jrd

Since my son was able to walk, he has been running around with a hockey stick and puck. Frequently, he would take a break with a soccer ball or baseball bat - maybe a golf club or football. Sports has always been his entertainment, his joy, the love of his life. Two weeks ago, he awoke crying and unable to walk. As the day progressed, he was able to limp around and was no longer crying of pain. We took him into the doctors, and blood work and xrays showed nothing. As the days past, so did the limping and we figured it was a pulled muscle that had healed. Two days ago, we started all over. He awoke unable to walk and screaming in pain. This time we took him into emerg immediately. Xrays and blood work look fine to the average family doctor. But, she forwarded them on to an orthopaedic surgeon and sent us out of town to see him. Hours later, this doc comes in and exams our almost 5 year old son. He leaves, makes a phone call to the Alberta Children's Hospital, and returns with a diagnosis (after reviewing his xrays of course). Our very athletic boy has Legg Perthes Disease. "What is it" The doctor was reluctant to give us too much information in fear that it would make us worry more than necessary. We go for an MRI this coming week, and possibly following that for further tests at the AB Children's Hospital. Then, if necessary, for treatment. Well, being impatient as I am, I don't want to wait for the information. I want it now. Like what determines whether or not he will have to go for treatment? Does anyone out there know much about this? Has anyone had a child go through this? I have looked and looked online for specific LP Disease forums and have been unsuccesful. Please if anyone knows anything, let me know.
Further to this, any suggestions on mending my son's heart. All summer, he has been looking forward to the day we get to go buy his hockey equipment, as he is old enough this fall to join Minor Hockey. The doctor said absolutely no sports and very limited activity for 1 - 2 years. My son has been (knowledgeably) waiting since he was 2 to join ice hockey. When he learned that he will not be able to play this year, his heart broke. He is stuck in a depression, he has taken a serious turnaround in his behaviour, and he insists on sleeping with his hockey stick. He thinks by doing this then God will answer his prayers. How do you tell your child that this prayer won't be answered for a couple years? And how do you bring him out of depression?

Kaytee

First I am so sorry your little boy and you ar going through this, I will pray that answers come quickly.
I don't know much about this disorder either, actually nothing, but you may want to check out
http://www.nonf.org/perthesbrochure/...s-brochure.htm

Also if you go to ivilliage, they have forums that are soley for children with bone issues. I beleive justmommies also has a similar forum. They may not have the exact disease that your son has but they may have simialr and lead you to the right places

About your son and praying to God, tell your son that God loves him and does not want him to be in pain, also that God cannot cure him but He can give him strength to get through this.

__________________

If you can't stand behind our troops, feel free to stand in front of them!
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SageMother

I am so very sorry to hear of your son's crises.

I understand a doctor's reluctance to say too much, but in your shoes, I would demand the information. If you need to be prepared for more, you also need to be armed with options and ways to help your son cope.

I don't know of any online resources but I am sure there are some out there. In the mean time, why not rattle the doctor's cage a little and get full disclosure?

tater03

I am so sorry to hear what your son and your whole family is going through at the moment. I don't know anything about this disease but have you checked your local library to see if there are any books on this disease.
I hope you get some answers soon. I know not knowing anything can be frustrating.

fallon

I'm so sorry for you and your family to have to go through this. I will keep you and your boy in my thoughts and I hope you find the answers you're looking for

jrd

Thanks everyone for your thoughts and well wishes. Only 1 day left until our MRI and then hopefully many of our questions will be answered. Perhaps once we know exactly what we are dealing with, we'll be able to get our "out of control" boy back to his normal self.

fallon

I will be thinking about you and your family, not having the answers is sometimes worse then having them. I remember when my daughter was 1 they did a CBC at her one yr check, the Dr called a few days late and said her white blood cell count was very low and we would have to come in for more testing. She called on a Friday so all weekend the very worst thoughts were running though my head. It was the most awful feeling. I'm glad you're going to get your answers, let us know how it goes

Kaytee

I also wil be thinking about your son. Hope it all works fo rhte best!!

__________________

If you can't stand behind our troops, feel free to stand in front of them!
http://www.spcnicholasidalski.com

jrd

Just an update on what's happening here (as requested). My son's MRI looked good. The orh/ped surgeon said there seems to be blood flowing to the hip so he "does not actually have legg perthes". He said he has fluid on the hip which lasts 2-3 days. Well it's been over 3 weeks. He said it was caused by a virus but for some reason it not showing up in the blood work. So I went back to our family doctor who sees us again tomorrow and is sending a referral to the Alberta Childrens Hospital to see a Pediatric specialist in this field. Our family doctor said he did some research on legg perthes and said in the early phases it will not show up in xrays or and MRI, so he is not convinced yet that it is not legg perthes. As for pain, it's not bad, only when he over exerts himself. He limps if he plays hockey for even 5 minutes. That's it for my update for now...

fallon

I'm sorry you weren't able to get any clear answers. I'll continue to pray for you