Thalassemia major or intermedia

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Offline Rajiv

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Re: Thalassemia major or intermedia
« Reply #45 on: September 24, 2013, 04:10:42 PM »
Dear Andy,
Thanks for the quick reply.  Actually this time the doctor did not recommend any test and we also could not think about that.
The last electropherosis test was done two months ago on 19 July when he was 7 months old.   In his report he was stated a case
mostly likely to associated with Beta Thalassemia major.  But other factor a case of HPFH can not be ignored.  Also the presence
of Hb A could not be definitely demonstrated.   
I forget to mention we are giving
multivitamin without iron to the baby.  Will see the doctors after two months in November than we will ask for it.  Andy, is it possible
a person with two beta thalassemia mutation  c.-138 C>T and C.92+5G>C can be a case of HPFH?   Just seeking some hope otherwise
we are okay with the destiny and ready for any eventuality.  Also if there is requirement of going another electropherosis before November
(when he will be 11 months old) kindly let us know so that we can get it done.
Thanks
Best regards,

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Offline Rajiv

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Re: Thalassemia major or intermedia
« Reply #46 on: October 01, 2013, 05:43:59 PM »
Dear Andy
My son has very few hairs on his head.  His is 9 months and 3 days old today.  May be this is a because of his illness.   Though his hb level
remains good at around 10 and last time on 19 September it was 10.7
I have posted almost all of his report.  Kindly confirm is it because of disease or some other factors contributing.  Suggestions from all friends are solicited.
Thanks
best regards,
rajiv

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Offline Andy Battaglia

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Re: Thalassemia major or intermedia
« Reply #47 on: October 01, 2013, 10:57:49 PM »
I would doubt that it has anything to do with thalassemia. Does your doctor think anything is wrong? It may be that the child is just slow to grow hair. Does he have a good appetite and is he eating nutritious foods?
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 #48 on: October 02, 2013, 12:12:05 PM »
Dear Andy
Thanks for immediate revert back.
We did ask the doctor but they told it not to be associated with the thalassemia disorder.
The baby is very active. Playing almost all day when awake. Eating well. We give healthy diet
Including folic acid and liquid tri vitamin without iron. It's good to learn.  May be slow hair growth.
There are thin and small hair on his head but not fully covering the head.
We were worrying so we're seeking suggestions.
Thanks
Best regards
Rajiv

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Offline Rajiv

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Re: Thalassemia major or intermedia
« Reply #49 on: October 31, 2013, 07:08:11 PM »
Dear Andy
My son's next visit to  the doctor is planned in the last week of November 2013.  So far his hb level has been good.  He entered in his 11 months on 29 Oct.
It was 10.7 when last visited to the doctor on 19 September.  His appetite is good, energetic and does a lot of activities. 
He craws good.  Can stand and walk with the help of table, sofa.  His first tooth has come.
He eats well the health food includes cereals, milk and vegetable/fruit (Gerber 2nd food).  In addition we give him folic acid and tri-vitamin with no iron.
In his last electrophoresis at the age of 7 and haft months his hb was A (nil), A2 (within range 1.9) and fetal hb 98.1
My question to you is what type of test we should go for during this visit.  Another electrophresis and the others. Kindly suggest.
Thanks,
best regards, 

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Offline Andy Battaglia

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Re: Thalassemia major or intermedia
« Reply #50 on: October 31, 2013, 09:55:08 PM »
Rajiv,

The only test necessary will be the blood count to check the Hb level. A complete blood count and hemoglobin electrophoresis may be done, but they may decide to wait until the child has passed one year of age.
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 #51 on: November 01, 2013, 01:42:39 PM »
Dear Andy,
Thank you so much for the quick advice.
The hb count the doctors do everytime we visit them at Weil Carnell.
We will get the eletrophoresis done during this visit to see what is
the improvement related to formation of hb A.
Your help and advice means a lot for us.  GOD bless  you, all thalpal members (patients and friends).
May GOD give us a permanent solution to our problem.
Thanks
best regards,
Rajiv 

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Offline Rajiv

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Re: Thalassemia major or intermedia
« Reply #52 on: January 15, 2014, 04:40:10 PM »
Dear Andy,
My elder son who is around 11 years old is a thal minor.  His hb level remains around 9.1 at all time.
We did his blood test for iron deficiency but that was not the case for low hb level.  He is enegetic too.
The thing is he does not eat enough food.  We advice and ask him every time he eats but he leaves it unfinished.
Kindly suggest what we should do?  He is also not keen on taking juice and fruit.  Very few fruits he likes.
Will be grateful for the advice
Thanks
Rajiv

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Offline Andy Battaglia

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Re: Thalassemia major or intermedia
« Reply #53 on: January 18, 2014, 07:52:14 PM »
Rajiv,

This is a problem for most parents in general, including me. If the boy will drink smoothies, fruits and even veggies can be incorporated in a good tasting nutritious drink. Bananas are good nutrition and should be encouraged if he will eat them. For some good tips on getting kids to eat healthy foods, see http://www.helpguide.org/life/healthy_eating_children_teens.htm
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 #54 on: January 20, 2014, 07:11:51 PM »
Dear Andy,
Thank you so much.  We will try these options.
We really appreciate the information provided.
My other younger son who is now around 13 months is also doing good.  For far his hb is around 10. 
Energetic & doing great.  Got his four upper and two lower teeth.  Going to see the doc by end
of January for follow up.

Best regards,
Rajiv

Re: Thalassemia major or intermedia
« Reply #55 on: January 20, 2014, 08:40:27 PM »
Sometime ago I recommended Nutri Bullet product that makes wonderful smoothies. I still like the product.

http://www.thalassemiapatientsandfriends.com/index.php/topic,4757.0.html
Regards.

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Offline Rajiv

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Re: Thalassemia major or intermedia
« Reply #56 on: February 14, 2014, 04:58:47 AM »
Dear Andy,
Yesterday we went to the hospital for check up for my son who is now 13 months and 20 days old. I am giving
His blood result details as follows:-
WBC - 16.1
RBC-4.94
HB-10.7
Hematocrit-32.1
Mean corpuscular vol-64.9
MCH-21.5
Mean corp HGB-33.2
Red cell dist width-23.4
Platelet count-518
Mean platelet volume-8.6
Reticulocyte count-3.52
Absolute count-174.3
Kindly let me know if anything is attentive at this point of time.
Blood electrophoresis  result I will let you know when I get it probably within next few days.
Thanks and regards
Rajiv

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Offline Rajiv

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Re: Thalassemia major or intermedia
« Reply #57 on: February 14, 2014, 05:13:28 PM »
Dear Andy,
If Hb level of my son is maintained at or around 10 even if it is 90% fetal hb.  Then do we need to have him transfused. 
As per doctor they were mentioning that fetal is easily breakable and does not give requisite energy to the body.  Therefore
the baby may need transfusion.
I want to mention that he is energetic and does lot of activities.  He got his four upper teeth and two lower.  He is walking now and eats well. 
Hard to hold him when nurses want to take his blood for lab test.   
Kindly suggest what we should prepare for at this point of time.  I will post you electrophorous result later when I got it.
Thanks and regards,

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Offline Andy Battaglia

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Re: Thalassemia major or intermedia
« Reply #58 on: February 15, 2014, 09:21:23 PM »
Rajiv,

Fetal hemoglobin has a high affinity for oxygen, which means that it carries oxygen easily, but also does not let go of it as easily as it does with adult hemoglobin. However, it does supply oxygen throughout the body and is an acceptable substitute for HbA. You have to go by your son's energy levels and his growth pattern. If he is energetic and growing, transfusion should not be considered, as his Hb is still quite good.

I feel there is a problem here. Your son may be an excellent candidate for hydroxyurea treatment because he still has not transfused after a year. However, it is difficult to get doctors in the US to try hydroxyurea in thal patients. So, I would encourage that wheatgrass be given to the child in some form to see if it can help boost the Hb level. I would also suggest bringing up the subject of hydroxyurea with your doctor. Some doctors have had good results using a program of hydroxyurea and wheatgrass, especially with patients who have not required transfusions during their first year.

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 #59 on: February 16, 2014, 08:42:33 PM »
Dear Andy,
Many thanks for the quick response. I have bought wheatgrass powder from GNC today.
Kindly let me know how much quantity we should administer him and with which way.  I mean we should mix that in milk or juice. His weight is 9.45 kilograms and height is 0.77meter.  I will ask the doctor for hydroxia option.  What I was under impression is that hydroxia can cause impotency.  Is that correct or I am misunderstood for that. Kindly clarify.  I will be going back to India by end of this year permanently.  We can go for hydroxia option there if is recommended for my son that time. Waiting for the response.
Thanks and regards
Rajiv
 

 

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