Patients and Families
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.
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.
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 contact Sumathi please E mail at email@example.com or feel free to call me at (919) 641-7134.