Update on Lil A

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

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

Manal

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  .

Zaini.

Hi Sharmin,
I am so glad that the homeopathic medicine is helping increase little A's transfusion interval. That is really great news.
Zahra

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   

I also wanted to mention that this doctor feels that over time he may be able to reduce Lil A's transfusion requirement even further.  I hope that is the case.  My hope and prayers are that Lil A continues to have at least 4 week intervals between transfusions.  He'll be off of the homeopathic meds while he is away at camp for the next few days. 

Three people that we know have been completely taken off of diabetes medications with homeopathic medication.  My dad's sister has had diabetes for years and even with medication she used to become very sick due to her diabetes.  Currently, she is off of her diabetes meds and has had normal levels for a years using on the homeopathic meds.  Doctors are baffled but agree that she does not require meds anymore. 

Sharmin,

That would be so helpful,Homeopathy is so common here too,but we tried it initially when Z was diagnosed but i didn't see any results,so we stopped it,if your doctor can provide names,i'll be able to run them here with any homeopathic doctor.

Take care,

Zaini.

Sounds good Zaini.  I will post the names soon:) 

Dear Sharmin
If you can give us the name of your Doc's ffather in India , then may be we we will consult him .

Hello Sharmin,
I happy to hear little A's ferritin level! Mine did also drop to 400 but then I stopped with Exjade for a few weeks.
I am glad there is improvement between his transfusion intervals. I wait for you add. information.

Hi sharmin ,
its nice to read/hear that all... its very nice to know that lil-A's Fe is now within/close to normal range ... and abt homeopathic thing , that s amazing .. wishing and praying for his best health n future ...

best regards
take care
Umair

ANI - I believe he is located in Punjab - the MOGA area.  His name is Dr. Brar.  I will ask my dad for more details.  Good luck:)

Dore and Umair, thank you for your wishes.  I am also glad that Lil A's iron levels and hg intervals are improving.  I hope you both are doing very very well  

Sharmin

Wow Sharmin....
I am so glad for Lil A!
Homeopathy is undermined I think....I am glad that it is helping so many people you know and it would indeed be nice if all at the forum can benefit too...
Congratulations once again,I am so happy for you!(Sorry for the delay in checking this post!)
Love always,
Madhavi

Thanks Madhavi 

 Hi sharmin, I've been thinking of u for some time now and I'm so happy to hear about little A. I saw your post a bit ago and called but I know u have been busy.  give little A a big hug from us! Please call me when u have a chance so we can catch up.