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New Book about Thalassemia (Cooley's Anemia)
Manal:
Hello Zahra
I am happy to know that little S is growing and starting his first steps. I don't think that there is any prroblem at all falling while he is trying to walk. Make sure that he is taking a good supplement of calcium, magnesium, zinc and vitamin D ( By the way, the first time i saw Osteocare was in Dubai, so i thinki t will be easy to find there), generally all children need this at the toddler age whether thal or non thal
As long as you are keeping his HB in a good level, giving supplements and monitering growth and chelating when needed, everything will be just fine his bones and allhsi body functions.
As for keeping him still during transfusions, i think getting a portable DVD with his favorite cartoons will do. Also try to get the series of Baby Mozart, Baby Einstein, baby Bach... they are so interesting for babies and toddlers. I remember when i wanted to leave my children quiet for an hour to do anything i used to play one of these CDs they work like magic. My children were like frozen statues when they see them as they get so absoarbed. They are also very educational.
manal
Zaini:
Hello Zahra, :hugfriend
Lots of hugs and kisses for Little S :kissy
--- Quote --- As long as you are keeping his HB in a good level, giving supplements and monitering growth and chelating when needed, everything will be just fine his bones and allhsi body functions.
--- End quote ---
I couldn't agree more with Manal,if you'll keep his hb between 9 and 10,keep giving him right supplements and don't let his iron increase too much,you won't have to worry about his growth InshAllah .
Zaini.
zahra:
Dear Zaini and Manal
Thank you for your advice. :hugfriend The problem is my son hasnt taken any interest in cartoons at all yet. All he wants to do is walk, he has skipped crawling altogether. Last month he tried to pull out his canula with his teeeth when we restricted his other hand but this month I am more concerned about his pulling up and falling and thus jerking the canula out. I took rattles and toys to sit andplay with last time. Now he wont sit at home. Maybe it will be different in the hospital. I hope so.
I will check for osteocare. What is the dose for infants? He is 9 months old and 9kg. I have read about wheatgrass helping but am waiting till he is allowed to start wheat for that. Are the other supplements like IP6 mentioned here suitable for an infant?
Zahra
Sharmin:
Zahra,
Your son sounds like mine when he was little. You will need to keep an eye on him the first few times after they become this active, but over time they become wise on their own and find ways to avoid pulling the IV tubing etc. Just be sure that the nurses reinforce the site for him because he is active.
My son is ten now, but he plays nintendo Wii while we are in the hospital and sometimes he decides that he wants to walk around so I am still quite careful with him. The nurses often tell me that he is a big boy now so they don't have to reinforce his hand - but just last year he disconnected his IV somehow while playing Wii and blood started to spurt out of his hand - since then I don't put anything past him. I just tell the nurses that my son is a monkey and reinforcements are required. I am giving my children Osteocare liquid - and the bottle says for children 1 - 2 yrs take 1 teaspoon twice daily. Perhaps you can ask your doctor if it is okay to begin giving him 1 teaspoon ful until her reaches 1 yr of age.
Have you given him D Vi Sol? Vitamin D drops?
I give my son IP6 capsules - I believe that a liquid form is available too. I don't know if your son's stomach will be ready for them at this point, perhaps you can start them at 18months of age. What do the others think?
Best of luck to your little guy,
Sharmin
Ps. By the way Zahra have you read the book yet? The author has told me that the book explains gene therapy and how the method they are using they attempt to avoid the cancer risks previously associated with gene therapy.
Andy Battaglia:
IP6 capsules can be opened and the powder mixed with liquids, making it easy for anyone to take. It is also very safe, as it already exists in every cell and is found in the bran of all grains.
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