my son's surgery failed

my son relaps. his spleen removal failed, he had the surgery 2 month ago , his plateles jumped to 600k , one month after 400k , 6 weeks 380, then 360k tow weeks ago, and yesterday i had to take him to the ER , i notice pitichei on his chest, platelets are 35k, im so sad, i can't even go back to my work on monday, i know he lost some other options of treatments,he broked my heart,his oriantation was yesterday he was happy with his freinds, what can i say, needles to even talk,
sad mom

I'm sorry it didn't work. You knew that it might not going in right? I don't know particulars, but I'm sure there are other options. Praying for peace for you both.

thanks for reply, my son came back home, he was in another city (irvine) ca, he is crying , i don't even know what i say, how can i support him, he used to be strong, he used to be optomistic, but not anymore,

Does your son come on to this website? If not, why don't you suggest that he come and read these boards and maybe post a message for himself. Maybe if he hears from other people who are living with it - have been living with it - will continue to live with it - he might feel supported and eventually develop some hope.
I know that as his mother, you also offer a lot of support to him - but it's just different talking to people who are actually going through it.

It's just a thought, but having this site and going to a few of the support groups has really made a huge difference for me.

How old is your son?

my son is 17 , his oriantaton to uci was yesterday, he is an active boy , sports lover, but what can i say, im so deprssed, i don't know what is next

Sorry it doesn't seem to have worked for you, but it was always a possibility that it wouldn't work, You need to just keep your head up and stay strong, i understand your upset and depressed that it didn't work, but just think at least ITP is something he can live with. There are others with worse off things then ITP, i hope you can find something that works for him.

Just remember it's one day at a time and many, many people are living very happy and fulfilling lives, even with ITP.

I'm so sad for you, but hang in there. I've been low before myself, but then I realize that everyday we get a change to start over with another new day, and that day can be filled with peace if we allow others to help us. Your son still has other options for treatment it seems, and, as others point out, live just fine on lower platelets. Bless you and your son.

hey wait a minute now .I,m leveling off and i had my speen out since september 10th 09.I have struggled thru several bouts and 1 hospitalization.dont fret as of yet.Now my last 3 test have gone up(211) and i,m no longer on the steroids .now i admit its not very long since i,m leveled off 1.5 to 2 months.but good none the less.I have gone and going thru hard times since this diagnosis .But finding this forum has helped me.

steve,are you still on ctroide, your count is 211k this is good,

You know...as a mom of an ITP child myself, yes...it is sad when something doesn't go the way we want it to for our children. But, as a parent, you need to try to be strong for your son. The stronger you are for him, the stronger he will feel about himself.

Also, 35 is STILL a good count. It is still considered a SAFE count. That is really what all of us aim for; to keep our children and ourselves in the safe range if it is possible. The best thing you can do for yourself and for your son is to learn how to go with the flow. Expect the worse, but hope for the best. You can be disappointed, but no need to be depressed because he is NOT out of options. The other thing is that you could be feeling depressed for no reason at all as this could just be a one time thing and he could bounce right back up tomorrow. Even if he is above 20 from here on out, he is still better off than if he was below 20 all the time and having bleeding symptoms.

I also hope he will sign up on here himself. I am going to encourage my daughter to start posting on here once I see a bit more "traffic" in the teen area. I think FB is probably a better area for her to connect though. Hang in there and be strong for your son! Remind yourself that you are doing everything possible to "try" to keep his plaetelet count up and sometimes you will succeed and sometimes you won't. ((Hugs to you and your son!))

thank you so much for your reply and your support , i try to be strong as i can , today im better than yesterday, i thought i can't go back to work ,but i diceded to go back for him , he has to finish his collage, he is smart boy , i hope his count dosn't go below the safe count, but it alwase go to 2k befor the surgery , i will do another cbc tomorow and see, it will be a mirical if his count be up , i don't look for mircle but i just hope that he dosn't need more treatment, he hate ctroide, he was on it for one year, or more ,

my son has a syst in his arm long time ago , i asked if this make his platelts dowen , they said no correlation,they said he dosn't need to even do it , and one month ago he has another one on his mouth,he has to go to oral surgen to do it for him tomorow , but i don't know if he still can do it or not , since his count is low, if somebody know somthing about that i will be appriciate it

i am off all meds for the time being...is this an acranym (ctroide)

did you had a splleen removal surgery steve?

im sorry you said you had the surgery 09/ what was your count right after the operation and when it goes down what medication they gave you on the hospital. thank you stevk for your reply

I went as high as 110k they worried about me strking out,but after several complications I dropped as low as 123.after that i went down to 38 43 then go up then the cold sore put me under 20 in the hospital i went and prednisone,they were very dark days..then had trama to my body in the form of a 650 lbs steel plate fall on me .broke arm and mcl messed up and as well as deep bruisng...steroids again now i have come off and so far so good.i go for more tests 2 weeks.I hope that helps.

but to your question yes sept 10 09 spleen removed

thank you stevek , do i still have a hope that my son's count goes up by itself, he has no flue or cold, i have no idea why is this happened , i'm worry that he has production problem now, any way we are going tomorow to the hospital and see what we have to do next, thanks for your reply

Farida - a lot of people with ITP do have production problems. It's common.

I'm so sorry that his counts dropped again. That is sad. But life can and does go on with ITP; don't let it beat you down.

Hello Farida,
Sorry to hear the news about your son. I don't know what to say except try to hang in there and see what your hematologist suggests. Sending positive energy your way.
To update you on me. Four months post splenectomy my count is 113k...yeah yeah. As you know I was given Prednisone, Rituxan, NPlate, Promacta, IVIG, Danazol, Imuran. IVIG worked best for me but without treatment count was in the 2-10k range. I am cautiously optimistic and thankful for this remission.

thank you rere for your reply, i didn't update on my son's count,his count dropped on last saturday, he was in ER IRVINE hospital. monday he back to los angeles , i took him to ucla , cbc goes up to 88k then tow days later to 167k thank GOD, dr said may be it was viral infection and its gone,

Hi Farida, Oh boy what a relief for you. I am so happy to hear the news that his count is on the upswing. Best to you and your son. ReRe

Hi Farida, Oh boy what a relief for you. I am so happy to hear the news that his count is on the upswing. Best to you and your son. ReRe

THANK YOU RERE , I HOPE THE BEST FOR EVERYONE,

farida glad to hear they are on a up swing...mine dropped to 124 and now at 128.I can live at these levels.no steroids woohoo

I am sorry for you. It is hard being the person w/ it but as a mom I would think harder to see your child suffer. I have done extensive research on audio immune desease and whole food diets..etc. A huge way to build up our bodies to fight the deseases. Hang tough...Take care....a friend.

thank you mrsfish7 ,

any updates? hopefully positive updates.

If positive, i think its time to edit the title.

i would like to update the title , but today my son's platelets dropped again to 24k last week it was 430k , i could remove the topic too but i don't know how can i edite the title, thanks any way, i would like to have a positive post,by i could'nt understand what happened with my son, why his platelets dropped again to 2k , and i have to take him to the hospital , he had ivig , to bring his count up,he stayed two nights on the hospital, so sad,

wow, thats a wild roller coaster ride....