Thalassemia Patients and Friends
Discussion Forums => Thalassemia Intermedia => Topic started by: Manal on January 21, 2008, 03:26:11 AM
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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
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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
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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
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:congrats
These figures look pretty impressive :happyyes
Way to go! :party
Keep it up :thumbsup
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Hi ManaL. :hugfriend
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.
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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?
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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
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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 :dunno
Anyway i will keep you updated everytime i make a CBC
Manal
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Dear Manal,
Best wishes for you and Ahmed :hugfriend
ZAINI.
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Manal, that is awesome! :cheer I hope that things continue to progress in this manner. I'm keeping my fingers crossed for you guys! :hugfriend
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Thank you so much Zaini and Danielle :hugfriend :hugfriend
Manal
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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
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Thanks Sharmin for your ''lovely'' wishes :hugfriend
Manal
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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
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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...
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Hi Manal.
How are you & How our little Ahmad is doing with his new treatment? What are the further devlopments ? Can you pls. update us .
With Lots of Love and Best wishes for you and Ahmad. :hugfriend
Take Care
Dimple
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Thanks Dimple
I was supposed to make the CBC last week but actually Ahmad had a viral infection and had fever for two days which i am sure will affect the CBC to a great extent , so i will postpone it for a week until his body is clear from this infection.
I wished so muich that in the first three months of the treatment he won't catch anything so i can objectivly evaluate the treatment , but as you know we can not control those viral infection :mad
Anyway, i will keep you updated as soon as i know anything but what i can say is that he looks pale though he is still active even in the fever time
Manal
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Hi Manal
I am really sorry to know that Ahmad had god viral infection and as you said, these viral infections always effect to the blood count. I wish he get well soon and hope the best with this treatment.
With lots of Love for you and Ahmad.
Dimple
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Hi Manal,
Hope Ahmad gets well soon
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Thanks dimple and Hope, i will do the CBC on Saturday
Manal
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Good luck for the CBC dear :goodluck
ZAINI.
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Our prayers are with you! :pray
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Manal,
Its good news for you so far. I am really happy for you. My only concern is based on my own feelings. When my hb drops under 10 I find it very difficult to concentrate and do stuff. With an even lower hb i have been told that it can cause bone deformation as well.
just wanted to point that out to you based on my won feelings.
all the best
Roanna
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Thanks Zaini and Sajid :hugfriend
Roanna, You are right in what you are saying. But till now and thanks God for that there is no bone deformation, only the bone age is younger by 1.5 years than my son's actual age and the doctors told me that this is accepted in chronic diseases. As for development, my son is still in the normal range for his age. The doctors are telling me that it seems that his body adapted with the decrease of Hb.
But since what you mentioned is a fact and if it is not happening to me now, i am sure it will be in the coming years ( onset of puberty ), i am trying to make every possible thing to try to increase his HB as much as i can
Thanks a lot for your concern :hugfriend
Manal
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2nd Update
Hi
As you all know, i was supposed to do the second CBC after the treatment on the 20th of February and i did it. The results were terrible because i found out that after taking the blood sample for the CBC , Ahmad started a fever for two days and later cough and running nose started after the fever until now.
The results were:
HB------- 5.8
MCV----- 58
MCH----- 20
Bilirubin------ 3 ( the highest he ever reached)
Ret. count---- 6%
The differential count showed lymphocytosis
I was really shocked and took all the results to the doctor who is responsible for this treatment. he told me that infections in general whether viral or bacterial will hinder the progress a little bit as well as any trauma that a body would expierence like accidents, bleeding,...
When i told him that this is hard to deal with as infections at school age is so common and it is impossible to prevent them, and i don't want to end up building in one place and then having just a simple infection destroying everything for me.
He said that even normal persons have there HB affected when they have colds and same applies to Ahmad. He added that the benefit here is that he will re-gain his Hb back quicker than he used to as he is giving him the ready made cells so it will be more easy for the body to increase once more in a short time. So he asked me to do another CBC after 10 days.
TODAY, i did the CBC and the results were:
HB ------ 6.9
MCV ---- 56.9
MCH ------19.7
Ret. count -------6.6%
Bilirubin------------ 2.3
In the differential count , there were something called Normoblasts 9/100 WBCs ( this is the first time this appears in the CBC )
So what i can see is that we reached the same end as the last month and thank God that he increased.
From tomorrow the doctors is going to increase the concentration of the shots to give him a jump start after this infection, actually it is still there. It will be given IV for 30 minutes instead of a shot because of the higher concentration and i hope it will go smoothly with Ahmad, i will be in need for your prayers.
One more thing the doctor mentioned today is that he will be taking a blood sample from Ahmad to make a special ''medicne '' for him ( custom made specially for his plazma and will be done in germany) that will boost his immune system a little bit more. He explained that though thal has nothing to do with the immune system or the formation of white blood cells but all the system of the body get used to work or function at its lower capacity, same as what is happening in the formation of the red blood cells. I really can not explain what he told me,but he said that this will help him to strengthen his immunity in general. This medicne could be formed in the form of shots but under the skin or as drops but the shots are more effective.
That is all for the moment and will be waiting for your feedback
Manal
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Hi Manal
Since his hb came back to what it was within 10days I suppose this treatment has started to work. My prayers are with you and Ahmed
With lots of love
MAHA
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Hi Manal
Its good that Ahmad has come back to his blood count. I wish with increased concentration of shots and boosting his immune system will helps him a lot.
My prayers are always with you and Ahemad.
With best wishes and Love
Dimple
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Hi Manal,
I am relieved to hear that Ahmad's hg has increased over the 10 days. I wish him continued success with this therapy - I hope that you see a continual and significant increase in his hg.
Take care,
Sharmin
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Manal,
I continue to pray as well. I remember when i was younger, everytime I got transfusion I would get the cold. This used to break down my blood faster as my hb levels were always lower than those months I was luck enough to be spared.
You do have some positives there though as his blood level actually went up!
Best wishes
Roanna
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Thank you so much my friends for your wishes :hugfriend
Manal
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i really pray for you and hope this treatment really work for you.
please keep us updated.
regs
micky
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Hi Manal,
How are things going for your son?
I pray that this treatment works and our little sweetheart Ahmad is healthy and strong:)
Sharmin
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Thanks Sharmin for your concern :hugfriend
Actually the past months Ahmad had several fevers, colds, every thing you can imagine. Actually all of us. each one in the family had a cold and passes it to the other one and the whether too was not very good the last month, you can have the four seasons in one day. So the doctor stopped this treatment as he said that the chemistry of the body changes in fever.
We resumed it two weeks ago and hope to reach anything positive. By the end of this month the doctor want to make an amino acid test and heavy metals to see if there is any defiency that is worsening the thal in an indirect way. He said that if there are deficiency in certain amino acids, we can give them to him so the body can see them and start using them.
I can say that this treatment -if it will work for me- work very slowly and each person reacts according the his own body. We are waiting to see how will the body react.It is as if you are offering the body something and you are just waiting to see will the body recognize and see it and then start to use or it will just be insensitive to it.
But what can tell from now is that i can see that somehow these injections are givng like a jump start to all body functions. I can say this because when we went to the endocrinologist she said that she is till now pleased with the growth till now he is in his normal range and i hope that the velocity of his growth will not decrease. My only problem is that he does not gain weight but she told me that she is more concerned about the height
By the way Ahmad has just changed his lower two teeth and the new ones are at their half way.
Again thank you my friend
manal
manal
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Manal,
I hope that all of you are feeling much better now - we also went through many colds and flus this season. Being sick certainly strains everything - that is what caused my son's hg to fall - after being maintained for almost a year. I hope that everyone stays healthy now!
I hope that the medication works well for Ahmad and that he grows well. Congrats on the new teeth - my daughter also got new bottom teeth during the past few months:) I wish you all the best - keep us posted!!
Sharmin
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Hi Manal
I had been waiting for your update. What is Ahmeds current hb?
take care
Maha
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Hi Maha
After all the fevers, i did a CBC on May 1st and it was 6.2 :wah
manal
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Manal,
I hope that his hg improves soon, illness can have this affect. I'm sure things will get better very soon!
Sharmin
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:pray Praying for everyone always :pray
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I hope his hb will increase soon,wishing him every joy in the world :hugfriend :hugfriend :hugfriend
ZAINI.
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Sharmin, Sajid, Zaini... your wishes means the world to me, :hugfriend :hugfriend may God accept them
manal
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Dear Manal good luck
Without me saying, I'm here and I support you and Ahmed; :hugfriend :hugfriend
God is always around, sometimes a bit too slow to our liking, nevertheless he is around. be patient.
Lots of love
from Kathy
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Thank you a lot my dear friend Kathy, your words are always comforting and really makes me feel a lot better, thank you :hugfriend :hugfriend :hugfriend :hugfriend
manal
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How's Ahmad doing Manal? I hope you see an increase in his hg soon. I'm sure now that he has recovered from his fever and illness he will do much better.
Sharmin
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Thank you Sharmin for your concern :hugfriend . I will be doing a CBC in the beginning of the next month and i hope i can find any positive change :dunno
manal
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Hi everyone...
Manal is your son on hydroxyurea? Livi has been on 2ml hydroxyurea for some time now along with folic acid.....within a short time her hb was at a 9. Today she is around an 8. Her dr feels that we can raise her hydroxyurea because of her age and weight and the dose that she is on is small. However, I am afraid to do so because she would have to have her blood drawn every 2 weeks to check for damage ( I think to her liver-maybe kidneys Im not sure) and then we also don't know what the long term affects could be. ( this is just my personal feelings on raising the meds). Olivia has been growing normally and she is doing great......and has not needed any transf. to date. I am so happy for you. I know how it feels to see even the smallest difference it gives us so much hope.
Your situatuion sounds so much like ours....I know it is so hard not to worry or to go one day without thinking about it. But life goes on and life is good. We do have so many things to be thankful for. I know God is watching over all of us and we will be ok.
My love to all
Kathleen
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Kathleen, where have you been, it has been a long time since you posted but i am happy you did and i am happy too that little Olivia is doing well :hugfriend
Ahmad was on hydra from May 2007 till November 2007 and we stopped it as we are on other treatment ''as explained above'' and if it didn't work, we will go back to the hydrea again. when we started the hydrea, the hematologist gave us 4 ml at the beginning but after two days i found that Ahmad couldn't tolerate the dosage as it make him dizzy and had stomache aches. She reduced the dose to 3 ml ( 20mg/kilogram ) and it was okay for him. Starting the fourth month from taking hydrea, he showed some increase in hb and he reached 7.4. I don't know if he would continue rising if we proceeded or not as the doctor had told that o one can judge before 9 months at least.
manal
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Hi everyone......
Today Olivia had har appointment and her hb was a 7.2 and after discussing the last few visits with her dr we decided to transfuse her today. She was so brave. We will have her next appt. in 2 weeks to see her hb is. I will let you what happens.
Love Kathleen
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Oh dear...
I hope this was the last Transfusion that she will ever get. Amen. :pray
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Hello Manal,
How is Ahmed?Please update us on his next CBC.
With good regards and best wishes - Sah. :flowers
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Thanks Sah for your concern. :hugfriend :hugfriend
On May 28th we did him the amino acid and heavy metals blood test as his doctor thinks that it might help in this biological treatment. The blood needed for these tests where huge , they withdrew 35 ml ( minimum quantity required ) which is really a big amount and the doctor didn't withdrew them except when he made sure that Ahmad drank a liter and half of fresh juice before the withdrawl ( it was really difficult to convience him to drink all this amount ) He said that without a lot of liquids full of nutrition it could be really dangerous as it may lead to a coma!!!!
Any way it went well, million thanks to God and i will get the result by the mid of June. This test is done in Germany as we don't do it here in Egypt.
So i will postpone the CBC a little bit for a while as i don't want to draw any more blood right now.
Take care
manal
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Oh dear....
:scared
Reading what the little soldier is going through is giving ME the shivers.
I hope he gets well soon.
Manal give lots of love to your son on my behalf :hugfriend
:pray
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Hi Manal
This is really frightening. Hope that Ahmad`s hb improves soon and all the tough situations you have been through are well rewarded.
Take care
Maha
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Manal,
I hope for the the best for our little Ahmad - I hope his hg improves very soon.
love,
Sharmin
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Thank you so much my friends for your wishes and concern :grouphug
manal
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It's really hard even to see 5 ml blood being drawn from ur kid's body,it's kinda physical pain for me atleast,i hope everything turns out fine for ahmed.
Good luck.
ZAINI.
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Yes Zaini you are right , thanks dear for your wishes
manal
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Hi Manal,
How is Ahmed doing?What is his latest cbc report?Hope everything is fine.
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Hi Sah
Thanks for your concern, actually now we are on our summer vaction and will be doing the cbc on the 1st of September. Gernerally he looks good, maybe the good weather of the north coast where there is no pollution helps. Also my mum feeds him well which is not our normal trend :rotfl :rotfl :rotfl Can't tell about the bilirubin as he has been ''roasted'' by the sun as he stays at the sea until sunset.
Sometimes his lips are so pink and other times his lips are so pale don't know why is that , maybe this is related to the activity level :huh
manal
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Hi Manal.
Have a nice vacations with your family :hugfriend :hugfriend :hugfriend :hugfriend
I'm so happy for Ahmed I don't blame him for enyoying the seaside, good on him.
Take care
Kathy
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Thanks Manal for such a swift reply.Enjoy your vacations and take care.
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Thanks Kathy and Sah for your wishes, hope you enjoy your time too :hugfriend :hugfriend
manal