Testing Siblings
Our daughter, Devon was diagnosed with aHUS just about a year ago and is doing amazing! I asked her Hematologist about testing our 8 year old son and she said it is best to have his pediatrician keep an eye on him at his well check visits. Our pediatrician thinks we should test him for aHUS. Has anyone had their other children tested?
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Comment by Keila Wiggins on February 21, 2013 at 7:45pm -
Our 11 month old daughter Isla, was diagnosed 4 months ago when she was 7mo old. We also have a 5 year old daughter. We have asked Isla's Pediatric Neph. about testing Nora (our 5 yr old) but he said without knowing which gene in Isla is causing her aHUS it would be almost impossible to test Nora. His suggestion was to keep yearly check ups with the Pediatrician. Isla has had 3 genetics tests so far but nothing has come back with any answers yet.
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Comment by debbie thelwell on February 21, 2013 at 11:15am -
Hi we decided to have testing as my son didn't present until he was 9 and two year later we learnt that adults could get it having gone to the first Ahus conference in England(. we had been led to believe it was just children.) My daughter who is 8 and my husband are both clear I have the same gene MCP as my son. I didn't come as a surprise as I was seriously ill in my 20 with asthma which has always been difficult to treat, I does make me wonder wether this is complement activity. I don't regret having the testing I'm so grateful my daughter is clear and feel a great weight lifted from that. I think it's a very personal thing that only you can decide, be prepared for the emotion side of what the effects of the results could be. Good luck
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Comment by NATALIE WALLACE on February 17, 2013 at 2:36pm -
So, our 4 yr. old son, Zachary passed away form aHUS 9 years ago. Devastating us all.
Our daughter Olivia(10) and Leah(4) were both tested. Our son Ben, age 7 has aHUS, still undiagnosed factor. If we would have tested Ben when he was born, he would probably not be blind. Even though it is scary, bette to know. God Bless you in your tough decision and all the tough decisions we go through with this disease. However, they are older, the chances are highly unlikely they have it.
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Comment by Cheryl Biermann on February 17, 2013 at 9:52am -
We did not test the older boys, 24, 21,21,15. We did test both our girls, one because she's so much younger than Nathan and the other who is 17 because the girls may have trouble during pregnancy because of the pregnancy induced aHUS. The boys never had a single symptom and are all older also.
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Comment by Jessica Rios on February 17, 2013 at 2:51am -
Hi Diane,
My sister was also diagnosed with aHUS. Her specialist recommended my other sister and I to get genetic testing. It's a very personal decision. We are older -24 and 21, but we decided better safe than sorry. You should speak to a genetic counselor, and ask for their recommendation.
I'm glad Devon is doing great! It's always good to hear positive news!!
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