Thalassemia Patients and Friends
Discussion Forums => Thalassemia Intermedia => Topic started by: NK on March 10, 2008, 04:41:10 PM
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My son (Date of Birth : Sep'06) was diagnosed with Thal major some 5 months back at Mumbai, India. His HBF was 95% and Hb 6.7. In a hurry we gave him one BT in Nov'07. After that we are regulary monitoring his Hb level and we find that he is able to maintain Hb level 7.0. His activities are normal but his diet is a bit less for his age.
I am Delta Beta Minor and my wife is Beta Minor.
1. Now, I am confused whether this is a case of Major or Intermedia? Pl. suggest something.
2. I read about Dr. AM Mathur giving RODEX. What is the cost of the treatment and does it really work.
Nk
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Hi NK
My son also was diagnosed around the same age as thal major. Infact his hb a month after transfusion was also 7 and probably could have held up for a little while longer had I not started RODEX. Dr Mathur did tell us hb would decline initially but it would start building up in 6-8 months. So far its been 8 months and hb is still on the decline.From what I have seen from his other patients only those who have been diagnosed very early in life and have never been given blood transfusion have benifited from his treatment.You can read my diff posts where I have written about his charges. Do give your son wheatgrass extract. Feel free to question
regards
maha
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The Hb level at this age does create hope that your child is intermedia. Delta/Beta thalassemia is sometimes also referred to as hereditary persistence of fetal hemoglobin (HPFH). What often occurs in this condition is that fetal hemoglobin levels are elevated, resulting in some amelioration of the thalassemia. Higher Hb than what is normal for thal major is seen. Your son may benefit from wheatgrass and also may be a candidate for hydroxurea treatment, as this is more effective when the patient already has some ability to produce fetal hemoglobin. Folic acid supplements are also essential.
I would recommend exploring these non-transfusion methods before deciding on regular transfusions.
In general you can see that often this does result in a moderated thal major, which manifests more like intermedia.
http://www.cariboo.bc.ca/schs/medtech/rice/thalassemia.html#variants
The gene controlling delta chain production is located very
close to the beta gene on chromosome 11. If one gene is deleted
then the other may be affected.
Homozygous Delta/Beta Thalassemia is similar to beta
thalassemia, but symptoms are milder. Most patients survive to
adult life with minimal transfusion requirements.
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Hi Maha and Andy,
Thanks for reply.
How and where to get wheatgrass extracts? Presently I am giving him VITCOFOL drops as a folic acid supplement. Kindly tell me something more abt Dr. Mathur. Have u seen anybody being benefited from his treatment.
NK
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Hi NK
You can grow your own wheatgrass at home. If not possible there are many companies that sell wheatgrass powder and tablets. Forever living is one such company that sells wheatgrass tablets in India. I use wheatgrass supershots for my son and you can order it online from www.drwheatgrass.com. The supershots are in the liquid form and tastes great.
I keep receiving messages and tel calls asking about Dr Mathur and his treatment so I am starting a new thread providing information about him and his treatment. Do check it out in the working towards a cure section.
Regards
Maha
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Hi maha,
What is the name of the product of Forever Living (for Wheatgrass)?
Kindly also suggest some names for Folic Acid supplements.
Thanks
NK
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Hi NK
You can check it out at www.foreverliving.com. As for folic acid, you can get it over the counter as such. My doc suggested a dose of 1mg daily. Also he takes vit-B supplements along with vit-D.
Regards
Maha
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Hi NK
You can grow your own wheatgrass at home. If not possible there are many companies that sell wheatgrass powder and tablets. Forever living is one such company that sells wheatgrass tablets in India. I use wheatgrass supershots for my son and you can order it online from www.drwheatgrass.com. The supershots are in the liquid form and tastes great.
I keep receiving messages and tel calls asking about Dr Mathur and his treatment so I am starting a new thread providing information about him and his treatment. Do check it out in the working towards a cure section.
Regards
Maha
hi
i wilol order this product
but i want to ask about any feedback regarding it?
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Hi, Im in Viet Nam, my son is 14 months now, and he've just diagnosed to be beta-thalassemia. This is his test result:
HbF: 28.8%
Hb A: 77%
HbA2: 4.2%
his Hb ia about 12.1
I wondering if my son have major or intermediate thlasseimia? Waiting for your reply.
Thanks all
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Hi Aryaka,
Welcome on the forum,with hb of 12.1 your son can only be thal minor,Thal major kids are usually diagnosed with in first year of their life and they have very low hb,thal intermedia can take long to get diagnosed,but i doubt if any thal intermedia would have hb of 12.1,so he must be a thal minor.
Thal minor is most of the time asymptomatic and people spend their lives with out even discovering that they have it,but it's a good thing that your son is diagnosed because you would be able to give him more nutritious food and avoid iron supplements unless iron studies are done and he is found iron deficient.The most important thing about thal minors is that when they grow up and have a family they should make sure that their partner is thal free,because if both partners are thal minor,there is a 25% chance in every pregnancy that the baby can have thal major.
Is he your first baby? since he has thal minor,you or your hubby must be a thal minor,so i'll advise to go and take a test called hb electrophoresis to determine if you or your hubby or even both of you are thal minors,if you both have thal minor ,you'll have to be careful if you plan for another pregnancy.
Hope this helps.
Zaini.
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Hi Aryaka ,
:welcome to the Thalpal , its nice to have you here . .. hope you will find this forum very helping & caring and you will find all the answers of your concers .... hope you are getting answers of your concerns :wink ..... Keep posting and stay in-touch with us ... :grin
Best REgards
Take Care
Umair
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I'm so happy to joint to forum! Thanks for your replies.
Me and my husband went for hb electrophoresis test, my husband is beta-thal Minor and mine is non thal. Our Dr jsut advise to folow his development carefully, take him to the test if having any sign such as tired, yelowed skin, weight gain slowly..not advising for anual test.
My son have a virus fever at 13 months, Dr saw unsual in his blood formula and requrie for Hb electrophoresis test, sice there he is in 39 Calsius fever. I wonder if the fever have any impact into the result, should we take him to another test to ensure Hb with an acurrate result? Is his Hb slow down when he growng up?
Now he is 14 months and has no clinical sign, 11,5kg, 80cm, walking good, and trying to talk. :biggrin
Nice Chistmas to all :cheer
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Hi Aryaka and welcome to the site :biggrin
Fever causes hemolysis which is the break down of red blood cells and therefore lowering HB but later on the body recovers back. In fever all the body chemistry changes and so your tests must be done when there is no fever
Hope this helps
manal
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Since you have been tested and are not a carrier, your child would technically be a thal minor. However, the very high HbF (fetal hemoglobin) level, indicates the possibility of the beta thal minor being beta zero, which is a complete deletion of that beta globin gene. If this is the case, the hemoglobin level may eventually get lower. I would suggest folic acid and B-complex vitamin supplements to help build red blood cells, and following a healthy diet. Many thal minors experience some problems like tiredness later in life so establishing good health habits as a child can help later in life.
It is also important that your son understands that he is a thal carrier so that later in life he knows to have his future partner tested for thal before having children.
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Thanks for replies. This is full test result:
Our son:
Hematologie:
WBC: 8.31 G/l {5.0-13.0}
RBC: 5.65 T/l {4.0 - 5.5}
Hbb: 12.8 g/dL {11.5-14.5}
HCT: 38.4% {37-45}
MCV: 68 fL {78-92}
MCHC: 33.3 g/dL {30.0-36.0}
MCH: 22.7 pg {28-32}
Protein C-reactive: 1.7 mg/l
Ferritine: 72.4 ng/ml {7.0-282.0}
Hb electrophoresis:
HbH: 0
Hb Bart: 0
HbA: 77.0%
HbF: 18.8%
HbE: 0
HbA2: 4.2%
HbS: 0
HbD:0
My husband's result:
Ferritine: 443 ng/mL {30-400}
Hgb: 14.3
MCV: 72.7
MCH: 25.7
Hb electrophoresis:
HbF: 6.1%
HbA2: 5.2%
HbA: 88.7%
My result:
Hgb: 12.1
MCV: 75.2
MCH: 25.5
Ferritine: 20
HbF: 0.4
HbA2: 2.8
HbA: 96.8
My question are:
- Is that means my husband is Thal-minor?
- Is our son Thal Minor or Inter?
- Do I have another test to realize that I'm Thal carrier or not? In case we want to have another baby
- Does Hgb anf HbF change when he growing? And how's it going?
Best regard!
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What's RODEX?
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I'm sorry that my son's HgF is 18.8%, not 28.8%
Is it too high for Thal Minor?
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Hi Dore,
As far as i remember Rodex is a homeopathic medicine,it was introduced by an indian dostor,i am forgetting his name,i think he claimed it can maintain hb or something like that,i thin k one of our members Maha's son was on rodex.And it wasn't very successful.
Zaini.
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Hello Aryaka,
Did you notice your husband's ferritin levels? From your post...
Ferritine: 443 ng/mL {30-400}
Not sure if you know, but drinking tea with meal with reduce the iron absorption for him and you might want him to check his Iron intake.