Discussion Forums > Working Towards a Cure
The Carao Trial - How effective is it & who benefits most etc.
Maako:
--- Quote from: ZAINI on October 17, 2008, 06:45:37 PM ---Andy,
What i don't get is that while her hb was normal,why was she feeling so tired and down in the last week,and she was looking so pale that i was assuming that her hb must be low,
Zaini.
--- End quote ---
--- Quote from: Andy on October 17, 2008, 07:19:33 PM ---Zaini,
And this brings up a question for thals. Can you tell when hemolysis is taking place? Is there something inside that you can feel?
--- End quote ---
--- Quote from: sharmin on October 17, 2008, 10:18:46 PM ---Zaini,
What you describe has also occurred with my son on couple of occassions. He says that he cannot express what is going on, and he also seems to be out of breath. His doctor however says that his lungs are perfectly clear, his O2 is 100%, and his lung capacity is not only normal but it is above average. I am also confused by this and it also scared me. He described this feeling last week when his hg was 10.4. Maybe as Andy says the kids are experiencing the symptoms of hemolysis - and maybe the feel it more as they get closer to a hemoglobin of 10.
Have other thals ever noticed this?
Sharmin
--- End quote ---
Hi Zaini, Andy and Sharmin
I feel this way on several occassions, even though i can't understand why too.. Even in the last transfusion i had, I was feeling extremely tired and out of breath when i climbed stairs and walked about too much.. I thought my hb must be something like 7 now... (it was nearly 3 and half weeks by then since i transfused..)... I even stayed in bed one whole day, just dint have the energy to get up...
But when i went to the haemotologist and got hb checked, it was almost 10. (9.8 to be exact). Dr. Alan Teh saw how pale and tired i was, but both of us were surprised by the results... he gave transfusion anyway... He trusted my instincts when i said i was feeling that way...
this is not the first time it happened to me.. and i donno how to explain it... sometimes i ask if its in my mind? to imagine that since its near to my transfusion my hb must be this low :rotfl
but then, how would zainab and little A imagine that, right? so i guess we do know when we are experiencing hemolyis...
any other thals? whats your experience?
Sharmin:
Maako,
thank you for that explanation, which our little ones are not able to provide for us. Maybe it is infact the feeling you get when the bone marrow is beginning to become active.
Whether a non thal individual has a hg 110 or 100 it doesn't matter because the marrow is always active. In a transfused thal major the hg is suppressed when it is 115 (lets say) but perhaps it gets messages to become active closer to a hg of 10 - and that is when thals can feel the hemolysis. I am guessing that this is a possiblitity. Maybe also near the end of the transfusion the red cells are getting old (because thals don't replace them on their own) and their oxygen carrying capacity is reduced somewhat...
It is difficult to understand, but I know that some doctors here recommend having smaller tx every two weeks rather than a normal tx every 4 weeks. They say that it is optimal for growth, I wonder if this is the reason.
I understand that red blood cells are replaced in the human body about every 28 days, then they are broken down and new red cells are made.
Does this make sense to anyone else? It makes me wonder if the small tx every 2 weeks is in fact best - BUT it can be a big lifestyle change for many.
Sharmin
Manal:
--- Quote ---.. and i donno how to explain it... sometimes i ask if its in my mind? to imagine that since its near to my transfusion my hb must be this low
--- End quote ---
Maako,I think that sometimes this could be right. Before knowing that i am myself has anemia, i never complained from anything but after my knowledge i just some times feel tired from things i used to do without any problem and i refer them to the phrase '' because i have low Hb''
For this i am would want to raise my child knowing that he is just different NOT diseased. I think that uncoinciously (spelling....) when you know that you are diseased even if you are leading a positive life, you tend to put limitations to your abilities. I don't know if i am right in this thinking or not or even it is my still hidden thoughts of in accepting but all what i am sure of is wishing to give my child the very normal life
But again young children wouldn't realize this as you questioned Maako,so there could be definetly symptoms for hymolysis??????
manal
Zaini:
Thanks Andy,
For your support,actually the ward doctors meet a lot of thals,and sadly most of them have very high levels of iron,at least that's the situation here in my country,sometimes i wonder if i should start a campaign to convince patients to comply with the chelation and bring down their ferritin levels? At least in the hospital where we are going? but the thing is every body is not able to afford every chelator,so they try to use what ever they can get.
What i don't get is why doctors give them a sign that it's ok to have iron overload while you are chronically transfused,i,ve seen patients with such high iron levels that it horrifies me,most parents doesn't have the basic knowledge,and unfortunately they accept that their kid is going to die anyway,so why try? This is pathetic,i've seen well off rich people with the same approach,A few months back i saw a little girl,younger then my daughter in the hospital,i don't know what her ferritin level was at that time,but when after a few months i saw her again,she was com[pletely changed,with the darker skin,and the tell tale signs of thal major,that means that her parents weren't complying with the chelation,since she was very young to be compliant by herself,and i know that she belongs to a well off family.Often when i meet moms,educated moms in the hospital,i literally force them to join this forum,but sadly i haven't seen a single one of them here,well the least i can do is keep reminding them,
I'll ask my daughter's hemo about the dosage,if she doesn't approve it,i am gonna change it anyway.
Zaini.
Narendra:
Here is the update on the Carao Use and results for my niece
1. Confirmation of delivery of the carao – Yes
2. Date when carao is begun – 8th July 2008
3. Dose given – 2 Teaspoon per day
4. Age and diagnosis of patient – 3 and half years (Thal Major)
5. Average hb before carao was begun (the last several blood test results, if available) – Between 9 and 10
6. Results of all hb tests done during or soon after the period of use of carao. Of course, the date of the test(s) must be included – 9.4 (18th Oct 2008)
7. Whether or not any other treatments were started during the period that carao was given - No
8. Any extra observations, such as observations on energy level and effects on the overall health of the patient – Nothing visible
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