American in living in Shanghai

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American in living in Shanghai
« on: January 14, 2012, 06:24:46 PM »
Hi!  It is such a blessing to find this sight and all of this information!  My name is Victoria and I am American living in Shanghai China. I have two biological children 16 & 14 and we just adopted a sweet little Chinese girl. She ius now 2 years old and we have had her one year.
I took her to a doctor in America for a "well baby check" because she seemed to always have a cold and has not gained any weight at all in 6 months (or really grown).  She weighs 22 pounds and is 30inches.  The doctor did a blood test and she tested positive for Beta Thalassemia - her Hb was 9. He said most likely a carrier, but to see a specialist to be sure. So, thankfully my parents live a one hour drive to the Oakland Childrens Hospital and it has a great hematology dept.  So...more tests and her Hb 8.5.  They think intermedia.... more tests.  As of Thursday her Hb is 7.9 and they also found Alpha Globin Triplication.  They also had her take loads of iron for two weeks, but then said this was NOT the problem and have taken her off. Her Ferritin was OK? More tests and
now they say come back in March???  I feel completely lost and confused.  What does it mean to have Beta Thalassemia Intermedia with this Alpha Triplication? They said put her on a high calorie diet.... Is there anything else I should be doing other than just waiting for March?  I will go back to Shanghai on Jan 28 and then come back - is this OK for Kailin? She seems to catch everything - other than vitamins and such, is there anything else I should be doing?  What does this mean for her life? Monthly trips to the doctor? To do what?  Thanks...

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Offline Andy Battaglia

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Re: American in living in Shanghai
« Reply #1 on: January 14, 2012, 09:28:44 PM »
Hi Victoria,

The combination of alpha thal triplication and beta thal minor can cause a phenotype of thal intermedia. This is due to the imbalance of globins produced by this combination. The alpha triplication results in more alpha globin being produced, and if no beta thal gene is present, there is no affect on Hb, but when a beta thal mutation is present, less beta globin is produced, so there is an excess of alpha globin being produced and this has the negative effect you are observing in your child. This does not result in a transfusion dependent thalassemia, but does negatively impact the Hb level, causing a moderate anemia, as you are seeing. Unlike beta thal, this condition is not helped by attempts to raise fetal hemoglobin, so in your search for answers, raising HbF level is not a solution. Typically, folic acid is recommended daily for life. I also recommend a daily B complex, magnesium and natural vitamin E, as these will aid in producing red blood cells. The vitamin E is also a good antioxidant which can help combat some of the oxidative effects that occur when n imbalance of globins is present.

Dr Vichinsky at Oakland is one of the top, if not the top experts in the world regarding alpha thal, and his staff is well prepared but they are also extremely busy, so the March date does not surprise me, as waiting to see a specialist at the thalassemia centers of excellence almost always requires appointments months in advance. They should have more information for you about the expected phenotype with this combination and if it hasn't already been done, a DNA analysis for the4 beta gene may be ordered, as this can give important information about the long term expectations.

I would expect  that her Hb level will stay in the range of 8, which is a problematic anemia, but again does not require transfusions, so the worst can be ruled out. This will be treated much like HbH disease. Currently, there is very little treatment suggested other than folic acid and avoiding fava beans (and possibly other broad beans) and chemical fumes, including common things like mothballs, as these can cause a sudden hemolytic crisis which will cause the Hb to drop quickly. I recommend a wholesome diet and avoidance of junk foods. In addition, a low iron diet may be necessary, as the body tends to absorb more iron than needed when the Hb is chronically low, and over time this can present iron toxicity issues. Talk to Oakland about diet and whether there is any indication of iron loading. This can vary greatly among patients, so iron levels may need to be checked periodically. I would also ask them if she is currently healthy enough for long distance travel before your trip.
Andy

All we are saying is give thals a chance.

Re: American in living in Shanghai
« Reply #2 on: January 16, 2012, 03:01:22 PM »
Andy,

Now that I have finished crying tears of relief, joy and gratefulness to you I can send a huge THANK YOU!!! Thank you for your willingness to give of your time and knowledge to a very worried mom.  I hope you realize the impact you have in peoples lives.

My main relief is knowing most likely nothing bad will happen from here to March.  They are running the tests that you mentioned (and more) and did say the results could take 8 weeks. Also that they would call if there was an issue.  They are just LOVELY there and I am pinching myself that my parents live so close and Kailin is in "the system".

I will be meeting with a nutritionist this week regarding her "failure to thrive".  Will the supplements you mentioned help this? Will she start to grow?

I mentioned in another post last night that I have been involved in orphan care for 7 years in China.  Reading some about the "stigma" this carries in China (Asia overall??) I would really like to know your thoughts on helping to raise awareness and removing the stigma.  People need to understand that Thal people are PEOPLE who did not do anything to "deserve" this.  Hiding this with shame is just ridiculous!  But, this is common with all medical problems in China.  My husband and I helped start a cleft palette house in Shanghai (www.shanghaihealinghome.com) - babies being tossed for a cleft palette...or just for being a girl.  So very, very sad.... education, education, education!!!

I'm going to read your response again!!!  Will print and take to nutritionist as well..... THANK YOU THANK YOU THANK YOU again.... I have attached a photo of my family so you know who you are helping and you can see just how precious Kailin is!!!! (I'm a very proud mom!)

Re: American in living in Shanghai
« Reply #3 on: January 16, 2012, 03:37:59 PM »
Hi Andy
            I have been friends with Victoria and her family for the past 5 years and they're some of the nicest people you could meet. I had the privilege of meeting Kailin 2 weeks ago in San Francisco (my family and I are now back living in the States after a 3 year stint in Shanghai). She is absolutely gorgeous and in the best possible hands living with this family. They will do what ever it takes to help her. Finding this site is going to help them tremendously and all of us who want to help in any way we can. Thank you very much for all that you do!
Bev.Clark
« Last Edit: January 16, 2012, 03:44:02 PM by Bev. Clark »

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Offline gwftan

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Re: American in living in Shanghai
« Reply #4 on: January 16, 2012, 04:05:13 PM »
Hi Victoria,

I read your posts and I really want to comment about the stigma here.  I don't know whether stigma would refer to the whole Asian communities here.  The stigma we meant here is because culturally we're not so "open" so normally we don't disclose many things even among family members.  We don't go round and tell others we are thals.  We only disclose when we choose to and wanted to share.  Although being thalassemic is not to many people a disease such as HIV etc but to some people, they still shun away if they know their partner has this disease because Asian culture still respect a lot of parental decisions, such as marriage. Such issue that would affect and carry into generations to come.

We are lucky because nowadays, with the power of internet, we learn more.  Therefore we, new generation Asians are much educated and much more open, therefore you would hear some of us speak out.  

In fact I would like to clarify something.  Having to find out that we are thalassemic is not something we routinely do in Asia, or even in my own country.  We only knew there are problem, when we fail to find out why we are so anaemic, have medical issues, etc.  Therefore it cannot represent the whole Asian population, why we do not disclose our thal, whether we are a silent carrier, trait, intermedia or major because most of the people in the population do not know they are thals.  We do not know until there is a problem that seeks doctors to find out, through every means.

Even though after we found out, most of the doctors would still routinely thinks having hb 8-10 is still fine. Iron overload, still within range, is fine.  Everything is ok..... no problem, only make sure when we find a life partner, make sure genetic screening is done.  Although, to me I felt a lot of frustration, on every visit, on managing life with low hb and other health problems.

However, still, many of us missed the pre-marriage health check(if they care to do it) because people with Alpha thal(like me) is impossible to find out that we carry the gene through normal screening.  I believe there are a lot of alpha thals out there but we do not know we carry this gene.  Why?  This is because, if we have 1, 2 or 3 gene deletion, we still survive into adulthood, and grow old(not to say that we do not have health problem in our aging lives).  Only those who are with 4 gene deletion will die in utero, which might then prompt doctors to find out why.  I wouldn't know I'm alpha thal, if I don't insist I find it out why I am anaemic by keep on pursuing on this subject although it takes a lot of money and time.  

I wished there are more promotions to be done in it.  However, I think it would depend on the organisations and the countries to do it themselves.  If the countries themselves think that this is a minor problem, therefore, they would not do a massive promotion on it, because they would use up their budget in other things.  This website is a good place for resources but to run a massive promotion, needs a lot of money.  I personally thinks the the associations must be more pro-active, and secondly the best thing is to have the country themselves take the lead and initiatives.  After all, its their people they need to support and care.

Re: American in living in Shanghai
« Reply #5 on: January 16, 2012, 07:01:43 PM »
Thank you for your insights.  I have found that Hong Kong has a Thalassemia Foundation, though the website is in Cantonese... I will go there next month and see what they are doing.  Seems to be a big organization - happy awareness is happening!

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Offline Andy Battaglia

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Re: American in living in Shanghai
« Reply #6 on: January 16, 2012, 08:19:10 PM »
Hong Kong does have an active thal group that was instrumental in getting Exjade made available to patients. They also have a birth rate of thal majors of zero, so their efforts have paid off.
Andy

All we are saying is give thals a chance.

Re: American in living in Shanghai
« Reply #7 on: January 17, 2012, 02:27:17 AM »
Gosh, that's amazing! You don't happen to know of a specific doctor there??

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Offline Andy Battaglia

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Re: American in living in Shanghai
« Reply #8 on: January 17, 2012, 02:48:07 AM »
No, I don't have any specifics. The thal association should be able to provide that info. If not, let me know.
Andy

All we are saying is give thals a chance.

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Offline Zaini

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Re: American in living in Shanghai
« Reply #9 on: January 19, 2012, 04:53:41 PM »
Hi Victoria,

Just wanted to say your family is beautiful,and Kailin is lucky to have you  :hugfriend .

Zaini.
^*^Xaini^*^

 

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