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 about this he has been doing soooooooooooo great
since almost a year i cant believe it. We havent had a red cell
problem for about 2 years is has been his platlets since then. Every
year at this time it is SO strange but around his birthday which is
August 18. Im really scared the last time his hemoglobin started we
had to get his central line and start chemo which was the vincristine.
Im just praying we dont have that happening again but im going in for
counts today just to see.
Mindy (mom to Alex 5 1/2)
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 ...
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...
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@...>...
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...
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...
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...
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...
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...
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...
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...
... 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...
... THANK MADISON SOOOO MUCH FOR THE CARE PACKAGE ALEX WAS JUST SO THRILLED!!! IT HAD JUST THE PERFECT TIMING HE REALLY ENJOYED IT AND AS SOON AS HE IS...
Mindy, I am glad that he received it and liked it. I remember when Madison was really sick last year there were so many wonderful people who mailed her...
Thank you so much for the replys!! Alex is stable his hemoglobin is at 6.8 today 6.9 yesterday and 7.0 the day before after the blood transfusion. He has one...
Mindy, Glad to hear things seem to be going a little beter. What are his platelets at? I am a strong believer that chlorine plays a role in Evan's Syndrome....
Thanks for the messages again!! WE GET TO GO HOME!!! he is still holding for the 4th day t 6.9 on his hemoglobin we will go into the office tomarrow for...
Just a suggestion, look into converting your pool to a salt water chlorinator. The only chemical you use is regular table salt NO Chlorine at all. We built a...
Hi, just to even up the odds a bit, I don't think that swimming pools had anything to do with my son's getting Evans or any of the bad times he has had with...
On the posting about chlorine, my son in the past was ill in March and Feb, so no swimming, but this time, yes, he swam most of the day Saturday in the pool....
I hope your son feels better soon.... My son, almost 15, is having a rough time with counts dropping right now... It happened at the end od August, oddly...
hELLO EVERYONE, JUST UPDATING ON ALEX. WELL WE HAVE BEEN OUT OF THE HOSPITAL FOR A WEEK NOW BUT HE IS STILL DROPPING ON HIS HEMOGLOBIN. THEY STOPPED THE...
Prayers are with Alex, you, and your family... In my experience, my son's went to 4.5 and his doctor said the has had them as low at 3.5. He told me since my...
hello everyone just an update on alex. His white cells are up!!! 4.6 and his red is 11.1 so he is back at school!!! we are so happy and we are formally...
hello everyone this is mindy, alex's mom havent been on in quite awhile Alex is having his famous summer drop just like clockwork his platlets are at 4,000 the...
I'm glad to hear that Alex is a candidate for NPlate. I have spoken of this new treatment before, but I have a little more insight into it now. NPlate is a new...
Thanks for the response about NPlate we are waiting for the insurance approval. Our doctor is excitied about this medication, she does not want to repeat...
 Hi..Sorry to hear about Alex. My granddaughter Madison is Alex's age(diagnosed with ITP/Evan's Syndrome one week before her 5th birthday) and we have...