Hassan`s ferritin

Exjade is available in 125 mg tabs. Is it possible to get them and keep the even dose of 375 mg/day?

 Hi Madisonmom

What is the dose of exjade given to your child

manal

Because bacteria and viruses thrive on iron, the body will pull iron out of tissue and store it in serum ferritin during infections, like colds etc. This is not related to actual iron load in any way. It is simply a defense mechanism the body uses to minimize the replication of the infectious agent.

the body will pull iron out of tissue and store it in serum ferritin

Very interesting to know that the body works like a chelator at some point ,Andy do you know what is secreted in the body that enables this to happen. Scientists should make use of this ability of self defense

manal

This can't be considered to be chelation. Ferritin is used by the immune system during infection, and the excess storage of iron in serum ferritin is normally temporary. In those with iron overload, the body stores iron in serum ferritin to try to prevent iron damage. 

What is the normal role of ferritin?

http://www.fpnotebook.com/Hemeonc/Lab/SrmFrtn.htm

An iron protein complex, containing up to 23% iron, formed by the union of ferric iron with apoferritin; it is found in the intestinal mucosa, spleen, bone marrow, reticulocytes, and liver, and regulates iron storage and transport from the intestinal lumen to plasma.

This is something every parent of a thal should know. It really helps calm the nerves when you are informed.

http://www.nature.com/ejcn/journal/v52/n5/abs/1600573a.html

Results: A significant shift of serum ferritin concentration towards higher values was observed in those who reported an upper respiratory infection with fever during the preceding month](P<0.001). Significant differences were found between serum ferritin values in healthy, not infected adolescents and serum ferritin values in those with ongoing infection, both in boys and girls in the two materials (P<0.01), and in those with a mild infection during the preceding three weeks.

Conclusions: The prevalence of recent infection should be included as information when trying to assess the prevalence of iron deficiency on the basis of serum ferritin measurements and when examining relationships between iron status and composition of the diet. The findings imply that differences in prevalence of iron deficiency between different studies might partly be explained by differences in prevalence of simple respiratory infections. The diagnostic sensitivity of the serum ferritin assay...decreases for subjects with recent such infections; similarly, there will be a decrease in the diagnostic specificity for haemochromatosis (a hereditary conditon which results in iron overload).

Although this context is about accurate measurement of iron in iron deficiency, the findings apply, as infection causes higher ferritin levels. Mild fluctuations in ferritin are not meaningful and low ferritin levels do not necessarily mean that organ iron is also low.  Ferritin is not an accurate measure of organ iron, so other methods such as MRI, Ferriscan, SQUID and T2* are necessary to give a true picture. This also helps in designing an appropriate chelation program.

Andy,

After how many years of transfusion should one get a ferriscan or MRI or T2*?

Zaini.

Zaini, what i was told is as soon as the child can sit still and does not move in order to go through the procedure. And the frequency will be decided according to the results

manal

But when i asked my daughter's hemo ,she said you don't need it right now It's been almost 4 years she has been transfusing.

Zaini.

Zaini, may be Andy can shed some light on this issue here, cause i know some children who have done a ferriscan and have been transfusing for for a short time too. May be it is different protocols as i find that many tests are required in the thal guidelines published by the oakland center that are not all done here

manal

Hi Zaini,

My son had his first liver biopsy when he was 2 years old - and his second when he was 3.  He had his first SQUID when he was 5 years old and second when he was 7 years old.  His third SQUID test was done when he was 9 years old.  His first T2* was done when he was 9 years old as well. 

Part of the standard of care in the past was liver biopsies, thank god for the availability of SQUID now.  Liver biopsy requires general anesthetic and not to mention the biopsy itself.  They ask the patient to rest afterward, but my son was 2 when he had his first biopsy and he decided that it was fun to jump on the bed at the hotel room all day when he was discharged from the hospital.  His first LIC was done when he had been transfused for 2 years. 

We have never had a ferriscan so far. 

His early results correlated very well with his SF.   

Sharmin

It may sound dumb,but what is a T2*?Kins of MRI?

Zaini.

T2* uses MRI to measure iron concentrations.

If a child has chelated regularly, it is acceptable to wait until age 8 before doing a heart scan, like T2*. Liver iron builds up earlier than in the heart and some iron loading is seen as soon as one year after the beginning of transfusions, so liver testing should be done at an earlier age. However, because of the problem of getting a small child to sit still, it is common to wait until about 5 years old before having the liver scanned. Patients who are not chelating will have iron loading at a much earlier age, so scans would be appropriate earlier. Patients with high transfusion needs should also be scanned as early as possible. Some of the decision on whether or not to test involves whether or not anesthesia would be necessary for the child to be scanned. If it is not possible without anesthesia, the scan may be put off until a later age. This has to be accompanied by a full understanding of the importance of regular chelation.

I think once she is settled with Asunra,i'll go for the MRI.

Zaini.

Owh, I can only dream about that test. We do not have it hear, and i got the wrong port.
I hope your daughter is doing well with Asurna. I just went from 1125mg to 1250mg and I was doing well. I hope we both see soon good results. It annoys me that it does not come down. I want it soo badly, but I should focus on other things - if not I will drive myself crazy. 

Hi Dore,

Little Z is doing fine with Asunra for now,Alhumdulillah,but i am anxiously waiting to increase her dose,as dose as low as 15 mg/kg is not much effective,after completing a month i'll ask her doctor to increase her dose.I am glad that you are doing dine with the new dose .

Zaini.