SQUID available In Canada

We were informed that squid is now available in Canada at Sick Kids Hospital, Toronto and they will be doing the test starting March 2007. My daughter is the first patient to be scanned at March 1, 2007. This will be test for child that young and they are providing specialised goggles showing cartoons for 40 minutes (i want to be a part of that). There is no way doctors in North America will put child to sleep just for the test.

Disturbing news for us is that my daughter's ferritin is not coming down and looks like Desferal is not working on her. Based on the SQUID results, doctors will decide to either increase the desferal dose or put her on Exjade. In later case hospital will need a special permission from Health Canada to start Exjade on such a young child (first case to be tested since Exjade inception). We are just keeping our fingers crossed.

Regards

 

I'm happy for you that SQUID is also available in Canada. With you by here side your daughter will make all she have to do without any problems.

This are realy greate news. I wish you the best.

Sorry to hear that your daughter's ferritin level is not coming down. I have had 2 SQUID tests, and they were not invasive or painful at all. Staying still is an issue, just so they can get accurate readings, but it sounds like they are addressing that with the cartoons. I think it will go OK. Good luck and keep us updated. Jean   

Hi guys,

I just like to clarify that the SQUID test is not available in Toronto, rather we had ferriscan available. We were misinformed by some hospital staff (I am sure they didn't know either re. difference between ferriscan and SQUID). The test on my daugther was done on April 16, 2007 and the results of ferriscan will be available in four weeks. I will post them.

The test was 40 minutes in duration and my daugther did fine while watching Dora movies on specialised googles (she didn't budge for a second). The test was reported fine and successful. It will be initiated for other children as well.

Regards

Ferriscan is perhaps the most accurate measure of liver iron concentrations, and is an indicator of what can also be expected in the heart as iron accumulates first in the liver. It will give you a far better picture of Dora's condition than serum ferritin tests do. I will be very interested in what it shows and praying that it is good.

Thanks Andy, We are keeping our fingers crossed.

Regards

what is SQUID???

Zaini,

We had a discussion about SQUID on our board a while ago, please see the link below for details.

http://www.thalassemiapatientsandfriends.com/index.php?topic=642.0

Thanks

Thanks for the link Canadian Family.

ZAINI.

Hi,

So finally we got the ferriscan results. The result shows Average Heptic Iron Concentration of 12.7 mg/g dry tissue. This is high; recommended for Thalassemic is 7 mg/g and for a normal person it ranges from 2-2.5 mg/g. The report shows scanned picture of liver with "Transverse Relaxation Rate (R2) Distribution (no idea what that is). Anyways my daughter Desferal dosage has been increased by one vile each week or four viles per month.

Also, she just got UTI infection recently. But doctors are asking to schedule kidney scan to confirm if evrything is alright. We will be arranging for that shortly.

Regards

Dear Canadian Family,

I hope that your daughter's iron levels come down soon.  I understand that we have to be patient b/c iron levels can go up much faster than they come down.    Our son's iron levels recently increased a little too and we have been waiting for the past couple of months for them to decrease - his desferal has also been increased - his ferritin levels are coming down slowly.  I wish you luck  .

We are also in Canada and we were very excited to hear that SQUID may be available here, b/c we usually go to Oakland for SQUID testing. 

Andy,  would you recommend ferriscan testing over SQUID testing?

Sharmin

I think both ferriscan and SQUID are excellent tools for diagnostic purposes. Ferriscan measures liver iron concentration and SQUID measures heart iron levels. Iron builds in the liver earlier than in the heart so high liver iron shows an eventual danger to the heart also. I think for younger patients, ferriscan will give a good picture of what to expect will eventually happen elsewhere. For older patients, SQUID may be of important use in determining the condition of the heart regarding iron, and whether there is need for intensive corrective chelation.

Sharmin, I think ferriscan would be very helpful at this point in determining how much iron is building in your son's organs.

Canadian Family, I am happy that the desferal dosage has finally been raised, even if it is only a small increase. I would suggest if there is not a definite improvement, that you push for a bit higher dose with each infusion.

Hi Andy,

I wanted to ask that Zainab is six years and three months old and she's been transfusing since last three years and three months. her ferritin last checked about six weeks ago was 2400,and it's highest she 's ever got,though i hope that when she goes for the transfusion this time her ferritin would be low, bcoz i have iterally fought with it since last six weeks,giving desferal three times a week and ferriprox three times a day,seven days a week,but still i wanted to ask that would you recommend ferri scan for her? though i am not sure if it's available here,i'll check it out,and what is the difference btw ferriscan and liver biopsy.

THANX

ZAINI.

It's recommended that all thal patients have regular examinations of liver iron concentrations. Where MRI or ferriscan is not available, the only alternative is liver biopsy. The difference is, a liver biopsy only gives you a small sampling of the liver, but an MRI or ferriscan will give a picture of the entire liver. Since iron is not deposited consistently throughout the liver, a complete scan will give a better indication of the extent of the deposits. A biopsy will show some things like fibrosis that an MRI will not show, so there are some good points to each. Of course, an MRI doesn't require any removal of tissue so it is easier for the patient.  You can contact the ferriscan company to find the location nearest to you, but Mumbai may be the closest.

Ferriscan locations can be found at http://www.resonancehealth.com/rh_findcentre--FindCentres

Thanx Andy,

I know that MRI is available here in karachi,i think i should go for it,will consult her doctor about it.

THANX AGAIN.

ZAINI.