Discussion Forums > Thalassemia Major

Update on Lauryn

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Kathy11:

Hello Chrissy,
I am sorry that your  worst fear has been confirmed,now you know that your daughter will need extra medical care and the good thing, is, she is facing a possible cure , it is bitter sweet news
None the less she is an adorable little girl ,given the love and care she deserve she will grow up to be a beautifull young woman.I admire your strength and determination .You and your hubby are not alone you have Pschological  support from this website and by the sound of it we all are praying for our younger member little Lauryn.
 good luck and may god bless you all. :flowers :flowers :flowers :flowers :flowers :flowers

Manal:
Hi chrissy
Welcome Bostonian

You will find a post by Sajid about his wheatgrass projects in the section of ''toward a cure''. It is very helpful and interesting. Also there is a site from where you could buy it and it is www.wheatgrassactive.com
Wheatgrass is said to increase the production of the F Hb in the body with some patients.
I wanted to get it and asked a friend in Australia to get it for me but he found that the tablets has iron
( in small amounts while the spray and syrup does not if i am not mistaken )

Later in my appointment with the doctor, i asked her about it and she said that it is of no use as she researched this matter with a couple of Indian doctors who were invited by her to talk about wheatgrass in one of the conferences. Actually i don't know if it is efficient or not, but that is all the
information i know .

Wish it could be of any help
Loveyou all
Manal

SalD:
Well put Kathy!

Chrissy and Bostonian, wheatgrass is simply a type of grass!

It is thought to increase the time between transfusions in some thal patients by increasing the production of foetal haemoglobin (HbF).  HbF is the haemoglobin that our bodies make before we are born.  After this time, it usually gets 'switched off' and our adult haemoglobin (HbA) takes over.  If you have a change in your adult haemoglobin genes (for example, beta-globin), your body can't produce HbA that works.  So if it is possible to turn the HbF genes back on, this might solve the problem.  As Manal has stated wheatgrass seems to help turn HbF back on a little bit... for more info visit:

http://www.wheatgrassprofessional.info/Letters/letter_july04.htm

Please bear in mind that this research is still in its early days, it won't cure thal but may help a bit! - this seems to vary from person to person.

SalD

Danielle:
Chrissy, I know I have spoken to you already, but I don't believe I've given you a proper WELCOME to the group.  Glad you are here with us.   :hug

The pediatric hematologist that ultimately takes care of Lauryn should most definitely know more about Thalassemia than your current doctor does.  I would take her elsewhere.  Thalassemia is becoming widely known these days, and there are more doctors that are treating this disorder.

I would decide against the formula with iron, as its been known to make matters worse with Thalassemia, no matter the form (minor, intermedia, major).

As for family donating blood, some doctors decide against it for many reasons.  One of them is definitely the reason you stated.  Another reason is that some family members will obviously carry the Thal trait, and they may not carry a sufficient amount of hemoglobin.  Also, if a child is going to receive ongoing transfusions, some doctors do not think it's a good idea for them to come from the same group of people all the time.  My mind is slipping, but I think it has to do with reactions and the child's body becoming sensitive to other's (outside the group) proteins and building antibodies.

I'm not against directed donors, as I've had them myself for many years, but now that I have switched hospitals, my insurance will not pay for it.   :(

I would definitely get some other opinions for Lauryn.  Good luck with everything, and we are always here when you need us.   :hug

namitha:
Hi Chrissy and Bostonian,

I am sorry for the babies, but again with good treatment they should be able to lead a near normal life. It is important to start thal management from the beginning so that an even keel is maintained throughout. Regular checkups with the hematologist should keep them in good health.

Take care of the babies. Good luck babies  :hug

Peace to all.

Namitha

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