Recent Posts

Pages: « 1 2 3 4 5 6 7 8 9 10 »
51
Greetings / Remembering Lisa on Her Birthday
« Last post by Andy Battaglia on March 23, 2023, 05:59:49 PM »
Happy Birthday to Lisa in Heaven.   

I became involved in your group 20 years ago to help out because your health was no longer good. I've tried hard to help people over these years, always in your memory.
It's been heartening to see so many other online efforts to help those with thal over the years, since you first founded your forum. I feel that we paved the way for these efforts by others and I know you would be pleased to see your thal friends find out that they are not alone in their daily struggles.

More than ever, I wish you were here to talk to. No matter how hard life got, you always found a way to offer friendship and hope. I miss you so much.
52
Thalassemia Major / Thalassemia Major & Abnormal Liver Function Test Readings...
« Last post by Sagar on March 20, 2023, 02:35:55 PM »
Hi Everyone,

Hopefully this post finds you all healthy. I am happy to be back after quite a while, writing this post on this incredible platform.

I am a 24-year-old thalassemia major patient from India weighing 65kgs, taking chelation therapy of desirox 2500mg per day every 2 consecutive days & kelfer 4000mg every 3rd day after 2 consecutive days of desirox. (Eg:- Mon&Tues – Desirox, Wed- Kelfer & so on). Please note that my liver has a severe iron overload, my pancreas has a moderate iron overload & no iron overload in heart.

My Recent Liver Function test (LFT) report showed bilirubin-total(B/T) of 5.0, bilirubin-indirect(B/ID) of 4.14 & bilirubin-direct(B/D) of 0.86 which is way much higher than the normal limits. I also noticed a steady rise in levels of B/T, B/ID and B/D compared to a year ago. Please note that my SGPT level is 42 and SGOT level is 45. Due to high B/T, I notice dark urine many times in a day and somewhat yellowish skin.

Is this increase in the above levels due to Desirox dosage? Can it be Gilbert Syndrome (which I haven’t tested yet)? Can it be controlled by any home remedies?  Is it harmful to the liver and body in the long run? One of my doctors said that increased B/T readings can lead to Jaundice more often!!

Request Andy for expert advice.

Report attached below.

Regards,
Sagar.
53
Diet, Nutrition and Supplements / Re: Wheatgrass Juice Dosage for 5 years old
« Last post by BobaFett on February 20, 2023, 08:36:20 PM »
Update:

Currently giving 2g of wheatgrass juice powder per day.
54
Thalassemia Minor / Re: Supplements for thal minor
« Last post by VB on February 06, 2023, 05:41:02 AM »
Hi Andy,

Thank you for your response. As per the CBC blood work, my 11 year old son's hemoglobin is as follows :

     Hemoglobin       10.8       (11.7-14.1).

Hemoglobin Electrophoresis shows "Consistent with Thal Minor".

Do you recommend any other testing ? We are hoping for him to grow more and gain some weight.

Thanks!



55
Diet, Nutrition and Supplements / Wheatgrass Juice Dosage for 5 years old
« Last post by BobaFett on January 30, 2023, 12:48:01 AM »
Hi all,

Need some advice on how much per day should I give my child wheatgrass juice powder?
1 serving is 3 grams (for adults). Take 1 to 2 servings per day.

Attached with photos of the product.

Thanks in advance.
56
Curing Thalassemia. Bone Marrow & Cord Blood Transplant / Need suggection about Haploidentical BMT
« Last post by pareshdas1985 on January 28, 2023, 08:48:37 AM »
Sir please suggest me, should i go for a haploidentical BMT for my single 5 years thalassemia GIRL at Appolo Hospital Delhi.

Age - 5 years
weight - 18 kgs
Ferritin  - 2200 (as on 22/10/22)

57
Diet, Nutrition and Supplements / Re: IP6 dosage for 5 years old?
« Last post by BobaFett on January 16, 2023, 07:52:12 AM »
I see, thanks Andy for the feedback.

Can IP6 be consumed after she wakes up, together with Exjade, both 30 minutes before her breakfast?

As from what I read, IP6 will be best consumed on empty stomach.
58
Diet, Nutrition and Supplements / Re: IP6 dosage for 5 years old?
« Last post by Andy Battaglia on January 14, 2023, 08:11:59 PM »
IP6 is a very mild supplement. I would suggest one capsule for a child, but more would not harm the child. It can be opened and mixed into food if swallowing a capsule is an issue.
59
Diet, Nutrition and Supplements / IP6 dosage for 5 years old?
« Last post by BobaFett on January 14, 2023, 12:11:58 PM »
Hi,

Found an IP6 supplement but the dosage stated is for adults.

For General Wellness:

The recommended usage is 2 capsules twice a day on an empty stomach.

Each dosage contains:
IP6 - 800mg
Inositol 200mg

Wondering what's the dosage suitable for a 5 years old (16kg)?
60
Thalassemia Minor / Re: Help with my test and symptoms please!
« Last post by Thalminorguy on January 11, 2023, 12:25:41 AM »
Thank you so much Andy! I just ordered B12 and Magnissuim vitamins.
Pages: « 1 2 3 4 5 6 7 8 9 10 »
SMF spam blocked by CleanTalk