Discussion Forums > Thalassemia Major

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Andy Battaglia:
No. Alpha globin is needed to combine with gamma globin to produce fetal hemoglobin, and alpha thals have a reduced alpha globin production, so there is nothing for the gamma globin to combine with to produce fetal Hb.

JV:
Hi Andy, after a recent trip to CHOP for my daughter my wife brought up Wheat Grass juice to the nurses and doctors there. All were very mum on the issue and stated that they didnt know much about it. When given the nutritional values and effects from it they said not to give it to her (she is 16 months) because they were nervous about the iron and also said it wasnt FDA approved. I of course when hearing of this became angry due to the fact it can only help, not hurt her and only added to my pervious notions of doctors in general.

She is continuing to go every 3 weeks, last 4 counts have been...10.3, 10.2, 10.2, 9.7. Her weight is around 20.5 pounds, which should probably be higher but she is a fusses eater!  Any opinions on her progress and what to expect as she reaches 2 years old?

Andy Battaglia:
Hi James,

I find it pointless to talk to most doctors (Dr Marwaha in India being a noted exception) about wheatgrass or most natural methods in general. It's not what they're taught, so they seldom have any insight on the subject. I find it silly to talk about FDA approved for a simple food product like wheatgrass. It's nothing more than juiced sprouted wheat grain. Doctors will prescribe all sorts of drugs that are loaded with side effects, but approved by the FDA, yet they balk at taking food as a supplement. I have found wheatgrass beneficial in general. I take the extract since wheatgrass juice does not have a pleasant taste. For thals, there is some iron in the juice and less in the tablets, but none in the extract. I find it improves my energy level and helps my immune system. I also use a wheatgrass cream on eczema around my lips in cold dry weather, and it is the only thing that actually helps heal the area. I've gone long periods not using the extract and then when I start again I ask myself why I ever quit. I don't think it will raise Hb in most patients, but it does have positive value.

One thing you'll be dealing with soon is chelation. Have you made any decision and which route to take, desferal or Exjade? Exjade can make kids even pickier eaters but there are ways to lessen the effects on the stomach, but Exjade doesn't require needles so it's a popular choice. Getting kids that age to eat can be tricky and with thal you want to try to follow a fairly nutritious diet Try a variety of foods and try to find things she'll eat on a regular basis. Maintaining the Hb also has a positive effect on appetite and increases energy levels. I'd be tempted to say try letting her go another week between transfusions, but not at this age because it could affect her growth rate. Is she taking any vitamins or other supplements?

JV:
Hi Andy,

Thanks again for the input. Im done arguing with Doctors..they seem to get upset when you ask questions and tend to prey on the mothers emotions....just my opinion based on my experiences. Quick story...after questioning the head nurse of a particular hospital about the need to visit their doctor every 3 months for a checkup her response was "well..the doctors have to get paid too". Thats all I needed to here.

As far as chelation...the least evasive way is what my wife and I agreed upon. No more needles!! Im glad Exjade was approved recently and I am interested in seeing the benefits and disadvantages as it becomes more widely used. Our concern is if our daughter will even drink it...she doesnt like juice or milk and only drinks water. Her favorite food seems to be oatmeal and rice...not a typical Italian, lol.

I think my wife and I are going to wait till 2 years of age to start the Wheatgrass...thats if my wife and I agree on it. She already takes a liquid multi-vitamin and also a folic acid tablet in the morning mixed in her food.

When we started the transfusions we went every 4 weeks and then after about 5 or so the doctors changed it to every 3 weeks..I understand the growing issue but so many transfusions make me nervous. In the coming months I will be discussing this issue with the doctors.

JV:
Sorry meant Ferriprox approval

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