hydroxurea......

Hi Micky
Great going. Looks like he is benifiting from hydrea. I felt it took some time for hydrea to show benefits atleast it took Ahmed around 3 months. So it just cannot be hydroxyurea, probably it is a combined effect of all other things you are giving him wheatgrass, resveratrol, IP-6 etc...By the way are you continuing with Rodex.
Take care
maha

hi everyone.
maha yes we are still giving rodex as its just 3 drops after 4 days and since 1.5 year its been ok no side effect so im giving that still,

andy, well my son after a week from hydrea seem more energetic and now he has little extra plumpyness , littel chubby as what normal kids look ,
though he is vomiting now onces a day  or  some times not as might be because of hydrea.. as i read on internet but otherwise he is more happy then compared to before or like the 1st week when we did blood transfusion my son was like himself playing around otherwise before he just is in our hand and lazzy.

will do then next cbc in 1st week. again.

regs
micky

hey.

hb count today- 7.0.  TLC- SAME. PLATLETS - LITTLE DICREASE,  but hb is fallen then last time giving hydera regularly, well now again ups and down, nothing is steady for long time for me. its been 1 month on hydera now.

well now like ahmed i hope that hydrea might show good effect in time.

hope for good
micky

today hb count is 6.8.   more down. doctor said we should consider  1 blood transfuion next week if it goes down. my wife want to go for bt now as kabir is geting thiner  but he is active same as before. we are little confuse.

Hi Micky,

It's really a tough decision to make, but the the way i think is that hb of 6.8 is very low for a growing child,i know thal intermedias do live with hb that low,but who knows how they feel?

I can only wish you and your cute little son best of luck.

ZAINI.

Hi Micky
I feel its better to wait for a week as the drop in hb is not much. It could be just due to the change in hydration level. Also temperatures are soaring in Delhi, that too can account for a drop in hb. You have repeated the hb in just five days, was Kabir sick or showing signs of a low hb? Wishing Kabir the best of health
Maha

hi. maha, zaini

i m wating for 5 more days to see.  but your right wheather here had change to very much hot now its about 40.c  here so it might be reason to drop in hb aswell. but like zaini said  its good if we keep hb high so doctor does stoped us but in my heart i feel to go to blood transufson..  welll finaaly we are waiting  till monday to check hb..  we  check hb  by prick from fingure so that dosnt hurt   kabir .. much.   

regs
micky

Micky it is acceptable to give the hydroxyurea up to 9 months to be able to evaluate it and to know whether you will continue on it or not. My short expierence of 5 months is that the HB started to rise starting the fourth month only, but an accumulative increase in MCV started from the first month

hope this might help

manal

thanx manal for information . u gave hope for more time to us. please  confirm me that  now i m going for transfusion on monday.so please confirm me for  HYDREA  need to continue after bt? as after bt hb will be rise to 11 i think now is 6.8. we will give me 200ml blood.

so what to do. hydrea need to stop until hb comes down to 8? or not

regs
micky

Hi Micky
From what I understand hydrea is usually continued even after blood transfusion. Some majors on transfusion take hydrea as it increases the time between two transfusions.
take care
maha

For those interested in the effects of hydroxyurea on Hb over a longer period, please check the post at http://www.thalassemiapatientsandfriends.com/index.php?topic=1699.msg14097#msg14097

Olivia has been fairly stable for quite some time now. Give hydroxyurea a fair chance to work. It does show very positive effects on many patients, especially intermedias.

Micky i am not quiet expierenced about blood transfusions with hyrea, but what maha and andy said answered your question. Wish you all the luck

manal

Is it NECESSARY to get your hb as low as 8 before starting hydrea? You can't just start it anyway? with transfusions?

ZAINI.

12-5-8 hb report-  7.0  it was stable.. but  unfortunately. my son on suday while playing fell of and he had some bleeding from his mouth i was really scared and thought that hb will surely go down and its not good then we next day wnet for BT. as they did the test before bt for hb. as a routine and after 4 hrs report comes and was 7.0. we was really confused what we did is good or not (BT).  but as bt is under other thal. specialist  and she is against hydrea now as we didnt told her before for hydera. now she told us to STOP  hydrea as my son is 2 year only  and  we will start hydrea later.. now again what to do should be stop it or not..   confusee .

Hi Micky
Your post is very confusing. If your thal speciallist didn`t reccomend hydroxyurea then who did? Do not use these drugs unless advised by a doc who has good experience with thalassemia.
take care
Maha