Evaluating hydroxyurea after one year

Manal,
Just read this posting. I am very happy to see that AHmad is doing wonderful and his iron is also in normal range. All the credit goes to your continued hard work and vigilence. Very happy for you....

Bostonian, thank you so much for your kind words....but actually all the credits goes to Andy and everyone here in this wonderful place. I just follow your advices backed with all your continous support

manal

Hello my friends,

A quick updade about my son...to remeind you with his treatment, last January we increased his dose of hydroxurea to 500mg daily (23mg/kilo) and L-carnitine was given daily instead of 5 days per week
His results before and after the change in dose:

HB                   Before 6.7          After 6.7
RBCs count       Before 3.82         After 2.80
Hematocrit        Before 24.7%     After 19%
MCV                 Before 64           After 67
Ret count         Before 8.5%       After 3.2%
Bilirubin             Before 2             After 1.8
WBCs count      Before 5,100       After 5,300

The doctor lowered the dose to 15mg/kilo for the hydroxyurea and L-carnitine is back to 5 days again and i am really comfortable for this change because we never had the RBCs count that low, it is always in the range of 3.5 to 3.8 so i am afraid that the marrow is very suppressed with no increase in the HB.... Am i right Andy??

The doctor still didn't lose hope of hydroxy with my son because of the single increased he had last year, but she said we are trying to fine tune the dose in this stage, wish us luck


The doctor was happy with the ferriscan result and the echo and the ECG were normal too.
The spleen is 5 cm large and liver is 3cm large

Before my next visit, i am thinking of doing an HPLC to check the level of fetal Hb too

Manal

 

Manal,

Yes, some fine tuning is needed. The RBC and retic count drops are a little more than what's desired. Does he have a good appetite?

Yes Andy, his appetite is okay and sometimes vey good but he hardly gain weight

manal

Hi Manal,

I just posted in the about hydroxyurea and nitric oxide in the Documents section. Reading the results of the study made me wonder if you should experiment with different brands of L-carnitine or try it in combination with another supplement. It might be worth thinking about trying to see if you can any change in Hb. One other little piece of information I ran across mentioned that L-carnitine worked better when the subjects ate a lot of carbohydrates.

Thank you Andy do much

I read the post in the document section and will see if there are other brands here in the market that induces NO in blood like what you mentioned

L-carntine, L-arginine and combinations of Alpha Lipoic Acid and Acetyl L-Carnitine, or L-arginine and lysine

I was too interested in the powder Bobby is taking and wheather it is suitale for children or not???

http://www.bodybuilding.com/store/bsn/xplode.html

manal

Way down at the bottom of the label, it says

This product is only intended to be consumed by healthy adults 18-50 years of age.

Yes Andy i saw it but some of the supplements we use like resveratrol for example, have the same note too

used by 18 years and above

I guess it is really difficult to decide

manal

Because this supplement has a proprietary blend and we do not know what is in that, we have no way of knowing if it's safe for a child. Being that it's a bodybuilding product, I would say it should be adults only.

Thanks Andy, it better be safe

What was said on the conference in Berlin is that all thals should try hydrea. (I think trying it for a year or so). Does someone post already about the important things that were told in Berlin?
Also I have heard people like us should eat something every two hours (to keep the energy up to date) and one glas of water every 2 hours (although that was more said about sc).

I hope it helps a bit.

A quick updade about my son...to remeind you with his treatment, last January we increased his dose of hydroxurea to 500mg daily (23mg/kilo) and L-carnitine was given daily instead of 5 days per week
His results before and after the change in dose:

HB                   Before 6.7          After 6.7
RBCs count       Before 3.82         After 2.80
Hematocrit        Before 24.7%     After 19%
MCV                 Before 64           After 67
Ret count         Before 8.5%       After 3.2%
Bilirubin             Before 2             After 1.8
WBCs count      Before 5,100       After 5,300

The doctor lowered the dose to 15mg/kilo for the hydroxyurea and L-carnitine is back to 5 days again and i am really comfortable for this change because we never had the RBCs count that low, it is always in the range of 3.5 to 3.8 so i am afraid that the marrow is very suppressed with no increase in the HB.... Am i right Andy??

The doctor still didn't lose hope of hydroxy with my son because of the single increased he had last year, but she said we are trying to fine tune the dose in this stage, wish us luck


The doctor was happy with the ferriscan result and the echo and the ECG were normal too.
The spleen is 5 cm large and liver is 3cm large

Before my next visit, i am thinking of doing an HPLC to check the level of fetal Hb too

Dear friends
The above quote was to remind you of my last situation.

Yesterday, i had a visit to the doctor after three months. During those 3 months we lowered the hydroxy to 15mg/kilo and L-carnitine was back to 5 days/week.

I am so happy to tell you that Ahmad Hb is 7.7 (increased by 1 gram), i am soooooooo happy (I know this reading is so low to all of you , but it is the highest i have ever seen and wish i can see higher and higher)

Anyway, below I am comparing his results according to the dosing
                  HU 17.5- 20mg/kg               HU 23mg/kg                    HU 15mg/kg
                 +L-carnitine 5/week                +L-carnitine daily             +L-carnitine 5/week  
                    (feb2009- feb2010)       (one month only)             (last three months)
HB                    6.7                                6.7                                 7.7
RBCs count        3.82                              2.80                                3.69
Hematocrit         24.7%                           19%                               24.1%
MCV                  64                                  67                                 65.3
Ret count          8.5%                             3.2%                               8.3%
Bilirubin              2                                   1.8                                  2.1
WBCs count       5,100                            5,300                               7,500


So his readings today is the one in the third column.

Andy, I was wondering........
1-Why the reticulocyte count is not decreasing
2- We have been for one year on a dose between 17.5mg to 20mg/kilo and i saw no change in Hb, do you think that taking the 15mg/kg, is reason for the increase in HB although all other readings are the same

When my son was diagnoised in 2006, the HPLC showed 11.4% of fetal Hb.

Yesterday, i did another HPLC and found that the fetal HB is 27.5% (after using HU)

Hopefully, i will do another one after three months, to check it again, but during this time i will be giving my son all possible natural  fetal HB inducers (resveratrol, carao, aloe vera, wheat grass) in addition to HU in order to see if they will help all togather or not

As for kidney and liver functions, they are normal, thanks God
His weight is in the 25th-50th percentile
His height is in the 50th percentile

Love you all

manal

Manal,

That is wonderful! I am so happy for Ahmad (thank god).  I hope his hg remains high and that he continues to thrive:) 

Sharmin

Thank you Sharmin for your wishes. I hope so too

Manal