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Author Topic: 8 years old Daughter just diagnosed with Beta thal/HBE intermedia  (Read 417 times)
Trangvn
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« on: May 24, 2018, 11:36:27 AM »

Hi to all, my first daughter was just diagnosed with Beta thal/HBE intermedia.
Borm June 2010
2013 (3 years old): this test is done when she is sick, infection.
HB in 2013: 104
MCV: 59.67
MCH: 16.79
MCHC: 281.4
PLT396.5
==> Noone told me what was her true problem at that time.

May 2018 (nearly 8 years old): This test is done when not sick
HB: 97
MCV54.1
MCH 16.7
MCHC 308
PLT 484
==> I suspect she has Thalassemia so I put her to check. And the result became positive Beta Thal/HBE
HBA1: 27.6
HBF: 19,8
HBE: 52,6

I was crying alone at night but then realize that I need to find something to help her rather than jst crying. And THANK GOD I FOUND THIS FORUM. This is the gift God send to me and to us. I read and read all your posts about Beta Thal/HBE and have started given my daughter as follow:
- 5mg acid folic x 2 times daily after breakfast and lunch.
- 3mg zin C
- 400iu natural vitamin E
- Calcium liquid with Magiesium and D3
- 500iu D3 gummies
- Coconut fresh juice every day to boost immunity
- Green tea after meals (not much because tea does make her sleepless is drink close to naps)
- AND ABOVE ALL: 2 SMALL SPOONL OF WHEATGRASS on warm water before breakfast and after se return home from school.

WOW... I can not believe it.. The result was visible for the first some days. She seems like return to the normal person that she used to be in the past. Not anymore signs of tiredness, dizzy, she have better taste with meals, eat more and sing and do many other things that she would not do the other days.

Am I dreaming or is this true? Can anyone tell me is this true that she have reaction with the supplements I started giving her just recently this week? It is just like giving her a pump truly as it change so fast.

The most I worry is that Is this the permanent effective change or is this only for a short term vision change? If I continue with these above supplements will she keep on the energy she has right now?

Warmest love to all of our family members!
Trang
(vietnam)
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Andy
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« Reply #1 on: June 03, 2018, 05:39:18 PM »

Trang,

She is an HbE beta+ thal, which means it is not as severe, but does become more severe when she is sick, as you have experienced. It also means that normally her Hb will be high enough that the supplements can make a big difference in her health. Many of those supplements will show some effects very quickly, and this demonstrates the nutritional deficiencies caused by thalassemia and why they should be corrected. I hope she continues to improve. Diet is very important and coconut juice is a very good addition. Encourage all healthy foods. This is very important. Thals can't afford to waste their appetite on foods with little nutrition, so establishing good eating habits is very important. Good nutrition also helps build the immune system.
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Andy

All we are saying is give thals a chance.
Trangvn
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« Reply #2 on: July 09, 2018, 10:04:58 AM »

Hi Andy thank you very much for your reply.

I got her gene analysis result:
- CD26 (GAG-AAG): HbE
- -28 (A>G).
Could you help me to understand more about this mutation? Is this any indicator of her status in the future?
For now, she is showing good signal after taking wheatgrass, Folate, Zin C, Vit E, Q10, Calcium D3 K2, D3 (Total D3 is 1000iu per day), Reservatrol, B12, multi vitamin focus on group B vit and No iron or C. Although I have not checked her Hb since the last time when it was 97 (2 months ago when thal was first detected and had not used any sup), but I can feel her lips is more red, and she seems to have more energy. Since the last 2 months after all these supplementary she had gained 2 kg and 2cm height, which is a great things to us.
 
However, she continue claiming about pain, which make me embarrass a-lot because I do not know why it happen and how to help her? Pain in her joint (the back of her knee and the arm joint)- these are the most frequent; pain in her stomach in the area straight upper her navel or around the navel (she had HP virus but was treated last year so I doubt that could be HP symptom comes back?). She also claim pain in the joints of the foot, joints of the hands, and sometimes pain on the shoulder blade, one or two times feel pain in her back bone. All these pain are not too much, it comes and goes but still makes her complain for a while. Do you think it could be signs of osteoporosis?  
Some days if eating not properly (due to travelling) and too much activities on the day, she would claim about pain everywhere in her body. This happen a couples of times lately so I usually back up by a healthy eating, rest and exercise on the following days and these symptoms vanished.

Thank you so much for your help. I cannot find any other places that provide these thorough information about thal like this forum.
  
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Andy
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« Reply #3 on: July 14, 2018, 03:25:33 PM »

 -28 (A>G) is a beta+ mutation, so the outcome combined with HbE should be less severe than when combined with a beta zero deletion.

I am only going to suggest one thing at this time and that is that you add a magnesium supplement to her program. It is best to take right before sleeping at night. A magnesium complex containing more than one form of magnesium is best. This may help with some of the joint pains, etc. Also, make sure she gets enough water, as this is quite often overlooked. After a month of magnesium (about 250 mg is appropriate at this age), let us know if there is any change in the complaints about pain. I also suggest turmeric capsules for pain. I take them a couple times daily.
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Andy

All we are saying is give thals a chance.
Trangvn
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« Reply #4 on: Yesterday at 05:54:04 PM »

Thank you Andy. You are the best 
I will start magnesium for her from this week. But need to find a vitamin brand that provide Magnesium for kids. I still cannot find it.
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Trangvn
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« Reply #5 on: Yesterday at 06:02:15 PM »

One great thing ever we had last week is her hb raised amazingly. Last week we bought the Masimo  non inovasive hemoglobin analyser for pediatric care and started to monitor her HB. The result came as below:
- 2013: hb 103 (when fever, taking antibiotic injection) she was age 3 this time.
- May 2018 (first time diagnosed Thal): hb 9.8 close to her 8th bỉthday. No fever, no antibiotic.
- July 17: hb 12.8  
- July 18: hb 13.0
- July 19: hb 12
- July 20: hb 10.9 evening
- July 21: hb 12.0 morning
- July 22: hb 14.7
It is fluctuate though. But all the list of vitamin Nd wheatgrass do make a miracle for us  
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