Hearing Test

Hi Canadian Family,

I'd like to direct you to the post I did about the most recent studies concerning Exjade use in children. You can read it at

http://www.thalassemiapatientsandfriends.com/index.php?topic=1373.msg11148#msg11148

I would also like to suggest a bit of advice. Many patients get short term side effects from using Exjade. Chief among these are a skin rash and stomach discomfort. To minimize these side effects, it is advisable to start Exjade with a low dose and slowly work up to the maximum dosage. Don't worry about short term increases in ferritin as this is normal as a patient is working up to the high dose. Speak to your doctor about this and see if the doctor is willing to allow your daughter to be slowly introduced to Exjade.

Thanks for the advice Andy.

We will discuss the dosage with doctor on our next visit.

Regards

Hi,

Keeping an eye on the hearing test, once again my daughter had failed the test and this time its even worse in the right ear, left seems a little improved.

We have not heard anything from the doctors, the thalassemia nurse was a little concerned. We are not sure what is next.

Regards

The studies I have seen on desferal and hearing loss show that even after cessation of desferal, a small percentage of patients continue to experience reduced hearing levels. None of these studies reported what happened long term though. Normally, the hearing returns to normal. In cases where desferal was not stopped, the hearing loss remained but did not progress. Most doctors agree that the benefit of desferal outweighs the limited damage to the hearing. However, other possibilities should also be considered and further examination may be helpful. I ran across an interesting recent case that found the hearing loss had nothing to do with desferal but rather, with bone marrow expansion in the ear.

From http://journals.cambridge.org/action/displayAbstract;jsessionid=DB571C8A171C750429D540B618AB9C8F.tomcat1?fromPage=online&aid=1379332

Objective: The aim of this report was to highlight the fact that hearing loss in thalassaemia patients can be related to marrow expansion affecting the ossicles, resulting in a conductive loss.

Case report: A six-year-old boy with transfusion-dependent beta-thalassaemia developed a unilateral hearing loss shortly after commencing desferrioxamine therapy. Otoxicity was assumed, but the deficit was later found to be of a conductive nature, due to marrow proliferation within the ossicular chain as a consequence of the disease process – a phenomenon previously unreported in the literature.

Conclusion: It is important to elucidate the precise nature of new onset hearing loss in patients receiving iron chelation therapy, in order to avoid unnecessary cessation of much needed medication, on the assumption of ototoxicity.
(Accepted July 16 2007)

This is a very recent report and it raises the question of whether desferal should be automatically assumed to be the cause of hearing loss. The authors of this report believe that desferal may be unnecessarily withdrawn in some of these cases.

Thanks for the article Andy. I will print and deliver it to the doctor on my next visit.

Regards

Unfortunately, the fourth hearing test came even worst, something needs to be done I am trying to reach the hematologist to get an opinion to have some procedure done. Will update soon.

Just finished talking to the doctor, she is trying to get an ENT specialist appointment to clear the fluid from my daughter's ear. The procedure includes clearing the fluid and get understanding of what is going on inside the ear. The appointment date is not finalized yet.

Thanks.

Best of Luck Canadian_Family
 
Dimple

Canadian Family,

Our prayers are with you

We had the same issue with our son - after being off of desferal for a number of weeks (I don't remember how long now) - his hearing did return to normal.  I'm sure the same will be true for you child.  All the best with exjade!

Sharmin

Hello canadian family,

I know 3 kids who had started exjade when they were two years old. My daughter is now 18 month old and will start exjade when she turns two. Goodluck to your daughter. Hope she passes her next hearing test.