One month after starting hydrea...

Manal ,

I am really glad to hear that  its indeed a good news i hope Ahmad will have much more higher hb then that  keep up the good work .

Zaini.

Hi Manal
This is great news. So happy for you and Ahmed . The next summit is a close 9. Keep climbing

maha

Manal Sis,
i m very glad to hear this , to you and Ahmed .. i hope he will reache 9 and then 10 in soon future , best of luck ...

Best Regards
Umair

Thank you Zaini and Umair so much for your wishes

manal

Manal,

That is such wonderful news!!!  I am so glad that Ahmad's hg has increased to 7.8 - I hope that the  next blood test will reveal that his hg is above 8!!  I also hope that his leukocyte count returns to normal for the next test. 

Perhaps decreasing the dose did help, and maybe you have been on hydrea longer now and that is what caused his hg to increase.  I am just so glad that his hg is higher.  Does he also look more pink to you now?

Please give the little cutie a big hug and kiss from me 

love,

Sharmin

Manal,

What you are seeing is the result of fine tuning the dosage. Hb is up and along with that, a drop in leukocytes is often seen. If it gets too low, then another dosage adjustment would be due. Yes, it can increase that much in one month and lowering the dosage is the cause. Every patient on hydroxyurea responds a bit differently, so this balancing act between bone marrow suppression and HbF induction has to be done. As I said, there could be further fine tuning of the dosage but this latest result is very encouraging. One other thing that should be remembered is that factors outside of the hydroxy can be responsible for fluctuations in white cell counts.

Thank you Sharmin and Andy for the support

I am back from my visit to the hematologist and she too thinks that lowering the dose, could be a reason for this increase ( remember also we decreased the L-carnitine from 5 days/week to 4 days/week)

The kidney and the liver functions are normal.

The ritex count has decreasedfrom 6% to 3%

But the Total bilirubin was 1.6 last month and increased to 2 though HB increased

The spleen is 6cm long which annoyed me cause his usual range was from 3cm to 5 cm only more, but the doctor comfortd me by saying not to worry because he had a cough ( almost for three weeks... allergy) and she said that the cough can cause more enlargement to the spleen and prescribed me a prepared drug for the allergy which i hope it will go in 10 days

Andy

1-

One other thing that should be remembered is that factors outside of the hydroxy can be responsible for fluctuations in white cell counts.

Andy do you mean by this infections or there are other reasons??

2- Andy, do you think giving natural Hb inducers like resvertrol for example in combination with hydrea, could help or this would imbalance the dose that we balanced???

Thanks for everything

manal

Manal,

Yes, the infection is a factor. But life is also a factor and you will seldom see the same results in these blood counts. The margin of error in the test is another reason. This is why I don't like to get hung up on fluctuations in tests, as long as they are not in alarming ranges. We see with liver tests that the time of day of the test alone is a factor in the results. There will be times when there is no apparent reason for the variation in test results, and we see this with hemoglobin results constantly. We see it with all the components of a complete blood count. I don't think it means anything other than tests are not exact and neither are the bodies of people. The body regulates so many functions and often takes from one area to benefit another area, so it is only when there are long term levels that are significantly out of range, that you can automatically assume there may be a problem.

I do believe that taking various supplements that can help boost hemoglobin levels can help each other and inducers like hydroxyurea in a positive way, so that you have a cumulative effect. I would also say that it should be noted that nigella should be added to the group of known hemoglobin inducers, as this has been shown in studies in addition to what we've seen with Ambareen.

Thank you so much Andy, things are much clear now

manal

Hi Manal

When is the next test of Ahmad. I met Dr Marwaha in India and he said the following for Prat, which I think should be applicable to all on hydro oxy:

1. The dosage of Hydro oxy doesnt need to be increased , if the hb is stable and even if there is an increase in the weight.
2. The bilirubin for thal kids is considered normal  even if it is on the high side. Normal range for SGPT is 0-40U/L but for thal kids it is ok till 200.
3. Retic count in the bone marrow increase  is showing the Bone marrow is working. Prat's retic count has  further gone up from 8% to 26 %. He said it is ok and is a good sign.

Another thing which he highly commended us was the usage of supplements. i had printed out some of the posts of yours' and Andy  and he read it and has kept it with him. He wants to recommend some supplements as well to some of the patients.

So looks like we are on the right track.

Thanks
Puja

I will post the results in the relevant post.

Hi Puja

Actually i am out of town now, spending the summer vacation and won't be back before mid of August so probably i will postpone the CBC after i am back because i prefer dealing with a certain lab that has no branches here.

3. Retic count in the bone marrow increase  is showing the Bone marrow is working. Prat's retic count has  further gone up from 8% to 26 %. He said it is ok and is a good sign.

I never understood this Usually when the retic count is high, this is due to low HB and hemolysis so we should expect that when the HB increases the retic count decreases too. Actually this is what is happening with my son after using hydrea. When his Hb was around 6.5, the retic count was in the range of 8% to 11% and when the Hb increased to 7.5, the retic became in the 3% range. So should i consider this a bad sign according to Dr. Marwaha?

Another concern of having a high retic count is the bone deformity. What is Dr. Marwaha's thoughts about it???

manal

Hi Manal

if I understood correctly Dr Marwaha said that retic count is the small rbc's in the bone marrow but in thal kids normally it is not there as the bone marrow activity is very minimal. So rectic count in Prat has increased it shows that rbc's are being made but these rbc's were destroyed by spleen as these are the baby rbc's. Now we are seeing an increase in prat it is primarily due to spleenectomy, as spleen is not destroying these rbc's.  I only understood this much and am not sure wether I understood correctly but over all Dr Marwaha was satisfied with the reports.

Bone deformity - was  not discussed. I dont understand the contradiction. To need a higher hb we need bone marrow to work,  but in thal kids this is considered  bone marrow over activity. So how do we get a higher hb. It is like a chicken and egg situation.

 I think bone deformity is due to overexertion of bone marrows to keep up the HB , but if the hb is sustaining at a certain range then by right bone deformity should not happen as bone marrow work must be the same everymonth but again if the rectic count is increasing it shows in over exertion.( I am just guessing this.. I really dont understand this).

AS for Ahmad.. dont think negative it is a very good sign that hydro oxy urea has worked and his hb is on the rise.  Also as Andy rightly said sometimes we dont have all the answers

Manal,

Yes, the infection is a factor. But life is also a factor and you will seldom see the same results in these blood counts. The margin of error in the test is another reason. This is why I don't like to get hung up on fluctuations in tests, as long as they are not in alarming ranges. We see with liver tests that the time of day of the test alone is a factor in the results. There will be times when there is no apparent reason for the variation in test results, and we see this with hemoglobin results constantly. We see it with all the components of a complete blood count. I don't think it means anything other than tests are not exact and neither are the bodies of people. The body regulates so many functions and often takes from one area to benefit another area, so it is only when there are long term levels that are significantly out of range, that you can automatically assume there may be a problem.

HI Manal

Did you carry out the tests for Ahmad?
I hope that you will have even better results this time.
Keep us informed.
Take care
Jade

Thanks a lot Jade for your concern

Actually i am still out of town and will be back by the end of this week, so i will do the CBC by September first but to tell you the truth i don't have high expectations as he was having a fever a coupe of days ago.


As soon as i get the results, i will let you know my friiend

take care

manal

Is Hydrea a kind of Epo?