Idiopathic Thrombocytopenic Purpura (ITP)

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Idiopathic Thrombocytopenic Purpura (ITP)
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I'm new here!

Hi, my name is forrest. I'm here because I was recently diagnosed with hEDS, and its been a lot on top of all my other diagnosis. I've been dealing with so much for so long (I got my ITP diagnosis at age 9) in a family and friend groups full of people who don't understand and don't know, so I'm looking to get to know people like me, and get tips from people struggling with the same things

#MightyTogether #ADHD #PTSD #Anxiety #Depression #EhlersDanlosSyndrome #IdiopathicThrombocytopenicPurpuraITP #AutismSpectrumDisorder
#EatingDisorder

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I'm new here!

Hi, my name is tryingmybest31. I'm here because I have never met someone who has any of my chronic illnesses, and I’m looking to get tips on dealing with them. I was diagnosed with ITP nine years ago and EDS today.i like music, art, and theater!

#MightyTogether #AutismSpectrumDisorder #Fibromyalgia
#EhlersDanlosSyndrome #IdiopathicThrombocytopenicPurpuraITP

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A Sleepover At The ER: Navigating a Rare Blood Condition

“Is it possible that it is just… nothing?”

Raising my voice over the beeps of the Alaris medical pump, clutching a folded medical gown with tigers on it, and staring at seven doctors with their traveling computers should have been my sign that this was not “nothing.”

“No. This is definitely something,” the doctor states. He turns to the panel of residents filling the hallway. “We have here a seven-year-old presenting with head hematomas that needs attention. How do you handle sending in a patient who needs surgical intervention when you aren’t sure if their blood can clot?” He pauses for their response. “It’s tricky, isn’t it?”

He turns his attention back towards us. “This is a teaching hospital. Yours is a good case to learn on.”

Twelve days ago, I tucked my son into bed surrounded by his five favorite stuffed animals, his Bobos. He casually mentioned, “Momma, I bunked my head on the monkey bars during recess but I’m okay.” It wasn’t significant enough of an event to warrant telling the recess monitors, visiting the nurse, or even using an ice pack. I kissed his forehead and snuggled him in tightly into bed, carefully laying each Bobo around his neck, as he likes. Just days later, it would become the same routine I would continue at the children’s hospital for the next ten days.

Quietly, this unremarkable bump began a stealthy descent into concerning bumps on both sides of our child’s forehead and the top of his skull.

These hematomas, or as Oliver called them, the mushy part of his head that felt now like Squishmellows, grew to an alarming size. So alarming that the pediatrician's office immediately sent us to the emergency room, which lead us to our new room on the Hematology/Oncology floor.

“It appears as if we are looking at something rare,” the doctor continues explaining to the team. He describes how Oliver’s initial diagnosis of ITP at age two appears inaccurate or perhaps incomplete. This diagnosis occurred after a terrifying investigation when he presented with a petechiae rash. It was determined that Oliver’s body produced fewer platelets and would require supervision as he grew older. It was no big deal. An occasional nosebleed here, a visit to get blood drawn there; the diagnosis while unsettling was in no way impeding the life of a healthy, active seven-year-old. However, this time, it seemed like the monkey bars unearthed something more nefarious hiding in his system. The doctor translated: It is like the platelets are the pieces that build up at the dam to prevent the water from flowing. We initially thought he just didn’t have enough pieces, but now it appears that the ones he has aren’t really working. Like they are on strike…

“So, what do we do?” my husband asks while I attempt to draw a picture of water flowing into a dam in my notebook.

“We give him what his body is missing with infusions, hope his procedure goes well, and then wait for these hematomas to go away. Something is happening with his blood to cause this reaction, but we do not know what it is yet. This is a highly unusual case, so we will take it day by day.”

The Moores know rare, but we are not comfortable with it. One might think that with each experience of navigating the unknown, we would form calluses to help us get through the next event. But the previous resistance we have built does not transfer into the new situations. We return to our contact list to update new doctors, we explain new medical terminology to our family, and we help our children (who have never been great at transitioning) begin to transition into the next unknown.

Although, this time it is different. This time we have learned how to ask for help and accept it. This time, we have opened our doors (and broken refrigerator) to our loving and supportive community who continually show up in ways that we didn't even know we needed. We receive daily jokes and riddles to keep humoring our little trooper.

And we don’t know what is coming ahead. We don’t know when he will spend a day without being hooked up to an IV or when he will return to school. We don’t know when he can take off his compression bandages or his Spiderman helmet designed to make those sneaky hematomas go away. We don’t know what is causing this or what it will look like in the months ahead. But we do know how lucky we are to be surrounded by an incredibly strong community.

Not for just this rare adventure, but for every single one we have been through as a family.

And at the end of every long day, after hours of infusions of donated platelets and plasma, we snuggle with our little boy in bed. We reposition his bandages, kiss him right on his squishy forehead, and make sure he peacefully sleeps (with his newly bandaged Bobo to watch over him)

- until we can figure out what this “nothing” really is.

#platlet s #Clotting #ER

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Wanna read something funny??

I posted earlier today "I have all my normal discomforts but all in all, I cannot complain."...

Welp who would've thunk it... My platelets are 5k today... If you know anything about #IdiopathicThrombocytopenicPurpuraITP you know how beautimous that number is.

Doc went up on my Nplate dosage & wants me on prednisone.

Please pray for my family & friends, they are the ones that will have to tolerate my steroid attitude through this crash.

How do you handle your crashes?

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God's hands... God's plans...

I think I will use this platform to just clear my head each day. This is the only place that at least one person may read it & relate. It is very deflating never having anyone that understands the struggles that are out of your personal control. I mean they will listen to me but to vent to them about my discomforts comes off more as complaining. I am not complaining, I sometimes just need to get it out of my head so I can turn that repeat button off in my head.

Today is a really tough one. The night was long with tons of discomfort (I refuse to call it pain for my own mental well being) which I had no rest & had to be up for 6. Those nights where the flu feeling takes over your flesh so much so the sheets hurt, arthritic feeling hands, needles in the feet, head pressure that won’t stop, blurred vision so I cannot even read a book to attempt to fall asleep or fill the long night with. The trembling is really bad today, I am not sure I can hide it too well today but I am trying. Emotions are building from the inside that I am attempting to cover up, heck I am at work, Get It Together!!! WooooSaaaaah…. I have my compression socks on but it was all I could do to pull them on & they do not feel so good on the flesh today.

So on top of the #POTS my #ITP is acting up, I am curious to see what my numbers are today. I am covered in petechiae so there is no telling what my platelets are todyay. And I am at borderline tears for every thought which usually means they have dropped significantly. We shall find out today after work. That’s another thing, I am so freaking tired of going to the doctor every stinking week of my life, it is draining both physically & mentally.

Okay, let me stop, I see I am getting on a roll & I need to keep it moving & get focused on work, not discomforts.

May your day be a blessed one.

God’s hands… God’s plans…

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God's hands... God's plans...

I think I will use this platform to just clear my head each day. This is the only place that at least one person may read it & relate. It is very deflating never having anyone that understands the struggles that are out of your personal control. I mean they will listen to me but to vent to them about my discomforts comes off more as complaining. I am not complaining, I sometimes just need to get it out of my head so I can turn that repeat button off in my head.

Today is a really tough one. The night was long with tons of discomfort (I refuse to call it pain for my own mental well being) which I had no rest & had to be up for 6. Those nights where the flu feeling takes over your flesh so much so the sheets hurt, arthritic feeling hands, needles in the feet, head pressure that won’t stop, blurred vision so I cannot even read a book to attempt to fall asleep or fill the long night with. The trembling is really bad today, I am not sure I can hide it too well today but I am trying. Emotions are building from the inside that I am attempting to cover up, heck I am at work, Get It Together!!! WooooSaaaaah…. I have my compression socks on but it was all I could do to pull them on & they do not feel so good on the flesh today.

So on top of the #POTS my #ITP is acting up, I am curious to see what my numbers are today. I am covered in petechiae so there is no telling what my platelets are todyay. And I am at borderline tears for every thought which usually means they have dropped significantly. We shall find out today after work. That’s another thing, I am so freaking tired of going to the doctor every stinking week of my life, it is draining both physically & mentally.

Okay, let me stop, I see I am getting on a roll & I need to keep it moving & get focused on work, not discomforts.

May your day be a blessed one.

God’s hands… God’s plans…

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HOMESCHOOLING WITH CHRONIC ILLNESS

Today’s not a good day pain and inflammation wise.

It’s not the worst of days but it’s not the best either.

I could feel it throughout the night. My right hip was aching when I turned in the light part of my sleep.

When I actually woke up to start the day, my knee felt like someone had hit it with a hammer. My left elbow was so sore that just to rest it on the table was impossible. My right knee felt inflamed and hurt to walk up stairs. I had to take one stair at a time and hold on to something as I climbed each one. I had swelling and bloating in my stomach. In short, I was in pain and discomfort before the day had really begun.

In case you are wondering why things are like this right now, I will say that this has all coincided with a drop in my steroids and an increase in my immunosuppressant. It is something that has happened before for me in my journey with Systemic Lupus and previously with ITP but I had been hoping it wouldn’t happen again. Maybe it’s just a one off bad pain day today. I don’t know yet. Maybe it’s more of a pain-kind-of-season.

What happens on days like today when homeschooling still needs to go on?

Well, it’s what happens to anyone when you have kiddos at home and are feeling under the weather. You do whatever you need to get through. Some days like this we do lots of bed-school or lounge-school; we learn from the lounge or bed. Some days we watch movies or have resting time. Some days it all gets a bit too much for everyone.

This morning Miss 12 (Zippi) showed me some new fashion designs she’d be working on. She’d sourced the template and then designed over it herself. She happily showed me what she had created. The kids did some chores before we left the house. All examples natural learning.

We had a few errands to run so we did those early in the morning. We made a list and went for it. We went to the local church book fair (first one since Covid hit). Zippi posted some letters too. I did minimal walking and had time to have a cuppa at my fave café with the kids. The kids chose books (more Trixie Belden, books on Ancient China for Zippi and some Mr Men for Mr 9 (Zeeki)).

By the time I got home, I was wrecked and in pain. I had to rest again while the kids had their lunch and did some quiet poetry reading together in my bed.

We read a beautiful War poem called ‘Lights Out’ by Edward Thomas. We discussed the themes of death and light. We talked about subject matter, about the stanzas and the rhyming pattern. We discussed how it was written perhaps from the point of view of a soldier given that it was written in 1916 during World War I.

Once rested and with meds under my belt, we tidied up a little together and then read outside under our fave trees. We were still ticking off learning outcomes (and actually just learning awesome things!) but we were doing so at a pace that suited us all.

The flow of our days reflects the flow of our lives and the flow of our learning is the end result of it all.

Even if you don’t have chronic illness, know that the seasons of life come in various shades and colours and at times, catch us off guard. Over the years we have had seasons of pain, of depression, of post-diagnosis and needing time to get our heads around things. We’ve had seasons of sorrow and of new life, of worry and of hardship. We’ve walked out seasons of adventure and travel, of celebration and of death.

At home, our kiddos have experienced all these things right alongside us. They are doing life with us and get to see the seasons of life in all their beauty and fragility.

Maybe right now all you can do is feed your kids a bowl of cereal for dinner. Don’t worry. This season won’t last forever.

Maybe your kiddo is always pulling at you and “neeeeeeed”-ing you for something! I know it’s hard right now but this season truly won’t last forever.

Maybe you feel like you haven’t read enough books to your child, they haven’t written enough or you worry that they haven’t mastered their times tables.

Don’t worry, friend. ALL kids learn in their own time. Yes some need explicit instruction and help in various areas. You’ll work out what they need as the days go by. That will come.

Seasons flow with time too. They help us find a flow in life.

There’ll be a season where you’ll be able to manage more hearty meals.

There’ll be a season where you’ll find read alouds less challenging.

There’ll be a season where writing comes more easily to them and you notice they actually enjoy it.

Time.

Seasons.

Do whatever you need to get through.

I pray that if you are struggling today, there’ll be arms that uplift you and help you carry your load.

I pray you find joy in some small thing.

I pray that you are reminded that you are not alone.

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