Forums
New posts
Search forums
What's new
New posts
New profile posts
Latest activity
Internet Search
Members
Current visitors
New profile posts
Search profile posts
Log in
Register
What's new
Search
Search
Search titles only
By:
New posts
Search forums
Menu
Log in
Register
Install the app
Install
Forums
General Discussions
The Watercooler
Worried ...
JavaScript is disabled. For a better experience, please enable JavaScript in your browser before proceeding.
You are using an out of date browser. It may not display this or other websites correctly.
You should upgrade or use an
alternative browser
.
Reply to thread
Message
<blockquote data-quote="seriously" data-source="post: 443575" data-attributes="member: 11920"><p>I am sorry your daughter has developed this condition. It is very hard to live with uncertainty about serious physical health problems. Been there - doing that.</p><p></p><p>I did a little research since I am not familiar with this specific condition. It looks to me like the ortho and other docs are being honest with you. They really can't tell you anything more than what they have already said. There are very few cases, not enough for anything more than case studies or reports of 10 -14 children's treatment and results.</p><p></p><p>In terms of the medical aspects of diagnosis and treatment, you might ask if the following things have been ruled out:</p><p></p><p>juvenile arthritis</p><p>seronegative spondlyoarthropy</p><p>arthro-opthamopathy (Stickler's syndrome)</p><p></p><p>Ruling these out may require referrals to other specialists like a rheumatologist.</p><p></p><p>There is one very recent case study report from 2009 that reported excellent results from daily use of Entaneracept. Here's a link to the article.</p><p></p><p><a href="http://www.healio.com/orthopedics/infection/journals/ortho/2009-3-32-3/%7B76b4d251-551d-4f14-8555-b4a3e000e651%7D/idiopathic-chondrolysis-treated-with-etanercept" target="_blank">http://www.healio.com/orthopedics/infection/journals/ortho/2009-3-32-3/{76b4d251-551d-4f14-8555-b4a3e000e651}/idiopathic-chondrolysis-treated-with-etanercept</a></p><p><a href="http://www.orthosupersite.com/view.aspx?rid=37214" target="_blank"></a></p><p><a href="http://www.orthosupersite.com/view.aspx?rid=37214" target="_blank">E</a>ntaneracept (Enbrel) is a powerful immune-suppressant normally used to treat rheumatoid arthritis. In this particular case study it was administered by daily injection. I would be surprised if your insurance covered it without an RA or spondlyarthorpy diagnosis and the normal dosing for these diseases would be once a week (rather than daily as reported in this case study).</p><p></p><p>It costs in the neighborhood of $400/shot.</p><p></p><p>There are no clinical trials for this disorder listed in clinicaltrials.gov but you could ask the doctors about any research studies. You could also contact the company that sells Entaneracept about any treatment protocols they know about for idiopathic chondrolysis and patient assistance programs for Enbrel</p><p></p><p>As for the emotional issues of dealing with this -- My best advice is for you to hold firm to the idea that all will be well and treat her as if the physical treatment and limitations she is experiencing now will work and she will be fine.</p><p></p><p>More information is not going to give you the reassurance you are seeking. Focus in the present moment and try to find things to be grateful for (like that there is a treatment) and not give in to the anxiety.</p><p></p><p>Finding a therapist to talk to is also a good idea in my experience.</p><p></p><p>Hugs</p></blockquote><p></p>
[QUOTE="seriously, post: 443575, member: 11920"] I am sorry your daughter has developed this condition. It is very hard to live with uncertainty about serious physical health problems. Been there - doing that. I did a little research since I am not familiar with this specific condition. It looks to me like the ortho and other docs are being honest with you. They really can't tell you anything more than what they have already said. There are very few cases, not enough for anything more than case studies or reports of 10 -14 children's treatment and results. In terms of the medical aspects of diagnosis and treatment, you might ask if the following things have been ruled out: juvenile arthritis seronegative spondlyoarthropy arthro-opthamopathy (Stickler's syndrome) Ruling these out may require referrals to other specialists like a rheumatologist. There is one very recent case study report from 2009 that reported excellent results from daily use of Entaneracept. Here's a link to the article. [URL]http://www.healio.com/orthopedics/infection/journals/ortho/2009-3-32-3/%7B76b4d251-551d-4f14-8555-b4a3e000e651%7D/idiopathic-chondrolysis-treated-with-etanercept[/URL] [URL='http://www.orthosupersite.com/view.aspx?rid=37214'] E[/URL]ntaneracept (Enbrel) is a powerful immune-suppressant normally used to treat rheumatoid arthritis. In this particular case study it was administered by daily injection. I would be surprised if your insurance covered it without an RA or spondlyarthorpy diagnosis and the normal dosing for these diseases would be once a week (rather than daily as reported in this case study). It costs in the neighborhood of $400/shot. There are no clinical trials for this disorder listed in clinicaltrials.gov but you could ask the doctors about any research studies. You could also contact the company that sells Entaneracept about any treatment protocols they know about for idiopathic chondrolysis and patient assistance programs for Enbrel As for the emotional issues of dealing with this -- My best advice is for you to hold firm to the idea that all will be well and treat her as if the physical treatment and limitations she is experiencing now will work and she will be fine. More information is not going to give you the reassurance you are seeking. Focus in the present moment and try to find things to be grateful for (like that there is a treatment) and not give in to the anxiety. Finding a therapist to talk to is also a good idea in my experience. Hugs [/QUOTE]
Insert quotes…
Verification
Post reply
Forums
General Discussions
The Watercooler
Worried ...
Top