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TOPIC: 15 year old daughter diagnosed last week

15 year old daughter diagnosed last week 8 years 10 months ago #8625

  • susan5
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Last week my daughter, Cara, was diagnosed with chronic ITP during the course of her routine physical. She's had three blood tests within the past 5 weeks; her platelet levels have ranged from 41,000 to 60,000. Her doctor (a pediatric hematologist) wants her to have her blood retested in 6 months.

I am thankful that things are going well now and that her platelets levels are pretty steady...is that usually the case with chronic ITP, or is there a good chance that in the future her platelets will tend to spike more up and down?

I'm scared...it is impossible to know what the future holds at this early date, but as a mom, the uncertainty of what the future holds is really getting to me.

Susan

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Re: 15 year old daughter diagnosed last week 8 years 10 months ago #8626

  • eklein
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Why would they diagnose her with chronic ITP with only 5 weeks of counts? Chronic requires at least six months and some say more. That's very peculiar and makes me lean toward suggesting a second opinion or finding out what the doctor has in mind to say that.

Six months seems like a long time to wait for another count.

Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Re: 15 year old daughter diagnosed last week 8 years 10 months ago #8627

  • eklein
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Why would they diagnose her with chronic ITP with only 5 weeks of counts? Chronic requires at least six months and some say more. That's very peculiar and makes me lean toward suggesting a second opinion or finding out what the doctor has in mind to say that.

Six months seems like a long time to wait for another count.

Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

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Re: 15 year old daughter diagnosed last week 8 years 10 months ago #8628

  • susan5
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Erica

The doctor said that he felt she was chronic due to her age.

Being naive about ITP, I thought that by him wanting to wait 6 months to retest her was a good thing. I thought that I would just take it one day at a time and if she had any worrisome symptoms, ask for another blood test sooner. Being that I'm so unfamiliar with ITP, and unsure as to how to best handle this for my daughter, I didn't think to question her doctor too much about specifics.

Susan

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Re: 15 year old daughter diagnosed last week 8 years 10 months ago #8644

  • Angel85
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Even with her age, I wouldn't call it chronic ITP just yet as she only been diagnosed for what about 5weeks or so. I'd be asking more questions from this doctor or getting a second opinion. I agree 6 mths is a ling time to wait especially since he has diagnosed her as chronic. If he thought she was chronic, I would have thought he would be more pro-active about treating her and getting blood tests more regularly.
You've gotta' dance like there's nobody watching,
Love like you'll never be hurt,
Sing like there's nobody listening,
And live like it's heaven on earth.


Lauren

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Re: 15 year old daughter diagnosed last week 8 years 10 months ago #8646

  • server
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  • newcreationchangingdaily
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Hello Susan :)
I'm assuming that she isn't getting any treatment? Counts that "high" without treatment is, in most cases, a good thing! Unless there is bleeding. I agree that 6 months seems a bit far off. I've had counts ranging from 30 to 70 for about 6 weeks now and am being tested monthly. I'd ask the doctor again, and insist for more frequent tests if she is showing symptoms. Let us know how it goes.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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Re:15 year old daughter diagnosed last week 8 years 10 months ago #8664

  • jaycharness
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Susan,

While none of us our doctors, I would agree with the consensus of the group. Most (not all, but most) Doctors would not call ITP chronic for 6-12 months. Your daughter is still a few years from adulthood so you may really want to ask the questions about why it is being considered chronic. There is a huge shift from kids to adults in case you do not know. The theory is that 90% of the kids who get ITP, it will go away. In adults that is opposite, that 90% of adults who get ITP, it will become chronic. If your doctor is truly looking at this as your daughter being an adult than that may be some of the reasoning (I am only guesstimating). Regardless, the general rule f thumb when it comes to Doctors is the same regardless of the condition. If you are not 100% comfortable and your gut is asking questions, than you have every right to probe your Doctor more or get that second opinion.

I hope this helps,

JJ

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Re:15 year old daughter diagnosed last week 8 years 10 months ago #8672

  • susan5
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Thank you all for your insight and support. The more knowledge I can learn about ITP will better enable me to be an advocate for my daughter.

Susan

P.S. No--she is not getting any treatment now; the doctor just wants her to wear a medical alert bracelet.

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Re:15 year old daughter diagnosed last week 8 years 10 months ago #8695

  • Angelalogin
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Susan,
Just wanted to tell you that my son has had ITP for about 2.5 months now and they (hemo) said that he is still in the acute stage. He was usually around 2 or 3 with some bleeding the last time that we were admitted, lots of bruises and petechiae and not once of the 7 times we've been admitted in that time did ANYONE suggest a medic alert bracelet to me!?!? I had to suggest it to the transplant social worker (our go-to person) So we have it added to his transplant bracelet.
I agree go with your gut, I know everyone is different but my son goes up and down faster than you would think, so I think it would be best to keep a closer eye on that number. Just my opinion though.... If I questioned the docs I would either do some research or get another docs opinion because trust me, every hem you ask has a different idea! :S

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