starting my son asunra tablets. plz help

Hello everyone.
 I am a new member here. First i want to tell about myself that I am Zara from Pakistan. I have a 20 month old son diagnosed with beta thalassemia major. He was born in England so when he was just 4 weeks old they confirmed us about his thalassemia. but due to some reasons we had to come back to Pakistan. He was first transfused when he was 4 months old at 8.5 Hb. Its always been a problem to find his vein to pass the canula. Now we transfuse him every 5 weeks and try to maintain his Hb at 10. We checked his ferriton level when he had 12 transfusions and he was 16 months old. His levels were around 1150 so the dr suggested us to start 250 asunra first for 2.5 months then increased it to 300 and now from last 3 days I am giving him 400 asunra in some water and orange juice. His weight is 13.5 kg. Its been 4 months since iam giving him asunra. I think he has pain in his joints and legs bcz sometimes he presses his legs. He is too small to tell me about ay sideaffect. We checked his ferritin level again this month it was 1250 it has not decreased but increased 100 units after taking asunra for 3 months. The dr told us to check the ferritin level after 6 months but we checked it for the safe side.
 Now the problem is this that he is not willing to take the medicine. He cries alot. First i use to give him some chocolate, candy or anything so he can drink it. But now he dont want anything. I have to forcefuuly give him while he is crying but i am afraid he can choke. I've read on ur site somwhere that now we can give it with food and even mix it with food like yogurt. I am just worried that whether asunra is still effective in yogurt or any food or not?
can you all plz give me some ideas and guide me.

Zara,
welcome to the forum. 1st of all want to mention that with Exjade, you need to monitor the ferritin on a regular basis (we do it monthly) to know if it is working or not. Also monitor your son's kidney and liver functions monthly to make sure Exjade (aka Asurna) is not creating other issues. As per your question of mixing with food, yes, you can certainly mix Asurna with any food.....Doctor in Oakland, CA told us not to mix it with hot (temperature wise) food. That's about it. As per Dr. Lal (Oakland, CA), mixing with food will actually reduce the stomach issues patients complain about. Yogurt, cereal, ice cream, smoothie etc all should work. you can also try switching food to see what your son likes better or to break the monotony... for us, we stick with juice for our 8 yr old daughter....but we switch the juice on a regular basis...1st it was apple juice, then orange and now we are off to apricot/mango and i am already thinkign which one should be next...  

Thanks alot for ur reply.
From today i will split his dose in two and give him mixed some food bcz giving with juice was a big problem.
Today i gave my son 200 asunra crushed and mixed with yogurt on empty stomach. I will give the other 200 in the evening mixed with his cereal (cow and gate banana porridge, but it has some iron in it.)will it cause a problem?
Can i mix asunra with some banana or potato? Bcz he is a very picky eater dont eat meat or any fruits except banana.
and i want to ask one more thing after giving asunra mixed with yogurt, Do i have to give him water to drink as well?
Really sorry for my stupid questions but i can only ask to u ppl.
Here in Pakistan drs really dont bother if ur child is even dying. They dont know about any updates or any test for thalassemia children. Our haematologist he doesn't even see my child and just write the transfusion and tablet dosage every month. No dr (my son's hemo or child specialist) told us to do kidney or liver test after or before starting asunra.

Dear Zara,

As I know from the discussion of this forum Asunra or Exjade are more effective if it is take with vitamin C. Last week my 18 months babies ferritin found 459 so not yet start any chealaton but if you study this forum you will get so many answers that will be helpful for you and your baby also...

Best Regards

Thank you lokhi maa.
Andy plz I will be so thankful if you reply to my posts I'm detail.

Zara,
since you are having difficulty giving your son med...so don't split the dose now and make it a hassle twice a day...it is probably too much stress every day....That will be my thought....
We had split the dose at some point when daughter was complaining of stomach issues but we do not do split dose anymore and it didnot affect iron chelation even with once a day dose. It is just making sure the dose is given every day without missing any dose, unless the child has fever.
With Exjade, the child must stay hydrated well but that is a general guideline in hot weather anyway ..so don't specifically think Exjade and get stressed....As I mentioned, any food (at room temperature or cold) is OK so use your son's favorite food choices and use it.....Currently doctors do not recommend taking Exjade in empty stomach. so don't stress about giving him Exjade in empty stomach.
Monitoring kidney and liver function is very important. so please do that diligently every month when on Exjade.

p.s. Iron in the food is not easily absorbed in the body...every transfusion gives him more iron......It is like a big bucket of iron from transfusion vs a spoon of iron from food.... so do not worry about iron in food unless he is eating huge amount of red meat every day..

Thanks alot
I gave my son in split dose today. One in the morning 9 am empty stomach crushed and mixed with yogurt and the other 200 in the evening at 7 pm crushed and mixed with his cereal. He is having constipation also. Is this bcz of asunra? or maybe bcz of his diet bcz he doesn't eat any fruit,veggies,meat just cereals and one half boil egg in the morning. First it was a problem for him to chew anything and he used to gagg alot so i was afraid and i didnt give him vareity of foods and now i try and he doesnt want to eat anything.
I am giving him folic acid, multivitamin(without iron) and a calcium medicine.
I will definetly do the liver and kidney tests this time when i will go for his transfusion.

Zara,

The most important thing is that he takes the chelator. It doesn't matter how you give it. Whatever food he will eat with the tablets crushed and mixed in is fine. Bananas are a very good food and recommended. Potatoes are also very good and most nutritious when not peeled. Wash the skins before using. It is best with the skin because that's where most of the minerals and much of the fiber is. He needs more fiber in his diet so he isn't constipated, and remember that insufficient fluid intake also adds to constipation, and that when using Exjade, one must also take much water regularly to help protect the kidneys and liver. Keep trying new foods, especially fresh fruit and vegetables, and try to use breads containing whole grains.

Zara, if there are any questions that have not been answered, let me know. I've been having some physical issues that have limited my ability to work at the computer for extended periods and have had trouble keeping up.

ANDY thanks alot for your reply. I pray that you get well soon. You are a big hope and inspiration for all of us. I joined this forum bcz of you.
Here in Pakistan highly qualified drs don't have that much information which you have. I am really afraid if something happens to my son who will I ask bcz drs don't bother. Not any dr told us to do the serum ferritin or liver test. He started asunra at 16 months of age so he is very small to tell us about any side effects even if his tummy hurts how can he tell me. I am really concerned. He is our only son.

You have got plenty of good advice on the forum. Please do not be worried and confused. You are doing everything right so far. Keep giving asunra (no matter how often or with what food), plenty of water and check for kidney function, ferritin level on monthly basis.

You are best to determine how to manage your child in terms of food. The other problems you mentioned, tummy ache, picky eater etc, they are normal with any child (thal or not).

Do not pay too much attention on ferritin levels at this time (just keep records on monthly basis), ferritin levels tends to increase when chelation starts and it declines over time. Keep visiting and gain knowledge.

thank you so much for your kind advices

Hello everyone
I had my son's transfusion 4 days back and we also did his kidney and liver tests. Unfortunately the ALT reports are not normal
Serum Alt 112    upto 42U/l
Serum creatinine 29      27-62/l

plz plz tell me what to do. I am really worried. I cannot repeat his tests weekly as it's really difficult to find his veins and he got two pricks on his transfusion both on his feet. I don't know what to do to ease my babies pain.
.

And also tell me which foods can help to reduce ALT ? Someone told me to give him glucose bcz it helps in reducing Alt and jaundice?Is it dangerous to have High ALT level?
    We have been giving him asunra for almost 5 months (he is just 20 months now) and from the last three weeks I have splitted his dose and giving him with soft foods. But his stool colour hasn't changed much it's still light brown. Does that mean he is not chelating well?
 

ANDY I will be grateful if someone will do reply and tell me their experiences about asunra and high ALT level.
And also I want to know if anyone is giving asunra to their babies with food (crushed and mixed with food). Plz share with me and help me.