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Tim, 9k, IVIg and SICK

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14 years 2 weeks ago #21405 by lucidawn
Tim, 9k, IVIg and SICK was created by lucidawn
He's got the horrendous IVIg headache, puking, fever. I'm dosing him with oxycodone, benadryl, zofran, tylenol round the clock. He plans a trip this week, and a TATOO which is why he begged for the IVIg. He's pretty sick right now.
Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

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14 years 2 weeks ago #21407 by tgurin12
Replied by tgurin12 on topic Re: Tim, 9k, IVIg and SICK
If he has got a fever above 100-101, I would call the doctor. When I was WinRho, that was what they always told me, especially if he is having all the other symptoms.

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14 years 2 weeks ago - 14 years 2 weeks ago #21430 by lucidawn
Replied by lucidawn on topic Re: Tim, 9k, IVIg and UPDATE
Soooooo, today, three days after IVIg tim is at 177k! Interesting, considering he's refractory to IVIg. He also had NPlate on Wed, so its the combined effect, I'm sure. He's getting 1mcg today to keep him up for the week. Will be interesting to see the counts next week.
Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

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14 years 2 weeks ago #21444 by tacmom
Replied by tacmom on topic Re: Tim, 9k, IVIg and SICK
That's a great response, but yeah...sounds like the combo deal! Hopefully Tim will tell the tattoo artist that he has ITP and maybe they will say they can't do it. But if he wants it bad enough, he'll probably go to someone else and not say anything. Do you have Amicar on hand? Maybe if there is excessive bleeding, he can take that to help minimize the bleeding afterwards. Good luck! Hard to believe our kids are growing up! Makes me sad! Hope next week's numbers are still good!
Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

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14 years 2 weeks ago #21450 by alisonp
Replied by alisonp on topic Re: Tim, 9k, IVIg and SICK
OK, so just out of curiosity............what and where is the tattoo going to be?

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13 years 11 months ago #21998 by lucidawn
Replied by lucidawn on topic Re: Tim, 9k, IVIg and SICK
The Tattoo is headed for his forearm...he hasn't gotten it yet...way too low on counts.
Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

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13 years 9 months ago #24268 by Cpena
Replied by Cpena on topic Re: Tim, 9k, IVIg and SICK
How does he feel with the Rituxan? Any serious side effects? My doctor suggested we try that next if the Nplate doesn't work.
Diagnosed- Jan 2012 (1k platelets)
WhinRho- Feb 2012- didn't work (3k)
Steroids- Not an option
N Plate- March 2012- first three doses didn't work (3k)
Splenectomy- March 20 2012. I haven't been stable, but we are trying N Plate again. It works for about a week and half.

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