Amalan, our 13 year old has mild WAS(XLT) and he has not had a BMT or a splenectomy. He has mild eczema and runs the usual range of childhood illnesses and is able to handle them well. He attends regular school, is a well adjusted and happy young man. He has a great group of friends who have been supportive over the years. He will be starting High School in August 2012.
Amalan was jaundiced soon after birth and labs were done to check the bilirubin levels. Well....surprise! The platelets were at 58,000. It subsequently rose to 120,000 by 6 weeks. He was diagnosed as having alloimmune thrombocytopenia at that time and we were quite relieved. Things were fine until we noticed unusual bleeding around 5-6 months of age and his counts were 70,000. Since then he underwent numerous tests including a bone marrow biopsy. He was eventually diagnosed as having WAS around 11 months of age.
Amalan had allergic colitis (bleeding in his stool, about 15-20 stools/day and cramping pain) from 14 days of age and was allergic to any and every grain(except rice), to all infant formulas (including the formulas such as alimentum), milk, egg. By 2 months of age this stopped as we eventually figured out all is allergies and resolved it with my being on a highly restricted diet.
This continued on with us intermittently trying out new foods through my eating them. He would bleed right away. It was quite scary as we did not know how we were ever going to raise a child who we could not feed. We had no diagnosis at that time. By 10 months he was finally able to tolerate rice cereal :)) What a relief it was. Since then, he has improved steadily and overcame all his allergies one by one. He is currently allergic to eggs and gets a colitis if he is exposed. He is also allergic to several chemicals which can exacerbate his eczema. He had 2 subsequent bouts of allergic colitis at age 3 and 6, when he was exposed to an allergen and had to be on a very restricted diet for 6 months. That was very hard to go through. Thankfully he has been fine since then.
Amalan's platelets usually run from 12,000 - 25,000. His platelets dropped to 2,000 once, requiring a transfusion. He has many bruises and petechiae and gets occasional nose bleeds. We have used amicar to help control these bleeds on rare occasions and found it really helpful. He has been restricted from many sport activities, particularly contact sports. This has not been easy for him or for the family. However, he has dealt with it well, engrossing himself in Scrabble and Science related activities and won the Capitol Cup in National School Scrabble. He enjoys swimming with his buddies, shooting hoops and jogging. Amalan continues to play and enjoy competitive scrabble. On August 15, 2012, Amalan just won the championship at the National Scrabble Championship for Division D in Orlando, Florida with a 22-9 record playing 31 games over 5 days.
Making the decision to not transplant Amalan was one of the most difficult decisions that we ever had to make. After years of thought and consulting with some of the leading experts in WAS we decided that it was not the right things for Amalan. In a nutshell, we were told that bmt for a child like Amalan with low platelets and a normal immune system was not recommended and the only time that we should even consider it is if there was a perfect sib match (and we did not have a match).
Life with WAS has not been easy and we have been fortunate to have a great family, wonderful friends who have supported us. Since 2009, when the support group was created, we have been fortunate to be part of a large network of WAS families and it has been great to have their support and love extended to us.
To contact Sumathi please E mail at firstname.lastname@example.org or feel free to call me at (919) 641-7134.