Thalassemia Patients and Friends

Discussion Forums => Iron Chelation Corner => Topic started by: Bostonian_04 on August 08, 2014, 07:40:51 PM

Title: for a 8Yr old, is ferritin around 300 safe?
Post by: Bostonian_04 on August 08, 2014, 07:40:51 PM

Recently my daughter's ferritin is hovering between 250 to 350. She is on exjade (~ 17mg/kg) . I am worried that even with low exjade dose , the ferritin is too low and may affect her growth. We are going to review her growth chart with her hemo but wondering if Andy or Sharmin has any comments. Her Cu was low and we started her on the Cu-Zn balance plus the multivit, Raw one (suggested by sharni. Thanks Sharni!). We have not tested for Cu/Zn yet but wondering if exjade is chelating other minerals that may affect her growth. Any suggestions?

Title: Re: for a 8Yr old, is ferritin around 300 safe?
Post by: Dharmesh on August 09, 2014, 08:04:48 AM

Very good ferritin result. u can slightyl reduce the dose or can skip for 2 days a week

Title: Re: for a 8Yr old, is ferritin around 300 safe?
Post by: Bostonian_04 on August 11, 2014, 06:40:34 PM

Thanks Dharmesh for your suggestion. Here the hemo do not allow to completely skip chelation even for a day. so we reduced her dose. growth charts looks OK so far.

Title: Re: for a 8Yr old, is ferritin around 300 safe?
Post by: Andy Battaglia on August 12, 2014, 01:50:15 AM

You should assume that all chelators will chelate some trace minerals and these should all be supplemented to make up for this loss. I agree that chelation should never be stopped unless unavoidable. It's much better to cut the chelator dose.

Title: Re: for a 8Yr old, is ferritin around 300 safe?
Post by: Canadian_Family on August 12, 2014, 12:44:23 PM

At levels, close to 250-300, chelation can be continued on lower dose. However, doctors at sickkids recommend stoppage of dosage (1-2 months) if level of ferritin drops close to 100.

Title: Re: for a 8Yr old, is ferritin around 300 safe?
Post by: Pratik on August 13, 2014, 06:04:18 AM

It is an excellent level. Props for maintaining such a great ferritin levels! :)

As other veterans has said, it is much more recommended to lower the dosage to a point where it would just maintain around that level. I find stopping chelation kind of breaks the chain and it takes a while to get going. So make sure a chelator is always present on the board. Just alter the dosage and you should be good to go!

Best,

-P.

Title: Re: for a 8Yr old, is ferritin around 300 safe?
Post by: Bostonian_04 on August 13, 2014, 05:26:33 PM

Thanks Andy, Thanks Canadian_family, Thanks Pratik for your comments and suggestions.

Andy: we are continuing the extra Cu-Zn supplements in addition to the multivit. You are right...we the chelators, we can expect to see other trace minerals are also getting chelated. so a multivitamin with trace minerals is a must. Thanks again....

p.s. Read in another post that your daughter got married. Congratulations to her and her husband. Wishing them a happy married life.

Title: Re: for a 8Yr old, is ferritin around 300 safe?
Post by: Bostonian_04 on September 05, 2014, 10:42:19 PM

My daughter's ferritin has been around 300 for quite sometime. We had been worried about it as over-chelation with Exjade may affect her growth and we also saw increased stomach issue in last 1 month. So we contacted Oakland and here is the response we got....sharing it to thalpals who have kid in the age group 7- 8.

" We would target a ferritin of 400-600 in her age group. So reduce dose for the next month. Once ferritin rises above 400, increase the dose based on ferritin trend.
I am not sure how accurate iron saturation is during iron chelation therapy. A study had suggested iron saturation is underestimated while exjade is present in the plasma".