I am a mother of a young boy who over the past 2 years has been tested for multiple diseases but are still without a diagnosis. He has recently had a bone marrow biopsy that showed he is hypocellular (30 - 40%) with hematology panels that change from normal to low with no apparent reason. The Dr's cannot exclude a bone marrow disease but cannot confirm at this point either. We have seen orthopedics, rheumatologists, biochemical & metabolic clinics, pedatricians and many more I am sure I have forgotten along the way.
My son is about to turn 5 in 2.5 months and has not gained any weight in over 2 years, has major bone pain, is always exhausted (we had to take him out of morning preschool as he cannot get up to attend & teacher states his energy levels do not come close to other children his age) with weeks where he is only awake for 5 hours a day, very pale, low wbc, high esr, strange rashes that are not fungal, bacterial, viral, eczema, psorriasis. Severe headaches, black bags under his eyes, swollen eye lids, photosensitivity, seems to react poorly to sun, poor appetite (spells - not always, sometimes he does eat like a horse and boy do I smile), barely ever does he sleep throught the night - awakened from pain in his knees, back and feet.
I have become increasingly worried (justified at this point - I think..) and it is affecting everyone in our family. The endless dr appointments, the lovely people who look at him and see a normal boy, and the financial strain. I know I am among others I am sure who have been so very frustrated with the lack of answers and sometimes with the lack of care and am hoping that by joining this forum I may find some support from others who have been through similar situations.
So I guess I should say Hello everyone!
Shawna
There is so much more to add but it will have to be later...off to build a model truck with my littlest
