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TOPIC: When do the doctors draw the line and treat.

When do the doctors draw the line and treat. 8 years 8 months ago #15169

  • kms2013
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I got a call from the school nurse on Friday, that Alicia had more bursing and she had a little blood from her gums. I took Alicia in to clinic and her count had fallin to 17. The doctors sent her home with no treatment since she did not have active bleeding. I took her in to the ER last night due to more bursing and her gums had started to bleed just a little, she had some spots in her mouth as well.
In less than 24 hours her count went from 17 to 15 and they did not treat her. The doctor told me in the very beinging that we needed to keep her count above 20. So why are they not wanting to treat her? She has had two ivig's in the last past 3 months and they are only lasting her 2 to 3 weeks at most. She is not complaining of any pain just very tired and her eyes look very dual and dark. I don't understand I thought under 20 is a dangerous place for her to be at! So why are they not doing anything?

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Re: When do the doctors draw the line and treat. 8 years 8 months ago #15172

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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KMS:

A count of 15 and 17 is the same and not really considered a drop. Platelets fluctuate a lot normally, and there is a margin of error with the counting of around 5k.

All doctors are different as to when they treat, but it's more common in children for them to just watch unless there are serious symptoms. I know it can seem scary and it's frustrating when no one does anything. 20 can be dangerous for some people and not others, it all depends on the symptoms.

Hopefully, other Mom's will jump in and let you know their experiences.

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Re: When do the doctors draw the line and treat. 8 years 8 months ago #15175

  • eklein
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How old is your daughter, that's another factor to consider. Is she old enough to practice cautious behavior in activities where she could take a serious bump especially to the head?
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: When do the doctors draw the line and treat. 8 years 8 months ago #15180

  • kms2013
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she is only 7 years old. I got home from work today and she has a little blood coming from her nose. She still has quit a bit of petechiae in her mouth and on the right hand side of her chest and arms but the ER doctor said the Hemoc doctor did not think the systems were enough to treat her. I am just fustrated and scared. This is all new for us.

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Re: When do the doctors draw the line and treat. 8 years 8 months ago #15185

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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I know you're scared. That's normal. Some doctors react at that count and some do not. It can take time to develop a relationship with a doctor you feel comfortable with. If you are not comfortable with the treatment approach, talk to him. If you're not happy with the outcome of the discussion, look for another doctor.

In the meantime, stay calm. Bruising, petechiae and a little bleeding are minimal symptoms, unless she is covered in them. If symptoms increase, you can go back to the ER.

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Re: When do the doctors draw the line and treat. 8 years 8 months ago #15207

  • jwbailey98
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I know EXACTLY how you feel...my daughter was dx 2/28/11 and she's 11 yrs old. We've had 2 rounds of ivig and prednisone and neither did much. Her highest count was about 120,000. Her count today was ZERO. She has quite a bit of petechia, there is blood in her nose when she blows it...but it doesn't pour out like a regular nose bleed which is good. The docs are still trying to give her till Aug which is when she'll hit that magical 6 month mark to see if it's acute or chronic. They are having a meeting tomorrow with all the docs to see if they are going to continue to just monitor my daughter or give her a treatment.

I know it's frustrating to see them do nothing and have our hands tied...trust me I feel frustrated at times too but after everything I've read this seems to be how they go about it with children. You dont want to put your children at risk with meds that might give them bad side effects or harm them if they dont need them.

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Re: When do the doctors draw the line and treat. 8 years 8 months ago #15213

  • grasshopper
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From what I read it seems that here in the UK, they don't tend to treat unless they really need to. My 4 year old daughter was diagnosed in October with a count of 13000. Three months ago her count went up to 21000. But she has never been treated (apart from a platelet transfussion after a nasty head bang). I must admit, from what I hear on here about the side effects of treatment I'm not sure that treatment is the best option. She has an appointment this Friday with the heamatologist to see what her count is now and whether they will treat. This appointment will be past the magic 6 months (although it looks like she has had it for a couple of years due to the amount bruising). I'm guessing she must still have a low count as she is still covered in bruises and petechiae (some weeks worse than others), but she now also seems to bleed for a very long time if she cuts herself, which was never a problem until the last couple of months. We'll see what the results show on Friday (fingers crossed).

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Re: When do the doctors draw the line and treat. 8 years 8 months ago #15222

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Grasshopper - forget the 6 month thing. It will make you crazy. Some of the recent articles state that 'chronic' is when a person has ITP for 12 months. Even at that, I have seen children go into remission after 10 months, 2 years, 5 years, etc. Chronic does not mean a lifetime.

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Re: When do the doctors draw the line and treat. 8 years 8 months ago #15357

  • tinagbb64
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wow....i totally understand where you are coming from....my daughter is 14 and diagnosed on october 13th 10.....she has been in and out of the hospital since then....just about every 2 to 3 weeks.....this last treatment they put her on oral steriods and she was miserable but her platelets went up to 457k and then in a week they dropped to 244k and today they are at 5k....she is on her menses and the doctor says it has nothing to do with it and stuff but everytime she is on it she bleeds like crazy......so frustrating i know....i am starting to wonder if doing nothing is better or not....i feel so bad for her.....as i am sure you do for your child.....cuz nothing lasts......now she is refusing the oral steriods......:(

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