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Pediatrics Treatment for juvenile patients

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  #1  
Old Thu Jul 25, 2013, 11:28 PM
SAA Mom SAA Mom is offline
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2nd Opinion

My 20 year old son was recently diagnosed with SAA per Barnes Hospital. He has had 4 ATG treatments and is now on Cyclosporine and Prednisone. We are thinking about getting a second opinion on his treatment. How do I find the best facility to take my son to for a 2nd opinion?
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Old Fri Jul 26, 2013, 12:32 AM
Neil Cuadra Neil Cuadra is offline
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SAA Mom,

For children and adolescents you can't do better than Dr. David A. Margolis at the Children's Hospital of Wisconsin.

For adult practitioners, there are quite a few midwest centers with SAA expertise. The Marrowforums Treatment Center Map lists many well-known and respected centers that have bone marrow failure experts, many in the Chicago area and others in neighboring states. Click "Illinois" to zoom in on your area.
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Old Fri Jul 26, 2013, 09:31 AM
sstewart09 sstewart09 is offline
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Loyola

We are in a suburb of Chicago and my husband was treated at Loyola. I would definitely recommend this hospital and our doctor, Dr. Go.
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Samantha, wife of Joe age 34; diagnosed vsaa 2012; MUD BMT February 2013
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Old Tue Jul 30, 2013, 09:45 PM
SAA Mom SAA Mom is offline
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I have heard from local doctors that University of Chicago and Northwestern are good options. Anybody know anything about these 2 treatment facilities?
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Old Wed Jul 31, 2013, 07:39 AM
edithr edithr is offline
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Quote:
Originally Posted by Neil Cuadra View Post
The Marrowforums Treatment Center Map lists many well-known and respected centers that have bone marrow failure experts,
Sorry to hijack the thread. Can you tell me more about this map? When was it last updated, and who published it? Neither place my son was at is on it, yet both have (at least I thought they had) excellent reputations.

And SAA Mom - I used US News & World Report for rankings.

Thank you!
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Edith, mom to Eric, dx 2/11 at age 15 with SAA, began ATG/CsA 3/11, switched to Tacrolimis 8/11, off all meds 9/11 and is now considered to have bone marrow failure not otherwise specified.
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Old Wed Jul 31, 2013, 03:36 PM
Neil Cuadra Neil Cuadra is offline
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Originally Posted by edithr View Post
Can you tell me more about this map? When was it last updated, and who published it?
We who run Marrowforums maintain the Treatment Center Map ourselves, based on Comprehensive Cancer Centers identified by the National Cancer Institute and MDS Centers of Excellence identified by the MDS Foundation. We update it at least annually and it's due for another update. It doesn't cover all bone marrow treatment centers in the U.S., even all those of good quality, since we don't know a way to identify all of them.

The US News & World Report hospital rankings are useful too, although they focus on overall quality and broad disease areas like "childhood cancer", not specifically on bone marrow failure diseases.

I hope both resources are useful and that parents evaluate treatment centers by visiting them or checking their doctors' experience and specialities too. For example, being designated an "MDS Center of Excellence" doesn't indicate aplastic anemia and PNH experience. You need to dig deeper to learn which center is best for your family, and balance what you learn against the disadvantages of going to a distant hospital.
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Old Wed Jul 31, 2013, 05:33 PM
sstewart09 sstewart09 is offline
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Facebook

If you are on Facebook, there are numerous aplastic anemia groups that you can ask about personal experiences at treatment centers as well. I know at least 2 people have mentioned University of Chicago. Aplastic Anemia: Your Fight is my Fight, Aplastic Anemia Awareness and Band of Mothers in the Fight Against Aplastic Anemia are a few of the groups.
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Samantha, wife of Joe age 34; diagnosed vsaa 2012; MUD BMT February 2013
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Old Thu Aug 1, 2013, 07:36 AM
edithr edithr is offline
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I have time to elaborate on my answer.

It is my understanding that most doctors use the team approach, so if you go to Childrens Hospital of Philadelphia and see Dr. X, Dr. X will consult with the rest of the doctors on staff about your case. This is especially true in pediatrics- the community of doctors is so small they all know each other locally. So I wasn't particularly focused on finding a certain doctor as I was a hospital.

I see your son is 20. Does that put him in between adult & peds? Can you go either way? What way are you leaning?

There came a time when Eric's doctors suggested we get another opinion, they recommended either Cincinnati Childrens Hospital Bone Marrow Failure Clinic or Childrens Hospital of Philadelphia. At the time, US News ranked CHOP #1 and Cinci #2. Because Cinci was closer we went there. Now I see they're ranked #1. I don't think it matters past the top 10, I help compile the statistics where I work (a college) and I see how our rankings change yearly based on things I don't think should matter. Also, the definition of statistics is lying with numbers.

Childrens Hospitals rankings are here: http://health.usnews.com/best-hospit...atric-rankings. I looked at the Cancer rankings because it's the disease that most closely resembles AA.

I hope this helps you.
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Edith, mom to Eric, dx 2/11 at age 15 with SAA, began ATG/CsA 3/11, switched to Tacrolimis 8/11, off all meds 9/11 and is now considered to have bone marrow failure not otherwise specified.
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  #9  
Old Tue Aug 6, 2013, 07:40 PM
SAA Mom SAA Mom is offline
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Our son is in the adult category.
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