Need your suggestions on below:
1) Is there a real requirement of transfusion when HB count is 5.4 ? The count drops from 6 to 5.4 when she has infections.I understand the risks of transfusion.
Transfusion is normally begun after there are two consecutive Hb readings below 7. However, some who have HbE beta thal manage with lower Hb levels than 7, so factors such as skeletal changes, ability to manage at low Hb, growth and development and overall health play a role in whether or not transfusion should begin. Below 6 is not acceptable under any situation and transfusion should take place.
2) What should be the food provided to a 1 year baby of Double heterozygous HB E thalessemia ? Now she is taking folic acid as prescribed. I read in this forum that beet is good, so I will be giving her that.
Review the information in our Diet, Nutrition and Supplements board. In general, a healthy diet including plenty of fresh fruit and vegetables and complete avoidance of empty calories and junk food should be followed. The thread "Nutritional Advice for Thal Major and Intermedia" gives a list of supplements that can be taken. For a young child, take no more than 1/4 dose of the lowest advised amount.
3) will a bit of exercise improve the health? Will this not consume more of the oxygen supporting things in body?
Exercise is very important to thals and should begin at an early age. Patients must pace themselves and learn their limits, but exercise is very important for optimizing the oxygen supply and for ensuring oxygen reaches the extremities. Not exercising will do harm to a patient.
4) How does the doctors read the iron level , mch or mcv?
Is there any food habit or natural technique to decrease the iron deposits?
These levels are all taken from a CBC (complete blood count). Iron is monitored by serum ferritin count, but as she gets older she should undergo annual liver and heart scans to accurately assess the iron load. MCV and MCH refer to the average size of red blood cells and this is lower in thals because the smaller RBC's are included in the average.
Again, refer to the above mentioned board for advice on diet. Many supplements like wheatgrass and IP6 can supplement, but not replace iron chelation. A chelation drug must be used once the child has had 10-20 transfusions.
5) At times she gets fever and cold and leads to urine infections. This decrease the HB count. Any way to maintain the immunity?
If she lives with a low Hb and doesn't transfuse, her immune system will be lower. Even when transfusing, the immune system will be weaker than normal. Getting proper nutrition, especially vitamin C (in low amounts) and vitamin D can help the immune system. A child getting urinary infections should also increase hydration. Water and tea can be consumed. Avoid soda pop.