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Pediatrics Treatment for juvenile patients

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  #1  
Old Thu Aug 7, 2014, 10:13 AM
Sali1 Sali1 is offline
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4 siblings, will they find a match for my daughter?

Hello, i am very worried about my 2yr old girl. She will potentially need a bmt for her autoimmune condition. Her four siblings are having bloods done tomorrow to check if they are a match. I am very scared that they might not match.

Please let me know about your donor matches, thank you.
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  #2  
Old Thu Aug 7, 2014, 11:41 AM
Whizbang Whizbang is offline
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I think that translates to around a 75% chance of a match, I have 5 siblings, and my youngest brother was a 100% / 10/10 match...

It is very possible that your daughter will have multiple matches, so I would not lose hope yet, the more siblings the better the chance...

All the Best, and May God Bless!!!
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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  #3  
Old Thu Aug 7, 2014, 11:51 AM
Sali1 Sali1 is offline
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Thank you for the support.

I pray that it is true for us also.
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  #4  
Old Thu Aug 7, 2014, 02:40 PM
Fana Fana is offline
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My son has two sisters only the older sister was tested and she was a full match thank god..
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Fana,mother of asad age 8 diagnosed SAA 2014, trying to decide between ATG or BMT..decided on BMT and finally did it
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  #5  
Old Thu Aug 7, 2014, 06:01 PM
Sali1 Sali1 is offline
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Thank you for the support. We will get bloods done tomorrow. I don't know how long it will take to get the results. We are in london. My daughter is treated in great ormond street hospital.

I will update you when i have the results.

Please keep us in your prayers.
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  #6  
Old Fri Aug 8, 2014, 12:03 AM
Neil Cuadra Neil Cuadra is offline
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With 4 siblings there is a 68.4% chance of a match.

If your daughter has a sibling match, that's great news. If she doesn't, a search in the British Bone Marrow Registry, the international registries, and cord blood registries may turn up an equally good match.
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  #7  
Old Fri Aug 8, 2014, 07:22 AM
SLB SLB is offline
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I have three siblings and none of them matched for me. But then neither did anyone on the worldwide registry!! However, 17 months after a SCT with an 8/10 match life is good. Good luck and I hope it's only a short wait until you hear!
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Sharnie, 37yo, dx Mar 2012 RAEB II 13% blasts. 8 months of Vidaza. Transformed to AML in Nov 2012, induction chemo, no remission. 2nd lot of chemo, remission achieved. SCT with 8/10 match, Mar 2013.
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  #8  
Old Fri Aug 8, 2014, 12:03 PM
Sali1 Sali1 is offline
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Hi, just had bloods done. Also we have had a diagnosis for her condition. She has a rare genetic mutation. The condition is known as LRDA. And bmt is very promising for it. Doctors are in favour of going ahead with bmt if they find a 10/10 or a 9/10 match for it.
We will have bld results in approx 3weeks.
I will update everyone with results.

Thank you
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  #9  
Old Wed Sep 10, 2014, 08:43 AM
Sali1 Sali1 is offline
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Hello everyone, one match has been found from the family it is my youngest daughter. We are waiting for things to start rolling. I will update when i have any more news. Thank you for everyones help.
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  #10  
Old Wed Sep 10, 2014, 02:26 PM
Neil Cuadra Neil Cuadra is offline
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Sali1,

I'm sure it was very hard for you to wait for the results. Now we have them, and congratulations on the match! Your youngest daughter doesn't know it but she's going to be a hero.

The doctors will probably move quickly now to arrange the transplant. Kids are very resilient, both by nature and medically speaking, so you have many reasons to feel positive about the upcoming transplant procedure. But transplants are never easy, the logistics are tough for a young family, and you'll need to be there to support all of your children.

I've never heard of LRDA. What does it stand for? Is a successful transplant considered to be a cure?
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  #11  
Old Wed Sep 10, 2014, 05:49 PM
Sali1 Sali1 is offline
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Lipopolysaccharide-Responsive Beige-like Anchor (LRBA), a Novel Regulator of Human Immune Disorders

It is a rare disease. There is not much research on it, but what they do have suggests that bmt is a good cure.

Please keep us in your prayers. Thank you
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  #12  
Old Thu Sep 11, 2014, 01:13 PM
Fana Fana is offline
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Hi sali

congratulations on finding a match in the family I know how relived you must be. My son did the BMT on the 1st of September his sister was the doner...still waiting for the counts to come..hope it will be a easy journey for you..
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Fana,mother of asad age 8 diagnosed SAA 2014, trying to decide between ATG or BMT..decided on BMT and finally did it
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  #13  
Old Thu Sep 11, 2014, 07:52 PM
Sali1 Sali1 is offline
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Fana,

Which country are you in? Did your son have chemo to prepare for bmt?
Thank you
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  #14  
Old Sat Sep 13, 2014, 11:26 AM
Fana Fana is offline
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Hi sali...yes he was give a low dose of chemo 4 days of fludarabine which he tolerated well and 2 days of cyclophosphamide which was bit tough on him.hope this helps
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Fana,mother of asad age 8 diagnosed SAA 2014, trying to decide between ATG or BMT..decided on BMT and finally did it
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  #15  
Old Sat Sep 13, 2014, 03:12 PM
Whizbang Whizbang is offline
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Sali1,

Congratulations on your youngest daughter being a match... It must have been a joyous day on finding out... Not any of this is happy stuff but as victories start piling up, it is really important to celebrate them...

All the Best, and may God Bless us all.
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Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10 ; 5.5% blasts down to 3%, now 1% (post BMT)
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