Evaluating hydroxyurea after one year

Manal,

Th retic count should be higher than normal at this point because there has been a spike in Hb and HbF, and this would be indicated by an increase in new red blood cells being formed. I think dropping the hydroxyurea dose has had a positive effect and perhaps a happy medium has been reached where there is less bone marrow suppression, allowing an increase in HbF production. However, I think it is more than that, as the L-carntine and magnesium (you are giving magnesium, correct?) in combination with hydroxyurea are working as expected. If possible, you may want to try to duplicate the homeopathic treatment that little A has been receiving to see if that can also boost the HbF. It has been shown that all the various Hb inducers have a cumulative effect, so please do add the other inducers.

One lesson here is that patience is required with hydroxyurea. Even though some effect may be measured in months, the real value of hydroxyurea becomes more apparent in the second and third years of use.

Andy,

Do you think dropping the dose more will have a better effect??

As for the magnesium, i used to give it regularly except for a while till my new shippment of the supplement arrives

Definetly i would love to try the homeopathic treatment, but i think that Sharmin's doctor won't give his ''recipy'' through corresponence and unfortunatly, we don't have this kind of treatment here (though there are some doctors but working without a lisence )

 

Hi Manal and Andy,

i will be speaking with the homeopathic doc soon.  He will probably give me the ingredients in the meds when I meet with him.  Unfortunately I have not been able to see him as my son's radial fracture seems to have slipped after recovering.  He will now require further treatment to his arm.  We will see the orthopedic surgeon tomorrow to determine what method of treatment he will require.  I am praying that the recovery will not take too long so that he can get back to playing the sports he loves. 

Sorry for the delay, i will post the ingredients as soon as we get this issue sorted out.

Best,

Sharmin

Sharmin,

Wish little A a speedy recovery.

Is he still on steriods??? I think they don't help in healing fractions, correct me if i am wrong

Give him a big hug for me

manal

Thanks Manal,

Little A's surgery went well.  He had two pins put in his wrist and is in a cast again.  I hope that his recovery goes well this time.  I also think that the prednisone may have had an effect on how the fracture healed.  I feel that the prednisone is not helping his hemoglobin at all, because he had no improvement with the prednisone - instead he responds to the homeopathic meds.  I am tempted to ask the doctor to wean him off of the steroids until his arm heals this time.  Poor kid has been through so much.  The had to rebreak and straighten his wrist   He is being a trouper though. 

I hope all is going well! 

Sharmin

Sharmin,

I am really sorry to hear about Little A'a arm,give him a big hug for me plz  .

Zaini.

I expect his arm is swollen? My father had an operation to get those pins out plates out. Poor arms. I hope his arm heals soon and that he may wean off prediisone. He handles all well?
 

Dear little A

Wish you a speedy recovery my sweet heart, love you so much

manal

Thank you so much Zaini, Dore and Manal,

He is doing well so far.  His attitude has been better than I expected.  He is on summer holidays - I so wish he could be out playing hockey and soccer but the docs have asked him to be extra careful this time.  Your wishes mean so much to us 

much love,

Sharmin

Hi Andy

Could there be any defiency in the body that is causing hemolysis?

1-Last March Ahmad's HB was 6.7,(high dose of hydrea)
2- June it was 7.7 (Lowered the dose and at that time we agreed that this is the suitale dose for his body)
3- August it was 7.2 (same low dose)
4- Today it is 6.7 again and he was NOT ill since August, so WHY??

I was assuming that if he was not ill the hb -if not increased-, it will be at least stable. What could be dropping the HB, is there anything i can test??

PS
I noticed that in the two times i increased the dose, the result after one month is usually low but the following month, it is in the peak ( up to 1 gram increase and then starts declining). So the question is could be this big increase due to an accumalative effect of the drug that appeared after a couple of month and started declining because i lowered the dose again?

I don't think that lowering the dose could be the reason ( for having the highest reading in HB)because he was on low dose for a long time and with no significant increase

I really don't know does what i say make sense or thereis no relation?

 Anyway i will be at the clinic in a couple of hours

manal

Hi Manal,

Has there also been any change in his retic count or bilirubin levels? These would give some indication if hemolysis is taking place.

Hi Andy

1- March the retic count was 3.2%, bilirubin 1.8 , hb 6.7 (result after one month of high dose)

2- June the retic count was 8.3, bilirubin 2.1 , hb 7.7

3- August the retic count was 4.3 %, bilirubin 1.9 , hb 7.2

4- Today the retic count was 8.5 %, bilirubin 2.2 , hb 6.7


When the hb was high in june the retic was high and when it was low as of todaythe reticwas high too. howcome

Also for the first time in his life the platlets are lower than the normal, 110,000 (normal 150,000 - 450,000)

I looked back at the tests you posted at the beginning of this thread and noticed that he also had a drop in Hb after summer of 2009. Is this possibly a seasonal change? Is there any change in him physically with the lower Hb?

This drop was due to continous infections he had during July and August 2009, so the drop was justified.

But from this last August everything was fine that is why i am frustrated for this decrease.

As for his activity, it is the same. but definetly he is paler

manal

Just came back from the clinic.

The doctor said that in thal there is no justification for the decrease and there is no pattern.

She asked us to do another CBC after one week after increasing the hydrea dose to 450mg instead of 400 and lowered the dose of L-carnitine, but taken daily instead of 5/week. She also doulbed the folic acid dose. All this for this week until we do the CBC

Last August, the spleen was 3 cm enlarged, but today it is 7 cm enlarged. So she said that this is the reason for the hemolysis and also this is the reason for the decrease in the platlets as the spleen is ''eating'' them.

Please your prayers are extremely needed
Manal