Thalassemia Patients and Friends
Discussion Forums => Thalassemia Intermedia => Topic started by: asma on February 02, 2016, 09:52:02 AM
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Hi everyone
My daughter alyshah is a thalassemia intermedia taking hydroxyurea 6 ml (her weight 20 kg). She has an average hb of 7.5 with hydrea but of course it dips whenever she gets sick. Recently she has been getting a lot of cough and congestion infections. Someone suggested i should give her manuka honey to help her fight infections.
Has anyone used it with hydrea. Does it have an negative effects on blood count.
Andy do you have any knowledge about this kind of honey ?
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If you are from India you may try chyawan prash. It is a herbal preparation of 45 ingredients which Helps to boost immunity power against cough and cold.
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Thanks abyaya but i am from Pakistan. I am sure though that i can find chawan prash from a spice shop. They do import stuff like that.
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My daughter alyshah is a thalassemia intermedia taking hydroxyurea 6 ml (her weight 20 kg). She has an average hb of 7.5 with hydrea ....
Average Hb of 7.5 is not enough by any standard, your child growth and well being may get severely impacted at this level. Your target should be hb of 10 at minimum.
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Manuka honey is quite safe and contains many trace nutrients. Is the child taking wheatgrass?
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I agree with Canadian Family.
As Andy asked about Wheat grass because it is must for Intermediate. Even when ur daughter is on hydrea it becomes a must must.
For boosting immunity Vit D & Vit C both are necessary. Coconut water can also boosts. It is tried and tested by me
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Manuka honey is a bit costly.
In general, all kind of honey is good for every person including thalassaemics.
using honey with lemon water gives fantastic results.
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My opinion, more useful than every honeys is "gelee Royale". Since it is the food of the queen bee.
And also propolis, for Germany I can say it's cheaper than the most good honey.
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Thanks everyone for your replies and concerns. Actually her hb average was in 8 range. Her doctor is right now trying to adjust her dose of HU. He increased it a bit 3 months back and now thinks it needs to be reduced again. And she keep getting infections from school so her hb keeps falling. I did give her wheatgrass a long time back but i think she got diarrhea with it. Her weight is 20 kg and she is 5 yrs old. Her HU dose is 6 ml.
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Recent experience with Manuka honey with my B-major child has shown great effect on his Hb count. Omar used to take transfusions every two weeks, using a UMF 15+ Manuka Honey he now transfuses every three weeks.
I believe Manuka excels mostly because of two main attributes:
1- It has a high anti-bacterial activity
2-It is not micro-filtered or pasteurized (raw)
If someone would like the nutritional values alone and has no need for the immune-boosting properties, then other raw honeys are available at a fraction of the cost.
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I agree with Canadian Family.
As Andy asked about Wheat grass because it is must for Intermediate. Even when ur daughter is on hydrea it becomes a must must.
For boosting immunity Vit D & Vit C both are necessary. Coconut water can also boosts. It is tried and tested by me
It is a must for intermediate? Why is that?
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Wheatgrass has been shown to boost Hb in many thals, especially when folate is also used. If a patient is taking hydroxyurea, it is essential that both wheatgrass and folate are also used, as they complement the effects of the drug.
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Wheatgrass has been shown to boost Hb in many thals, especially when folate is also used. If a patient is taking hydroxyurea, it is essential that both wheatgrass and folate are also used, as they complement the effects of the drug.
What about if the patient is not taking hydroxyurea?
p.s. Can you point me to any research or studies that show hb increases with wheatgrass as I wouldn't mind trying it too.
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Wheatgrass was shown to increase Hb by itself in many patients in a study run by Dr Marwaha in 2003. You can see the study at http://www.academia.edu/28148091/Wheat_grass_juice_reduces_transfusion_requirement_in_patients_with_thalassemia_major_a_pilot_study
I was lucky enough to meet Dr Marwaha at the Singapore conference in 2008. He was a wonderful doctor, whose patients were well cared for.
In spite of the fact that patients had to grow their own wheatgrass and many could not manage it successfully, the results were good. Many patients use it. It is complementary, so taking folate, also is advised. Wheatgrass is also a powerful antioxidant and beneficial for the immune system. My own anecdotal experience was that wheatgrass juice helped me after a great blood loss after two surgeries. My wife also used it during chemotherapy, and managed to keep her Hb above 11 at all times, in spite of the fact that chemo killed her bone marrow. I suggest using organic powder or tablets, as the fresh juice is not easy for most people to drink.
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Hello Andy; I'm so sorry about your wife mate, I hope she's better now?
you also mention two surgeries where you lost lots of blood, sorry to hear that mate. What were the operations for?
p.s. I found this in Holland and Barret and wanted your expert advice on if it was any good or just overpriced for what it is: http://www.hollandandbarrett.com/shop/product/naturya-organic-wheatgrass-powder-60094362?skuid=094362
Thanks buddy.
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It looks like the price is about average for the wheatgrass powder.
My wife is doing well, but vigilant. We got some good news recently and learned that her melanoma is the type more unlikely to spread to other parts of the body.
I had a burst appendix and the first surgery was botched, resulting in an abscess where the appendix had been. After the second surgery, I was not checked for 12 hours and when the dressing was finally changed, it was soaked in blood. I had been bleeding for 12 hours. My Hb dropped to about 8.
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Well the good news is as you say is it's the type that's less likely to spread. My best wishes in any case mate.
The first surgery was botched? How did they manage that? Which country were you in at the time of the operation? I'm also sorry to hear the outcome of the second operation, again which country were you in at the time of the second operation? What does your hb normally run at?
I wish my hb was 8, recently I've been running at around 5.5 - 5.7 and use to run at 7.5 - 7.8. I'm really hoping stopping these last two medications (allopurinol and Keppra) will help increase the haemoglobin back to normal as haematologist told me if I we get to 5hb were going to have to take action with hydroxyurea to try and get it up again until we can try the new drug in Autumn :(
p.s. On the wheatgrass situation, is the one I sent (http://www.hollandandbarrett.com/shop/product/naturya-organic-wheatgrass-powder-60094362?skuid=094362) a good branded one or should I be looking for something more specific or of a certain brand? If so can you send me a link to it.
Thanks a million buddy.
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That brand of wheatgrass is good.
My surgery was in the US, but I had a hotshot surgeon who thought he could do things blindfolded. He eventually lost his license after sewing a woman's uterus to her intestines.