Hello! My name is Lynn and my son, who’ll be three and a half in a couple months, is newly diagnosed with ITP. I've already found a lot of great information just browsing other folks posts and decided to register and introduce myself and our story. It might save me some panic and time if I can just ask here instead of hunting the internet.
My three year old is a very energetic and fearless fellow. If I said, "I tell him to stop: running, climbing, jumping, spinning, flipping a 100 times a day!" I'd be giving you a very conservative estimate. Needless to say, he’s always had little dime size bruises on his shins and lower arms. And quite often his forehead.
12/26/15 I noticed big, normal color bruises covering his knees and shrugged it off to him playing rough with his cousins over the holidays. Then last Monday 12/28/15 I noticed his cheek bruised extra fast after he was jumping with his cousin and ‘got landed on.’ Then as I was changing him for bed I found big dark bruises on his lower arms, shins, knees, bottom, back, temples, cheeks, jaw line. And a big black puffy bruise on his side/abdomen a couple inches above his hip bone. I also noticed three petechiae on his stomach. I was gasping as I found each bruise and struggled to hold back tears. He acted fine all day and never complained about anything other than the cheek.
I spent the rest of the night wondering how hard his cousin had landed on him. Could that be the reason? Surely he would have cried or complained if it had been painful enough to cause all that bruising? But he didn’t.
I went to the internet to search bruising in toddlers. (Even though I knew very well that searching for medical answers on the internet can cause “could it be?!” panic.) I found three common topics: Abuse, ITP and leukemia. I read about ITP since I could rule out the first and didn’t even want to think about the last.
I made an appointment with our pediatrician’s NP since our ped was out that day. I still believed I was probably overreacting but decided to go with my mom instinct. Better safe than sorry. I spent all morning afraid to touch him and almost crying every time he’d bump into something. At lunch time I found four more large bruises including a very scary bruise on his chest near his collar bone. He hadn’t done anything that morning that could explain that one! I no longer worried I was overreacting.
The NP examined him and we found that a lot more petechiae had developed; back, stomach, shoulders, armpits, knee pits, hips, and inside his nose and roof of mouth. She sent us to the lab for a blood draw and told us she’d put a rush on it and call us in a couple hours. He did great with the blood draw, only gave a little holler at the initial stick then enjoyed watching the tubes fill.
She called and said his platelets were very low, at a 9. I held my breath. But his red and white counts were normal. Whew. I asked if she was thinking ITP. She said that’s what she thought but more blood testing was needed. I expected her to tell me to call in the morning for an appointment, but she asked me my preferred hospital and walked me through checking in to children’s emergency.
We checked in 12/29/15 8:30pm and they got him settled into a bed and gown then put in an iv line and drew more blood. A ‘child life specialist’ came in with the nurses. Her job was just to occupy him while they placed the iv. She had a tablet full of games and he only glanced over for a second when they stuck him. A while later the hematologist came in and delivered the ITP diagnosis and outlined her treatment suggestion: An overnight stay for IVIG. After were settled in a regular room they started the iv. It took 6 hours (3-9) and after a few more for checking vitals and another visit from the dr. we were discharged at 1:30pm 12/30/15. She gave us a prescription for ondansetron (zofran) for the nausea and an appointment on Saturday 1/2/16 for a cbc.
I had a heck of a time getting the “ondansetron in solution”. No one had it in stock (and quite a few pharmacists gasped at the price). Walgreens could order it and it would be in their next day lunch delivery. The pharmacist suggested I look at goodrx.com for other possible pharmacies in the area. No one had it in stock but I think she suggested the site so that I would see the coupons. A 70% coupon for Walgreens took the price for the prescription down to $90. I could have kissed her. He did get sick twice before the prescription arrived. But the medicine worked great and he only needed it two days.
His Saturday 1/2/16 appointment went great. He still wasn’t bothered by the blood draw and the doctor said they’d call with the results. An hour later we got the call. His platelet count was 207! Yippee! We have another appointment next Saturday.
We’re hopeful that he is in the percentage of kiddos with spontaneous recovery before the IVIG boost wears off. But we’ll take things as they come.
Right now I’m keeping an eye out for new bruises and having a heck of a time keeping him from his usual running, climbing, etc. He’s already getting bored with the couple board games we have (no pun intended) and was never much for coloring, painting or playdoh. He loves books and we have a lot so that’s helping.
A friend is going to loan us her Leap TV game system and a few games she says he’ll enjoy even though he’s on the low end of the age recommendation. We may go out to buy some more board games too. I’ll have to do some searching for good ones… all I can think of is Candyland, Chutes and Ladders, and Hi-Ho Cherry O.
Should I ask about a helmet just to ease my worries and let him play more freely? Or is it a bigger hassle? Maybe it’s time to learn to be less rambunctious? He does love his bike helmet. Maybe I’ll stick that on him! Haha! Thank goodness it’s cold here or he’d be heartbroken about missing the playgrounds and bike rides. I’ll worry about that later if we need to.
Sheesh! Sorry to anyone that read this novel. Guess I needed to write it all out of me! Glad there’s a place with so much info and folks happy to pass along their knowledge.
