Here is our story,
It all began on April 23rd. I was out of town, my husband was working so we left our children with grandparents. My 2 year old had a fun day playing with his twin cousins outside. When I returned home later that afternoon, the kids continued to play outside at home. I noticed Grayson, the 2 year old, had hives, redness and swelling all over his face, ears and neck. He as allergies and asthma, so I assumed he reacted to a pollen outside. The pollen count was extremely high that week as well. I immediately gave him Benadryl and a bath. He was not happy about coming inside for a bath so he cried while I washed him. As he cried, I noticed large red areas the size of nickels inside his mouth. I thought it was strange but assumed it was part of the allergy. The Benadryl worked and I put him to bed. The next morning I noticed the red dots all over his head and neck. Once again, I assumed it was a symptom to the reaction he had the night before. As the day progressed, I noticed bruises coming up all over his legs and a few on his arms. A couple of the bruises were even swollen. I thought he must of played hard with his cousins the day before and didn't think much of it. The next two days I noticed the bruises became larger, darker and many more were present. I questioned his grandma on what they played outside and if he they kicked a ball causing his chins to be hit. I knew his bruises didn't seem right and he still had the red dots in his mouth. At that time, my 7 year old daughter had a 103 temperature so my focus was on her. On Wednesday, April 27th day 3 of my daughter's fever, I took her to see her pediatrician and soon found out she had strep. While we were there, I decided to ask her about Grayson's bruises and if she believed he needed to be seen. She wanted him in immediately fearing a platelet issue. I brought him in a few hours later for his appointment and blood was drawn. She assured me that she would call by 5 pm if anything came up otherwise I would get a call from her the following day. That afternoon and evening, panic began to set in as I talked to others about his condition and the possibilities of what it could be. 5 pm came and went so we settled down for the evening but I knew something wasn't right with his bruises. I put him to bed and as I prepared for bed as well at 10 pm, I got a call from his provider's office that his count was a 7 and we were to immediately take him to the ER. That was the worst feeling as a mother...leukemia was my fist thought and I believe my son was dying. We quickly got him to the ER where more blood was drawn and ITP was mentioned. His white cell count was elevated but everything else looked good. Due to the higher white cell count, more tests were done to rule out other autoimmune disorders. By 3 am he was in his hospital room and receiving IVIG. After 12 hours, the process was complete but our fears were great. We had to wait until the following morning for more blood to be drawn to see where his counts were. The next morning he was at 140 and we were ecstatic! The pediatrician went into great detail about ITP and what to expect. He truly believed his counts would stay up and we wouldn't have to deal with it again. When his counts were tested again the following Monday, he was up to 180. We were positive, still scared, but life continued for the next week until his next count check. When he was checked a week later, he was down to 40. I felt sick, terrified for my little guy and down right helpless. I had been told about an amazing hematologist in the area that I wanted Grayson to see. I called his pediatrician and started the process in getting him seen. His pediatrician was wonderful and made all the arrangements. His appointment was made for the next day.
Since then in the last month his counts have been going up and down. He went up to 90 just last week but is heading back down. Two days ago he was at 70. Today he has petechiae on his ears and neck, canker sores all in his mouth (especially his bottom lip), and multiple bruises all over. He's a little trooper though and sits in the same chair at the lab each time he goes in. They all know him by name there and take good care of him with suckers and stickers ready for him each time he enters the room. The ladies at the local donut shop know him well now too because his daddy takes him there for a yeast donut with chocolate icing and sprinkles after every blood draw.
From what the doctor has said, reading the posts and such, I know that he is going to jump around in numbers but that doesn't make the fear go away. He is just a little boy and the not knowing is just killing me. Not knowing what caused this for him (he did not have a virus when this occurred), not knowing how long he will be battling this, not knowing if he will have an active bleeder of some sort, etc... I can't stop worrying, stressing, and looking him over for more signs. But I am so grateful for this website and all the information I have already found after reading other stories and posts. Any information, stories, words of encouragement are very welcome. I need my nerves calmed and my hoped lifted. Thank you...
