In March, 2019, my son came to me with a sore leg, right by his groin. My husband and I both thought that he had played too hard and possibly pulled a muscle. We told him we would keep an eye on it. A week goes by and all of a sudden it was worse. I called and made an appointment with the doctor. We figured for some reason he had a swollen lymph node. He also had some red dots all over his legs and some on the rest of his body.
By the next morning, it was so swollen and sore, he could barely walk. But, he didn't want me to carry him either because of the pain. As soon as the doctor saw his spots, he sent us for blood work. (luckily in the office). Turns out, those spots were a sign of his platelets being low. (Platelets are what causes our blood to clot).
His platelets were at 1 thousand and should be at least 150 thousand. Then, the doctor tells me to keep him from doing anything that could get him injured, to stay in town (not go home) and he would call me shortly, after speaking with a hematologist.
We were with my dad that day, so after I called my hubby and told everyone what was going on, my dad decided to treat Tbomb to a milkshake for breakfast (he'd already had a pop-tart that morning, but the kid was scared) while we waited for the doctor to call me back.
That didn't take long. I figured it would be in the afternoon when he called, but it was less than an hour. He informed me that the children's hospital had a bed ready. What? My baby boy had to go into the hospital?
We grabbed some things in Walmart, went by the house to see dad, grandparents, and grab a few things and went to the hospital. After getting him in a wheelchair and getting past security, a nurse met us at the entrance to the children's hospital and got him checked it.
The crazy was just beginning.
Soon, the hematologist came by and told me that Tbomb has ITP. That they aren't completely sure what causes it, but that the antibodies attack the platelets. They are going to start him on an IVIG infusion.
Long story short, he had a reaction to the IVIG, so they ended up giving him 2 doses, but moving it slowly. It didn't work- they ended up putting him on steroids to suppress his immune system. After 5 days, his platelets finally rose to 9 thousand, still a long way from 150 thousand.
They released him with strict instructions to not let him do anything that could cause him to get hurt (no hopper, no scooter, no bike, running, or even climbing into his loft bed. I was told that if he hit his head to get him to the ER.
Over the next several weeks, he had appointments at the Children's Cancer Clinic (that's where the hematologist is) at least once a week, sometimes twice- with his blood platelets checked each time. Eventually (July), his platelets got back to normal, but we still had to be careful for a few more months. Even now, if he does hit his head, we have to watch very closely.
This isn't over. There is no cure- he is in "remission."
Basically, the doctors have no clue what causes someone's antibodies to attack the platelets in the case of ITP. With Tbomb, for various reasons, they do believe it is genetic. This means that it will never go away. Anytime his immune system is triggered, he runs the risk of the ITP "flaring" up.
Even his allergies, which his are pretty bad, can cause this. So, he has to be on allergy medicine every day. I also keep him on vitamin C to help his body fight anything that does try to come up.
I just thank God that we got him to the doctor and that now I know the symptoms- I didn't even know this was a disease.
Moral of this story and so many others: trust your gut. If you feel your child needs to see a doctor, take them! If Tbomb had fallen and hit his head, he could have had bleeding on his brain and with no platelets, we could have lost him so easily.
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