hearing loss for 5yrs taking asunra

Hi sharmin,
My son is 6 yrs n weighs 15. His ferritin is 1400 now.

How long did it take for the hearing to be back to normal for ur son. I have stoppped from 3 mnths but dont see too much improvement yet. It might take time i think as doc has told 60%loss of hearing.

N i have one more query: my son looks very small as in no body says he can be 6...he is short n very small to look at. I feel his growth is being affected. Is there anything that i can do like for example i dont mix complan or any thing in his milk as it contains iron as advised by doctor , then i dont give him eggs frequently etc. Is it that i am missing on something or can i do something for his proper growth other than maintaining hemoglobin at 10. He gets tired very soon.

Please advice.

If you are transfusing him regularly and his Hg is above 10, you should not worry too much. Every child is different, they take a lot from parents genes in terms of structure and have different growth spurs and development charts. The development charts are general guidelines, ask your doctor if he is falling behind the standard baseline.

Do not worry about giving him iron rich food, the amount of iron they get from food is very small compared to transfusion induced iron. Of course you are not going to give him steak every day. You can introduce milk, meat, eggs, vegetable etc more frequently to your child without fear of iron. These foods contain lot of essential minerals other than iron which helps in child development.

As for audio test, 60% hearing loss (I think you mean 60db) this is moderate hearing impairment as per WHO charts, and will take some time to reverse. Please do not assume that there is no improvement, only authentic audio test will determine if the hearing loss has reversed. Please go for audio test.

I agree very much with Candian family... Nutrition is very important and you shouldnt deprive your son from any food....he needs a balanced diet to grow
Manal

Binita,

The effect on my son's hearing at the time was slight and it reversed in one month - however it depends on the level of toxicity.  

Like Canadian_Family and Manal have said - I cannot stress enough the requirement for adequate nutrition.  In a tranfusing thal major excessive iron will not be absorbed from the diet in the gut.  It is very important to give your child adequate nutrition and a lot of calories - when the body is exposed to constant fluctuating hemoglobin levels - as a thalassemic child is then the body will concentrate on maintaining survival functions of the body and the growth and bone age will fall behind.  

It is not uncommon for thalassemia major children to have a bone age of 2 to 3 (even more) years behind their peers.  Increasing calories, and nutrition rich foods that Canadian Family has listed will ensure that your child will grow well, have healthy bones and essential proteins and minerals.   Keep in mind also, as Canadian_Family has said there are many factors determining when and how much your child will grow such as genetics.  30% of boys normal healthy boys experience constitutional growth delay - which means they will grow later - when their peers have reached full height these boys will continue to grow and reach a height within their predicted genetic potential.  

For now - give your son a variety of foods and have his hearing retested as soon as possble.  

Sharmin

Binita,

At this age, you have to take care of the toxicity issues first before worrying too much about the break in chelation. That can be made up later on. The others have given you good advice based on experience. Don't make any decisions about starting chelation again until you've had the hearing test done again.

Hi All,
I am posting after a very long time.

I had told about my son's hearing loss about three years back n expected it ll be back by now. But unfortunatly there is no improvement. Instead its gone little bad which doctores have said is negligible though.
After we understood that the hearing loss is due to asunra we stopped his chelation for almost a year. But when the T2 test was done it showed a severe iron overload in liver and ferritin 3500. N we started chelation again with Kelfer this time around 6 months back.Ferritin report in January 2017 showed 1800.
He is on 500 mg twice a day after food.

My concern....is it taking out iron from liver ..does ferritin count say that.
My son's hearing loss...ll it never become alright.
I give only folic acid n chelation n no supplements. what all should i give. I was advised to give calcium n magnesium for 3 months which i finished.  does homeopathy medicines help in supplements.

I am very disappointed with his hearing condition.

Please guide me.

Dear All,

My baby is now 3.5 yrs old.Her weight is 16 kg and taking 400 mg Asunra daily by split the dose.

Oct 2016 her ferritin was 1870 and last day her ferritin 1559.She takes transfusion monthly.

Is hearing loss occur for Asunra ?What will I do ?

400 mg is ok??

Please advice...

It is advised that patients on chelators have their hearing checked annually. If a problem arises, changing chelators can be considered.

Thanks Andy

Binita,

Yes, kelfer will remove iron from everywhere in the body. While it may not be as efficient as desferal in removing liver iron, it does remove it. There are many patients in India using kelfer, only and doing quite well. If future MRI does show any iron concentrations in the heart and liver, desferal can be added as complementary chelation.

Changing chelators after years of use can help reduce the long term effects of that chelator. I hope kelfer will work well for your son.

Thank you Andy. Ll do a hearing test next weekend again n will let u know.
Is anyone aware where all is T2 test done in India.

And Andy we cannot add Desferal as we did give him that too for some time n we noticed a slight increase in hearing loss so doctors said not to give Desferal too.

So we are not left with any option i guess.

Please advice on vitamin supplements for 8 yrs child n for how long.

Thank you

Supplements are something that should be part of the lifestyle for thals. There is continuous need which requires a continuous need for nutrients. I have posted suggestions for supplements for thal minors at http://www.thalassemiapatientsandfriends.com/index.php/topic,4890.msg46774.html#msg46774  Adjust dosage based on weight of a child. A child of 8 would be able to take 1/3 to 1/2 of an adult dose.

Thank u andy.