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Pediatrics Treatment for juvenile patients

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  #1  
Old Tue Apr 11, 2017, 11:20 PM
worriedmama worriedmama is offline
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Medically Complicated Toddler

Hi there,

I've learned so much from this forum! Thank you for all who post and share.

I could use some help with my 3.5 year old daughter. For nearly two years, her hemoglobin has been low, and these days, it stays around 9.6 (RBC 3.48) and her neutrophils range from 1.2 to 1.5. Platelets have held steady and retics too (.8%, .030 absolute). She's has some unexplained low grade fevers and random night sweats. Her bone marrow biopsy when she was 3 showed hypocellular marrow at 70% (9.4% hematogones and normal chromosomes.

In addition to the normocytic/normochromic anemia that we have yet to find a cause for, she's got muscle weakness that also defies an explanation despite genetic testing. We're not sure if the myopathy is related to the anemia or not. Her carnitine was low and she's responded well to treatment, but the geneticist doesn't think that she has a metabolic disorder.

Any thoughts on this? Her hematologist wants to repeat the bone marrow biopsy to see if there have been any changes 8 months later--does this seem like a prudent course of action? I feel so torn about it.

I'm so open to any feedback, especially since our team of specialists is stumped.

THANKS SO MUCH!
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  #2  
Old Wed Apr 12, 2017, 12:40 PM
Bob Macfarlane Bob Macfarlane is offline
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Suggestion

If you have not tried them, you might want to take the little one to MD Anderson.
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  #3  
Old Wed Apr 12, 2017, 01:12 PM
Hopeful Hopeful is offline
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Hi worriedmom,

I am sorry to read about your little one. As Bob has suggested, now is the time to get a second opinion, even if you are at a good center. They may want to repeat the bone marrow biopsy at that initial visit with their own pathologists.

Don't feel bad about subjecting your daughter to another bone marrow biopsy. They only really hurt for about 10 seconds. The information that they provide is invaluable though.

I hope you find answers!
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50 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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Old Wed Apr 12, 2017, 03:19 PM
worriedmama worriedmama is offline
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Thanks for the replies, Bob and Hopeful! We did indeed get a second opinion at Texas Children's. The doctor ran several tests and the telomere study is still pending after a month. The others ruled out anemia of chronic disease which our primary hematologist was thinking. The second opinion doctor was going to review the slides from the first biopsy. I appreciate the encouragement about moving forward as I don't like putting her through the whole ordeal! Given her young age, she has to go under anesthesia for the bone marrow biopsy.
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  #5  
Old Thu Apr 13, 2017, 12:36 AM
triumphe64 triumphe64 is offline
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You might try David Margolis.

I know it is a distance, but I understand he is very willing to talk to you and work with your doctors.

http://doctor.mcw.edu/PhysicianDirec... r%2526gt%253b
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Dallas, Texas - Age 75 - Pure Red Cell Aplasia since March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/

Last edited by triumphe64 : Thu Apr 13, 2017 at 06:57 PM. Reason: spelling correction.
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  #6  
Old Thu Apr 13, 2017, 11:48 AM
worriedmama worriedmama is offline
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Thanks, triumphe64! We're willing to travel and look into all sorts of options.
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  #7  
Old Thu Apr 13, 2017, 08:14 PM
evansmom evansmom is offline
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Before my son, then 9, was diagnosed with AA, he had drenching night sweats and bad dreams. This was even before he started bruising so I'm assuming his platelet count was still adequate. He would also complain of achy leg muscles. It is possible that your daughter is in the earlier stages of AA. While no one would wish this on their worst enemy, it really is a good thing that this has been discovered this early.

A second BMB in a few months would be very worthwhile to see where the cellularity is at.

We are in Ontario and when Evan was diagnosed, I reached out to Dr. Margolis at Milwaukee Children's Hospital via email and he called me without hesitation. He offered his opinions and answered my questions pro bono many times throughout our year-long journey. He is a Pediatric Hematologist/Oncologist specializing in aplastic anemia. I also recommend you be in touch with him.

Best wishes to your little girl.
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Nicole, mom to Evan (19); diagnosed SAA November 2007, hATG mid-November 2007, no response after 6 months, unrelated 9/10 BMT June 2008, no GVH, health completely restored thanks to our beloved donor Bryan from Tennessee.

www.caringbridge.org/visit/evanmacneil
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  #8  
Old Thu Apr 13, 2017, 10:26 PM
worriedmama worriedmama is offline
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Evansmom, thanks for taking the time to share your story. Goodness, we have had many complaints of leg and hip pain that have left doctors confused if it is due to her low muscle tone and hypermobile knees or if it stemming from her anemia. She bruises quite a bit though her platelet count has been ok and her clotting system has checked out normal. I am encouraged to reach out to Dr. Margolis.
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  #9  
Old Sat Apr 15, 2017, 10:29 PM
worriedmama worriedmama is offline
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Just wanted to say thanks again for all of the replies! I had a truly helpful conversation with Dr. Margolis, and I'm so grateful for you all pointing me in his direction. With his suggestions, I'm going to push for a couple of additional lab tests that haven't been run before moving forward with the second bone marrow biopsy. Wishing you all wellness and sending you gratitude.
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  #10  
Old Sun Apr 16, 2017, 09:41 PM
triumphe64 triumphe64 is offline
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Quote:
Originally Posted by worriedmama View Post
Just wanted to say thanks again for all of the replies! I had a truly helpful conversation with Dr. Margolis, and I'm so grateful for you all pointing me in his direction. With his suggestions, I'm going to push for a couple of additional lab tests that haven't been run before moving forward with the second bone marrow biopsy. Wishing you all wellness and sending you gratitude.
I'm glad we have been helpful. That is why Marrowforums exists.
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Dallas, Texas - Age 75 - Pure Red Cell Aplasia since March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #11  
Old Mon Apr 17, 2017, 11:02 PM
worriedmama worriedmama is offline
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While I wish there wasn't a need for this forum, I'm so grateful it is here.

Not to take advantage of the forum, but I have another question. My daughter's granulocyte telomere length came back with no value, though the others were completely normal. While they could've been destructed in transport, is there any information this might yield? (I read through the Talking Telomeres thread, but not sure what to make of this particular scenario).

Edit update: granulocyte telomeres typically don't survive the transport

Thanks again!!!!

Last edited by worriedmama : Fri Apr 21, 2017 at 12:06 AM.
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