Some Reports Of Zainab!!

Hi All,

I hope you all are doing well, Zainab's hemo suggested some tests for her and i want to share the results with you people ,to know your views,her hemo is on vacation so we are waiting for her comments.

TEST                                      RESULT               NORMAL RANGES

Magnesium                                    2.2mg/dl                            1.9 - 2.5

S.Total Bilirubin                              1.5mg/dl                             0.0 - 1.0

SGPT(ALT)                                    52IU/L                               3 - 33

S.Calcium                                       8.8mg/dl                            8.6 - 10.5

S.Phosphorus                                 6.1mg/dl                            4.0 - 6.3

S.TSH                                           3.32ulU/ml                          0.6 - 6.3(4 mths to 15 years)

So a cousin of mine who is a general physician told me that all tests are normal,Though bilirubin and SGPT are bound to be a bit higher in thals (due to hemolysis according to her ),i think she is a bit low on calcium,i'll ask her hemo to start some proper calcium  supplement,and one more thing,we also did an ECHOCARDIOGRAM,to check iron depositing in heart,though i don't know how much effective it is in locating iron or if it's done just to check that heart is functioning properly,but since Ferriscan or SQUID isn't available here,this was our only choice,anyways here are the interpretations of ECHO.

STRUCTURAL INTERPRETATION

Normal LV size and function

Normal mitral and aortic valves

Normal sized RV

Normal pulmonic and tricuspid valves

No ASD and VSD seen.

COLOR FLOW

No flow abnormality seen.

P/W DOPPLER

Flow velocity across mitral valve(Diastolic)E=1.14m/s.
                                                        A=0.77m/s.

Estimated RV/MPA pressure 20 mm/Hg.

CONCLUSION

No significant cardiac structural or flow abnormality seen.

So i am not sure about the scientific terms ,but conclusion says everything is normal,anyways,what do you people say? Andy?any comments will be appreciated.

TAKE CARE,

ZAINI.

HI Zaini,

The echocardiogram results are very good. Zainab's heart is working fine right now. Chelation compliance will help keep it that way. You are correct that this will not show iron deposits, but it does show heart function and it is why the echo test is recommended annually for thals. Diminished heart function and blood flow will be early signs that chelation intervention is needed, so it is very important to have this test done yearly, if at all possible.

I agree that you need to watch her calcium levels, although she is currently within range. Calcium and magnesium work together to create proper heart function so it is always important to make sure that neither drops into the low range. A supplement will help but also make sure she is following a nutritious diet and eating her veggies. Dairy products are also a good source of calcium.

Hi Zaini,

These are pretty good results compared to the average Thal. in Pakistan. This shows that you are a good parent and keeping up with the recommended treatment. I've seen small children that have developed heart disease due to lack of compliance with the chelation therapy.

Don't worry about the ALT much as it tends to be a bit higher in Thals.

Keep up the good work and stay faithful to the iron chelation and timely transfusions.

Thanx Andy and Sajid,

Your kind words encouraged me a lot,i am happy that her heart is functioning normal ALHUMDULILLAH,though i am a bit worried about her liver iron,and i don't wanna go through liver biopsy,but hopefully we'll be planning a visit to Saudi Arabia next year,i think i'll get her ferriscan done there, i believe it's available there.

One thing more, zainab's hemo suggested an yearly eye check up also,we did it and according to the eye specialist her eyes are fine.

I am really happy and grateful to GOD.

Wish you all good health and happiness.

ZAINI.

Zaini,

You are a good parent and doing everything possible for Zainab. As far as the annual check up is concerned we think there is a comprehensive guide available at TIF website below. You can also order free publication from them.

http://www.thalassaemia.org.cy/

Your idea to get a ferriscan from Saudi Arabia, just check if it is available there and a non-residents can actually do a test there. I am not sure if a visitor can go there and do a test in Saudi Arabia, there are some medical boundaries there. I would go for liver biopsy first and there is no harm in doing ferriscan afterwards.

Regards

Thanx Canadian Family,

For your really kind words,it's always good hear the words of appreciation,it encourages you and urges you to do more and more.

Yes you are right about Saudi Arabia,any guys from Saudi Arabia can help me out here? Is it really impossible for a non-resident? no chance?

Anyways,is it possible that one can avoid liver biopsy if ferriscan is available?Is it also impossible in Canada for visitors to get ferriscan,we can also come to Canada if it is available there and if there are no visa problems.

TAKE CARE,

ZAINI.

Hi Zaini
In order to visit Saudi Arabia, either your father, brother or husband will have to have a permanent visa. Although in the first two cases acquiring visit visa`s is complicated but not impossible. Once you are here you will be eligible for treatment as long as you pay for it. I don`t know if ferriscan is available but Saad Speciallist Hospital in Dammam is supposed to be the best in the Kingdom. However they scared the living daylights out of me when they suggested bone marrow aspiration for Hassan. I thank my lucky stars that their hemo paed was on vaccation and they couldn`t register Hassan.  All he needed was a CBC to be repeated. The bigger the hospital the more complicated the treatment. I hope you got my point.
bye
maha

Thanx Maha,

This information is valueable,we were thinking of visting K.S.A for umrah, so i though we will get the visa for riyadh or dammam,but now i think it's not possible if they don't allow visitors to have medical facilities .

Thanx again,

ZAINI.

Yes Zaini
If you are planning on a umrah your parameters are limited to Jeddah. You cannot travel beyond Jeddah.
regards
Maha

Travelling in K.S.A wasn't easy in my days too. We couldn't leave the city without the letter of the sponsor. We were advised to go for a better treatment center but couldn't because of this reason. 

Zaini,

Can you do a ferriscan in Canada, the answer is yes you can. Visa may be a problem but can be resolved. However, remember that the cost of seeing a doctor, getting a ferriscan done and follow up visit could cost more than your return air ticket. You can contact Hospital for Sick Children, Toronto for further details.

www.sickkids.ca

I say if you really want to do a ferriscan than a site closer to you can be a much better option; like somewhere in the Far East.

Regards.

Cost is a big problem ofcourse,I think ferriscan is available in India,and India is nearest to us,let's see what can i do,how further i can push my hubby to spend,Let's pray,and thanx for all your replies.

LOVE ALWAYS,

ZAINI.

hi!
     Great to hear that zainiab is doing good keep up the good work.... one question though for newbies like me  - what is ferriscan? has it been discussed before - can you give me a link....

Ferriscan is a method of determining liver iron concentrations through the use of an MRI. The Ferriscan software works with most current MRI machines and delivers a very accurate measurement of liver iron concentrations throughout the liver.

You can read about the process at http://www.resonancehealth.com/rh_resonance--FAQ

Locations where Ferriscan is available can be found at

http://www.resonancehealth.com/rh_findcentre--FindCentres

You can also request that your local hospital contact Resonance Health.

Your center can contact them using the information below.

http://www.resonancehealth.com/rh_ferriscan--MRICentreInfo

If you are interested in offering FerriScan at your centre simply complete an MRI Centre Expression of Interest Form.

Alternatively, if you would more information please contact us by email; info@ferriscan.com or call +61 (0) 8 9286 5300. Australian residents can call 1300 554 784.

oh - thanks Andy.....