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Reply | Forward Message #3991 of 5559 |
RE: [EvansSyndrome] alex

Why did u switch doctors?


>From: "aamom4ever" <aamom4ever@...>
>Reply-To: EvansSyndrome@yahoogroups.com
>To: EvansSyndrome@yahoogroups.com
>Subject: [EvansSyndrome] alex
>Date: Thu, 08 Dec 2005 19:48:53 -0000
>
>i am updating on alex well we are about 9 weeks since our last riutuxon
>treatment his hemoglobin is stable since we started at 10.8 his
>platlets are going up and down he is at 56 right now we are still being
>patient BUT we are in the hospital now for another reason alex has a
>line infection we are in the hospital on antibiotics this is the first
>time since he had the line that we have ever had any trouble. any info
>anybody has ever had with an infection from their central line will be
>apprectated. they want him to have a full 14 days of the antibiotic
>since his negetive blood culture. we are also in a new hospital which
>takes some getting used to we changer from long beach miller childrens
>hospital to choc orange county we heard great things about dr diane
>nugent here from dr bussel in new york so we are here the change is
>hard after 4 years at the other doctor but we have positive thoughts.
> mindy (mom to alex)
>
>
>





Thu Dec 8, 2005 11:38 pm

luvinstormz
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Message #3991 of 5559 |
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i am updating on alex well we are about 9 weeks since our last riutuxon treatment his hemoglobin is stable since we started at 10.8 his platlets are going up...
aamom4ever
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Dec 8, 2005
7:49 pm

Why did u switch doctors?...
sharon aurger
luvinstormz
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Dec 8, 2005
11:38 pm

Mindy, Has Alex ever tried vincristine. I know he was on cyclosporine, but I could not remember what else he had tried. I am thinking of you. Amy (Aidan...
Amy Walsh
smlybly
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Dec 9, 2005
12:15 am

... and he went off the vincristine and stayed on the cyclosporine for awhile longer by itself. he has been on steroids for several years and also has tried...
aamom4ever
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Dec 9, 2005
6:44 pm

Mindy, Have you tried vincristine this time for his platelets? Maybe if it worked for his hemoglobin it along with cyclosporine and steroids would work for...
Amy Walsh
smlybly
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Dec 10, 2005
12:43 am

well this is an update on alex he has been doing great since the riutuxon but now we are in the hospital with another line infection! he had a line infection...
aamom4ever
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Jan 19, 2006
10:17 pm

My son Julius (age 5) had his lines put in in july 2005 and in November got an infection in the line and because he was done with the vincristine treatments...
diana milone
dianamilone
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Jan 19, 2006
11:48 pm

well just an update alex had his broviac line removed on friday he is doing great he has just a regular iv until thursday to finish the antibiotic we will go...
aamom4ever
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Jan 24, 2006
10:36 pm

hi mindy, just a reminder that it took our ben a full 3 months for rituxan to work for him (we had almost given up hope)- he had platelets less than 10k for 5...
Shari Miller
sharim61
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Jan 25, 2006
12:27 am

Hi Mindy, That's awesome news! Thanks for keeping us up-to-date. We'll keep Alex in our prayers for continued success with the Rituxan! Debbie (45 w/Evans)...
sdkkadamo@...
sdkkadamo
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Jan 24, 2006
11:28 pm

Mindy, Thanks for the update with the good news hope you have a great spring ! Betty Mom to Paul 19/evans...
bettanmic@...
bettanmic
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Jan 25, 2006
3:19 pm

well we are going home today after 14 days in the hospital for the line infection. we are excited they did one more cbc and his platelets were at 278,000 and...
aamom4ever
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Jan 26, 2006
6:59 pm

Hello all, I am writing with an update on Alex. We went to the doctor yesterday for counts and all his counts are still in the normal range since the Riutuxon...
aamom4ever
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May 26, 2006
6:00 am

Hello - I just started treatments using Rituxon - I just wanted to get some feedback on how well it worked for others. My normal treatment is Prednisonse...
Nichole Tardy
sabre485
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May 26, 2006
12:54 pm

my 15 year old son went through rituxan treatment 14 months ago. although it took over 3 months to work, he has been fine ever since! good luck, shari (mom to...
Shari Miller
sharim61
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May 26, 2006
1:20 pm

Rituxon has worked for me i have had it twice this past time it lasted 26 months and now i have relapsed. I will start next week i think rituxan again to...
Nicholas Theofanis
nikoth2f
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May 27, 2006
2:59 am

Thanks for the update! A 2+ reading on the Coombs test is a mid range reading. The lowest is 1+ and the highest is 3+. This strength is subjective though...
Grace Hill
rghill1diabl...
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May 29, 2006
8:02 pm

Nicole, As you will find on this site what works for one doesn't for another, my son did not have success with the Rixtuin but others who had it at the same ...
bettanmic@...
bettanmic
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May 26, 2006
1:34 pm

Hi everyone I am updating on alex. Im worried and taking him in today for counts he is not due for another week but his lips look pale to me! I feel so sick...
aamom4ever
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Aug 1, 2006
2:28 pm

Mindy, We will be praying for Alex today. Please let us know as soon as you have the results. Grace (Katie 14 with Evans) aamom4ever <aamom4ever@...>...
Grace Hill
rghill1diabl...
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Aug 1, 2006
3:34 pm

Mindy, Im so sorry to hear that Alex has to go back. I hope that his counts are ok. Please let me know when you find out. I convinced Madison's doctor not to...
lisa shoenfelt
lmshoenfelt
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Aug 1, 2006
9:32 pm

Well my instinct was right! His hemoglobin is at 7! They started him on steroids again i never wanted steroids back in our lives but i dont have alot of choice...
aamom4ever
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Aug 2, 2006
2:55 am

HI Mindy, I'm so sorry that Alex is back on steroids. I know how I dread that happening to Katie. Alex's symptoms were probably not a virus, but were a...
Grace Hill
rghill1diabl...
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Aug 2, 2006
3:13 am

mindy, Are his platelets down too? Lisa aamom4ever <aamom4ever@...> wrote: Well my instinct was right! His hemoglobin is at 7! They started him ...
lisa shoenfelt
lmshoenfelt
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Aug 2, 2006
1:00 pm

... elevated. ... right! His hemoglobin is at 7! They started him ... dont ... doctor at ... that ... a ... was ... a ... about ... went ... is...
aamom4ever
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Aug 2, 2006
2:51 pm

Mindy, We will keep Alex in our thoughts and prayers. Erik too experienced a fever and vomiting when his platelets dropped. Please keep us posted on how he...
Clark Brigger
chbrigger
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Aug 2, 2006
12:03 pm

Well hello to everyone, I havent posted in some time. My son is alex he is seven and was diagnoised wiht evans at 1 year old. We went for one full year in...
aamom4ever
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Sep 28, 2007
9:45 pm

Hi Mindy, I just took some time to pray for Alex. I know exactly what you mean about it feeling like you are dreaming. We have all been there. When Katie...
Grace Hill
rghill1diabl...
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Sep 28, 2007
11:00 pm

Hi Mindy. I dont know if you remember me but when my daughter was having a really hard time with the Evan's lsat year, you gave me a lot of help about the...
lisa heisterman
lmshoenfelt
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Sep 28, 2007
11:40 pm

... sent our address to you at your e-mail address!! Mindy & Alex ... having a really hard time with the Evan's lsat year, you gave me a lot of help about the...
aamom4ever
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Sep 29, 2007
5:54 pm
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