Thalassemia major or intermedia

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Offline Andy Battaglia

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Re: Thalassemia major or intermedia
« Reply #60 on: February 16, 2014, 08:50:59 PM »
Rajiv,

You can mix the powder with juice.

Hydroxyurea can cause temporary sterility but this is restored when the drug is stopped.

Where in India will you be located?
Andy

All we are saying is give thals a chance.

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Offline Rajiv

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Re: Thalassemia major or intermedia
« Reply #61 on: February 17, 2014, 02:20:11 AM »
Dear Andy,
Probably in Jaipur or in Haryana close to Delhi.  We have flat/house at these two places. My son cry a lot when he fills some discomfort or pain and that time it's difficult to have him calm.   I hope taking this medicine will not affect his easy/happy living.  I mean stomach pain, itching, and same type of related issues.
He has been taking tri vitamin without iron and colic acid since he was two months old.
Thanks a lot Andy for quick help. We are grateful to GOD who gave us such a kind and helping friend.
Best regards
Rajiv

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Offline Andy Battaglia

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Re: Thalassemia major or intermedia
« Reply #62 on: February 18, 2014, 01:23:36 AM »
You may have a better chance in India of finding doctors willing to try hydroxyurea. Dr Viajy Ramanan of Pune has had some success with children who did not require transfusions during their first year.
Andy

All we are saying is give thals a chance.

Re: Thalassemia major or intermedia
« Reply #63 on: February 18, 2014, 03:12:28 AM »
Hi Rajiv,

You can contact Dr. V P Chaudhary also. if you need details i can give you. moreover you need to contact National Thalassemia welfare Society Delhi. they organise camp on Tilak Nagar on every second sunday of the month where you can meet with him.

Regards
Sushil Thakur

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Offline Andy Battaglia

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Re: Thalassemia major or intermedia
« Reply #64 on: February 18, 2014, 03:37:28 PM »
Dr. V P Chaudhary comes highly recommended.
Andy

All we are saying is give thals a chance.

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Offline Rajiv

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Re: Thalassemia major or intermedia
« Reply #65 on: February 19, 2014, 11:51:42 AM »
Dear Andy and Sushil,
Thanks a lot. I will speak to the doctor here and then will go for the treatment.
Best regards
Rajiv

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Offline Rajiv

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Re: Thalassemia major or intermedia
« Reply #66 on: March 28, 2014, 08:34:36 PM »
Dear Andy,
We went to the doctor two days back.  Get the electrophoresis done for my son who is 15 months old now. The report is
Hb A - 5.7
Hb A2 - 2.0
Hb F   - 92.3
Hb - 9.8
wbc count - 15.0
rbc count   - 4.85
Hematocrit - 30.9
MCV  - 63.7
HCH  - 20.3
Mean Corp Hgb conc   - 31.8
Red cell distr width  - 25
Platelet count - 500
Mean platelet count - 8.5
I am attaching head circumference and body weight chart for my son.  Dr Giardina advice me to have the baby transfused so that they can see if that changes
development of the baby. She told me that head circumference is higher and if we want to stop it from more expansion that may have caused due to illness
we should go for the transfusion.  I am attaching the result report and chart at email : andy@thalpal.com.   Kindly suggest what to do. Doctor also discouraged
me for hydroxyurea and wheatgrass.  As per her advise these are not going to change anything rather she advised us for transfusion that give good quality of life.
As per her advice the Hb A is not going to go higher than this 5.7 to 6/7%.
I shall be grateful for the response. 

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Offline Andy Battaglia

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Re: Thalassemia major or intermedia
« Reply #67 on: March 29, 2014, 08:53:09 PM »
Rajiv,

I will reply to this by email. If anyone has an explanation as to how a child could have skeletal deformities when the Hb is no lower than it would be if transfusions were taking place, I would like to know the explanation.

And to anyone asking about wheatgrass, why even mention it to your doctor? It's a food. You don't tell your doctor you eat a salad, so why ask if it's OK to take wheatgrass. If you eat bread, you eat wheat. I generally recommend Kamut grass because Kamut is the original form of wheat before it was hybridized.
Andy

All we are saying is give thals a chance.

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Offline Rajiv

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Re: Thalassemia major or intermedia
« Reply #68 on: March 31, 2014, 02:35:03 PM »
Dear Andy,
Thanks a lot for the quick reply and the guidance.  I really appreciate and I am grateful for it.
We all thalpal patients and friends are fortunate to have you with us all the time for our assistance.
Yes you are right about not mentioning giving of wheatgrass to the baby.  But it was mentioned only when doc
asked what are the food and supplement that you are giving him in addition to folic and tri vitamins. 
I completely agree the points highlighted by you.  After your response I don't think there is any requirement for the baby
to go for transfusion unless there is explanation comes from someone who had such a experience and who saw expansion
of skull because of this illness despite baby having maintained hb 10 all the time until his present age (16 months running).
I will see here any doctor who give us prescription for hydroxyurea.    I would also like to ask if there is any blood test required
to be done before trying hydroxyrea just to see if the medicine will work for him or not.
Best regards,
Rajiv

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Offline ekilucky

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Re: Thalassemia major or intermedia
« Reply #69 on: April 18, 2014, 05:22:31 PM »
Hi Rajiv/Andy,
Was going through this thread, the same thing 2 of the doctors said (the forehead/skull size).
I can not explain how a doctor explains to a doctor , but this is what a doctor said to me.

When the intermediate thal leads to major thal, then the above behavior is seen.

Thanks,
Eki

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Offline Andy Battaglia

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Re: Thalassemia major or intermedia
« Reply #70 on: April 18, 2014, 05:38:12 PM »
There are changes to the bones and skull in patients who should be transfusing. The question in this case is how can transfusion help when the patient's Hb is still as high as it would be if the patient transfused.?
Andy

All we are saying is give thals a chance.

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Offline ekilucky

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Re: Thalassemia major or intermedia
« Reply #71 on: April 18, 2014, 06:04:52 PM »
Thanks Andy. This cleared a point in my mind.

Hi Rajiv,
Can you please tell me the medicines you are using for your kid. My daughter (1 year) has the similar symptoms. To be precise , the HB count was 5.4 with Adult HB of 0. Till now there has been 3 transfusions. The fetal HB was same like the one you have posted.

Thanks,
Eki
Thanks,
Eki

Re: Thalassemia major or intermedia
« Reply #72 on: April 20, 2014, 07:29:34 AM »
Hi Andy,
Our 18 month old daughter just started transfusing. Dr. Mahoney is her hemotologist at Texas Children's. She genetically was supposed to be thal major but clinically presented as intermediate. Her HB ran in the 8 range. The reason he decided to start transfusing her was not the hemoglobin but the bony changes. Her head is enlarged, she has weak bones (fractured her wrist right after 1st birthday), and also chooses not to walk (although she CAN). I asked the same question, how could a point and half do any good? From his explanation I understood that first, her body is creating tons of disfunctional cells (sickle cells), and also the bone marrow is in overproduction mode. Apparently these extra cells store themselves into the bones, making them expand and not as strong, thereby causing the bony changes and deformities. He said once she starts transfusing her own "factory" will calm down, and the bones should start to develop normally. I hope I've remembered everything he said. This explanation was so thorough that we had no reservations about starting her transfusions (even though we were so scared!) She has only had two transfusions so far but her physical progress is phenomenal and we know we made the right decision :)
« Last Edit: April 20, 2014, 07:49:37 AM by Princess'M' »
Keep your head up. God gives the hardest battles to his strongest soldiers.

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Offline Andy Battaglia

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Re: Thalassemia major or intermedia
« Reply #73 on: April 21, 2014, 02:37:51 PM »
The difference with Rajiv's child is that the Hb was above 10 until recently. If the Hb has dropped below 9 already, there would be no question about transfusing, but it has only now dropped below 10. If it continues to drop, there will be no point in avoiding transfusion, but it should be below the point where it would be after transfusion if transfusions are to begin. This may happen quite soon, but from the beginning, this case has defied the predictions.
Andy

All we are saying is give thals a chance.

Re: Thalassemia major or intermedia
« Reply #74 on: May 02, 2014, 05:27:06 AM »
Sorry Andy, I should've been more specific... Referring to the RDW count for Rajiv's son, I believe these are the variable widths of cells that are created. Since the number from last July is at about 22, this is what I was referring to about the cells causing bony changes (if it's coupled with high MCV). Please correct me if I'm way off base.  I will reconfirm this info next week at M's transfusion, as it's been a while since her doctor explained that part to us. I'm very intrigued about thal intermedias like M that don't "follow the books".  Just wanted to thank you for all the info you put on here... It's an amazing support for our family.
« Last Edit: May 02, 2014, 06:01:55 AM by Princess'M' »
Keep your head up. God gives the hardest battles to his strongest soldiers.

 

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