Desferal Response

Hi,

This is confusing and frustating for us. My daughter started Desferal a year ago in January 2006 when she was 2 and half year old (one vile per day for five nights a week). Her ferritin level was 1500 at that point. In June her Ferritin rose to 1900, despite we being compliant with desferal. In October her ferritin rose to 2900. At that point we screamed at the doctor to do something about it. The dosage was increased to six nights for a total of seven viles per week. Yesterday we found her ferritin came back just a notch to 2700. She is 34 lbs so the dose seems okay.

I am beginning to loose faith in Desferal, looks like its not doing its job. We have been very compliant and hardly miss a dose. What you guys think?

Regards

Hi Canadian Family,

Are you giving any vitamin C along with the desferal and has the efficacy of the desferal ever been tested in your daughter. Serum ferritin levels are sometimes misleading but testing urine for iron may give a more accurate reading of how much iron is being removed.

From http://sickle.bwh.harvard.edu/dfiv.html

Ascorbic acid increases iron excretion with Desferal ®. Vitamin C can be given with the following provisos.

    * The ascorbic acid should be given only after the infusion of Desferal ® has been in place for a month or two, to ensure that the patient is using the medication properly.
    * The dose of ascorbate should be 250 - 500 mg per day, orally.
    * Ascorbate should not be used on days on which Desferal ® is not used. ...

When testing the efficacy of Desferal ® therapy, 24 h urine collection should be performed on the 3d day for iron determination. This value should be compared with a preinfusion 24 h urine iron determination. In order to gain benefit from the use of Desferal ®, a 24 h excretion of 30 mg or more of iron is generally required...

Has your doctor given any explanantion for the rise in ferritin levels?

Andy

We are giving vitamin C with each dose, the doctor did not had any explanation as to why the ferritin rose. She did however said that she is not concerned at this point since ferritin levels tends to fluctuate big deal after desferal start (whatever that means) 

Regards

What the doctor is trying to explain is that once you begin chelation, iron from the tissue and organs is  released into the blood and shows up in the serum ferritin level. I have heard the same thing with a patient whose ferritin rose after being on exjade for awhile. It is actually much preferable that the iron be in the serum ferritin, because it does no harm to the body there. The levels should eventually drop. A simple way to see if desferal is working is from the color of the urine. If it is dark and rusty in color it is working. Urine can also be tested to see how much iron is being removed. If the urine is normal in color, then the desferal is not working as it should.

Andy,

Yes, the urine is light orange in the morning and that's a good sign. I think she is scheduled to have a liver biopsy scheduled in March or April.

Thanks

Why a liver biopsy? Can't you make a SQID. It is without risk and pain but can give you as good results as a liver biopsy. I know the Squid center in Europe (Germany and Italy) and I think there have to be also some in America. You would save your daughter from a bad experience, because it is painfull.

Thanks for your concern Gabri, my dauther is only 3 and half year old. Squid is recommended for children six and over, only because children can't stay still for 20 minutes under the scan. If you know what I mean 

Bye

The yungest patient at the University of Eppendorf in Hamburg (Germany) has made Squid at the age of 3 years.
More infos at the following link: http://www.eiseninfo.de/biomag2002.pdf

In some cases they give the patients tranquilizer but not everyone at this age.

Hope it helps to get more infos about SQUID

Take care

Thanks for the info Gabri,

As a parent we have declined to put our baby to sleep just for Squid, liver biopsy will be done using local anesthetics. The reason is because my daughter had a hard time (once) coming out of full anesthesia.

Um... I might sound pretty stupid asking this...

Can't we wait till the child sleeps naturally?

Take care, Peace!

Sajid,

I think you misunderstood. The SQUID is like an MRI and the patient needs to stay still for some time. This is very difficult for a young child who may also be frightened by the whole process. Most kids that age won't be very cooperative so a biopsy may be the only way to determine liver iron at that age. It's over pretty quickly and doesn't need a general anesthetic.

Dear Canadian_Family,

I want to put your attention of one statement of the links page. From 23 children only 4 needed an sedation. The yungest age of 1,6 didn' need sedation. Its not a matter of age but how activ the littel are in this situation. 
You also can stay near to your daughter during the whole time.
At the end you know your daughter the best so you will know what will be the best for her.