Thank you so much Sherri, I am going to talk to his Dr. about it right away. What dose is he on? Mike has been on 15 mg of pred. 2x a day and his platelets...
Thank you Dawn... I am amazed at how well Mike deals with Pred. I am going to do a bit of research on the cellcept though and present it to his oncologist. I...
Yeah!! I am happy for the neg. Thats great news!! Hugs, Tina Hughes Mikes mom 15 yrs ... could use some input from members of the group. ... years. Last...
Jean ~ I appreciate your faith. Isnt it wonderful to know that someone who is "bigger than the boogie man" (from Veggietales :)) is taking care of us? I give...
So for you the splenectomy did work? I have heard so many things about NOT doing one because they just dont work. Anyone else have any ideas or experiences...
Dear Tina, My son, Nick (now 20), had a splenectomy over three years ago. His blood counts are still stable. I have no idea why it worked for him and doesn't ...
Marlene M M Pritchard
opca@...
Dec 4, 2004 2:33 pm
3429
Tina, Ben takes 1 gram (2 500 mg capsules) twice a day. It is alot but it works... good luck and keep researching! Shari (mom to Ben 14 w/ evans) ... ...
Hey everyone I just wanted to let everyone know that I talked to Lou the other day and Katie is still hanging in there. I cannot imagine the immense suffering ...
Dear Jenn, Thanks for updating us on Lou,Katie and Bill. I received a message yesterday that posts from our site had been bounced back as unreceivable by my...
Marlene M M Pritchard
opca@...
Dec 5, 2004 9:21 pm
3433
Thank you Sharri :) I am going to be calling his oncologist very soon. I am going to try to get Mike up to OSU (I think) in Portland Or. They wanted to see...
Tina, I certainly understand the insurance issue. Ben has even raised it and I don't want or need him being concerned about that! The pre-existing condition...
Dear Group, I wanted to just say that I am "thankful" for all of you and all the love, support and prayers that we can offer one another. Thanks for keeping...
Hi Jenn ~ I had read your update on Katie and then saw your signature line about your daughter passing a few short months ago. How are you doing? It really...
Betty~ It is great news that Paul is doing so well. I pray he stays there. Thanks for the update. Hugs, Tina Hughes Mikes mom 15 with Evans ... all the ... ...
Hi Tina, Not bad - whites and reds normal, platelets 102k. He is down from 160 4 weeks ago but that count was abnormally high for him (highest in over a year)....
Hi all, I don't post often but do read all the messages that come through. My 12 year old son was diagnosed with autoimmune neutropenia and ITP approximately 6...
... is ... in ... that ... to ... that ... to ... test ... just ... so ... at ... times ... we ... anyone ... you ... Thanks for your words and yes GOD is...
I start basic training when they are about 3 months old and advance training (K9) when they are 10 months old. How much longer do you have over there before...
sorry guys ...this one was supposed to go to my brother in Afghanistan but my computer was messing up and it accidentally sent to you all. Jenn ... From:...
Sheri, that is great news! I was excited to hear that Mikes blood cound was really good, especially considering he had a double ear infection. His platelets...
Thanks Susan :) Not sure what that all means. I guess it means that if you have ES, as they call it, than you probably should be tested for ALPS? Can anyone...
I forwarded the abstract to Ben's hemotologist at Tomorrows Children's Institute. He thought it was worth testing Ben just to rule out any possibility of ALPS....
Shari ~ Please let us know how the testing goes. I really need to get busy with the cellcept research. Thanks for letting know that Ben is doing good. Hugs,...
hi tina my daughter sara was diagnosed with evans at 15 and is now 18 it sounds like the same issue your son has with the platelets. she went the steriod round...
Hi All, My 3 1/2 year old grandaughter was diagnosed with ITP 5 months ago & tested coombs positive earlier this week. She was treated with WinRho when first...
cndyfoote <cndyfoote@...> wrote: Hi All, My 3 1/2 year old grandaughter was diagnosed with ITP 5 months ago & tested coombs positive earlier this week....
Thanks so much. I am glad to hear that there are other options. I am keeping a note book :) I am also glad that your daughter is doing well. Hugs, Tina...
