Discussion Forums > Working Towards a Cure
hydroxy urea in transfused patients
zahra:
Dear Manal,
thank you so much for your prompt reply. It means the world. My sons fever was gone by the time he woke up so I didnt take him to the doctor. I hope it is over but if it comes again I will take him to the doctor. The fever was very low and he has stayed active and happy throughout.
Zahra
Manal:
You are welcome Zahra and i am sure he will be fine :hugfriend
Please keep in mind that we can not avoid the common colds or infections that our children are exposed to like any other children. Hydrea can be questioned if only things don't go the way it was and the frequency of infections increased, fevers with no reason...thiings that you are not used to or not common. Also bare in mind that these days the weather is changing and all of us are prone to infections
take care
manal
zahra:
Hi everyone,
4 weeks after starting hydroxy urea my sons Hb was 9.2 but he was not transfused. Next visit will be in a weeks time. The prescribing doctor had recommended letting the Hb drop to 8.5 before transfusing to give the hydroxyurea a chance to work but the 4 weeks after doctor said they will let it go down even below 7 if he is active and has no spleen or bone issues. Which is the right way? I couldnt see any real changes in his blood reports yet.
Zahra
Manal:
Zahra
I can not get your question.... but if you mean when to transfuse him, i think that since he is on hydrea, you should not transfuse him as long as he is active and doing and eating well. You should be monitering his spleen and body activity
Did you check his hb after using hydroxy or not yet?? Also did you check his fetal Hb before starting hydrea??
manal
zahra:
Dear Manal,
I understand your point of not transfusing now that he is on hydroxy urea so that the hydroxy urea would get a chance to work but the primary doctor looking after my son here had told me that initially they wont be trying for transfusion independence but spacing out the transfusions. He has been on regular transfusions a long time now so it is scary all over again to watch him get pale and weak. I really hope to get to transfusion independance but perhaps it will take quite a while to get there. The last time his fetal Hb was checked was before his first transfusion at age 6 months which is about two years ago. Since then he has been living on donated blood. Maybe they will check again once the last tranfused blood is ending its life cycle. I dont know how long that is but I suspect its more than the 4 weeks at the last check up.Till then I doubt there would be much fetal Hb. I worry also about the idea in some of the posts here that once the bone marrow has been surpressed so long via transfusions it wont start producing RBC's again. I hope that is wrong as hydroxy urea has been shown to benefit even Thal major patients sometimes and they must have been transfused long term.
His Hb after 4 weeks on hydroxy urea was just a little less than it usually is 4 weeks post transfusion at 9.2 but that was to be expected b/c of the fever he had anyway so no information there yet either. I guess its really just pray and wait for now.
Zahra
Navigation
[0] Message Index
[#] Next page
[*] Previous page
Go to full version