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[floridagirl]

Hi everyone:
My name is Linda and a friend of mine's 10 year old daughter has recently been dxed with PNH or Aplastic Anemia (Dr.'s are not sure and from what I have read, they go hand and hand with treatment).
My question is for pediatrics, who seems to be the best in this field?
I have read alot about Dr. Neil Young at NIH, Dr. Robert Brodsky at Johns Hopkins and Dr. Ware at St Judes.
Dr Brodsky has a very interesting view on the use of cytoxan.
Can anyone share your opinion with us?

Thank you in advance and my heart goes out to each and every one of you because in the short time I have learned about this disease, it seems to be extremely rare and research is just now getting to be helpful (such as Soliris).

Any thought and stories would be helpful!
Best wishes and thank you,
Linda

[Ruth Cuadra]

Hi, Linda.

Welcome to Marrowforums. If you haven't already done so, you or your friend should contact the Aplastic Anemia & MDS International Foundation and ask for their information packets on aplastic anemia and PNH. You can also consult our Medical Resources page for links to various organizations such as the PNH Research and Support Foundation, PNHSource, the PNH Support Group, as well as treatment centers around the U.S.

The doctors you've mentioned are all well-known and very respected as is Dr. David Margolis at Children's Hospital of Wisconsin. The starting point for your friend may be to find a center locally--either in a major medical center or university-related hospital--with experience in treating aplastic anemia and/or PNH. Although there are similarities in the treatments for these diseases, it is important to be sure of the diagnosis so the full range of treatment options can be explored. Sometimes it is necessary to get second and third opinions about the diagnosis before you have a clear enough picture to decide on a course of action.

Where is your friend located? I'm sure others on the list will recommend other pediatric specialists if they can.

Regards,
Ruth Cuadra

[floridagirl]

Thank you for your reply Ruth,
We have contacted AA foundation and so far we have been given names of PEDS/ONC but none seem to know alot about AA. I did talk to Dr. Brodsky's office and he only takes adult patients which really disappointed me. He seems so interested in AA and PNH.
I have called Dr. Neil Young's office and I am waiting to here back from him.
We are also waiting on St. Judes.

Thanks for your help Ruth and I wish you well,
Linda

[Marlene]

Linda,

Dr. Brodsky's office should have referred you to the pediatric doc at Hopkins that handles the AA cases for kids. I think it's Dr. Chen but not sure. Also, I know that Dr. Brodsky does get involved in these cases, but not as the primary doctor. Dr. Brodsky will consult with any doctor regarding the treatments so maybe your local hemo would call him.

If you go to Aplastic Central site and select the patient forum at the top, you can search on for a post by Mike, who's daughter was treated at Hopkins. You can also read the many post by others with children who have AA.

The link is: http://www.aplasticcentral.com/

Marlene

[Wendy Beltrami]

Hi Linda-
I would highly recommend that you contact Dr. Jarek Maciejewski at Cleveland Clinic. Although he is not pediatric, he has ample experience with AA and PNH. He is acting as our consulting doc and we think he is great.
His associate Greg Plautz is the pediatric guy who is also great. Maybe starting with Plautz would be your best bet.

Maciejewski: (216)445-5962
Plautz: (216)444-5517



Wendy/mom to Grant age 15 1/2
dx aa 12/4/98

[Sherri]

My daughter was 5 when she was initially diagnosed (2 years ago yesterday). She has/had both AA and PNH. She sees Dr. Maciejewski and Dr. Plautz at the Clinic. They are up-to-date and I believe truly they helped to save her life! Please feel free to visit her web-site:

www.caringbridge.org/visit/annalysekitzberger

There are VERY few docs - even AA Docs- who have any experience at all w/PNH. If it is even suspected you should see an expert. Of course, that is my opinion. We live in Cleveland so it was a gift to have Dr. Maciejewski 10 minutes away. Although when it came time to consult for a BMT , we drove to Wisconsin to see Dr. Margolis. As much experience as Dr. Maciejewski has- he wanted a second opinion (all Docs felt a BMT was not necessary) as even he has limited experience with children with PNH.

[skoopman]

I want to second the high opinion of Dr. Margolis. I live in CA but decided to go to Wisconsin in order to have him be the dr for my daughter's BMT. I feel it was the right decision for us as he is a wonderful dr, honest and caring of the kids he works with.

Let me know if you have any questions.
Suzanne