Have a Great Trip, Sharmin!

Sharmin,

I was elated to hear that Dr Vichinsky commended you on using IP6. I wasn't sure the thal establishment even knew about it. We have been promoting its use for quite some time here and I have always stressed that its antioxidant properties are what may be its best feature. I am happy to see that the Dr concurred.

I really hope people pay serious attention to the advice about supplements. I feel that many people are overlooking this and thinking that they don't really make much difference. The stresses thals are under make supplementation absolutely necessary for good health.

Sharmin,

What did Dr Vichinsky recommend for supplement dosages? What did he have to say about vitamin C? Is it safe for thals to take?

Hi Andy,

We had been giving my son 100 IU of vitamin C which we gave him 1/2 hour after we began desferal.  In Oakland they asked us to increase it to 250Iu of vitamin C. 

From my understanding - thals need vitamin C - but they should not have large doses with meals because it increases iron absorption from the meal - as you have mentioned in the past.  Vitamin C also releases iron from the liver - this is the reason we administer it when desferal is on because it frees up iron for desferal to excrete.  However, in the absence of desferal - if vitamin C frees up iron it does not have anything to bind to - at this time it can enter other organs such as the heart and cause damage.   Small amounts of vitamin C between meals would not be as harmful - but it is best taken with chelation. 

The doctor stressed the importance of avoiding free iron - because it is very harmful - and along with chelation he stressed the need for antioxidants to bind it and avoid its oxidative damage. 

I am still waiting for a more complete list of supplements - as well as more information regarding vitamin C, calcium and magnesium.  Either they will email it to me or I will request it during my next visit in 3 weeks. 

I hope this was helpful,

Sharmin

Sharmin,

That's good info. 250 mg of vitamin C is some help. 100 mg is such a low dose and won't do much for thals who are generally deficient in C. I wish the dose could be even higher because it is water soluble and disappears from the system within 12 hours and most thals have a great deficiency in C, which is a powerful antioxidant.

I hope everyone pays close attention to he information Sharmin is giving us about supplements. This is crucial info that can help the health of thals in very real ways.

Andy,

I was also told during our visit that antioxidants are so vital in preventing iron damage in thal - that they are currently conducting a study involving the iron induced damage and the role of vitamins in its prevention - in thalassemia. 

Sharmin

Thanx for sharing the information sharmin.

ZAINI.

Since returning from the trip my son has started his new treatment.  In preparation for the rituximab he was given IVIG 1 week ago.  He was given two 12 hour infusions.  This experience proved to be a nightmare, after receiving the 2nd bag he developed a terrible fever, painful headache, stomach ache, nausea and vomiting.  He did not eat anything for 4 days and we were very concerned about him.  The doctor said that this type of reaction sometimes occurs with the IVIG - but is not common.  He said that although it was uncomfortable for our son - he was not in any danger.  Most people do not react this way to IVIG. 

Yesterday he received his first Rituximab treatment yesterday, and it went very well.  He will receive 3 more over the next few weeks and we are currently weaning him off of the steroids.  He has shed off most of the 'puffy' cheeks:)  We hope that this will take care of the antibody problem thereby reducing transfusion requirement.  With increased chelation and combined desferal/exjade therapy we hope that his iron levels will be reduced very quickly.  He will also be on maintenance IVIG treatment - small monthly infusions until his own antibody production returns to normal - hopefully without the autoantibodies this time. 

I hope that this helps others who have antibody issues.  We have heard that in most cases this method eliminates the problem and people return to normal.   

In two weeks we will be seeing Dr. Vichinsky again - before beginning our combination chelation therapy.  We will also be having an MRI of the heart to ensure that there is no iron his heart.  At this time we will also be inquiring about fetal hg inducers - which may be a possibility once the iron issues are dealt with.  We will share this information with all of you once we receive it.  There are inducers that can at least reduce tx requirement if not eliminate it. 

It has been a productive and at times very difficult few weeks - but we hope that what we are going through now will keep our son healthy in the future  - and we hope that the information we are able to share, as well as our experience, will help others.  

Sharmin

Best of luck Sharmin,

ZAINI.

Sharmin,

Best wishes for this treatment. Is your son completely off prednisone now?

   Best Of Luck For Your Son Sharmin 

Hope he will get well soon   and he will get helthy wealthy and happy Life .......

Thank you Zaini, Andy and Umair,

Your support means everything to us 

We have reduced the steroid to 10mg every second day, soon it will be 5mg alternate days and we hope to be off by the end of the month.   He was given a stress dose while he was at the hospital during the reaction - and so our wean became a little slower.  We are hoping for the best.  He has been his normal self for the past few days - a little grumpy at times because he has spent so much time at the hospital and because desferal is 7 days a week 12 hours a day.  Mostly good though:) 

Sharmin

Hope everything will go the way you want and that our little soldier remains well during the whole treatment. Best  of luck my dear friend

manal

Best of luck and

 

Thanks Manal  and Sajid 

Hi guys... we've got a slight problem 
His moodiness is driving us nuts 

We can't seem to do or say the right thing.. . He has always been such a well mannered kid, but the last few days
he has been a crab    He is not getting along with his sister    At first we were trying to be understanding because he has been through a lot - he has never really been sick before this year - but this past little while has put him through the ringer.  He is usually such a good natured boy, should we take it easy on him for a while or should we start putting our foot down now that he is doing better?   

Andy, could this be a side effect of some of the meds he has taken lately?

Thank you all for your help!

Sharmin