Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: Binita on February 28, 2015, 02:56:36 AM
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Hi andy and everyone,
I need ur help ....please give some suggestion my son is 5 yrs and we realised that he is not responsing us from few mnths properly . On doing a hearing test we got to know that he has got 60% of hearing loss. we aided him with a hearing aid . When we visited our haemotologist doc he said to stop the medicine for 3 mnths as the hearing is reversible. His ferritin right now is 1450. Is it advisable to wait for 3 mnths. And is it reversible....if yes then how long it might take...so that we can wait n get back to chelation again with other combinations. But doc was saying all medicines have this side effect........
Please advice as 60% hearing loss is too much for a 5yr old child and it ll only increase on medication.
And please advice on any other test that needs to be done for him in general to keep a check on his health.do ferritin in liver ....kidney needs to checked now.
Thank you
Please give ur valuable suggestions......
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Hi andy n all, waiting for ur suggestion....plz advice
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Asunra is being used? For how long? And is the hearing loss suspected as being related to the chelator or is there a possibility it is not related to thal?
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Hello Binita along with Andy's question could you please tell us what is the amount of dose you administer and what is the weight of your son?
Have you tried split dose of Asunra? How does he take it -with apple juice? Have you started with small does of Asunra initially?
Novartis has warning about hearing loss and some strain on eyes as well, but the percentage of affected patient is very less.
http://www.fda.gov/downloads/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/UCM154395.pdf (http://www.fda.gov/downloads/Safety/MedWatch/SafetyInformation/SafetyAlertsforHumanMedicalProducts/UCM154395.pdf)
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Hi andy and jay,
My son is taking asunra from 3 and half yrs now. We started with 100mg n then he started taking 400 mg for for very few mnths initially ferritin was not coming down but lateras his ferritin level was very good that is 500....again we reduced it to 200 mg. Right now his ferritin is 1450.i was giving the split dosage when i was giving 300/400 mg. But otherwise only one time at night before sleeping.Earlier i was giving the medicine with sweet lime juice but then slowly i started giving only in water.
it is suspected that it is due to side effects of taking the medicine cause there is no family history of hearing loss and we are sure that he didnt have any problem of hearing till he was atleast 3 yrs. Only fron past one year i started feeling that he got some problem so we did the hearing test.
What should i do.....all chelators ll have the same side effect...
Please suggest andy n jay.
Thank u
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Sorry forgot to mention that he is 17 kg now.
Thank u
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Binita,
The Standards of Care for Thalassemia address hearing loss.
7.1 Audiology
A baseline formal audiology exam should be given prior to starting
a chelator. Any history of hearing difficulty or tinnitus should
prompt a physical exam of the tympanic membranes and formal
audiology testing.
Inquire about hearing problems at each monthly visit. A screening
audiogram should be performed in clinic every six months. Refer
patients for formal audiogram assessment every 12 months, or
more often if a patient is unable to undergo a screening test in
clinic.
If there is new onset of hearing loss or tinnitus, the chelator should
be stopped and the audiogram repeated. The testing should be
confirmed within a month. The chelator can be restarted if the
hearing changes have improved. Reevaluation of iron status may
be necessary.
The chelator should be temporarily stopped. If hearing shows improvement in one month, the chelator can be restarted.
We are hearing many reports of hearing loss in young children. Perhaps we should be looking to achieve a balance between ferritin level and chelator dosing, so that toxicity is less of an issue. Perhaps we should not strive for such low ferritin levels when an audio issue is presenting, as to avoid toxicity. In this case, a break from chelation and then a restart, and acceptance of ferritin in the 1000-1500 range until the child is a little older might be the answer.
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Thank you Andy for ur advice. So we ll do a hearing test in few days n see if it gas improved. And accordingly we ll continue with the chelation again.
Do u suggest with continuation of the same medicine i.e asunra or some other chelator.
Thank u andy.
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It is normally recommended to continue with the same chelator. Keep in mind that many get the same effect on hearing from desferal, as well, so switching chelators may not be the solution.
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Binita,
I hope you see improvement in your child's hearing at the next test.
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Hi andy n all well wishers...
Its been three months that i have stopped chelation...but to my surprise ferririn level remains the same....is it a sign of worry as in is iron depositing in liver or heart.
I was giving him homeo medicine from 1 and half months but it was nothing to do with chelation.
Plz advice if any thing needs to be done. His ferririn is 1400 now.
Thank you all for the support u all give.
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There are many people on this forum, who are proponents of hyper chelation and feels that ferritin levels of 200-300 is optimal. I have always advocated that children are different. They should not be hyper chelated.
Our daughter has been given numerous breaks from chelation when she reached 500. Chelation resumes when she reaches 1000.
Binita,
If I were in your situation, I would have waited for audio results to improve before starting chelation again. Ferritin can be dealt with later, it is so soon for iron to start damaging the organs. Please check the results of audio and if it has improved, you can start the chelation.
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Canadian Family,
I agree, we need to be mindful of possible toxicity in young children. Dr Vichinsky advised that it's best to maintain ferritin levels above 300 - even for my 16 year old because there's a risk of removing iron from the nervous system that is actually necessary and the potential to cause other side effects when there isn't much iron for the chrkatin to bind. For younger children ferritin should not drop below 500.
Dr Vichinsky revommended that when iron levels dropped low in children the dose should be changed to a negligible amount split daily or taken every second day. This prevents any free iron from entering organs such as the heart or pancreas. But if there are symptoms such as auditory or visual definitely chelators should be stopped until the tests come back normal.
This is slightly different from the Toronto approach of removing the chelators completely until ferr reaches a certain level. I think both options are good and I like the break kids get from the chelator - especially the younger children.
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Thank you canadian family n sharmin...ll definatly get a hearing test done again n then take a decision on chelation.
but i wanted to know as there is no noticeable change in ferritin from 3 months without medicine does that mean that iron may be collecting in any of the organs...or do u mean its nothing to worry about at this age.
Thanking you
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Hello Binita,
How old is your son? How much does he weigh? Also, what is his ferritin level?
There is a good chance that the toxicity has cleared out of his system by now, but you should definitely have that confirmed through a hearing test.
I don't think that you have much to worry about about at a young age, if he has been well chelated for many years in terms of iron accumulating in his other organs so quickly.
When you restart him on chelation, start on a low dose and split that dose so that he's taking it twice daily. Slowly increase it to the therapeutic level and he should be fine.
My son had a similar effect with desferal when he was 5 or 6 years old. We withdrew desferal until his hearing test came back normal and then restarted. This is fairly normal in young children.
Best wishes to your little man :hugfriend
Sharmin
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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.
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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.
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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
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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
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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.
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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.
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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...
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It is advised that patients on chelators have their hearing checked annually. If a problem arises, changing chelators can be considered.
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Thanks Andy :)
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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.
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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
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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.
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Thank u andy.