Have a Great Trip, Sharmin!

Sharmin,

I hope you and your family have a wonderful trip. Have some fun and watch your kids have the time of their life. 

I hope Dr Vichinsky has some answers for you about the antibody. I think he'll be pleased to see what good health your son is in. I can't wait to hear what you learn. 

Have a safe flight Sharmin and take care

manal

Hi Sharmin
Have a nice trip and see you back soon.

Take care
Jade

 :loveHi sharmin :
have a great  trip ...
i hope it will b a safe and joy-full  trip....like 
 
                           
                                  bye....bye             

best regard
  Umair

Thanks everyone for your wishes - just logging in from California.  The kids have been having a blast. 
I'll keep you posted on our visit with the doctor.  I pray for good news for my son and for all of you my friends. 
I hope I can get some answers for us all.    Take care!  Love you all!!      Love Sharmin

Welcome Back!:)

I hope you had a great time and your appointment with the doctor goes smooth.

hi sharmin :
its nice to hear you again ...
when u and zaini anounced that both of u going on trip i thought that te board will b slow down and  bcoze two supreme members and also the two super caring mother thals r going offline for a few weeks .... but its nice to see that u r still in touch to the community thanx ......
thanx for spending time to reply on the forum thanx again .... have a nice tripp .   


umair

Hi everyone - I'm home!  Very tired - off to bed....
Please post questions - I will try to answer them from the information I received. 

Thank you all for being so sweet and supportive.  Our visit was very informative and gave us a lot to absorb. 

love to you all,
Sharmin

Welcome back dear Sharmin, we reallly missed you  and i hope that you had a wonderful time.

Did Dr. Vichinsky offered any different plan in treating the your son's antibodies?

manal

Welcome back home Sharmin.Waiting for all the informations you have gathered from your trip.

Hi friends.  Our trip was fun - and we received a whole lot of information to absorb. 

First of all,  the doctor commended us on the vitamins and supplements.  He stressed over and over that it is just as important to take antioxidants to prevent iron damage - as it is to prevent iron overload.  He was very happy about the IP6.  He did ask us to increase the doses of the other supplements that we are on - we will get a more complete list soon.  He asked us to increase the dosage of zinc as well.  He suggested that centrum silver as a good multivitamin. 

He also told us that with good compliance thalassemia patients can live long and productive lives.  I hope this will be the case for everyone here. 

For the antibody - he suggested that we go on rituximab and gamma globulin.  For those patients who have an auto antibody this is a great option - we hope that it is effective.  We hope to start on this treatment ASAP.   He also suggested that we immediately get the genotype testing done.  We are hoping to take care of it this week.  He says that it will prevent the formation of more antibodies and perhaps lessen activity of the autoantibody - also it may lengthen the time between transfusions.  Doing this in the first place may have prevented the formation of the antibodies in the first place - so I urge patients to have this done. 

On the whole my son is very healthy - and has no physical effects of thalassemia.  The increased transfusions over the past few years have caused iron overload however that we did not detect in the ferritin levels - his liver iron levels are 2880.  The doctor found this to be far too high and our first task is to reduce this immediately.  Our chelation must increase immediately.  This coupled with a reduction in transfusions - which will hopefully result from the ritux - should hopefully resolve this issue soon.  Again we will need your prayers.    I hope everyone has their liver iron concentrations checked - while in the past his ferr levels and liver iron levels have correlated very well  - now they do not. 

I hope this is helpful, I will post more soon.  Please feel free to post questions - i took a lot of notes and I will be happy to answer whatever questions that I can.  Until then - keep taking your vitamins!!

Sharmin

I'm so happy that he's doing nice.

Now what about the fun part?

Disney Land!!!

can't wait to hear about that

Sharmin , i know that you must be so tired by now but please if you a have time what is exactly meant by rituximab and gamma globulin??
Also what is the plan for the  concentrated chelation? Did he mention anything about exjade?
How often should you check the liver iron concentration?

From the Cairo conference and from your post it is very clear that ferritin levels are misleading so why we are so concerned about their levels???
 
manal

Hi Manal, 

We will be visiting with our hematologist at home to discuss the treatment plan. 

My understanding is that Rituximab is an anti CD20 - which prevents the formation of antibodies.   Yes, our new treatment plan will also include exjade - it will be a combination treatment which they plan to monitor very carefully.  Usually you can check liver iron once a year - but we will be checking every 6 months until things are under control. 

An important thing we noted during our appointment is that the doctor felt that we may have avoided damage due to the overload because of the IP6 and the other vitamin supplements.  I therefore encourage everyone to find out about vitamin supplements. 

Sajid, Disneyland was a blast - i will post pictures very soon:) 

Sharmin