September 16, 2015 was a day I will never ever forget. My little girl (who was 8 years old) had came home from School twice that week with baseball and softball sized bruises on her legs. After literally interrogating her as to how they happened, and trying to set up a meeting with the School….I turned to Google.
Bad idea, I know. Nothing good ever comes from Googling symptoms. Except this time it saved my daughter’s life. Almost….okay fine, it saved me from beating the crap out of people who I thought might be responsible for her bruises.
After clicking on every link for the first 5 pages, I realized my daughter could either have Leukemia or ITP (Immune/Idiopathic Thrombocytopenic Purpura) = Blood Disorder. I cried, and cried and cried. I thought I was going to lose my baby girl. I could already picture the hospital stay, the chemo, the treatments, and all of the bad things that comes with childhood cancer, or any cancer for that fact, (As I have had 3 family members pass away as a result from Cancer). I immediately called her Pediatrician, and left 5 or 6 or maybe even 10 messages with the nurse. I told them my fears of her being bullied at school, Leukemia, ITP, other Cancers, blood disorders, etc… I freaked out, okay. I didn’t know what else to do.
FINALLY, she returns my calls, and I cried again. We set up an appointment for that afternoon. Upon arriving, we went straight back. They ran some blood work, and then the moment came. She walked in with her stack of papers and sat down. She asked me what I thought before reading the results. I told her my concerns of Leukemia and ITP and she said I was right….. wait… right about which one. Her reply was both. Leukemia is still on the table, however she believed that since there were no other symptoms is was just ITP. Still not good, but not life threatening either. My daughter’s platelet count was 14,000. The Doctor also noted that when she went back and looked at the blood results from July, (When my kids have their yearly checkups with their Pediatrician, they always get their Iron levels checked), she noticed that her platelets were only 75,000 then. She just didn’t notice it. So she sets us up to go to Children’s Hospital Hematology and Oncology Clinic….A.K.A. Clinic 8, on Friday the 18th.
Upon arriving at Clinic 8. We didn’t have to wait any longer than 15 minutes. We were escorted down the long hallways and into a room surrounded by glass and nurses. There were large chairs with small ones beside them lining both walls. The T.V.’s were up above them, and the games, movies, and controllers were stacked up behind each little section. The nurse came in and drew some blood, then another came by to offer breakfast. She said we might be there for awhile so she wanted to make sure we were comfortable. I was quiet and calm on the outside, while almost having a panic attack on the inside.
After what seemed like all day….okay it took about 4 hours. The Hematologist came in and sat down with us. He said my daughter definitely had ITP and not leukemia, because she wasn’t showing any other signs and symptoms. He then explained the cause. Which no one will ever truly know, because there is no ONE cause of ITP. At some point last Spring she had a stomach bug, or virus. When the virus was done running its course, her body still continued to make antiplatelet antibodies, and continued destroying her platelets. This resulted in her having extremely low platelets. When your body has a low platelet count, you can have spontaneous bleeding from the nose, gums or brain and or bruising. You may also have what is known as petechiae. Which are small pin sized red dots that do not go away if you pull on the skin around them. The normal range for platelet count is somewhere between 220,000 and 380,000 per microliter of blood. These numbers may be different depending on age, and what your physician or child’s pediatrician determines is a normal range. There is no real treatment for mild to moderate ITP. Only in severe cases the spleen can be removed. Other than that, there are a few treatments such as steroids, WinRho, IVIG, and 6-Mercaptopurine Infusions. All of which can have severe risks, and in some instances can be more harmful to the body that just monitoring the platelet count.
My daughter’s platelet count that day was 26,000. Every week after that, we had her blood checked by pricking one of her fingers. The Pediatrician would do a CBC which stands for Complete Blood Count. Every time we would go in for a check up we would always try to guess what the number was. It was a small way to lighten the situation. Her platelet count would go up and down each time. Ranging from the 14,000 all the way to 179,000. I had to educate her Teachers, the Principal, her friends, and our family on the risks of having ITP. Even though she hadn’t had any of the bleeding symptoms yet, she could still develop them. When you have ITP and you bump into something you don’t just get a small dot, it becomes a large deep bruise. If you were to hit your head, you could have bleeding of the brain instead of just a little bump and bruise. Because of these risks, she wasn’t allowed to play any contact sports, and couldn’t go to P.E. at school because they would play dodgeball, basketball, kickball, and football. She spent most of her 3rd grade year in the class room, or when she was Home, she would stay indoors. This took a toll her, and us. Before ITP she was in Cheerleading for 2 years, played ball in the yard with her brother, was in Gymnastics, and an all around very athletic little girl. (She still is, she’s just a lot more cautious of playing too rough)
Acute ITP can happen to any child between the ages of 2 and 8. This means that it can last up to 6 months, and will resolve on its own. Any time period after 6 months is considered Chronic ITP. My daughter had ITP for over a year. It was discovered that she had a Viral Infection back in April of 2015, which was when her body most likely started to destroy her platelets, but she wasn’t symptomatic.
During the Spring of this year, her platelet count was slowly getting higher and higher each time. They were staying in the 100,000 range. Which was amazing. We stopped checking every week, as her bruising decreased. We were only going every two-four weeks. She still had what we call Leopard Spots, (small dime sized light colored bruises), and petechiae, but nothing more than that.
Right before School got out for Summer, the Hematologist said we should only come in for a CBC in the event she had any symptoms. On June 1, 2016, we went in for a scheduled check up. To our amazement my daughter’s platelet count was 326,000! We were beyond thrilled! I had to keep asking “are you sure that’s the right number?” “do we need to run it again just to be sure?”. After that we haven’t had to go back for any CBC’s. However, we did go for her yearly on August 31, 2016, and her count was 311,000! We are so thankful that our little girl, can finally live a normal life again.
Now that we have finally said goodbye to ITP, hopefully forever, I want to share our experience with others. ITP sometimes goes misdiagnosed, and over looked. It is very common, but still not much is known about it, except that it is an auto immune disorder. There is always a chance that my daughter could have another “episode” of ITP months or years down the road. However the possibility is very slim.
For Parents of recently diagnosed children, or adults who were recently diagnosed below is a list of websites that were very helpful to me along our journey. Thank you for taking the time to read this post, and please feel free to comment, or ask any questions you may have!