My daughter was just diagnosed Thal minor

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My daughter was just diagnosed Thal minor
« on: June 14, 2009, 12:36:38 AM »
Hi my daughter was just diagnosed as Thal minor and I am trying to research all I can on how I can help her.

These are her test results:

Hemoglobin - 9.9
Hematocrit - 30.8
MCV - 62.9
MCH 20.2
RDW 16.8
Hemoglobin A195.1
Hemoglobin F <1.0
Hemoglobin A2(Quant) 4.9

I have read some of the other posts where I should have her on Multi Vitamins no Iron. She does get tired alot. Is there any thing I should include or take away from her diet?
She is 11 years old and she is adopted so I do not know anything of her family health history.

Thank you for all your help  :wink

Collene

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Offline Andy Battaglia

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Re: My daughter was just diagnosed Thal minor
« Reply #1 on: June 14, 2009, 01:57:54 AM »
Hi Collene,

First thing I would suggest is to read the post regarding thal minor at
http://www.thalassemiapatientsandfriends.com/index.php?topic=1575.msg13006#msg13006

For the basics, I recommend folic acid, B complex, vitamin D and vitamin E. A nutritious diet and moderate exercise are also important. Iron will not help with the anemia caused by thal minor and can cause problems if taken long term when not needed.

I would suggest you read more of the posts about thal minor and look for things that people have found do help. Some do get some improvement through the use of natural substances like wheatgrass, resveratrol and carao syrup. Thal minor is not a severe disorder like thal major but it does affect energy levels and can make one more susceptible to illnesses like colds and flu due to a lower functioning immune system, so it does become important to follow good habits like washing hands frequently and following a good diet along with supplements.

One very important thing for you to remember is that your daughter needs to be aware that she is a thalassemia carrier so that when she is older, her partner will know to also be tested to make sure that he is not a carrier, as two carriers have a 25% chance of having a thal major.
Andy

All we are saying is give thals a chance.

Re: My daughter was just diagnosed Thal minor
« Reply #2 on: June 14, 2009, 02:31:35 AM »
Thank you Andy.
I have been going thru almost all the posts on the subject. She goes to summer camp every year and it can get quite vigorous on the hiking. Approx 2 miles a day. The altitude is 5500. Last year she hiked to one of the peaks then came back and slept for the rest of the day. Now I know why.

Luckily she has not been too susceptible to colds and flus but when she does get them they are extreme.  She has endured so much already. At 5 she was diagnosed with Epilepsy. She is 11 now and has been medication and seizure free for a year.

Again thank you.

Re: My daughter was just diagnosed Thal minor
« Reply #3 on: June 14, 2009, 02:41:43 AM »
Sorry I have one more question.

The test results state:
Evaluation is consistent with beta thalassemia trait with anemia.
Irin deficiency must be ruled out.

Should I request an Iron test?

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Offline Andy Battaglia

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Re: My daughter was just diagnosed Thal minor
« Reply #4 on: June 14, 2009, 02:49:52 AM »
I would ask for iron studies to be done to make sure her iron level is OK, but the high HBA2 along with low Hb do indicate that it is most likely thal minor. However, iron deficiency can coincide with thal minor just as anyone else can be iron deficient, so it makes sense to have the iron studies also done. If her iron level is in the normal or low range I would also suggest adding vitamin C to her supplements, as it does improve the immune system and also has important roles in the circulatory syste.
Andy

All we are saying is give thals a chance.

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Offline nice friend

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Re: My daughter was just diagnosed Thal minor
« Reply #5 on: June 14, 2009, 03:05:41 AM »
[bgcolor=#ff8900]Hi Collene :
 :welcome2 , i hope that both of you will find this community very helpful .. best fo luck , i hope to hear from you very soon ...i hope you will get a good response and answer of our concerns/questions,  its your own forum so dont hesitate to ask wat ever you wana know about ...
please keep posting and stay in-touch with us ...

Best Regards
TAke Care
Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

Folic acid for Thalassemia minor?
« Reply #6 on: June 17, 2009, 03:18:33 AM »
Hello everyone,
I'm new to this forum and to be find it very interesting. I read in one of the posts that Folic acid is recommended for Beta Thalassemia Minor.
My cousin said her doc told her to take 800 micrograms? daily and she said she felt better after a few weeks. I think her only complaint was that she was tired. She's in her 60s.

She then told my 84 year old aunt about it and now she wants to take it as well. I thought Folic acid was just used for Major and not Minor.

Can someone explain the benefits if any?

Thanks

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Offline Andy Battaglia

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Re: My daughter was just diagnosed Thal minor
« Reply #7 on: June 17, 2009, 03:22:57 AM »
Hi Capito,

Folic acid helps build red blood cells, as do B vitamins, so it can help to take both. Minors can improve their health and energy level with supplements. Consider vitamin D for the tiredness. As more people are now being tested for vitamin D levels, the amount of people deficient is surprising doctors. This is especially true, the older one gets.
Andy

All we are saying is give thals a chance.

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Offline nice friend

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Re: My daughter was just diagnosed Thal minor
« Reply #8 on: June 17, 2009, 03:32:02 AM »
Hi Capito,
 :welcome2 , i hope your exprience of surfing on this site, communicating  with other members of the site, sharing your problemes and sugestions will be great  .... soo Start posting , start asking, then keep posting and stay in-touch with us .... Best of Luck  :goodluck

Best Regards
Umair
« Last Edit: June 17, 2009, 04:14:33 AM by nice friend »
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

Re: My daughter was just diagnosed Thal minor
« Reply #9 on: June 17, 2009, 05:53:55 PM »
I am taking my daughter for an Iron blood test today. In the mean time she is taking multi vitamins minus Iron for children. Unfortunately there is NO complete vitamin for children with out iron. Would switching her to Centrum Sliver be better? Remember she just turned 11.

thanks for all your help!

Collene

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Offline Andy Battaglia

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Re: My daughter was just diagnosed Thal minor
« Reply #10 on: June 17, 2009, 11:52:53 PM »
Hi Collene,

Centrum Silver can be used and is recommended by Oakland Children's Hospital. It is also available as a chewable.  Yummi Bears also makes a chewable multi vitamin without iron. They are excellent quality vitamins.

http://www.centrum.com/product_detail.aspx?productid=CENTRUMSLVR&panel=chewables

http://heronutritionals.com/vitamins.jsp?productid=1
Andy

All we are saying is give thals a chance.

 

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