starting my son asunra tablets. plz help

Zara,

I've already replied to this on Facebook, but will post my reply here as well.

it does seem to be the asunra causing the problem. I don't know if there is a remedy other than to try a different chelator. It could be an allergy or perhaps a mineral deficiency caused by the asunra. I would suggest having his calcium level checked before changing chelators. [Added here.] You might also consider giving him a calcium and magnesium supplement to see if it helps. Magnesium is very important for the nervous system.

http://www.news-medical.net/health/Excessive-Blinking.aspx
Dear Zara,
I am no expert but would like to share my experience as a parent. My older son who is thalassemia minor and never took any chelation had this problem when young. Doctors said it was just a nervous  habit and he did outgrow it.
Please  see the link above. There are many possible causes. I would  suggest  a  really thorough eye exam. 
Best Always,
Zahra

Agree with Andy, it probably has nothing to do with exjade. It could be just a habit (i had it as a child). If eye exam is normal, then perhaps nothing to worry about.

Dear all,

We noticed that last 2 months my baby blink rapidly and sometimes she smiles then I think its ok.But sometimes when she blink her face showed a bad expression.

Is it necessary to discuss with a eye specialist for the present problem..?

This month I have decided to start chelaton with Asunra.But if it cause blink then will her blink be increase?

She may have just realized recently that she can blink like that and is just playing. Does she laugh if you blink back at her?

You are right Andy.She play by blink and also feel happy when I back.But feel worried when sometimes I saw after blink her face shown no smile look like sadness/painful...  

She may have just realized recently that she can blink like that and is just playing. Does she laugh if you blink back at her?

Hello ANDY and all
I am posting after a quite long time. My son Abdullah will be 3 years in August Inshallah. We started his chelation therapy when he was only 18 months old by starting dose of 150 and increased it to 450 maximum. But almost 6 months back he got problem with his eyes (rapid blinking) so the Dr said it may be due to Asunra so we stopped it for almost 3 and a half months and his eyes got better. Last month we again started asunra with 350 dose and now I am giving him 400.
We checked his serum ferritin last month and it was around 1600. Our Haematologist suggests to start desferal every time we visit him. He says its been almost 1 and a half year that his iron level is more than 1000 and it gradually starts effecting and damaging the organs especially liver so we should start desferal so that his iron level drops below 1000.
The problem is that we are really afraid to start desferal. There are so many questions in our mind. How will our baby sleep at night with the pump and needle on for 10 hours on his tummy? He always sleeps on his tummy. I have also read on internet that the needle will cause bumps and swelling. Which is the best pump and needle to use? Is there anything specific which we need to know before starting desferal?
Please everybody share your experiences and ANDY I will be grateful if you reply in detail.

Hello Andy
I will be thankful if you do reply to me and everybody else plz share your children's experiences.

Zara,

I believe we discussed this on Facebook. If you need more info, let us know.

My kid is 1 year 10 months old and he is not taking asunra at all. I tried to mix it with many different flavours but he simply dont want to drink it. Few days ago i decided to make the solution in water and then I add few spoons of baby milk powder which he takes normally.. Is it okay to feed him asunra by mixing few spoons of baby milk powder such as Morinaga BF-2.

I don't agree with using a chelator at such a young age.

thank you so much Andy for the reply.. due to high ferritin which is 1600 the doctor advised us to start asunra.. we are also planning BMT after 2 months..

I don't agree with using a chelator at such a young age.

dear Andy however is it fine to add few spoons of baby milk powder in asunra solution.. he is now almost 2 years old..

Asunra can be crushed and mixed into many soft foods. It does not have to be mixed in liquid but can be. If the child will take it by the method you describe, do it. If not, look for any soft food that the child will eat and mix the crushed tabs in that.

thank you so much Andy for the reply.. I will continue adding few spoons of baby milk powder in Asunra solution and will it this way.. This week we have appointment with doctor to decide date for BMT for my 2 year old kid.. His 10 years old elder sister is a complete HLA match..