My 14 months old daughter has been diagnosed with Thal....Please help......

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?

  ,

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.

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

What is polymorphism and how it relates to hydrea???

Manal

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

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.

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

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.

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.

Hi Puneet,

I'm so happy for you 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!

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

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.

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

I will surely write about wheat grass in detail in 2-3 days time...

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