Beta Thalassemia Trait or Intermedia

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Offline Mahbub

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Beta Thalassemia Trait or Intermedia
« on: November 05, 2013, 12:58:53 PM »
Dear Andy,
Thanks for approval my membership.

I have added herewith the prescription and reports of my 2 years old (exactly her birth date is 06.11.2011).
I need to know if she suffering from Thalassemia Trait or Intermedia. Her doctor told her intermedia but he wrote on left corner of the prescription E Beta That Trait. How much she is sever? I have also emailed you today. Are we in right way of treatment? Regards, Mahbub.
Mahbub

Want rule thals

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Offline Andy Battaglia

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Re: Beta Thalassemia Trait or Intermedia
« Reply #1 on: November 06, 2013, 01:10:57 AM »
HI Mahbub,

The reports indicate that the child has HbE beta thalassemia, which means she has a beta thal gene and an HbE gene. The almost complete lack of HbA shows that this is HbE beta zero. This is shown by the electrophoresis, with HbE at 30% and the HbF at over 60%. Right now her Hb level is high enough where transfusions are not necessary. The long term is not easily predictable, as the production of HbF can be affected by the presence of other modifying genes, like alpha thalassemia deletions and the Xmn I(+) polymorphism. DNA testing can tell you if any of these modifier genes may be present.

Currently her Hb is in the range of thal minor. This may progress to an intermedia or possibly even major status as time goes by, depending largely on the presence of any modifiers that may result in a higher level of HbF. It is possible that transfusions will eventually become necessary. If the DNA testing can be done to look for other genetic modifiers, you will get a better picture of what to expect. Right now, she's doing good, but you've seen that her immune system may not be as strong as it should be. Special attention should be made to nutrition and eating habits, and precautions should be taken to minimize spread of infections to the child. She should learn to wash hands often, especially when touching things others have touched.

Time will tell. Some patients do fine but eventually need to transfuse as adults, while some have to begin transfusing as children. Enjoy her birthday and think about having the DNA tests done to check for modifying genes.
Andy

All we are saying is give thals a chance.

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Offline Mahbub

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Re: Beta Thalassemia Trait or Intermedia
« Reply #2 on: November 06, 2013, 05:19:58 AM »
Dear Andy,

Thanks for your quick reply. Actually I was waiting for the reply.
I think in our country DNA tests are not so much available (I am not sure). I have no financial ability to take her in Singapore or Thailand or US or UK. At best I can afford to go to this subcontinent. Could u give some references in this subcontinent where I can proper treatment for her within my ability.

I will be in your touch and ask question when arise in my mind.

Take care.

Mahbub
Want rule thal
Mahbub

Want rule thals

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Offline Andy Battaglia

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Re: Beta Thalassemia Trait or Intermedia
« Reply #3 on: November 06, 2013, 03:22:04 PM »
The DNA testing could help predict the outcome, but won't change anything. If they can't be done, it's not a big problem. For now, all you can do is monitor the Hb level and make sure that her diet is good. Make sure she is getting fresh fruit and vegetables and avoids junk foods. Diet is very important for thals. I would also suggest that you begin preparing mentally and emotionally for the possibility that she may require transfusions at a later date. I would also suggest talking to your doctor about the possibility of using hydroxyurea, should her Hb level start to slip. It often works well to raise Hb in HbE beta patients.
Andy

All we are saying is give thals a chance.

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Offline ekilucky

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Re: Beta Thalassemia Trait or Intermedia
« Reply #4 on: April 18, 2014, 07:27:39 AM »
Hi Mahbub,
I am just passing on a suggestion which my doctor advised for my daughter.

When a kid is suspected to be intermediate.. we have to monitor few things with the help of local pediatrics. This will help us to evaluate whether its leading to major or maintained at intermediate stage.
1) the spleen and liver size . (should not exceed the normal size)
2) proportional height and weight growth (refer to the immunity chart)
3) kid should be physically active (this tells its normal)
4) the front portion of the head should not bulge out (this tells its normal)
5) the incisor teeth(front teeth) should not grow prominently (this tells its normal)

I am not a doctor , hence cannot tell the exact medical terms.
Also the HB level will remain at 6, nothing to panic if its maintained at 6.

Thanks,
Eki
Willing to help.
Thanks,
Eki

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Offline Mahbub

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Re: Beta Thalassemia Trait or Intermedia
« Reply #5 on: August 04, 2014, 07:19:43 PM »
Dear Andy,
Thanks for approval my membership.

I have added herewith the prescription and reports of my 2 years old (exactly her birth date is 06.11.2011).
I need to know if she suffering from Thalassemia Trait or Intermedia. Her doctor told her intermedia but he wrote on left corner of the prescription E Beta That Trait. How much she is sever? I have also emailed you today. Are we in right way of treatment? Regards, Mahbub.

Hi Andy!
My daughter is now 2Y 9M. I have schedule to have a short family tour in Thailand from Dhaka. Could you pls suggest me to consult with any specialist for her. I have taken an appointment with DR. THIP SRIPHAISAL (Pediatric Hematologist) at Samitivej Hospitals at Sukhumvit, Bangkok.
Mahbub

Want rule thals

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Offline Lokkhi maa

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Re: Beta Thalassemia Trait or Intermedia
« Reply #6 on: March 05, 2015, 03:11:35 AM »

Dear Eki,

Thanks for sharing....

Mridula
Lokkhi Maa

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Offline Lokkhi maa

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Re: Beta Thalassemia Trait or Intermedia
« Reply #7 on: March 05, 2015, 03:18:17 AM »

Hello Mahbub,

I am Mridula from CTG.My baby is 17 months old and she have also E beta thallassemia.Could you pls advice me about the best doctor of Hematology in Dhaka.

Thanks
Mridula
Lokkhi Maa

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Offline Andy Battaglia

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Re: Beta Thalassemia Trait or Intermedia
« Reply #8 on: March 05, 2015, 05:31:06 AM »
You should see Dr Robin at
http://www.thals.org/content/contact-us-0
Bangladesh Thalassemia Foundation

Thalassemia Foundation Hospital | Thalassemia Blood Bank

30 Chamelibagh, Shantinagar
Dhaka 1219

Phone: +880 2 8332481
Email: info@thals.org
Andy

All we are saying is give thals a chance.

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Offline Lokkhi maa

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Re: Beta Thalassemia Trait or Intermedia
« Reply #9 on: March 05, 2015, 07:51:59 AM »

Thanks Andy.
Lokkhi Maa

 

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