Discussion Forums > Thalassemia Major
Update on Lil A
Sharmin:
Hello friends,
I have a few updates on Lil A. In the fall his antibodies re-emerged and his transfusion requirement began to increase to every 2 weeks. At that time we attempted a homeopathic treatment and we found that after a few weeks on the treatment his transfusion requirement reduced to once every 5 weeks. At the same time, during a vacation he got an infection in his stomach so we stopped the homeopathic medication and all supplements for a while. After a few months his hemoglobin began dropping and his transfusion requirement once again became every 2 weeks. The doctor put him on a large dose of prednisone - causing the same side effects including irritability, facial swelling etc. but his transfusion requirement remained every two weeks. In May we decided to try the homeopathic again - within weeks his transfusion requirement dropped to every 3 weeks - and this time when we went in for a blood test at 3 weeks his hemoglobin was still 109 - therefore he can now be at 4 weeks.
The homeopathic medication is changed slightly every two weeks - the dose and type of medication is varied in order to remain effective. We think that he is responding to it. His prednisone has since been reduced to 1/4 of what it was - to be honest I don't think the prednisone is having any effect as the homeopathic meds worked even when he had no prednisone last fall. I was a little reluctant to put him on these meds - but they are so effective and far less risky than steriods.
He has been on exjade alone since August - and his last ferritin was 452. We may give his stomach a rest by reducing the exjade further for a little while - as he often complains of stomach ache. We then hope to reduce his iron levels further.
Thank you all for your ongoing support and let me know if you have any questions - and if our experience can help you in any way.
Best,
Sharmin
Manal:
Sharmin
What kind of homeopathic treatment you were using?? Did Oakland had any comment on your findings??
I am so happy to know that the ferritn has dropped to less than 500
You are doing an excellent job :wink
Manal
Zaini:
Sharmin,
Its great to hear that homeopathy worked for Lil A,and you are right its less risky then steroids,i was wondering do you know any kids who may have tried this homeopathic meds just to increase transfusion interval,even if they don't have antibody issues? May be it can help in increasing transfusion interval anyway.
Good luck with everything :hugfriend .
Zaini.
zahra:
Hi Sharmin,
I am so glad that the homeopathic medicine is helping increase little A's transfusion interval. That is really great news.
Zahra
Sharmin:
Thank you Manal, Zaini and Zahra,
It means everything to have your support. I have been thinking the same thing, that the homeopathic medication may provide protection for red blood cells and therefore it may help all of you. That was my reason for posting this information.
The homeopathic doctor who is seeing Lil A comes from a family that has been working in this field for generations. His father is the best known homeopathic doctor in the area of India my dad comes from. Lil A's doctor consulted with his father to begin making Lil A's medications. He changes the medication every 2 weeks - but I will try to get as much information as I can to post it here. I plan to sit down with him to talk about it.
In the past we have tried chronic steroids, ritixumab, IVIG etc to deal with these antibodies - so far the only thing that has worked is this homeopathic medication. Thankfully, we are now off of the ritux and IVIG completely. He is on a small dose of prednisone for the time being.
I will post more soon,
Love,
Sharmin :hugfriend :hugfriend
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