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|Post 6 - By: Pat - Post Date: 9/20/2012|
|Now in week six of diagnosing and treatment of our first son, Curt, who will be 3 in December.
Levels have gone from 2k at first diagnoses up to 31k 12 hours after IVIG to 8k after 10 days (with Marrow Biopsy)to 21k after 2 days of Pred to 15k after 10 days of Pred to 48k after 14 days of Pred to 17k after 21 days of ratcheting down Pred. We now are at the beggining of a week of no steriods to see what outcome will be.
My wife and i are tired emotionally, but luckily the boy exhibits outward signs that let us know where his level is (I actually guesses this morning's reading right due to apperance of bruising.)
Thank you for this site to build up my strength. I hope that any other new parents who are here might take solace in the fact that others go through it and feel the same spectrum of emotions......and thats its natural to feel them all. All I want in the world is for my boy immune system to hit the reset button and I will never complain about life again.
|Post 7 - By: ely choufani - Post Date: 9/10/2012|
|i have a 24 yo woman with chronic ITP and chronically low counts (<20k), refractory to steroids, now 6 weeks pregnant; what would be the best tx options for her?
|Post 8 - By: kathy michael - Post Date: 9/3/2012|
|my grandaughter was diagnosed with ITP sixteen months ago at the age of 7 .She has been on Ivig, steroids and 4 rounds of Rituxin.
I've read about health benefits of honey.
Could it benefit or hurt her platelets
Also,she drinks cow's milk and eats(sometimes )
hummus with Tahini. Should she stop eating both foods?
I'd appreciate any advice you could give me.
|Post 9 - By: Cindy Mansfield - Post Date: 8/26/2012|
|My 27 year old daughter was diagnosed with TTP the beginning of June. She experienced many of the same things as the story on Ralph. She has gone through the 4 week of Retuxin (chemo) therapy. She was having Plasma treatment 3 times a week but due to low LDH levels has been having plasma treatments 5 times a week. Dr. Ebstein at Fort Wayne Regional Medical Center was her hematologist is now referring her to
Dr. Mehta near Carmel, IN
I have found this website very helpful and
only wish were lived closer to Oaklahoma. Concerned Mom from Goshen, Indiana
|Post 10 - By: Sandy O - Post Date: 8/8/2012|
|Does TTP-HUS come on suddenly with intense dry heaves and back pain - had plasma exchange for 7 days and kidney dialysis for four days every other day. I am home now but still no definitive answer to what caused it. Can the anti-biotic Rimfampin cause HUS? Is it possible I will never find out? This happened on 7/5/2012 and I am now recovering at home. Still have a little lower than normal red blood cells - is this normal
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