Thalassemia Patients and Friends
Discussion Forums => Thalassemia Intermedia => Topic started by: ps1236 on May 30, 2007, 11:03:48 AM
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My daughter 14 months old has been recently diagnosed with Thal. Doctors are confused whether to consider it as thal mojor or thal intermedia. Her HbF is 93.8 %(indiactes thal major) but her Hb is 9.5.She does not show any signs of thal. She is very active,intellegent and energetic. Both parents(me and my wife are diagnosed as thal minor). We are shattered after hearing the news that our daughter is suffering from this disease. What should we interpret from this? Is it Thal Major or thal intermedia?Will she lead a normal healty life? will blood transfusions be required? Do we have any further tests to classify if it is mild,moderate or severe form of thalasemmia? I have also heard that if we can maintain her Hb to the same level chances of blood transfusion will be very less...Please suggest......
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Hello puneetsaluja,
You will have to keep her blood counts in constant check to see what's going on with her.
Hb of 9.5 is pretty low but some Intermedias are able to sustain their Hb even at 6-7 g/dl. Some doctors will try not to transfuse Intermedias lest they make them transfusion dependant while on the other hand some doctors think that such low Hb can interfere with the normal growth of the child and start transfusions. It is a matter of your doctor's opinion what they decide for your baby.
In the mean time you can ask them to try the HbF inducing agents such as Hydroxyurea which has fairly good effect on Intermedias.
Hope that your baby will do fine and won't require blood transfusions.
Take care, Peace!
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Your daughter is still quite young so it's hard to say for sure yet, but with an Hb over 9, she may be an intermedia and not major. I think it should be verified that both parents are beta minors. With your daughter's Hb level and fetal Hb %, it is worth checking to see if she might be HbE beta thal, which often is more like intermedia. Right now I would say things look very good because of her relatively high Hb for her age. Most majors have dropped to lower Hb levels by 14 months.
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Thank You Mr. Andy. Me and wife have already been diagnosed as Thal Minor. 2 days back i have got her Hb checked again and it is found to be 8.8. But this Hb check was done from a different laboratory. I have 3 questions now
1) Can the results vary from Lab to lab?
2) Last time the lab people took 1 ml blood on 11-May-2007 but this time(1-June-2007) the blood was taken from finger tip.Can the results also vary because of this?
3) Is it practically possible that Hb may fall from 9.5 to 8.8 in just 20 days time?Keeping in mind that Hb was 9.5 till 11-May-2007.
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Different factors can affect Hb readings, including the lab and also the hydration of the patient (the less hydrated, the higher the Hb reading will be, because there will be less liquid in the blood. Hb can also drop that amount in less time, so the drop is not unusual. Even a mild infection can cause a drop. What is important now is to continue to watch the Hb levels. 8.8 is still far above the level where transfusions would be recommended. I do not think the results should vary because of the body location where the blood is taken but perhaps some others can shed some light on this.
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"8.8 is still far above the level where transfusions would be recommended"....Is this phrase correct??? It should be not recommended...If I am not wrong...
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The phrase is correct. Transfusions would not be recommended at an Hb level that is this high. If the child is intermedia, transfusions may be recommended if the HB drops below 7 and stays at that low level, but this would also depend on how well the child is doing physically at that Hb. 6 is the lowest level acceptable without transfusing.
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Hi puneetsaluja,
The concept of keeping Hb above 10 or in normal range is once your child is classified as Thal. Major and you know that he is going to be transfusion dependant for the rest of his life.
Intermedias usually maintain their Hb around 6-7 mark, so if your child is Intermedia and you transfuse him at 8 or 9 then how will you know if he is Intermedia or not? As a matter of fact you will make him transfusion dependant and this is what happens to most Intermedias in the Sub continent and they get misdiagnosed as Thal. Major and make them transfusion dependant for the rest of their life!
I sure hope your child maintains the HB, so that you can rule out transfusions.
Take care, Peace!
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Intermedias usually maintain their Hb around 6-7 mark, so if your child is Intermedia and you transfuse him at 8 or 9 then how will you know if he is Intermedia or not? As a matter of fact you will make him transfusion dependant and this is what happens to most Intermedias in the Sub continent and they get misdiagnosed as Thal. Major and make them transfusion dependant for the rest of their life!
I totally agree with Sajid, bcoz this is what happened with my daughter,she was diagnosed at age of three, with her hb 6gm,definitely an intermedia,but was said a major and now is transfusion dependent,goes for transfusion once a month,though i do wonder sometimes that what would happen if we won't transfuse her for a couple of months to see if she can maintain hb of 6-7,but i am afraid to do any experimenting.
ZAINI.
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Doctors has advised to start blood transfusion when her hb falls below 7. As on 8th June her Hb was 8.1(It was 9.5 as on 11-May-2007). Further, her mutuation results : Polymorphism is(-/+).Doctor says if it would have been (+/+), we could have tried Hydroxrea but since it is (-/+) doctor will only prescribe if we sign a consent. There might be side effect of the medicine. I am confused as what to do???Can ayone please help??
Regards
Puneet
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Her Hb on 11-May-2007 was 9.5 but on 8-June it has fallen down to 8.1. Doctors have asked to get it checked again after 3 weeks. The rate by which it has fallen down indicates Thal Major.
Mutations are : IVS1-5/IVS1-1
AND
Polymorphism (-/+)
Doctor further says if polymorphism would have been (+/+) then we could have tried Hydroxea but since it is (-/+),it will be a risk to try hydroxea. And we want to try it will be at our own risk and we need to sign consent before doctor prescribes this in writing.
Can anyone please comment on this?
Warm regards
Puneet
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Hi All,
Her Hb has increased from 8.1 (on 8-June) to 9.0(23-June). I have kept her on wheat grass juice therapy from last one month.Earlier it was 9.5 (as on 11-may).I do not know if it is natural or wheat grass has started doing wonders.
Can anyone comment on this? I think she is intermedia only and NOT major.What do u say?
Puneet
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Hi Puneet,
Wheat grass has proven to induce fetal Hb. in Intermedias. It is good to know that it is working on your daughter.
I hope you are able to avoid transfusions with this safe and natural alternative.
Best wishes.
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Hi puneetsaluja
and evrybody
am so sorry to hear that your doughter have thalass. and i'll pray for her .....
first ful don't be shock and keep some faith you and your wife ,, i have same feeling that you got it when you hear that your doughter have thalass. i know how big shock is't and belive me i don't know any thing a bout thallas. even my wife and we start make some search and asking as you do now ...my son he is now 11and half is diagnosed as thalass. intermidea for 3 years he never recive any blood and his HBF was 98% everything show that he is intermidea but he got some flue and high tempreature that make his HB go from 9.5 up to 7.0 from that day we start transfusion the blood every month ..
I pray to the GOD to treat him and show me with good guid to the best treatment after 4 years i got a present from the GOD that is my second baby and she is a girl and she is 100% match with her brother after 2 years i made a BMT in italy but no succeful (2003) after that we made another BMT but with PBSC (PREPHERAL BLOOD STEM CELLS) (2005) and the new BM is workingok nows but with some problem like low imunety and some GVHD and all that will go soon (inshallah) with some drug like medrol and some kind of antybiotic ..
So now what am going to say i know what do u feel but don't loose HOPE ...
khalifa
state of kuwait
ONE FOR ALL AND ALL FOR ONE
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Hi Puneet,
It is interesting that your daughter's Hb has risen so quickly. It may very well be a result of the wheatgrass. Some patients respond much better to wheatgrass than others, and even majors can benefit from it, especially if their Hb regularly falls to levels of 8-10. There are unknown factors at work in some thals that result in a higher production of fetal hemoglobin. It may be that substances such as wheatgrass work better in these patients because there is already some HbF raising factor at work.
From a study concerning this difference in HbF production among similar thals
http://researchresources.bumc.bu.edu/abstract/5R01DK069646-02.htm
Thalassemias are man's most common Mendelian trait. Severe beta-thalassemia results from compound heterozygosity or homozygosity for mutations that abolish or impair beta-globin gene expression. The disease severity varies considerably, even among those with identical beta-thalassemia mutations and when known epistatic genetic factors, such as alpha-thalassemia, are considered. Most of this heterogeneity can be linked to the capacity to produce HbF. We hypothesize that there is genetic variation in cis-acting elements and trans-acting factors implicated in gamma-globin gene expression, in modulation of HbF concentration within erythrocytes, and in regulation of erythroid cell differentiation and proliferation. We wish to identify these genetic variations.
Studies like this may eventually explain some of these mysteries involved with the reasons for severity of thal, when all other factors seem equal.
There are factors besides the thal mutations that effect the severity of thal, so the mutations alone do not give the entire picture. Another child with the same mutations as your daughter might exhibit a much different thalassemia than your daughter. Time will tell, and if wheatgrass helps her, then do keep giving it to her. I take wheatgrass extract daily and I do think it gives me a higher energy level.
It is still too early to make any judgments about your daughter's future but there is reason for some optimism.
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Dear Dr. Andy,
I have to go for Hb check again tomorrow.
"It is still too early to make any judgments about your daughter's future but there is reason for some optimism"
As per your statement I would like to know till what age can it be identified if she is towards major or towards minor? I mean if she is able to maintain her Hb between 8-9 till 3 years of age will it be confirmed that she will behave like a minor for her entire life and will not be requiring any blood transfusion.
Warm regards
Puneet
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Hi Puneet
I really feel sorry for your daughter, but don’t worry belief in GOD. HE is great.
Let me tell you that I have daughter Priya whoes case is identical, she is thal intermediate with same polymorphim of (-/+), but UN luckily we came to know about her problem when she was 5 yrs. old. She is taking hydrea and maintaining her Hb above 7.2 which is quite low but she had never received any blood transfusion.
Puneet can you pls. tell me how do you prepare wheat grass juice for you daughter with or without water?
Good Luck and hoping the best for daughter.
Harminder
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Hi Harminder,
:welcome to the site.
You can grow your own WG patch and make the Juice according to this silly little tutorial:
http://www.thalassemiapatientsandfriends.com/index.php?topic=94.0
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Dear All,
Is there any news about DR. A.M Mathur. My daughter is 1.6 ys old and few months back she was diagnosed with Thal Major/Intermedia. She has not been transfused yet as she is maintaing Hb of around 9.6/9.7. I have kept her on wheat grass juice therapy.
Today,I visited Dr. Mathur and he claims that my daughter can be cured. I am too confused whether I should start the medicine recommended by Dr.Mathur or not.When I asked him for some references of the Thal patients whom he has cured,he made excuses and did not provided me with any reference. Please advice me if anyone has who has taken medicine of Dr. mathur and has been cured.
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Dear Dr. Andy,
Below is the chart of her HB level.
S.No Date Hb
1 11-May-07 9.5
2 1-Jun-07 8.8
3 8-Jun-07 8.1
4 23-Jun-07 9
5 21-Jul-07 9.7
6 1-Sep-07 9.6
Do you think wheat is doing its job?
Can she be cured if we continue the wheat grass for her?
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Dear Harminder,
I will be glad to tell you about the wheat grass juice preparation.It will be difficult to explain here.
Please feel free to call me on 9818568337.
Warm regards
Puneet Saluja
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Hi Puneet,
Wheatgrass will not cure thal but in some patients it does increase hemoglobin levels enough for them to avoid transfusions and for others it increases the time between transfusions. I do feel that your daughter is definitely benefiting from wheatgrass and that she should continue using it.
Even though your daughter is intermedia, her Hb level is far higher than where transfusions will be needed and also high enough to have a normal physical development. Please continue to have her follow a wholesome diet and take necessary supplements, along with continuing wheatgrass.
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Dear Dr. Andy,
Thanks for prompt response.Here in India there is one homoepathic Dr. A.M Mathur who claims he can cure Thal major. I visited him today and asked for some references.He smartly made some excuses and did not provide me with even a single refernence. Here is the article which I found about Dr. Mathur.
http://news.oneindia.in/2006/11/25/homoeopath-claims-cure-for-cancer-aids-1164436412.html
It will be really nice if you can investigate about this doctor and bring clarity.
His address is
Dr. A.M Mathur
H.No. 1265 Sector 17C
Gurgaon(Haryana)
INDIA
#+919811007677
Also, I would request all the members here to find out about this doctor and bring clarity to this.
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Hi Puneet,
There are some members of this group who have met with Dr Mathur and have their children using his Rodex medicine. Please do a search for the word rodex on our site and you will find numerous posts regarding this doctor and his treatments. As far as I have seen, his medicine does seem to have some minor effects in the short term, but no one has used it long enough to give a long term report. Rodex may be of some help to intermedias but I don't know if it will give you any better results than the wheatgrass.
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Hello Puneetsaluja,
i believe that two members on this forum,kabir_love and maha are using dr mathar's medicine Rodex for their kids,i don't think they are totally cured but they are using it and waiting for results,you might want to PM them.
Regards,
ZAINI.
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Hello Puneet,
My son has been on Rodex for almost 4 months now and till now there has not been any improvement in his hb level although certain other blood readings have improved. Dr Mathur says Rodex will stabilise the hb between 7-10 gm/dl. So why do you want to start rodex since your daughter`s hb is doing good with wheatgrass at 9.7.Rodex works in four cycles. In the first cycle the hb drops, in the second it goes up and down and stabilises in the third and fourth cycle. I am almost finished with the second cycle. If the doc`s claims are true I should start seeing results in a month or so. I suggest you wait to start your girl on Rodex. Feel free to ask anything.
Take care
MAHA
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Dear Maha,
Thanks for your quick response.As per Dr. Mathur,he claims that I need to give Rodex for 1 year starting from this winter to next winter.In the hot months,I need to keep my daughter in some hill station. He also claims that she will be TOTALLY cured with no signs of THAL MINOR EVEN.I do not know how is this possible?How can he change or cure the faulty genes? I will appreciate if I could speak to you over phone to get more clarity.My contact number is 9818568337.Else,you can provide me with your contact number.
Warm regards
Puneet
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Hello Puneet
Dr Mathur definitely claims to cure thal. He says very clearly his drug works like a bone marrow transplant and is infact more effective. Remember even when you go through bmt you still have two faulty genes that can be passed on.Rodex programmes the bone marrow to produce normal Rbc`s. I hope you got the picture. Will contact you soon.
Regards
MAHA
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Is that even possible? correcting of faulty genes ?i though it was only possible with gene therapy.
ZAINI.
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Hi Zaini,
You got me wrong. Just like you are left with two faulty genes even after a successful bmt, you will be left with two faulty genes even with Rodex.
Regards
MAHA
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Hi Maha,
There are two things that have to be considered when we talk about the genes after a BMT.
One is the genes in the Bone Marrow that DOES get replaced by correct in the way that the new marrow is of the donor and not of the patient anymore. The donors marrow simply replaces the old marrow and hence the patient has a marrow with working genes.
The other thing is the genes passed on to the future generation via the reproductive system which has nothing to do with BMT and thus remains the same i.e the patient WILL pass the Thal. genes to the children.
What Zaini is asking is the replacement of the genes in the marrow that comes with BMT. Rodex HAS TO replace those genes in the BMT in order to cure. The question is; How is this possible with an oral medication?
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:yeahthat :exactly,
I was unable to explain myself,how can a drug taken orally be able to supply even donor genes,they way the donor marrow work in BMT?
Still i wish you luck with Rodex,
ZAINI.
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Hello Puneet
Wanted to know how is your daughter doing. Has she started any hydrea. How much is her hb now?. From what I read in your posts and my personal experience, it looks intermedia not major in ur daughters case. Wht has doctor's concluded. AS for the polymorphism n Hydrea, when I had got it dont in Pgi for my son, the doctors's told me that Hydrea might not work, but we still worked and it has been 5 years since he is on Hydrea. So maybe u would like to take a second look at Hydrea.
Keep us posted please.
Puja
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What is polymorphism and how it relates to hydrea??????????????????
Manal
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Manal
i am startting a new topic, as i think this is an important topic.
Puneet & Priya
May be you can shed some light on this, after you go thru my post.
Thanks
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Dear Dr. Andy,
Dr. Mathur is a fraud. So I am not following him at ALL.
You will be happy to know that Hb of my daughter has increased to 10.2.
I am giving ONLY wheat grass juice to her twice a day. Please find her Hb record.Her weight is 9.75 kgs
S.No Date Hb
1 11-May-07 9.5
2 1-Jun-07 8.8
3 8-Jun-07 8.1
4 23-Jun-07 9
5 21-Jul-07 9.7
6 1-Sep-07 9.6
7 20-Oct-07 10.2
Dear Dr. Andy, Do u think it is really possible for Thal major to have 10.2 Hb without blood transfusions at the age of 19 months.Or is it a miracle? I have a faith in my God and I am sure she will turn into minor and will not require any transfusions.
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Hi Puneet
I feel very good to see your daughters HB has been raised above 10.
As far as I know your daughter should be either intermediate or minor because a major can’t survive without transfusion till 19 months. But surely Mr. Andy can shed more light into it.
BEST OF LUCK and keep it up.
Dimple
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I continue to believe that it is unlikely that your daughter is a major. Normally, major would have manifested by now. Instead, her Hb is rising, which may be the effect of wheatgrass. The full effect of wheatgrass takes some time and it is thought that a full year of using wheatgrass is necessary to see the full effect. Please continue her on wheatgrass and folic acid if you have not yet started that. Both gene mutations you have previously mentioned are often found in thal intermedias although there is no certain way to know if the genes will manifest as intermedia or major. Also, if there is the presence of the alpha thal gene it can act as a moderator of thal and present as intermedia. Do you know if either parent carries the alpha gene? DNA testing may be the only way to get definite answers at this point.
A 19 month old child with an Hb over 10 is very unlikely to be a major, but it may be some time before you can be definitely certain of this. Since wheatgrass does seem to be having a positive effect I will have to disagree with what the doctors told you about hydroxyurea. The raised Hb does show an ability to create fetal hemoglobin, which is the main deciding factor for giving hydroxyurea. If later on she does have a drop in Hb below 8 I would seriously consider hydroxyurea before transfusions. For the time being, continue with what you are doing.
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Hi,
Is wheat grass that useful? i mean what if i start it with zainab?would the effects be same? she is a transfusion dependent intermedia.
ZAINI.
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Hi Puneet,
I'm so happy for you :happyyes It's good to see that WG is doing good to your child.
Wish you all the best for the future!
@Zaini
I sure hope that WG boots up Zainab's HbF genes. It's worth a try. After all it is natural and safe!
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Dear Dr. Andy,
Thanks for replying.
What is DNA testing? How it is done?
Is DNA testing similar to Thal Mutuations or Polymorphism tests which we have already done?
Regards
Puneet
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Hi Puneet,
What I was referring to was DNA testing for alpha thal trait. Alpha thal trait can reduce the severity of beta thal and is one possibility that can explain the higher Hb. However, DNA testing for alpha thal is not widely available.
Not all the factors that determine that a patient is intermedia instead of major, are understood. I will refer you to the post at http://www.thalassemiapatientsandfriends.com/index.php?topic=1316.msg10679#msg10679 and the studies noted there, along with the following:
http://www.ncbi.nlm.nih.gov/sites/entrez?Db=PubMed&Cmd=ShowDetailView&TermToSearch=16184575&ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVAbstractPlusDrugs1
Compound heterozygote state for GgammaAgamma(deltabeta) degrees -thalassemia and hereditary persistence of fetal hemoglobin.
Fucharoen S, Panyasai S, Surapot S, Fucharoen G, Sanchaisuriya K.
Department of Clinical Chemistry, Faculty of Associated Medical Sciences, Khon Kaen University, Khon Kaen, Thailand. supan@kku.ac.th
We report a hitherto undescribed interaction of a deletional (deltabeta) degrees -thalassemia and a deletional hereditary persistence of fetal hemoglobin (HPFH) in an adult Thai individual. He was a 40-year-old Thai male who had the following hematologic data: Hb 13.9 g/dL, Hct 43.8%, MCV 78.0 fL, MCH 24.7 pg, MCHC 31.6 g/dL, and RDW 17.1%. Hemoglobin analysis revealed 97% Hb F with Ggamma-globin chain predominant. Globin gene analyses demonstrated that he carried the GgammaAgamma(deltabeta) degrees -thalassemia deletion in trans to the HPFH-6. Hematologic data of the patient were compared to those of the heterozygotes for these high-Hb F determinants found in his parents and an unrelated Thai patient with a compound HPFH-6/deletion-inversion Ggamma(Agammadeltabeta) degrees -thalassemia previously described. (c) 2005 Wiley-Liss, Inc.
PMID: 16184575 [PubMed - indexed for MEDLINE]
It is probably too early to determine what the severity of your daughter's thalassemia will be, but it is very encouraging to see her Hb rising. Something is keeping her fetal hemoglobin gene turned on and the wheatgrass therapy is taking advantage of this. It is possible there is some factor that has not yet been noted that is causing this production of HbF. Regardless of what eventually happens, and let's hope she continues as she is now, the longer she can maintain a good Hb, the more normal her early growth and development will be. That is very important.
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Hi Puneet
I agree with Andy. It`s probably the overall effect of the other things you are including to make the wheatgrass. I kindly request you to write in detail of how much wheatgrass, aloe and neem gillo you are using to make the concoction. If you are adding any water and so on. It would probably benefit every intermedia on this site.
With warm regards
MAHA
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I will surely write about wheat grass in detail in 2-3 days time...
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Dear Dr. Andy,
I am still not clear on the DNA testing for Alpha Thal trait. Are you talking about Polymorphism test which we had already done?
"What I was referring to was DNA testing for alpha thal trait. Alpha thal trait can reduce the severity of beta thal and is one possibility that can explain the higher Hb. However, DNA testing for alpha thal is not widely available. "
Sorry to bother u again and again...
Regards
Puneet
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Dear All,
I have come to know about one more homeopathic doctor in Kolkata, Dr P. Banerjee.
Below is the link to his website
http://www.drpbanerji.com/thalassemia.htm
I would appreciate if you all can investigate about this doctor. I hope he is not fraud like Dr. Mathur of Gurgaon.
Please help me and others....
Let us all bring light on this....
Dear Dr. Andy,
Please your expert comments on this.
Rgds
Puneet
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I have seen mention of testing for alpha trait at the Cooley's Anemia website.
From http://www.thalassemia.org/sections.php?sec=1&tab=8
The trait for alpha thalassemia (or Silent Carrier) is much more difficult to identify and can only be determined by a special DNA test called alpha globin DNA mutation analysis. This test is available at only a few major medical centers in the US. If you suspect that you may have the alpha thalassemia trait and cannot visit one of those centers, your doctor can send your blood sample to one of the special laboratories for DNA testing.
I do not know if you have had this test done yet.
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I am very skeptical about Dr Banerji's claims that he can treat almost every disease known to mankind. Not only this, but he can do this by having a patient give a brief description of their ailments in an email. The payment required is the same regardless of the disease, which seems strange considering how different each condition is. Once again I have to ask this question. Where are the patient testimonials from patients who have been cured? Wouldn't Dr Banerji be known worldwide if this worked for thal or any other illness?
Has anyone had any personal experience with this man's remedies?
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Update on my daughter's condition
Dear All,
This is with reference to my post in Thal Forum regarding my daughter who is Thal Intermedia and has not been transfused till date. She is 4yrs and 8 month old.
Really worried now as her Hb has fallen to 7.7. Consulted her doctor at Apollo Delhi and she advised it is the right time that we start some treatment for her. Treatment can either be trying hydroxurea (though the chances are only 15% that she will respond to it) or start blood transfusions.
I am little skeptical about start hydroxurea as have heard that there are side effects and also since the chances are only 15%. Can someone please help me with this?
Since her situation is not that bad, i am also thinking to increase the quantity of wheat grass from once a day to twice a day. I can try this for one month and then get her Hb checked again. If it reaches somewhere near 9, I do not think doctor will then ask to start hydrea or transfusions. But this will be purely on my risk. What is is your opinion on this?
Thirdly, I have my son who is 8 months old now (Thal Minor) and i have preserved his stem cells (cord blood). If HLA and other things matches, can i for this this stem cell therapy as well? What are the chances? What is the success rate? Can Thal Intermedia's who have not been transfused go for it?
My daughter is 4yrs 8 months old now and has not been tranfused yet? Enclose is her Hb count for last 3-4 years. By seeing this data, what do you suggest as to what is appropriate for her?
S.No Date Hb
1 11-May-07 9.5
2 1-Jun-07 8.8
3 8-Jun-07 8.1
4 23-Jun-07 9
5 21-Jul-07 9.7
6 1-Sep-07 9.6
7 20-Oct-07 10.2
8 21-Dec-07 9.7
9 28-Feb-08 7.8
10 6-Mar-08 9.1
11 1-Jul-08 9.1
12 3-Oct-08 8.9
13 3-Jan-09 8.5
14 29-Jun-09 7.7
15 8-Aug-09 8.2
16 30-Nov-09 7.7
17 1-Jan-10 8.2
18 12-Feb-10 8.3
19 8-May-10 8.5
20 12-Jul-10 8.2
21 4-Dec-10 7.7
22 8-Jan-11 7.7
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Hi ps1236,
Where did the 15% estimate come from? I don't think anyone can actually give you a percentage chance on whether or not hydroxyurea will work. One might make an educated guess based on the fetal hemoglobin level of the child, but even there, other factors may work for or against the success of hydroxyurea.
It may be worthwhile to try more wheatgrass, as it is perfectly safe. Folic acid, B complex, magnesium and natural vitamin E may also have some positive effect on the Hb level by helping to produce better quality red blood cells that survive longer. If you do choose to try hydroxyurea, please continue the wheatgrass also, as hydroxyurea has been shown to work in tandem with other Hb inducers. Also, add L-carnitine to the mix if hydroxyurea is started.
And yes, doctors are doing bone marrow transplants on intermedias if severe enough. Recent reports on using cord blood rather than bone marrow or harvested stem cells, show that cord blood transplants can be very successful for curing thalassemia.
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Dear Puneet,
Thank you for your update on your daughter. It seems like our daughters have quite similar conditions. It is not easy to be a parent, as we want to do the very best for our child and we are so afraid to do the wrong things.
This is from me to you :hugfriend
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Hello PS,
My son is detected with HbE-Beta thalassemia in Dec2009 when he was 3.5 yrs old. His Hb falls to 6.5 because of infection and he has been transfused 1st time and till then no transfusion and his Hb levels is between 8 and 9.
I went to Apollo Delhi that time and the doctor(she) told me the same thing to go for regular transfusion, but I have seen many site in internet where it is mentioned that regular transfusion is to be considered if hb falls below 7 constantly.
then I meet another doctor in delhi he is ex- AIIMS personal and he recomended Hydrea, and my son is taking hydrea since Feb 2010, till now I have not seen any increase in Hb level but it is constant (8 to 9 ).my son is now 4.5 yrs old.
from your daughter's Hb record it seem that your daughter is also maintaining hb level of 8 to 9 with out hydrea and if her physical growth is ok without any other complecation then please discuss any other specialist before starting regular tranfusion.
I am from Delhi /gurgaon and currently my son's regular check-up is going on at Paras hospital gurgaon.
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Dip,
Even though the Hb level may not change much, the HbF percentage has most likely increased. This can be confirmed through hemoglobin electrophoresis testing. When the HbF production is increased, the more unstable hemoglobin production is reduced, providing a "cleaner" blood and less stress on the spleen, as there are fewer bad red blood cells to filter out. As long as you see a higher percentage of HbF from hydroxyurea use, you know there is a substantial benefit even though the Hb level hasn't showed much movement. A physical evaluation of the patient is also quite helpful. If growth is normal and energy levels are sufficient, then transfusions can be avoided.
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is there any way of checking through the DNA testing or something else if the child is an intermedia or major?
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Hello Andy,
before starting Hydrea my son's HbF was 23% and HbE+HbA2 was 62%, so after 1year of using hydrea should I go for another Electrophoresis?
last time (December 2009)when I did electrophoresis test from two different lab the reports was like
Lab:1
HbA=Absent
HbE=62.7
HbF=23.7
Lab:2
HbA=8.7%
HbE=62.1%
HbF=24.3%
others=3.3%
Is it HbE-beta zero or HbE-beta+ ?
can it be predicted from above report?
regards,
Dip
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Dip, if these two labs tested at the same time, one is wrong about the HbA. If there were no transfusions in the period of approximately 4 months before these tests, then any HbA found would be your son's own HbA and would indicate he is not beta zero. If indeed, the HbA is zero, it would confirm beta zero thalassemia of the one gene. The other gene produces HbE only.
Yes, do get a new electrophoresis as this will show if there has been any changes in the HbF. If hydroxyurea is working, you should see a higher percentage of HbF now.