Appointment in February

Dore,

I think you have to check the iron overload in organ through ferriscan (MRI on the liver) or T2*.

Also revising your supplements is a good idea too

manal

Sharmin, congratulations dear, you deserve the best. You and little A have worked so hard, Way to goooooo

manal

 

Hi Sis.
Congrats for you behind all this, there is a big effort/hand of you  Well Done...
Lill A To you buddy you got alot of strenght to make anything possible ... Well Done buddy and keep it up , i want to more super news from you like this , i hope n pray that other reports will come better fine than this one ... dont forget to enjoy your staty budy okiey .

Best Regards
Take Care
Umair

I have some answers to our questions.  We will be in again tomorrow for cardiac MRI and DEXA so I will try to get more answers then.

1. Fetal hemoglobin is less efficient than adult hemoglobin because it delivers less O2.   

2. Fetal hg inducers such as hydroxyurea are deamed to be quite safe with very little side effects. 

3. and 4.  L-carnitine - very good - Oakland is currently doing a study on L-carnitine and lipoec acid.  We are starting Little A on 600mg of L-carnitine.  L-carnitine protects heart tissue from iron damage.

5.  only take vitamin C with desferal - usage with exjade is not the same and not recommeded

6.  Treatment post spenectomy thals - baby aspirin, and cormadine is used to keep blood thin, antibiotics.

7.  To avoid exjade related intestinal issues - can divide exjade into two doses - morning and evening.  Can try taking it at night - on empty stomach.

8.  exjade/L1 together - not studied.

9.  magnesium bilirubin - sorry didn't get to this question

10.  PK def - will ask tomorrow
 
11.   DEXA scan - when done in a big pediatric setting is useful because they have the data for young children.  We are doing one tomorrow.  Boys more susceptible then girls to bone loss issues.  We declined today's appt - but after speaking with doctor decided to go through with it. 


We had a lot to deal with our tests etc. trying to devise future treatment and chelation schedule - but in the scheduled appt time I tried to get as far down the list as possible before time ran out.   I will try to get remaining questions tomorrow. 

Andy, we saw a different doctor from the team today - she also stressed that the future of thalassemia treatment is antioxidants.  She was impressed that I asked for L-carnitine and was very eager to help me guide me with it.  Thank you so much for guiding me in asking for help in Little A's treatment - it made a world of difference.  Thank you again. 

Sharmin

Sharmin you did a great job  SQUID results are indeed a good news,after a long journey of chelation,you and Little A deserved it  .

Thanks to Andy our kids are already on antioxidants,while doctors are researching on them.

What makes me feel sad is in countries like mine,how can we determine any deposition of iron in organs when SQUID or ferriscan is not available .

Zaini.

Thanks dear for everything. You are doing an excellent job. Thanks for helping us all

manal

I had to take a long walk to absorb everything that we learned today. 

One thing I want to stress is that everyone should have their vitamin D tested - and be sure to take a good vitamin D supplement.  Little A was extremely deficient last spring and the doctors here want him on mega doses to make up for the deficiency.

Secondly, we have to do rituximab again this coming summer.  It was a nightmare last year, but we need to repeat the course once again because Little A is still receiving too much blood.  This has been spinning around in my head since our appt.  Ultimately, we have to do what is best for him - so that his tx requirement and chelation can be reduced. 

Thank you all for your support.  Thank god that Andy lead us down this path before our child sustained any damage from the iron.  I am really glad that his iron levels are reduced at this time and that we have many options.  We are in a much better position than we were 6 months ago. 

I am realizing that the information which we are receiving here is lifesaving - as is the support 

Sharmin

Vitamin D is all the rage these days and for good reason. Our bodies are based on a system that assumed regular extended exposure to sunlight and most of us no longer get this. In addition, there may be a more hazardous situation now in terms of lengthy exposure to the sun due to destruction of the ozone layer which helps protects from the sun's damage. So, vitamin D supplementation often becomes necessary, especially for those living in climates with long periods of little sun. I feel great in the summer time when I can get sun but during the winter months I am a wreck if I don't take vitamin D daily. Its affect is noticeable almost immediately. Thalassemics have a great demand for vitamin D and just as with vitamin E, as more thals are being tested, an extremely high rate of severe deficiency is being found. This can be corrected and large doses are required, but it will work and it will greatly improve bone health along with just about every other aspect of health. The simplest thing our body needs and it has taken science until very recently to understand how very important the sunshine vitamin really is.

I am realizing that the information which we are receiving here is lifesaving - as is the support

I couldn't agree more.

Secondly, we have to do rituximab again this coming summer.  It was a nightmare last year, but we need to repeat the course once again because Little A is still receiving too much blood.

Does this mean antibodies are still active

Best of luck Sharmin,you are doing your best,rest is up to God.

My prayers are with you.

Zaini.

  with the iron thing &  for today!!!!

Adíos, Dore
p.s. dont worry I will start an own topic.

We are home and ready to implement everything that we were advised.  We were lucky to have taken all of the knowledge that we gained here because doctors volunteer more assistance when you ask more questions. 

Thank you all for your support while we were there - being away from home in a hospital setting and receiving tons of information can become heavy.  Thanks to the support of our friends here we got through it - and actually enjoyed our stay in San Francisco during the last few days  

Love Sharmin 

Welcome back Sharmin  I was just thinking about it the other day,that i know i can't go to Oakland myself,but i can get all information from this forum through you,Thanks for informing and acknowledging us  .

Zaini.

My pleasure Zaini,

All of you come to Oakland with us in my thoughts   I try to ask questions that will help all of our members - so that all of our little A's to Z's can be healthy  

Thanks again for your support Zaini 

Sharmin

Missed you a lot and welcome back my dear I am sure you need a deep sleep after the stress of the passing days. Take care and welcome back to ''Home sweet home''

manal

  Back To Home Sis , And wish you and Little-A with best of the luck in starting new treatments those has recently advised to lil-A in this apointment ...
  and Take CAre'z

Best Regards
Umair