Starting from the beginning so this may be a little lengthy, sorry in advance.
Starting end of December/early January, I noticed my 5 year old son becoming very tired, face being pale, not eating much, and complaining about lots of pains in his legs.
He's not much of a napper and he was coming home from school, going straight to bed, and not waking up until the next morning. I brought it up to his Dr. and she said he was probably just tired from school and the pains are just growing pains.
On February 11th, he cried that morning that he was too tired to wake up for school and his legs were hurting. I gave him some tylenol and he went anyways.
He came home and slept, didn't want to eat, but I made him wake up and take a quick shower before he went back to bed. As he was drying off I noticed petechiae and bruises all over his body.
He was exhausted so I let him go back to sleep and I took him straight to the Dr. in the morning.
They did his blood work and his platelets were at 6.
He was admitted into Rady's Childrens hospital. They told us since only his platelets were the only thing that was wrong he had ITP and they would start the treatment. They did 2 IVIG treatments and they didn't work. In fact, his platelets dropped down to 2. They started him on prednisone and 3 days later they went up to 30 and he was released.
The next week we went back to talk to the hematologist and his platelets went back down to 15. She suggested we do a bone marrow biopsy.
So we scheduled it that next week, got the results back that he had abnormalities and what she was seeing was completely opposite of what she would see in ITP.
She mentioned that it looks like MDS through the pathology report but wanted to wait until she got the genetic report back.
A week later it came in, and he didn't have any chromosome or genetic marker for MDS so she said he doesn't fit the criteria.
She suggested we wean him off the steroids since they aren't working and she wanted to see what his body will do without them and wanted to schedule another bone marrow when his body is clear of the steroids.
So we waited, he had 1-2 blood tests a week for the past 9 weeks, and 2 transfusions. His levels jump anywhere from 5 to 50. He even jumped all the way to 150 at one point and the next week was back down to 30.
After waiting the 9 weeks, we finally had the 2nd bone marrow biopsy done on Thursday and we are supposed to sit down and go over the results on Tuesday.
She again brought up MDS and this time even AA but said that she wants to see what the bone marrow looks like with no steroids because there is a chance that maybe the steroids could have altered the test.
She said he's a mystery at this point, he has the signs of things like MDS, AA, or even ITP but nothing that is consistent with one of them.
She also mentioned that maybe it's rheumatology related.
His physical condition is worse. He's still VERY tired which isn't like him at all, he gets very very pale, petechiae breaks out all over his cheeks, he complains a lot of leg, hip, and neck pains, and most recently chest pains and saying it's hard for him to breathe.
Has anyone had anything similar? I'm trying to be patient but after 3 months of him in a lot of pain and getting worse it's frustrating.
Thank you in advance
