Evaluating hydroxyurea after one year

Manal,

I know the list is based on reactions in alpha thalassemia, but take a look at the list in this post to see if your son may have had exposure to anything that might cause hemolysis. http://www.thalassemiapatientsandfriends.com/index.php?topic=3410.msg34830#msg34830


Meanwhile, I have posted in a new topic asking for any ideas for reducing spleen size. One of our adult members recently told me she may have to have her spleen removed because it is 26 cm. Incredibly, she is used to living with it at around 20 cm. I am really hoping we get some suggestions, so that she can find a way to keep her spleen.

Manal,

My prayers are always with you and little Ahmad.  I hope and pray that his spleen will shrink and that his hemoglobin will increase.  I am hopeful that some new method of treatment for thal intermedia will be helpful to you very soon.  Have you ever tried nigella?  

The homeopathic medication I was giving lil A worked initially but eventually had no effect and we so we had to repeat the ritux - we abandoned the use as I think there may have been a link between the homeopathic medication and his loss of appetite.  Otherwise I would have recommended that to you.  

I am sending you lots of love and prayers,




Sharmin

Manal,

I am sure Ahmed's hb will get back to his normal levels,we are all praying for you and Ahmed,couldn't this be due to hot weather? coz i notice Z goes pale fast in summer then in winter.

Praying for you,keep us updated.

Zaini.

Dear Manal, I do not have enough knowledge to give you advice. But I will like to give you this 

Andy
Thank you so much for your concern . I will check the post and concerningthe list, to my knowledge, he was not exposed to any of those things

Sharmin
Thank you So much my friend. I have started the nigella today but the oil is only available right now, hope it works

Zaini
I really do hope so my friend . I know what you mean about the weather, but actually his Hb usually increases in the summer rather than the winter. May be in the summer he sleeps more and eat better than when he is in school

Babynorth
Thank you my dear, this means a lot

Manal

I wish you the best with the nigella Manal.  I used to give him nigella with honey and aloe vera juice - it seemed to work at the time. 

Please keep us posted,

Sharmin

Thanks Sharmin, definetly i will

The nigella oil is also very good Manal. But adding honey is necessary to bind the stools otherwise the stools would be very loose and watery. Wishing you and Ahmad all the very best.

maha

Manal,

I am sorry if i am getting this wrong but nigella seeds aren't available there?

Zaini.

Thanks Maha for your wishes

Zaini
Actually we have nigella here, but Ahmad hates the taste, so i used to get him a supplement that has the full seed grinded inside a capsule, he used to swallow it not knowing what is inside, but this brand for unknown reason is not found, so i am getting him some other capsules but they have the oil only, which is better than nothing 

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

I did the CBC and the hb was 6.8, platlets count back to normal and retic decreased by 1% (it is 7.5% now). The spleen decreased by 2 cm (it is 5cm now). The doctor said we will continue with the same dose

I will be ordering the red root and hope that it will help decrease the spleen

Manal

Manal,

That is encouraging to see some small improvements after only one week. It may be that there will be a need for some regular fine tuning of the dosages.

Manal,

Thank you for the update.  It seems like things are better.  I am so glad to hear that his spleen size has decreased.  I hope that things continue to improve.  I will continue my prayers. 

Sending you my best,

Sharmin

Thank you Andy and Sharmin so much for your replies. I really hope things will be better
manal

Manal I hope you son is doing better!  You are an amazing mother! and your family is in my prayers. Olivia recieved her transfusion today and during her exam the MD told me her spleen was 3cm. What happens now? Do we just watch it? at what point do they talk about removing it?

Thanks Kathleen