Child with AIHA

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Our daughter was diagnosed at 2 months with AIHA.  Her hemoglobin was 62.  She recieved 3 blood transfusions at that point and was placed on steriods.  We were unable to taper her completely off of them for 10 months.  At 14 months of age she had a reoccurance.  At that point her hemoglobin went from 110 to 52 in 3 days, she received 11 transfusions and was placed on 80mg of prednisone per day.  They rapidly tappered her off the drugs after 6 weeks.  From the start of the taper until it was completed was 12 weeks.  

Thankfully she has been in full remission since then with no lasting side effects.

We also struggled getting O positive blood for her.  Twice it was brought out of Eastern Canada and once out the USA.  She also struggled with keeping IV lines or even getting them in.  I remember one day it took 9 IV lines to finally get one that worked.  The hospital was wonderful but that was a horrible day.  

We also struggled with local care & information on AIHA.  We travelled 2 hours from home every few day for months.  Received the transfusions and then travelled back home another 2 hours.  Often after sitting in a hospital for 12 or 14 hours.  It was truly exhausting.  One 3 occasions she was kept in hospital for between 2 to 5 days.  There was always bags packed in the car because we never had warning when we would be off to the children's hospital.  

She had issues gaining weight and remain very tinny for nearly 2 years.  At 12 months only she weighed just 12 pounds (she was a low birth weight baby to start with).  

However once she started to grow, it was crazy.  Today she is a complety normal 7 year old child.  She is of average height and weight, athletic and smart.  We couldn't have asked for a happier outcome to a rough start.