Singapore Scientific Programme Schedule

Hey Mariam , please calm down. i don't want you to rush to conclusions. First thing, what is the unit used in measuring the bilirubin. because there are two kind of units and the number  could differe a lot

Second, please calm down i can see that what you have to work for is the iron over load, once it is down everything will be okay.

Third, liver biopsy is something that is not discuussed over the phone with doctors. Though the procedure is not that dangerous but at times it can be especially with unskilled doctors which is the case with the ones you are dealing with

Fourth, you didn't tell me if aysam is suffering from anyother thing other than thal and if there is any other genetic disorder running in the family

Fifth, i remember that Dr. Beshlawy told you  in the conference that aysam suitable dosage from exjade should be in the 400 level according to his weight and she also advised you to use desferal via IV to reduce iron overload quickly

As for the terms i know nothing about them right now but i will search and let you know.

By the way Andy must be sleeping now cause it is so early because of time difference so we should wait a little bit.

Again i want you to calm down because as i told you ironoverload is the problem now and discussing types of chelators should be postponed now. The important thing right now is to give the correct dosage so that it could be effective

manal

MANAL
NO I DONT KNOW OF ANY OTHER DISORDER HE HAS
but i can tell you that i know is that he has other problems like minor things sever osa obsractive sleep dis and to many infections and he was bleeding in his rectrum last month ? they said not to worry his blood showed bleeding in the results they did and also something really odd manal hsi white cells are always high never have they been normal from the day he was born his white cells always

manal i posted everything on the site all his results ther are many others wich i also dont understand and all high some low like thyroid stim hormone   4.18*  and many more come like are positive i am trying to send puja a fax but its not going tru so she said she can email dr mawal

MANAL
HAVE YOU GOT DR BASHWAL EMAIL PHONE NUMBER ANYTHING IS IT POSSIBLE YOU CAN TALK DIRECTLY TO HER PLZ  OR I ASK HER WHATEVER

Yes i have but unfortunatly she is in Thailand now for a conference but i will send you her email

manal

PUJA YOU STILL HERE

 
                           

                                 

                                        :chill    MMM SEEMS EVERYONEIS NOT HERE

Aysam ,
check this link i hope it will help you understand the relation between iron overload and live some other effects .... its based on my personal experience and my reports ....
http://www.thalassemiapatientsandfriends.com/index.php?topic=1825.0;highlight=judge

take care
umair

       P U J A                                     M A N A L                                    A N D Y    


  :chill    
                     SOMEBODY I NEED YOU I AM SO DEPRESSED AND SO WORRIED

                    UMIR 

Aysam,

It is okay my dear, your son is young and between all of us we have a lot of knowledge - he will be okay.  There are so many warning labels that come with thalassemia and it can be scary - let us help you get out of the woods.  You have taken some big steps in taking control of your son's health by joining this group, by attending the conference and equipping yourself with knowledge. 

Make sure that your child is getting his supplements - especially the antioxidants if his ferritin is high.  In Oakland we were told that although our son's iron levels had spiked, due to an increased tranfusion requirement from 2006-2008 - that he escaped any damage because of the antioxidants I was giving him.  During my visit I took all of the supplements that I was giving him with me, the doctor passed them around to his collegue and understudies and said that all thal patients should be on these.  He commented that it finally makes sense to him how my son managed to maintain good health despite thalassemia and antibodies. 

My doctor, who is a wonderful man, does a great job transfusing my child and keeping him healthy, but he was not aware of the need for supplements either.  He has been very open to learning about them however, and recognizes that the large thalassemia centers give much weight to them.  Because I did not learn about supplements from our doctor, I was giving him some on my own, but it was the vitamins recommended to me on this site that the doctors in Oakland commended. 

Have faith my friend, have faith in yourself and your son and keep learning.

Love,

Sharmin

Mariam,

I have just been reviewing some of you information.  I see that Aysam is positive for anti ttg antibody, you have also mentioned bleeding from his rectum.  Is there any history of celiac disease in the family?  (Please be calm, I don't wish to introduce something more to worry about) - understanding all of these things will help us get a better picture of the results overall. 

Is Asyam's glucose the result of a fasting glucose test?  A random glucose test can vary.  Is the level 5.1mmol/l ? 

Our doctor has told us that it is common to see some elevation of bilirubin for most thal patients (even transfused patients).  Mariam can you tell me the frequency and volume of your son's transfusions?  Bilirubin can also result from hemolysis.  Also, there obvious iron overload in the liver, and the liver is the first place where iron will build up.  The liver function tests do show that the liver is currently stressed (from my understanding of the tests) - but with proper chelation this CAN BE REVERSED.  In order to do this Mariam, Aysam needs you to be strong and coherent.  You need to relax and take care of yourself if you are going to help your child - he needs you! 

Remember that the levels indicated on his results are normal for non thal people - there is a different normal for thals.  Also, you need to pay attention to how far off of the normal scale results actually are - I am trying to review your tests and attempting to interpret them as well as I can.  You mention that the TSH is off - how are the T4 and T3 values?

Very obviously better chelation will help with this problem.  Aysam needs to be on 30mg/kg of his body weight of exjade - (does that work out to be 400mg for him?)  Also, he should be on a minimum of 5 days a week of desferal 12 hours a day.  If you can place the pump in a back pack or a fanny pack it will allow him to play while he is wearing it. 

In the meantime I am working on reviewing your results, if you can answer my questions it will help me out.  Certainly, a qualified thalassemia doctor or clinic needs to review and relay these results to you. 

A liver biopsy is a test to relay liver iron concentration, possible scarring and damage in the liver.  Certainly I would opt for one in your situation, but I would only do it in a proper clinic.  My son had a routine liver biopsy for scanning purposes twice - one at 18months and once at 2 1/2 years.  Although we have great health care here, we travelled 5 hours to a major thalassemia clinic to have his biopsy done - simply because they are more experienced there with the procedure on young children and with testing of the tissue in terms of what is acceptable for a thal patient.  Do you have ferriscan or T2* available there? 

With proper chelation everything will improve.  Along with seeing your hematologist, because of the iron overload I strongly recommend that your son be seen by an endocrinologist and a cardiologist to watch him until his iron levels are under control.  You may want for him to have 24 hour IV desferal a few times a week during the next month.  I know that your doctor is an obstacle for this - but that is how your case would be handled here. 

Smurfette is also located in Sydney, Australia - and she has done amazingly well with her thalassemia and chelation - she has the lowest ferritin out of thal that I know - perhaps you can PM her for more information in your area.  Maybe she has a contact for you. 

I will get back to you again very soon,  I am still working and researching your son's case - please feel free to contact me at anytime. 

BTW your son is absolutely adorable!  hugs and kisses to him from me    He looks good

Sharmin

Please find below Blood Test Results Normal Range
http://www.bloodbook.com/ranges.html#50-160

Glucose   Tested after fasting: 70 - 110 mg/dL

Bilirubin   Direct: up to 0.4 mg/dL
                Total: up to 1.0 mg/dL

Proteins:
   Total   6.0 - 8.4 gm/dL
   Albumin   3.5 - 5.0 gm/dL
   Globulin   2.3 - 3.5 gm/dL
Prothrombin (PTT)   25 - 41 sec
Pyruvic Acid   0.3 - 0.9 mg/dL
Red Blood Cell Count (RBC)   4.2 - 6.9 million/µL/cu mm
Sodium   135 - 145 mEq/L
Thyroid-Stimulating Hormone (TSH)   0.5 - 6.0 µ units/mL
Transaminase:
   Alanine (ALT)   1 - 21 units/L
   Aspartate (AST)   7 - 27 units/L
Urea Nitrogen (BUN)   7 - 18 mg/dL
BUN/Creatinine Ratio   5 - 35
Uric Acid   Male      2.1 to 8.5 mg/dL (likely higher with age)
Female      2.0 to 7.0 mg/dL (likely higher with age)

Dear Mariam,  I don't feel qualified to advise you.  I think that you need to contact a major thalassemia center - even if by email and fax with your results.  I will keep working on this to the best of my ability.

Sharmin

Mariam,

Please find contact information that I have sent you in PM.  See if you can send your child's records and get more information.

Best,

Sharmin

SHARMIN
I will contact all the relevent places today but tell me please so his liver results are to high ?
and his kidneys ?
can he wait i meen they said he wil be fine you know what i meen ?
please sharmin i ma not stressed wjats makeing me stressed is not knwing the truth