2nd month update on hydrea

Hello everyone

I would like to give you an update on Ahmad after one month of hydrea. He is takinf 3ml everday right before he sleeps to avoid the dizziness stomach ache.


*HB before Hydrea was 6.1 ( Ahmad had several infections at that time and his average is 6.6 without anything)
Hb after hydrea is 6.7

*Reticulocyte count before was 6.4% and after was 5.3%

*Bilirubin before was 1.7mg/dl and after was 2.1

*Total Leucocytic count before was 10,300/cmm and after was 6,800

* Platelets before was 450,000 and after was 389,000

* MCV before was 52.6 and after was 59.9

*All other functions of liver and kidneys are normal

The following is the results after two months of hydrea with the same dose:

HB decreased and became 6.2
Bilirubin decreased and became 1.6 !!!!!!!!!!!!!!!!
Reticulocyte count is the same 5.3%
MCV increased to 63.4!!!!!!!!!!!!!!!!!!!!!!!!
Total Leucocytic count increased slightly and it is 6,900
Platelets decreased to 287,000

* My important question is that why is the MCV increasing and the HB decreasing??
* The doctor is giving this trail 3 months to judge, but does these results indicates that Ahmad is from the patients who don't respond to the medicine or he should be given more time??
* I am so frustrated that i am giving my son a ''kind of toxins'' with no positive results

PS: A week before the CBC, Ahmad had a mild cold(cough and running nose, i guess from swimming in the pool everyday), but wasn't given antibiotics just medicines for cold

He is so active and everybody is saying he looks more healthy and brighter, though nothing new in terms of weight

Waiting for your feedback

Manal

Hi Manal,

I can understand and share your concern and frustration over the matter,as i am a mother too,and Ahmed's situation is hiiting me too, i don't know much technical details of hydrea,as we never gave it a try,i was wondering why his hb is going down instead of going up?what did the doctor say,what if hydrea won't work (GOD forbid) after three months also,will you consider transfusion?not regularly but occasionally?i know it's a tough decision and it has it's own consequences,but hb of six is not good for a growing child,though i am happy to know that he is active and doing well,but how can we determin if blood defficiency won't effect his body in the long run?plz i don't wanna be bothering or something but it's just i am worried about Ahmed's growth.anyways I wish him luck and every joy in the world.

Love Always,

ZAINI.

P.S Manal i am trying my best to get hold of the number of that hospital where DoctorIlham was doing the treatment,just to let you know.

Thank you Zaini for your reply, i appreciate your concern sooo much

I really wasn't convienced with Ahmad's HB reading, so the next day and after 20 hours, i tested his HB in another lab and the result was 6.6. I was confused but the technicion in the lab said that this is normal since they are two different labs with different equipments & kits and i should take the average.

Anyway, i took all these results to the hema. today and to my surprise she wasn't annoyed and she told me that this is the first time to see Ahmad so vital and not that pale to the extentent that she wrote in his file '' generally better''. She told me that the colour of his lips is much better.  His spleen is 5cm more than normal for his age and liver is 2.5cm more. She told me that we can extend the time to jugde hydrea up to 9 months and that the cold he had may be the cause of the decrease especially that MCV is increasing. She checked his weight and height and said it is in the 25th percentile ( still in the normal range for his age ).

By the way, she told me that she attended a conference that stressed on the importance of resveratrol as HB F inducer, so thanks to Andy who is ahead of  medical conferences

Please Zaini, if you know any thing about doctor Ellham trails let me know as i am really considering going through this process instead of hydrea.

Take care
Manal

Hi Manal,

I am very happy to see the second Hb reading was higher as it made no sense in the context of a rising MCV that the Hb would have dropped. One thing I would like to point out that is a positive is that the leukocyte count stabilized. This is very important as a continuing drop of white cells would require that Ahmad discontinue hydrea before you know if it is working. I think his color and physical behavior are good signs that the hydrea is helping and also that he is not having any harmful reactions to the drug at this time.

I think the topic of Hb induces is really just beginning. I believe we will re-discover many remedies that our ancestors used for many problems. China is actively pursuing the field of herbal Hb inducers. It is hard to get much attention to these possibilities in the west unless a drug company sees some big profits involved, but it is encouraging to see the Asian countries take natural treatment of illnesses seriously.

Hi Manal,
It seems that if Hydrea is not doing any good then it is also not making things worse. My advice will be to try it for another 2 months before arriving at any decision. It good that Ahmad's WBC and plateletes number are not that low.
Please make sure that Ahmad drinks lot of water/fluids with Hydrea coz that's the only way this medicine gets flushed out of the body.
BTW, I also started Hydroxyurea treatment last week. I will get my blood work done next week and will let you know. As per my doctor, it can take few months before the effect of this medicine is noticied.

All the very best to you!

--Hallu

Manal,
     I hope that Ahmad starts improving on Hydrea. You have done so much research, and have tried so hard to help your son - you both deserve some good news. I am praying that it makes a difference, and as always, thinking about you. Love, Jean

Thanks Andy for your reply. I too believe that there are lots of secrets in the old herbal treatments and its time for drug companies to give them the appropriate attention.


Thanks Hallu for all your wishes and advice. I hope that your body reacts positively to hydrea with no side effects and please keep us updated

Jean, thank you so much for your words and encourgement, they mean a lot to me

Manal

Hi Manal, I hope that Ahmad continues to improve.  I am glad that he is active and that his health has improved.  Big hugs & kisses for the little one! 

Sharmin

Hi Manal,

i can understand your confusion concerning the relation between HB and MCV.
For my understanding this means that the born marrow is poducing less red blood cells but the qualitiy of a single cell is rising up.

As i know hydroxyurea should rise up fetal hemogolobin. Did  the doctor made a test to proofe if it is happening in your son? I think this should be done to see if the drug is working in Ahmad.

God bless you

Thank you Sharmin for your wishes


Thanks Gabri for your reply . When Ahmad was first diagnoised his F HB was 11.6% and he took resveratrol for 82 days and the F hb became 13.8% with no reflection on the total HB. Then we started the hydrea. So i guess that after the 9 months we are going to measure it once more.

Take care

Manal