My Son has ITP
One minute we were taking him to the doctor for what we thought was nothing, the next, our son was being rushed to the children’s hospital via ambulance. Here’s the story of what happened and the signs and symptoms he experienced.
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My new video about our journey.
What a ride
Jake, our 12 year old, is a normal, healthy kid (minus the severe peanut allergy). He has sensitive skin, so for him to have a rash or red spot is nothing new. In fact, he almost always has some benign thing going on like that. He practically lives outdoors and is always into something.
When he came inside on a random Thursday afternoon in January and showed us his “spots”, it grabbed our attention for one big reason; they looked just like mine. “We match!”, he said. He was right, they are the same “dots”. Jake started breaking out in petechia.
Deep down, the guilt was already swelling up in me. I had a sneaky suspicion I passed down my auto immune RA to him. I just got diagnosed in October with RA, so this is brand new for me.
We planned to go to the doctor Monday to get him checked out. However, they had no appointments available, and we had to take him to the ER.
Over Sunday night into morning, the “dots”, or petechia, spread like wildfire. It was covering every inch of skin on his legs and feet, then spreading to his face, neck, eyes, an even inside his mouth. Then we noticed bruising showing up all over his arms and legs, and a few on his hands. He didn’t hurt himself, and just like me, his bruises appeared out of nowhere.
The doctor’s office was filled for the day (even though I called at 6:01 AM), and said to take him to the ER. Off to the ER we went.
Waiting on blood test results in the military hospital ER .
It was a Long Day
Most of the time, when us moms worry, nothing comes of it. I’ve been pretty good about “not worrying” about things for a few years now. The Lord has brought us through enough storms that I just don’t fret or worry about much.
However, this nagged at me.
I was almost shaking in the ER waiting for an update. They took his blood and put us in a room that wasn’t a normal ER room (I’m VERY familiar with the ER at our hospital…). Things were not exactly going as planned or according to normal protocol.
Then they came and asked for a second sample of blood. That’s when I knew. Because of Covid-19 policies, my husband and oldest son had to stay in the car. It was just Jake and I in that room, and if I showed any fear, he’d be scared. So I put on a brave face and waited….and waited….and waited.
We were there for almost 8 hours before we had any indication as to what was going on.
The doctor came in, and sat me down.
The ER doctor explained that a normal person has at least 150,000 platelets in their blood at all times. When they took Jakes blood, they tested him twice. He had just 2,000 in his body (it was down to 1,000 when we got to the children’s hospital). That was why he was bruising and had the red dots all over his skin. His platelet level was not just low, it was dangerously low. He was at severe risk.
He said Jake needed a special doctor, a pediatric hematologist. Jake needed to go immediately to the children’s hospital, and he couldn’t go/ride with us in our car. He had to be transported by ambulance to the children’s hospital 90 minutes away.
The kicker? I couldn’t go with him in the ambulance. Watching him being wheeled into the ambulance and leaving me behind was one of the hardest things I’ve done as a mom.
I can’t explain how hard I had to choke back tears at this moment.
The Mad Dash
We went home while the ambulance drove to the hospital. We needed to pack a bag for at least 3 days worth of clothes and supplies. We didn’t even have time to get our suitcases down from storage. Everything we took with us was in tote bags and backpacks.
Then we made the trek to the hospital. We’ve never been in this town before, so we had no clue where we were going.
We arrived around 9pm. We got to his room and there he was, playing Minecraft in his bed like he hadn’t a care in the world.
That’s my Jake.
We don’t have video games at home, so this was a new, exciting thing for him.
Here I was, in complete mom-panic mode, and he’s chillin’ with the nurses learning Minecraft.
He was definitely entertained.
He has his own room, and his own bathroom, too.
They started his first procedure right after we got in. For a couple of hours, we stayed with him through the countless IV bags, watching them drain into his arm.
We left around 1:45am and made the journey to find an open hotel with room. We found a Holiday Inn across the street with free breakfast (essential when traveling with teenage boys), and they had a room with 2 beds. I think we all passed out cold around 2:30am.
When we woke the next day, it was in the low 20’s, and frost covered the cars in the parking lot. I could tell we were a little further north than home. I got up, showered, and got breakfast for myself and my crew. Coffee was essential. I was running on about 4-ish hours of sleep and 2 cups of hotel coffee.
But, I had to push through. Jake’s hematologist was coming that morning to speak with us and give us the first real answers to this situation.
From my Instagram stories. I documented what it was like.
Jake’s ITP Diagnosis
Around 10am, Jake’s new doctor walked in with a group of doctors. It looked a bit intimidating, I’ll admit. He looked at Jake and I and said that Jake has something called ITP, or Immune thrombocytopenia. It’s an auto immune disease. It was probably triggered by a cold he had the week before.
And before I get more questions or comments, auto-immune diseases run in my family. It’s genetic. It dates back before my great-grandmother, and most of us in my family on that side all have some kind of AI disease. Jake does not have the C19 vax, and neither does anyone else in my family. So this isn’t a side effect, as that would be impossible.
Moving on.
The doctor explained that Jake was getting a series of platelet treatments to induce production in his body. He was getting all kinds of things in his IV, and each treatment lasted about 6 hours. Once his levels were high enough, he could go home, but it would take a few days.
I had never heard of ITP, so this is all new to us.
Jake started his second round of treatments that night. We had no idea how long we would be there, so we booked ourselves at the Ronald McDonald house on the hospital grounds.
Thankfully, on day three, Jake’s levels had increased to 45,000 platelets, and they allowed him to go back home. We were all elated!
Getting round 2 of treatments. They made him sick to his stomach. It was hard to watch.
Brain Overload
Because I had never head of ITP, I immediately scoured the internet for all the reliable medical websites to see what exactly this all means.
It all hinges on if Jake’s ITP is acute or chronic. He’s got an over 80% chance of this being acute.
However, the treatment plan long-term depends on this.
The only way we will know anything is time. We have to see if his body will make the platelets on its own over time, or if this is our new normal.
For now, he can’t play sports for a while. He has to be extremely careful. If he gets hit in the head, he has to go back to the ER immediately (we have to call 911). If the spots or bruising start back up, it’s back to the ER. He’s at high risk of brain bleed right now.
If he even acts weird, it’s back to the ER. From there, it’s back to the children’s hospital.
Next week, he goes back to have his labs drawn again and his levels checked.
Jake says the hospital food is pretty good!
Where we go from Here
So where does this leave us?
We were in the hospital for 3 days. We may end up right back there.
It’s a lot of “it depends”.
Through it all, we felt the Lord’s presence. We felt covered by the prayers of our family, our church, and you all through the blessing of my social media community. Jake had (literally) thousands of people praying for him all over the world.
For that, we are forever thankful. We feel so blessed to have you in our lives.
Long term, I don’t know yet what this all means. I don’t know what our new normal looks like. All I know is that my trust and hope is in the Lord. The Creator of the universe, the Creator of my child, holds his future. There’s no where safer Jake could be.
Jake was so brave through this entire ordeal. I really admired his strength through this. He didn’t show one ounce of fear. Yes, it was painful, exhausting, and scary, but he never showed it. He was brave for himself and for me. I realized how mature and how much he had grown through this situation. Even if this is his new normal, I think he’s going to be just fine. He survived the worst of it.
This may be a new chapter for the Maltz family, but we will face it together.
Until next time,
Soli Deo Gloria,
Mandy
