Hi all
I want to give you an update on Ahmad's case. After 12 days from the last CBC ( HB was 5.8 and spleen was 3 cm), the new one showed that his HB increased and became 6.1 and the spleen is 5 cm.
Actually i was happy and thought this was a good sign.
Then when i went to the hema, she checked him and was not impressed by this increase though we had his HB at 6.1 many times before.
I had a question for her which was his growth, Ahmad is the normal rang of growth in terms of weight and height and is still in the normal range. in addition he is average in his class at school, i mean there are shorter than him and there are taller than him. He doesn't look odd. In spite of all this i get the feeling that he is ''little'', some people say that he looks like 3.5 or 4 years and he is actually 4.7 years
Though his father and me are not tall,but when Ahmad was a baby it seems that he was taller than normal to the extent that when he was 6 month old, his clothes were the size of 2 years, so did his growth rate slowed down as a result of his low hb although he is in the normal range??
Actually the hema, didn;t answer me in details as my question were but she suggested starting the hydroxy urea and she said that all his enrgy is directed to the spleen enlargement and she wants to divert this enegy to his growth. Actually i was silent because the last thing i wanted to give him is this medicine. I wanted him to go on the resveratrol and aloe vera instead of this .
But it seems that the disease is faster than these natural supplements. Because of the surprise i forgot to ask her what is the difference between now and before. I mean nothing changed in terms of his spleen, liver, Hb, normal growth. Why give the hydroxy now. She wanted to give me a chance to think, but a thought came to my mind telling me don't interfere too much cause i may be harming him and i told her that she is the doctor and she is the one to decide.
Actually his doctor seems to like this medicne and when i discussed with her the terrifying side effects found in the pamphelet of the medicine, she told me that every patient has his unique expierence with the medicine. Some patient react positivly in one month, some in 2 or 3 and others don't at all. Some have most of the side effects and others have none. No one is like the other and she is going to moniter the kidney and the liver functions and whiteblood cells every month.
She is giving it to 25children and they are doing fine. She even gave it to some one who is now having two kids and has been on it for 15 years
For me i feel i am giving poisinous to my child i wanted to think of butyrates componds but i knew they are not oral yet.
i am supposed to start it this morning and now it is 6:30 pm and didn't give it to him yet. I called his hema and told her to give it to him late at night cause one of the side effects is nausea, vomiting, dizziness... and it is better to pass through all this while he is asleep cause he is in school at day time. She told me no and give it a try cause some patients don't feel this at all.
Actually i am mierable and confused but i don't have any options. Could any one give me a link about anything concerning hydroxyurea or any precautions.?
Andy, do you think i should continue the resveratrol and the aloe vera in addition to the hydroxyurea?
Manal
PS by the way i asked te hema about the retrodifferination and whether it suits Ahmad or not and is it a cure or mangement. Is it once and for all or it should be made every now and then.
She answered that what she knows is that they want people to go to the UK to go through this process and is very promising, but concerning the frequency she still does not know and have to talk to the people involved in this in the coming conference and will tell me later whether it suits Ahmad or not