1st update on Biological treatment

Dear all

As you know i was supposed to do the CBC on the 23rd of January,but i really couldn't wait. I did it today.
First, there are some information you should know. Ahmad normal HB with folic and supplements is usually between 6 and 6.5 . The maximum his MCV reached was 54.
Ahmad took the hydra for 4 and half months and the maximum his HB reached was 7.4 and the max MCV readings was 63. He didn't react to hydra from the first month but actually his readings started to rise bit by bit starting the second month

TODAY's reading were:
*HB 7 and MCV 60
*Reticulate count 8.5%
*Liver and Kidney functions are normal
*WBCs are back to normal and platlets are back to normal
*Bilirubin is 2.3  ( This really confuses me as he looks much whiter than before- actually not all the time but many days i see him white with his lips little pink colour- so i don't know why this has not been reflected on the bilirubin.


Any way i took the results to the hematologist and she said that we will continue this treatment to see what will happen. Same time she said that it is fine that he didn't drop to his normal HB. Actually she is waiting for the results like us especially that she told me that she didn't hear of this biological treatment before in any international conference but she is willing to see what is going to happen especially that all body functions are doing well.

As for Dr. Emad feedback, he is now in Germany and i will meet him next week to see his feedback.

By the way the first three month of the treatment ( started 23rd of December) are the concentrated ones. Ahmad is supposed to take 40 injections in the first 3 months and till now he took only 11

Will be waiting for your feed back

Manal

Dear Manal
Ahmeds reports are quite encouraging. So far so good. Were his reticulocyte counts always this high. This does indicate that immature Rbc`s are still being produced. Do you know his MCH level. All the best.
Much love
MAHA

Dear Maha
Thanks for your reply. His reticulocyte count without any medications was from 5% to 11%. On hydra, it was from 3% to 5%.
His MCH yesterday was 20.9 and the normal ranges from (26-32), but actually i don't what that indicates.

Manal

These figures look pretty impressive

Way to go!

Keep it up

Hi ManaL.

I am really very happy to his result.GOD BLESS HIM.It gives great hope to me for Priya.

CONGRATULATIONS.

Keep us updated.

Love To Ahmad.

Dimple.

Hi Manal,

While it is encouraging that there have been no large drops in any levels, please don't take this as a negative because it isn't but I do feel it is premature to make any judgment on this treatment at this point. It is so early in the treatment that we do not know if the levels are still affected by the hydroxy or if it's a combination of this with the residual effect of hydroxy or if it is indeed this treatment that is maintaining his Hb level. As you noted, it took a couple months before the effects of hydroxy became apparent, so I think it is best to reserve judgment at this time.

Have you noticed any change in Ahmad's appearance or energy level?

Hi Manal
MCH is the mean corpuscular hemoglobin. It indicates the colour of the cells. Low MCH means the cells are hypochromic that is pale in colour. Thals have mycrocytic hypochromic anemia ie the Rbc`s are small in size and pale in colour and this is indicated by the low MCV and MCH.
Regards
MAHA

Thank you all to your feedback and wishes. Thanks Maha for the explaination.

Andy, i totally agree with you that it is too early and also the hematologist said the same. Also the the doctor responsible for this treatment told me from the begininng that the increase will be accumalative and it takes a couple of month to see any difference. But i will be doing the CBC and liver&kidney functions as usual every month to make sure that this treatment doesn't affect the other body functions.

As for his appearence i can see that he looks much better and even the hematologist noticed that his lips have a colour. Before, his lips had no colours and it was the same as the face. His energy level has increased and he doesn't have his naps everyday as he used to, but every now and then. Actually the change in appearance gave me the impression that i will find a much better Hb than it is

Anyway i will keep you updated everytime i make a CBC

Manal

 

Dear Manal,

Best wishes for you and Ahmed 

ZAINI.

Manal, that is awesome!  I hope that things continue to progress in this manner.  I'm keeping my fingers crossed for you guys! 

Thank you so much Zaini and Danielle

Manal

Hi Manal,

I am glad that the initial results are encouraging - and I feel cautiously optimistic for you. 
I hope that this treatment makes our little Ahmad's lips pinker and his hg higher! 

Love,
Sharmin

Thanks Sharmin for your ''lovely'' wishes
Manal

Hi Manal

Really good to hear this. It is true when the lips are pinker, we feel that the hb would hv gone up. However now I have deduced that when Prat wakes in the morning up he is pale and when he is playing and jumping all around his lips are pink and there is some colour inthe cheek as well. I think it is more to do with the blood flow, when they are active. When Dr Marwaha does his clinical observation, he sees Prat's tounge and he is so expereinced that with the tounge' level of pink colour, he can make out his hb is 6 or 7 or above.  His judgement has always co incided, with the blood test results.Guess it is his expereince.

Anyways it is good to tht Ahmad is active, cos tht is most important.  We will look forward to more updates from you. I wasnt able to speak to Dr Ehmad yet.

Take care n all the best

Puja

Hi Manal, I just read about the new treatment you are trying for your son. I really hope that this treatment helps the little guy to increase his Hgb. Best wishes...