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My 2.5 year old was just diagnosed with ITP 1 month 4 weeks ago #71822

  • agarr7
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Hello everyone! I'm new to this forum. I'm glad that I found it because I need to connect with others who are going through a similar thing. I've been on google day and night just researching anything I can about this disease. 

My daughter started exhibiting a small petechiae rash at the end of August. I initially chalked it up to a viral thing, so I didn't think too much of it. A couple of weeks prior, I took her to a story time session for kids at the public library so I thought that she caught some viral thing.
The petechiae rash started to spread all over her body. At the same time, I started to notice these large bruises popping up all over her body. A majority of them were on her shins, and since she's a toddler, I just assumed it was normal. To confirm that everything was okay, I decided to make a pediatrician appointment after the petechiae didn't go away after around 2 - 2 1/2 weeks. 

The pediatrician decided that we should get some blood work done to see if she has a blood-clotting disorder. After they received the results, they called me and said I have to immediately take my daughter to a children's hospital because her blood platelet level was 7 (7,000). I didn't understand this completely but I took her to the hospital. At the ER, they ran her blood again, and her level was at 9. They told us that they would discharge us since my daughter wasn't actively bleeding and didn't appear to have any other issues. They told me to make a follow up appointment with the hematology department. 

We went to the hematology folks two days later. Her blood platelet level was at 12. We decided to do a watch and wait method. We don't know if she has acute or chronic ITP. The doc said that ITP cases in kids her age usually go away after about 6 months, however, we're scared. The hematology people want us to get blood work every 2 weeks to monitor her progress.

We are due for blood work this Saturday and I'm genuinely terrified. The petechiae rash is still present (in fact, there might even be more on her body) and her bruising is still present. She also has a few blood blisters in her mouth and small petechiae patches in her mouth. I think she's had ITP for about a month-ish. I was hoping it would start to look better, but it's hard to tell.

Until she is actively bleeding, we don't plan on providing her with medications (unless her doctor thinks it's necessary). Right now they don't think she needs it (knock wood), but living with a 2 year old with ITP is terrifying. I'm so scared that she's going to fall and get a horrible injury. I bought her some comfy knee pads and I've been giving her a really healthy and clean diet to see if that helps. I have also been giving her some beet juice. 

I'm just praying that her platelet levels are naturally increasing. I just wanted to vent because this is so stressful. Thanks for reading. Feel free to share your own stories with me if you're going through something similar.

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My 2.5 year old was just diagnosed with ITP 1 month 3 weeks ago #71828

  • MelA
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Hi agarr7 - I'm an adult with ITP so I really know anything about a child with ITP.   But believe me I do know how frightening it is to have a child who isn't well.   It sounds like you are doing all the right things.  And it sounds like her platelets are increasing without any help - I hope that continues.  I believe today was another blood draw for her - please let us know how she is doing.

Hopefully someone with an ITP child will be here soon and respond to your post.
Take care and keep us posted! 
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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My 2.5 year old was just diagnosed with ITP 1 month 2 weeks ago #71842

  • agarr7
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Thank you so much for your message. I apologize for the delay in my response. If you don't mind me asking, at what age where you diagnosed with ITP?

Well, the blood work showed that her platelet level dropped to 6 (6,000) from 12...so we were absolutely crushed. We get more blood work done in a day so we'll see where her levels are at. I feel like her petechiae rash on her chest is getting a bit better (although it's still definitely present) and she currently doesn't have any blood blisters (wet purpura) in her mouth (although they pop up like every other day or every 2 days). I'm really praying that her platelet levels have risen just a little to offer us some hope. 

She still bruises SO easily, so I know the levels are still low, but we're aiming for anything over 6! Her doctors are a little concerned about the wet purpura. They said they are right on the edge of treating her, but they still want to wait and see if she improves on her own before going down that road. I'll let you know what your blood platelet level is at on Thursday. Thanks for your kindness and support :)

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My 2.5 year old was just diagnosed with ITP 1 month 2 weeks ago #71843

  • MelA
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Early 40s - I was "fortunate", my only symptoms were petechiae and massive bruising.  

So sorry her count has dropped - know that is a big worry!!  I do like that your daughter's doctors aren't rushing to treat her with every known treatment, so many do that.  

I'm hoping you get some good news with Thursday's blood draw.  How is your daughter doing with those bless her heart!   Sending good thoughts your way!! 
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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My 2.5 year old was just diagnosed with ITP 1 month 2 weeks ago #71844

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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agarr7
I too was diagnosed as an adult so not sure how much help I can be. Have you seen this link ?  pdsa.org/children.html 

 

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My 2.5 year old was just diagnosed with ITP 1 month 2 weeks ago #71845

  • agarr7
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Wow - early 40's. Has ITP significantly changed your quality of life, or have you found a way to navigate through it?

Today, her blood showed that her platelets are at 4! The doctor said it's still within the range as last time (6), but we're still crushed. We're still going to do watch and wait since it's only been almost 2 months that she's had it, but I almost had a breakdown today. I NEVER thought my child would be going through this at this age...and what makes things even more stressful is that I'm currently pregnant. I haven't had a chance to really focus on my pregnancy because I've been so preoccupied with ITP.

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My 2.5 year old was just diagnosed with ITP 1 month 2 weeks ago #71846

  • agarr7
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Thank you so much for sharing the link. If you don't mind me asking, what was your age when you were diagnosed and what are your platelet levels now? 

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My 2.5 year old was just diagnosed with ITP 1 month 2 weeks ago #71847

  • mrsb04
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  • Diagnosis of ITP in 2014. Retired (Nov 2019) renal specialist nurse, 46 years on the NHS front line. My belief is empower patients to be involved as much as possible in their care. Read, read, read & ALWAYS question medics about the evidence base they use
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agarr7
I was in my 50s. My count is usually around 40-50 but has been as low as 2.  

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My 2.5 year old was just diagnosed with ITP 1 month 1 week ago #71848

  • MelA
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ITP has not changed my quality of life, I wouldn't let it.  We moved to Tokyo shortly after diagnosis and I was on 60mg of prednisone, didn't know if I'd have a hematologist when we got there or anything about Japanese health care - as it was I had a fantastic hematologist & it turned out he knew my hematologist in the States.  We then moved to Hong Kong before coming back home.  I can't say I wasn't worried at times - gave myself a case of shingles in 2002[?] when my count hit the gutter after a tetanus booster and I thought I'd have to go on prednisone again.  

I am so sorry your daughter's count didn't go up - sounds like she has a good hematologist, my old one [am now with one who is closer to my house] would have said the same thing about 4k & 6k.   Congratulations on your pregnancy, when is the baby due?   You talk to that little one and tell it how much it is loved - try to relax a bit [easy for me to say].  Have you talked to your OB about what is going on with your daughter, that might help you.   

What part of GA are you from - we lived in Marietta for 2 years.  

Melinda
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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