Galbladder Surgery surgery for a 5 year old

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Galbladder Surgery surgery for a 5 year old
« on: April 16, 2011, 01:32:19 AM »
Hello everyone. I am new to this forum.  My daughter, adopted from China, is Thal Constant Spring her hemoglobin level is always at 7 and has never had a blood transfusion in the states.  She has had some in China.  She has a enlarged spleen also.  In March she woke up and was jaundice so bad we had to take her to the emergency room.  It went away in a day.  We have been taken weekly blood test and all her levels are coming back to normal.  Now they are leaning toward taking her galbladder out.  She has stones in there.  Our hematoligist explained to us that she will need a blood transfusion before she has the surgery.  They also want to take a liver biopsy while the take the gallbladder out.  If anyone out there has some info I would really would be grateful of your knowledge.  She is also 5 years old.

Thank you Cheryl Godin

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Offline Andy Battaglia

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Re: Galbladder Surgery surgery for a 5 year old
« Reply #1 on: April 16, 2011, 05:03:40 PM »
Hi Cheryl,

First, I want to make sure you are aware that there are various foods, medications and chemicals that can add to the hemolysis of alpha thal and that these should be avoided so that a hemolytic crisis doesn't take place, as this reduces the Hb and causes enlargement of the spleen and gallstones due to the breakdown of red blood cells (RBC's). Foods to avoid begin with fava beans, but some patients report problems with other beans and legumes, so observation is necessary when consuming anything from this group. You can see a list of some of the drugs and chemicals to avoid with alpha thal at
http://www.thalassemiapatientsandfriends.com/index.php/topic,3410.msg34830.html#msg34830
Avoid exposure to any chemicals that give off fumes like gasoline or moth balls.

Is the child taking daily folic acid? This is a must for all alpha thals. 1 mg minimum daily would be appropriate at this age.

I am always hesitant to agree with surgery unless a real danger is present. If there is a danger of gallbladder rupture, then removal could be necessitated. If there is no immediate danger, then it may not be urgent. An approach using folic acid, antioxidants and a diet high in antioxidants, along with avoiding the above mentioned items, might work to relieve some of the problem by slowing the hemolysis that will always take place with HbH. With Constant Spring, transfusions may occasionally be required.

What is the rationale for the liver biopsy? Is there something that can be learned that wouldn't be shown by a non-invasive MRI? Where is the child being treated and is the treatment under the supervision of one of the US centers of Excellence?
Andy

All we are saying is give thals a chance.

Re: Galbladder Surgery surgery for a 5 year old
« Reply #2 on: April 16, 2011, 06:35:18 PM »
We are not to sure at this point why the liver biopsy.  We will find out more on Tuesday when we see the gi specialist..  We are under the care of Childrens hospital in WI  I have tried to email a Dr. Thompson at Childrens in Chicago that is a specialist in blood disorders.  The one thing that is kind of hold us back that we cannot see doctors out of our state is because my husband lost his job in Jan and now our daughter is covered under our state insurance they we can only see doctors in our state.  I hope she at least can email me back.  Thanks for the info.  Our hematalogist a long time ago told us that folic acid was not needed but I will certainly put her on this.  Cheryl

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Offline Andy Battaglia

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Re: Galbladder Surgery surgery for a 5 year old
« Reply #3 on: April 16, 2011, 09:24:08 PM »
Dr Thompson is an excellent doctor with much experience with thal. I would pursue getting an opinion from her if at all possible. Dr Vichinsky in Oakland is probably the top doctor in the world when it comes to alpha thal, so contacting Oakland Childrens Hospital might also be a consideration. Talk to Eileen at CAF and see if there's any way you can get some advice from these doctors under your current situation.

Cooley's Anemia Foundation
330 Seventh Avenue, #900
New York, NY 10001
(800)522-7222
Fax: 212-279-5999

Patient Services Manager
Eileen Scott
eileen.s@cooleysanemia.org
Andy

All we are saying is give thals a chance.

Re: Galbladder Surgery surgery for a 5 year old
« Reply #4 on: April 17, 2011, 02:58:38 PM »
Thank you for all your information.  I have emailed Eileen. So I hope in the future I do hear from her.  Thank you again Cheryl Godin

Re: Galbladder Surgery surgery for a 5 year old
« Reply #5 on: October 11, 2011, 09:47:24 AM »
Hi Cheryl,
we have adopted a child from china too! He's 4 years old...from Guangzhou....
Leonardo Chun Ming, he's affected HBH disease and we are suspecting with Constant Spring too.
we are waiting the genetic screening to confirm it.
If you want, we can stay in contact to exchange ours experience...!
Let us know some news about you.....!
Where do you adopted from in China? What city ?
Our childrens's stories seems so similar!
Please reply with the private email too.....

Re: Galbladder Surgery surgery for a 5 year old
« Reply #6 on: January 17, 2012, 12:50:16 AM »
We are not to sure at this point why the liver biopsy.  We will find out more on Tuesday when we see the gi specialist..  We are under the care of Childrens hospital in WI  I have tried to email a Dr. Thompson at Childrens in Chicago that is a specialist in blood disorders.  The one thing that is kind of hold us back that we cannot see doctors out of our state is because my husband lost his job in Jan and now our daughter is covered under our state insurance they we can only see doctors in our state.  I hope she at least can email me back.  Thanks for the info.  Our hematalogist a long time ago told us that folic acid was not needed but I will certainly put her on this.  Cheryl
Is there a way to appeal so that consultation/treatment at a thal center would be allowed/covered?
Our hematologist wrote a letter to our insurance explaining there are only 7 thalassemia treatment centers in the U.S. and our son needed to be seen at one. We chose the closest one (Boston). Our insurance covered it 100%. There was no comparable care center within our state.
Just a suggestion...you never know!
Nicole
Nicoler

My son, adopted from China at age 3 in April 2010, has beta thalassemia major.

Re: Galbladder Surgery surgery for a 5 year old
« Reply #7 on: January 17, 2012, 02:37:33 AM »
Hi Cheryl!
I adopted from PoYang in JiangXi Province. My little girl is 26 months and we are just starting this journey - So far they think Beta Intermedia plus Alpha Globin Triplication, still waiting for results of more details.  What is Constant Spring?  Kailin was hb 9 in Oct, hb 8.5 in Dec and now hb 7.9 . I have no clue what this means yet.  I live in Shanghai but am currently with my parents in California andvlessed to be being seen at Oakland Childrens Hospital.

Is there an adoption group for this??  Victoria

Re: Galbladder Surgery surgery for a 5 year old
« Reply #8 on: January 22, 2012, 02:05:29 AM »
Hi Cheryl!
I adopted from PoYang in JiangXi Province. My little girl is 26 months and we are just starting this journey - So far they think Beta Intermedia plus Alpha Globin Triplication, still waiting for results of more details.  What is Constant Spring?  Kailin was hb 9 in Oct, hb 8.5 in Dec and now hb 7.9 . I have no clue what this means yet.  I live in Shanghai but am currently with my parents in California andvlessed to be being seen at Oakland Childrens Hospital.

Is there an adoption group for this??  Victoria
Yes, adoptingthalassemia Yahoo Group.
Nicole
Nicoler

My son, adopted from China at age 3 in April 2010, has beta thalassemia major.

Re: Galbladder Surgery surgery for a 5 year old
« Reply #9 on: March 11, 2012, 11:36:24 PM »
Hi Victoria,
I hope everything is well and you found out which one your child has.  Nicole I guess already answered your other question

 

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