get you his contact info if you are interested. Now, not to freak you out, but statisically girls typically do worse w/perthes for some reason. They are more likely to have to have intervention. I have no idea why, but it is one of those "statistics". I have a link on Dalton's blog for a perthes support group..the women there are awesome and can answer a lot of your questions!
3. Physical therapy is no fun really..it's not horrible..Dalton always was just a little afterwards but the real pain was just making time in the day for something else. Dr. Standard has a list of exercises that help with ROM that are safe for all perthes kids to do. I have a link to them on my Facebook page..I can send them to you if you would like. I am happy to say that Dalton's ROM went from hardly none to w/in normal ranges by doing these consistently. Keeping good ROM is a big key to keeping her out of braces, casts, or the operating room.
4. Perthes is a long term process...the head of the femur breaks down and collapses and then starts regrowth..it can take time..anywhere from 18mos-2, 3 years. Pain could get worse for her before it gets better. With Dalton, his pain level was almost always right along w/his activity level. The more we let him run, jump, climb, etc then the more pain he was in. It got to a point that the pain was so bad we just had to make him stop. And, yes, it was very hard for a 4 year old boy. If you ever have time to read the blog from the beginning you can see how much we struggled for a while. It's confusing, it's sad, it's tough to process but once you do then you'll be ok.
5. Something that one of the ladies on the perthes support group told me was to look at the big picture. Perthes is life ALTERING, not life ENDING. That really helped me gain perspective that yes, it's going to be a pain in the behind but it could be much, much worse. Leg pain in a young child is a major leukemia symptom...at first they tested Dalton for that and I was freaking out! So after that, perthes isn't so bad.
Anyway, just know that there are others out there that are dealing with this. You may not know anybody in real life..I only know of two people in my surrounding area (and have never met them)..but there are many that do understand and can help you out.
Let me know if you have any other questions!
Lori (and Dalton, age 5 in SC)
So another question is who is Perthes? Drs. Legg and Calve couldn't find a Dr. Hipp or Bowen to work with?
ReplyDeletePoor sweet Gillian. It must be so rough for her to go through. I hope that the treatments work well.
And I have plenty of advice about dealing with kids in double-legged casts (called a spica cast). If that ever becomes an issue, I'm your girl.
Good luck with all these changes and I hope all goes well.
I don't have any words of wisdom to impart, but I'm sorry to hear about poor Gillian and hope everything goes well for her.
ReplyDeleteI had to laugh at the name Legg-Calve-Perthes, though. Some things you just can't make up...
I called our pediatrician in Utah for a referral, and he said that all pediatric orthopedic specialists in the valley work at Primary Children's. Might be worth a call?
ReplyDeleteJust when you're done going to war for Cesar Chavez, you get to reload and go to war for Gillian, huh? You do good work.
No words of wisdom from me, just love and lots of it...
ReplyDeleteI feel overwhelmed for you. So many questions and not knowing the direction you'll be heading is hard hard hard. We'll pray for you and little Gillian.
ReplyDeleteHmmm. All I can think about is that one of my kids has been crying about his legs hurting about 3 to 4 times a week, for the last 4 years, and I bring it up to his pediatrician every time we go in, and every time, his pediatrician says it's normal growing pains. Is it normal to have to medicate your kid that often for that long? I think not. Can you diagnose my kid?
ReplyDeleteWill you please give Gillian a hug for me? And while you're at it, give one to Casey, Bridget and Meghan, too. And Steve...
ReplyDeleteMy brother is a doctor sooooo...
ReplyDeleteJay Kay. I heart you and wish you the best. Always.
ReplyDeletehi
ReplyDeleteHI ..
ReplyDeleteI have a girl on stage of growth that many complain of pains in their knees and sometimes when she plays, I've seen sometimes she sits on the floor and touch her knees .. Can this be Legg-Calve-Perthes disease?
I have a son who has been diagnosed June 15th on his 3rd birthday with perthes in both his hips and I am suppose to keep him still for 3 months before the operation and I dont know how. I am so afraid dont know what to expect. Any advice? Thank you. Blessings.
ReplyDeleteI came across this when googling for long term effects of Perthe's.
ReplyDeleteI am now 54 and had Perthe's as a child. It started when I was nearly 5. I then spent 8 months confined to bed (even to the extent that I was tied in at night!. My parents were wonderful, I had a night time bed and a daytime bed. Luckily they could afford it. The headmistress from my school (all five of my older siblings had attended the same school so we were well known there) came every day after school for an hour to tutor me. I then spent 8 months in a wheelchair and 8 months with a caliper. Perthe's has affected me, but it has never defined me. I was made to feel special but not in a "special needs" way. How you approach it as a parent will be the thing that determines the outcome. Give your time. Children are remarkable the way they deal with disbilities, I am sure yours will. I do have physical problems from time to time, but they are nothing compared to what some people have to live with.