Parents Forum

SageMother · 08-30-2007, 09:39 PM

Quote:

Originally Posted by 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...

It is good that everyone is still looking at the problem instead of telling you to "wait and see". Have you managed to get your family doctor to talk with you about those things that "might worry you"? Having that information could be vital while you all go through the tests.

Kaytee · 08-31-2007, 09:28 AM

Well glad to hear that they are taling to you about these things now. Hopefully your sons pain will get easier and easier

jrd · 01-01-2008, 11:57 PM

Wow. I cannot believe it's been 4 months since I've been able to sit at my computer. It has been a long bumpy road since my last post. We still have no answers and are still hopeful that we may find someone somewhere who knows what is going on with our son's legs. The specialist has seen us every month and is baffled. One visit in November was supposed to be a one day trip and lasted 4, as two "spots" showed up on his MRI. The odd thing is that up until this point the pain has been on the right side and these "spots" were on the left. All the tests (bone scan & density; skeletal survey; ultra sound, and tons of blood tests) came back fine. My son is fine and shows no symptoms as long as he sits at home and plays with toys or whatever. Get him doing activities and you can bet your bottom dollar he is in tears and can't walk within an hour. We go back for another MRI in January and they will do a biopsy if these "spots" are still there. We have bought some child size excercise equipment and he uses it for 10 minutes everyday (that's all he can tolerate), we have bought him a new, very expensive mattress, we have modified his diet, do massage therapy... Is there anyone yet out there that knows what we are going through and has any suggestions????

ljmahr · 01-02-2008, 08:00 PM

I am very sorry you have to go through this. My 16 month old daughter has hip dysplasia (dislocated hip). She is having surgery Jan. 17th to correct this. After I found out I started researching it. I have found a forum on yahoo groups that is really awesome. In this forum I have actually heard people talking about perthes, I don't know if they said dysplasia is linked to this or what. You might want to do a search on yahoo groups and see if they have a perthes group. If they are anything like the hip dysplasia groupd it will help you very MUCH!! It is so nice to find someone who knows what you are going through.

ljmahr · 01-02-2008, 08:02 PM

Oh I just checked on yahoo groups and there are lots of perthes groups. Try joining one of those. Good luck!

jrd · 01-05-2008, 09:29 PM

Thank you for the tip. I will definitely check it out. I just wish we knew if it really was perthes. When we were up for tests in November we were so scared it was cancer because of the spots on the MRI. But all his other tests were good

It's just stressful not knowing. Sometimes I wish they'd tell us what was wrong even if it's real bad, then at least we would know what we were dealing with.

I sympathize with your family and what your babe is going through. It is rough, but have faith and know that many are praying for you and your little one.

novembermommy · 02-04-2008, 05:45 PM

I just wanted to let you know that my heart goes out to your little boy... Praying that he gets better real fast....

evilbrent · 02-04-2008, 07:01 PM

Quote:

Originally Posted by Kaytee

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.

gah!!!

musicmom · 02-04-2008, 07:47 PM

Just with what you have written I would get a second opinion. A ped should not be given a diagnoses that a specialist should be giving. This is the reason why, because you do not terrify a parent for possibly no reason.
There is no exact time line on a virus either. Some virus' can be VERY scary. Just for instance, my teenage neice has rectal bleeding with pus and it is also just a virus.
I would keep your son praying and I would still go buy hockey stuff. There is nothing wrong with light practicing. He's only five. He would understand he has to have light practicing first for a few months that should buy you some time.
If you do not want to get him on ice then do yard hockey or play on a tennis court.
Encourage him to talk to God and even sometimes God does things that we do not understand and maybe when he grows up he can teach someone else what happend to him. Tell him he could be someone's hero.
I say give him all the hope in the world. A child's will is strong, feed it.
You and your son will be in my prayers. Please let us know what you find out.

Parents Forum

Parenting Community

Pregnancy Forums

Parenting Resources