Chelaton Therapy

Hello Andy,

Friday my daughter has taken transfusion and that was 15 times.Yesterday we have checked her HB and ferrittin level.

Rerport:

HB 13.10
Ferrittin 926.20

In Bangladesh Asunra is available and I want to start her chelaton therapy in a low dose.As I earlier inform she is taking phenobarbital 5 ml twice a day for seizure treatment.She is now 26 months old and weight is 13.5 kg.

Please suggest  

ferritin is not a precise test for iron accumulation. It is an indiactor at best. One should not rely on the ferritin levels alone. The ferritin levels are impacted by many reasons.

I know there are standards dosage for asunra based on the body weight (20mg/kg or 30mg/kg) of a child. I would consult with the doctor for appropriate dosage.

Agree with Canadian Family. Please consult with your doctor before starting chelation. Also suggest a baselien MRI for liver iron before starting chelation.

Lokkhi,

Your child has had enough transfusions to consider beginning chelation. Your doctor will have to prescribe this. Because your child has shown other sensitivities, I suggest that you begin chelation very slowly. I will be happy to help you with this.

Hello Andy,

Last night we discussed with doctor about the report.He advised as ferrittin level staying within 1000 so not to start chelaton now.

Take some more times to start.

Ferritin results fluctuates time to time. At level of 926, chelation should begin, you should target ferritin less than 300. Your child has already enough transfusions to warrant the chelation therapy.

It is very possible that ferritin levels go up once you start chelation, Simply put, iron in the organs will be chelated and enters into blood stream.

Thank you Canadian_Family.

You are right but doctor not interested what to do ?

Hello Andy,

Whats your opinion?

May I start the therapy in a low dose.Please suggest me the dosage and procedure to take...

Lokhi ,
as everyone said 926 is enough to start chelation ,, otherwise once Fe cross 1500 then it will be a little more difficult to get ride/control over it ...  so dont let it go above 1000 and try to keep it within normal ranges ....

I think chelation with a low dose of Asunra could be started now. I would advise no more than 1/3 the normal dose for at least 2 weeks, and maybe a whole month before considering raising the dose. You are not going to want to start this child on a higher dose, so chelation should begin soon.

Thanks Andy and nice friend.

From May '2014 my baby taking phenobarbital and doctor advised to continue up to 2 year.The course will be complete on May'2016.Phenobarbital and Asunra may I continue both together? Bcoz both are drug.

Whats the normal dose of Asunra?She is now 27 months old and weight is 13.5 kg.

Andy, what will be the 1/3 the normal dose as you advised and when, how she will take it?

Please help me to start chelaton.

Hello Andy,

In Bangladesh 100 mg and 400 mg Asunra available in Novartis branch office.

Please help me about suitable dose for my baby..

Lokkhi,

When you first star Asunra, give 100 mg only at first until the child gets used to the drug. It's easiest to take if the tablet is ground up and mixed in with some soft food. I would suggest that when you first start, give it one day and then skip a day and see if there is any reaction. Reactions can be a skin rash or upset stomach. Give it every other day for the first two weeks and see how does with it. It's early so there is no need to rush. Let her take her time getting used to taking it.

Thanks Andy.

I read about split dose and various advice of yours.Will my baby take the tablet once or I split the dose?Are Orange or Apple juices mandatory?

May I mix and give it with any food which prepared with milk like suji? Now she is starting chelaton so is Vit C necessary?

Getting all informations from this forum.

Thank you so much Andy 

Lokkhi,

I think it's easiest when the tablets are crushed and mixed with foods. Many patients even take it after meals, so it doesn't upset the stomach so much. You may need to experiment a little to find the best way to get her to take it.
Vitamin C is an important nutrient and is essential. She should get as much from food as possible, but if she can't she can take up to 100 mg at this age.