jules
New Member
Posts: 3
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Logan
Oct 8, 2008 13:40:28 GMT -5
Post by jules on Oct 8, 2008 13:40:28 GMT -5
Well, my son Logan who is almost 7 was just diagnosed with LCPD and I'm learning a lot of information. It was last November ('07) he started to limp, and because he is very active we thought he had just hurt himself. So we took a week off school, and hockey(his passion) rested his leg, and in a week he was fine. He had always pointed to the front middle of his knee and said thats where it hurt, we did notice a little swelling around the knee and I gave him Motrin. He continued to play on a house league hockey team as well as a Tyke Select and was fine the whole season. Three weeks after hockey ended he started limping again and he turned his right foot inwards. So we took a trip to the DR's and checked his mobility and did notice a strength difference, it was brushed off as "growing pain" and if it was to get worse, to come back. So a week later, with the limp more evident and now he was complaining that he was in pain, we went back. Of course nothing came of it and he said wait and see, and give it some time, oh and to stop giving him the motrin for the swelling. A neighbour suggested that something else was wrong and take him back to the DR and ask for a referal to physio and he agreed to give Logan X-rays on his knees and just his right hip. So Logan started physio 3 weeks later. The X-rays on his knees of course were normal, and the radiologist thought he should have more X-ray's done. The DR refused more X-rays. We kept that up for 3 months and Logan was doing great, he stopped limping and his foot had turned back out and was normal. About a month and a half after that it started with the same things again, limping, pain in his knee, stiffness in the morning. So I called his physiotherapist and made an apointment to see her. She noticed that Logan's ROM was bad and when manipulated felt a lot of "guarding". I said I was worried and that this problem was something more and that we needed to take it to the next step. She said that she had to exhaust all of her avenues first. I thought fine, I do have confidence in her and she promised not to let Logan slide through the cracks. I got a phone call from her later that day, she had reviewed his X-rays and chart and put in a call to our DR, to which he agreed for a referal to a pediatrician, ultrasound and pelvic X-ray. So we went into his office for the referals, he only agreed that Logan would see the pediatrician and let him do the rest. I was confused, and worried that we had to wait longer, the peds apointment was 8 weeks later. So Logan did all the things he normally does, we signed him up for powerskating, and hockey, run, jump, play, and we thought if things get worse we will go right to the ER. Logan started playing hockey and his strenght was great, and he was struggling a little with is speed, which was a little hindered by a limp, but he didn't complain that it was sore. So three weeks ago his physiotheripist suggested NO running, hopping, skipping and NO gym. The school disregarded our wishes, so we decided to take matters into our own hands. He went to school in the morning and picked him up before lunch, and took him public skating and we focused on biking as well and then took work home with us to do in the afternoon. We noticed an improvement, his foot was still turned in but the limping wasn't as bad. On a whim, Logan got to see the peds DR on a cancelation, he was very good and reviewed the chart from physio, and ordered 2 pelvic X-rays, ultrasound and blood work. He got the results and called us with the diagnosis. He said to continuse with the physio for now, and cut out the hockey and no running, jumping or hoping. He was crushed, to say the least about missing out on hockey, I was too. We now have a referal to Sick Kids Hospital in Toronto, Ontario, Canada. And for now its just a waiting game. I'm scared of what the future holds.
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Logan
Oct 10, 2008 17:01:24 GMT -5
Post by Donna Brown on Oct 10, 2008 17:01:24 GMT -5
Hi and welcome!
The no running, jumping etc is to minimise inflammation, as inflammation equals pain.
Can you get Logan into swimming at all? That would really help with his ROM and also help a lot with burning off extra energy that a previously active child will have when on heavy restrictions like the perthes kids get.
Its really good that you are under the care of a physiotherapist already and it certainly sounds like she is on top of things for Logan.
Do you have the 504 plans for schooling in Canada, that they have in the States? That or something along those lines sounds like it would be really beneficial here. Go to the 'online support and information' page of the site, scroll down to the bottom of the page for a link.
The foot turning in, is a position that is more comfortable in the hip, as it rotates the whole leg into a less painful position. Now that my hip is so painful from the perthes I had as a child, I try these different positions myself to see what difference it makes and that one really does improve the pain levels.
Watch the pain meds, as some of them can cause stomach ulcers and should be given only after food for that reason. Alternatives like massage, heat packs and hot baths can really help there too.
You haven't mentioned how old Logan is?
Donna
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jules
New Member
Posts: 3
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Logan
Oct 10, 2008 23:04:18 GMT -5
Post by jules on Oct 10, 2008 23:04:18 GMT -5
Logan, will be 7 next month. We actually got a call yesterday and we are going to Sick Kids in 12 days. I'm excited and apprenhensive all in the same breath, I just can't wait to get things going down the right path, since I think its taken too long already. I'm looking into taking him swimming and trying to get my insurance company to pay for a membership. Can you give me an idea on certain things for him to work on in the pool? Since Logan was diagnosised I've been doing a lot of research and preparing myself for the worst. The last few nights after school he has been having a lot of refered pain, and gave him some Motrin, the first in a while. As for the 504 plan, I believe we have something simular, and that arragenments must be made to accomodate a child with specific needs. Thank you for replying, I feel lost and confused. I guess just like everyother parent.
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Logan
Oct 11, 2008 1:24:05 GMT -5
Post by Donna Brown on Oct 11, 2008 1:24:05 GMT -5
Hi
Lost and confused is totally understood. You are doing the right thing though, with researching everything and preparing yourself, as that way you can make informed decisions about things, which is empowering in its own way!
Email me directly through perthesnz@yahoo.com.au and I will help with information about exercises to do in the pool, as my daughter has been doing this since diagnosis 7 years ago and we have some great exercises that our physiotherapist has helped with.
I am so glad for you that your appointment isn't that far away. The waiting is excruciatingly painful and not knowing what is happening and what can be done makes the imagination take over, which isn't good!
Donna
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jules
New Member
Posts: 3
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Logan
Nov 1, 2008 8:37:58 GMT -5
Post by jules on Nov 1, 2008 8:37:58 GMT -5
Well, i thought i should update. Logan's appointment at Sick Kids hospital went great!! He had another X-ray and it looks like the head is starting to grow back already. The Dr said that his perthes started a year ago, and it just took a long time for us and the Dr to diagnosis it. So the Dr has still limited his jarring movements and we are to continue physio, and let his body continuing to re-grow the bone with no intervention. So we go back in 3 months for another X-ray.
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guapo
New Member
Posts: 1
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Logan
Dec 5, 2008 21:51:23 GMT -5
Post by guapo on Dec 5, 2008 21:51:23 GMT -5
Julies,
I wish you both the best. Today my 8 1/2 yr old started complaining about his hip hurting. I will take him to the Dr. monday as a precaution. I was the same age when I was told I had it. That is why I already knew what it was all about.
As a side note: I got over it just fine and spent 22 Yr in the United States Air Force and have never had any additional issues. It took about 18 months for it to recover. I just turned 48. He will be fine.
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