Introducing myself

Hi, My name is Lori.  I live in Michigan with my husband and the six of our eight kids that still live at home.  Four of our children are adopted from China.  Our youngest, Wei (Way) has Beta Thal Major.  I stumbled across this group while researching for nutritional ways to help her.  Right now she gets transfusion every three weeks.  I've been asking for three months for help from the specialist and all I get is "Folic Acid".  I have to believe there is more to her health than that! 

We had her on hydrea (?sp) for a while, but I wasn't comfortable having my three year old on a chemo drug for the rest of her life.  We also tried Xango and had some success.  However, I have to confess that after using it for a while and not seeing any results we stopped it.  That must have been when it kicked in and she was able to go from three weeks to five weeks between transfusions.  We are in the process of getting her back on it regularly.

Thanks for having me.
Lori

Hi Lori and welcome,

Please refer to our board called Diet, Nutrition and Supplements. We may be ahead of most doctors with our nutritional advice but the value of our advice is well confirmed by some of the top thalassemia specialists in the world. I do think that Xango (mangosteen) does have some benefit. Natural methods do help but they do require a long term commitment and the results are often subtle and unseen, as many supplements provide benefits at the cellular level, especially antioxidants. I would also highly recommend that you visit one of the Comprehensive care centers annually. The difference will amaze you. The closest center to Michigan would be in Chicago. It is essential that thalassemics have at the very least, an annual evaluation at one of these centers.

Alexis Thompson, MD
http://www.childrensmemorial.org/findadoc/doctor.asp?dID=1009
Sees patients at
    Children's Memorial Hospital
    2300 Children's Plaza (Lincoln and Fullerton)
    Chicago, IL 60614
    1.800.KIDS.DOC

Director: Alexis Thompson, MD
Contact: Janice Beatty, (773) 880-4618

Hi Lori,

   I hope you'll find what you are looking for.

When talking about supplementation in thalassemia,the role of antioxidants is vital,and studies have shown that thals need supplementation of vitamins and minerals too,in which calcium,magnesium,zinc and Vitamin d are very important,a good dose of calsium and vitamin D along with Magnesium can help bones against Osteoporosis.Magnesium also strengthen the walls of red blood cells.

Talking about antioxidants,you might want to look for IP6,It prevents damage to organs and cells from free radicals in the body.

I'll advise you to go through this thread,it will help you a lot.

http://www.thalassemiapatientsandfriends.com/index.php?topic=118.0

Hope this will help,keep visiting and posting  .

Zaini.

Hi Lori

Welcome

You will have the best advices here.  You can go through all the previous posts to have information and you can also post your queries. How old is your daughter?
Take care
Jade

Hi LoriM ,
  , and best of luck in finding your concerning questions , that i know that you wil get in quick reply's form our members.... wish you all the best , keep writing and stay-in-touch with us , its very nice to have on forum ....

Best Regards
Take Care
Umair

Thanks.  Wei turned three in October.  She had a few transfusions in China but I can't be sure how many.  She has averaged every three weeks since coming home.  She did go to the Children's Memorial in Chicago soon after coming home.  They did her DNA test and gave me a brief overview of Thal.  They referred us to Dr Cornelius at DeVos in Grand Rapids.  We were supposed to go back for a liver scan to determine her iron level, but their machine wasn't working properly and scheduling got messed up.  They said they would call us.  Dr Cornelius, at first recommend a BMT, but with stem cells.  I wanted to hold off until I had a better understanding of everything that was going on.  He did try the Hydrea (sorry, I know that's the wrong spelling).  He told us there were no side effects.  The handout with the med said differently.  Wei did start losing her hair.  After several months we saw no improvement and I discontinued the treatment in favor of Xango.  Dr Cornelius seems content to give her blood transfusions and exjade without anything else.  I feel I have to fight for everything for her.  He doesn't seem to want to explain things to me, rather just tell me how he wants to do it.  I finally had a sit down with his nurse practioner and explained to her that I need to understand everything they are doing.  I told her that I am responsible to see that she is getting the best treatment possible and to do that they need to explain things to me.  I told her that if in 10 or 15 or 20 years we're doing something now that we shouldn't have, they can shrug their shoulders and say "we didn't know".  I do not have that option.  At the end of the day, at in 10 and 15 and 20 years, she will only be their patient but she will always be my daughter.  They weren't too happy with me, but they have to understand that I am ultimately responsible for her care.  I've been asking for three months for a more wholistic approach to her care and all they know is that she needs folic acid. 

Wei has a port, which has helped so much.  She did have her first liver biopsy and the doctor never gave me the reading except to say "it's not alarming".

Maybe I should call Janice again and see if we can get her in again.

Thanks again everyone, I am excited to learn from all of you.

Lori

I do have a question.  When we first saw the doctor he told us they like to keep the hgb levels above 9.  He said they would transfuse when she was in the 9s.  Now he's trying to stretch our transfusions out and has resisted transfusion her when she was in the 9.2 range.  She seems to drop about a point a week.  He would never go into any detail about why, but after doing my own research I'm guessing it's to keep her from getting too much iron.  But there are also consequences of having her numbers be too low.  How do you find a balance?  What do you feel is the lowest you want the hgb to get before transfusing?

Thanks
Lori
Mom to Wei (age 3)

Hi Lori,

It's good to keep pre transfusing hb above 9,that way bone marrow won't be much stressed and there will be no chance of bone expansion.As for iron over load if you are compliant with chelation,that won't be a problem,IP6 which i mentioned above is also a natural chelator along with being an antioxidant.It of course can not replace the chelators like exjade or desferal but it does help.

Try to read our previous posts as much as possible,that way you'll be able to learn a lot about thalassemia.Please feel free to ask if you have any more questions.

Zaini.

Hi Lori

It will be good if you give Wei supplements because thals deplete their reserves of vitamins, minerals ....
Have a look at the nutrition section.

As far as hydrea is concerned, it can indeed be beneficial to some thals ( i believe the intermedias).  You can relate to members who are on hydrea, they will help you in understanding.

Quote:
Wei did start losing her hair.

I don't know if this comes from the hydrea or if it is zinc deficiency.  Is losing hair one of the side effects of hydrea?

Take care
Jade

Welcome Lori! I hope you find this forum educational and hope to hear from you more..........keep us updated!

Jade,

Yes ,alopecia or hair loss is one of the possible side effects of hydrea.

Zaini.