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Count 5000 and school

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14 years 1 month ago - 14 years 1 month ago #17823 by CathyW67
Count 5000 and school was created by CathyW67
Taylor (18 years old) had her second round of Rituximab today and her count was down to 5,000. She had an IVIG on Sunday and it did nothing for her. They are stopping the IVIG since she is non-responsive. My question is am I being a total freakout because I do not want her to go to school with a count of 5,000. Three weeks ago, the doctor distinctly said that she should not go under 10,000 and now today she says she is okay to go to school. I am not at all comfortable with it. Am I being unreasonable or should I let her go?
Any advice?
Cathy
  • 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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14 years 1 month ago #17828 by Sandi
Replied by Sandi on topic Re: Count 5000 and school
Cathy - I answered in your other thread but I'll clarify things a bit better here.

When someone is first diagnosed, the doctors tend to be a little more cautious about lower counts and activities. As time goes on and they have a patient who isn't responding, they sometimes loosen up a bit, realizing that people cannot just stop their lives. They also have time to see how the patient's symptoms are and whether or not the person seems to be handling the lower counts. Many people do just fine. People with ITP tend to have larger platelets than people without ITP, and those platelets work well. There are also "platelet microparticles" which are tiny fragments, too small to be counted. People with ITP have more of those than the general population, and they also help with clotting.

If her symptoms are not too bad and she has her doctors okay, school should be alright. I worked with counts of 3 while I was having Rituxan.

Hopefully, she will respond soon. Rituxan can take some time - weeks. On the day of my third infusion, my counts were under 10. On the day of my fourth infusion, they were 150.
The following user(s) said Thank You: CathyW67
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14 years 1 month ago #17836 by Ann
Replied by Ann on topic Re: Count 5000 and school
At age 18 she should be sensible not to do dangerous things unlike the younger children who still climb trees and play head ball and so on. I just carry on whatever my count. I worked with counts of 1 and 2 many times even though I do bleed a bit at those counts. She should be fine.
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14 years 1 month ago #17894 by Gort
Replied by Gort on topic Re: Count 5000 and school
You aren't being unreasonable at all. 5 aint 30. Some of us bleed at those counts, some don't. Until you know what counts your daughter can handle, caution is warranted.

For me, when my counts fall into the single digits, I get real serious about seeking treatment. I've never found a treatment that works (except for IVIG, which works for about 72 hours), but in single digits I pound on the doctor's door. And I stop riding motorcycles and climbing mountains.

--Steve
Living with ITP since 1967.
"Abandon negative action; Create perfect virtue; Subdue your own mind. This is the teaching of the Buddha."
The following user(s) said Thank You: CathyW67