can someone help me out?

I'm jumping in a bit confused here sharmin:
First of all great news about you son! I know the feeling of having some good news under such circumstances

Sophia also has hemolytic anemia on top of thalassemia -it surfaced after 6months of  transfusions.
However the treatment selected has been different.

After spending about a month of being transfused every 3 to 6 days (her Hb was falling THAT rapidly)
-during which time the labs tried unsuccesfuly to identify  the specific caused that brought on the onset-
Sophia was placed on cortisone therapy in order to supress her immune responce.

After about another month this had results.

8 months later and after gradual reduction she is still on a very small dosage on a daily base. (about 1mg a day. smaller doses provoke an immune system reaction) and is transfused every 14-16 days now.

I have to say I have strong mixed feelings about cortisone.

WHile the type of cortisone (prednisolone family) is similar to the one used in relatively stable long term usages (e.g. asthma sufferers) having our 2 1/2 year old daughter on chronic cortisone is so unsettling to us that I'll can tell you it's probably forcing our hand in working towards a BMT solution.

In your case you seemed to be able to avoid the cortisone. How did you do so?

I'm probably missing something glaringly obvious here and I'd be glad if anyone pointed it out.

Thanks and God Bless.

DUh!
As Bart (Simpson) said.

Just found the obvious myself....

I only now realised that you wrote in your initial post that your son is on prednisone which I assume is alsmot identical to our daugter's medication
Cortisone more or less equals prednisone

Looks like we are on the same boat and have the same concerns about if this is chronic...

God Bless

:-)

Hi InGreece,

Yes, my son is on prednisone - he began prednisone at 8 years of age.  The antibody was first detected when he was 7 1/2 years - he was requiring transfusion every two weeks - and his hemoglobin was dropping more each time.  The lab identified a warm autoantibody.  He was started on a high dose of prednisone 40mg a day for 4 days - and then slowly maintained at 10mg alternate days.   I am also uncomfortable with having him on a steroid on a regular basis - on top having thalassemia and being on desferal.   

I am not thinking about BMT at this time because transplant should not be taken lightly, especially with a child like mine who is doing very well on the whole, so far.  And he shows heightened immune response - with various antibodies both allogenic and auto - it suggests to me that he would be more likely to have issues with BMT.  I am hoping that one of the technologies being investigated - although they may be far away for now - will be the solution for us.  In the meantime I am trying to do everything I can to give him the best care.  I think that our children are doing well despite thalassemia and antibodies - as they are being well managed.   

Best of luck to your little girl.  I hope that the antibody burns itself out and you have a lot less to worry about:) 

Shamin

I started my son on 1mg of folic acid, 100 IU of vitamin E as well as calcium magnesium this week. 
I will wait a few weeks before starting the wheat grass extract, as it may be too many changes at once. 
I am hoping this will help with his growing pains too. 

He is complaining of tummy aches - could this be his stomach getting used to all of the supplements? 

Sharmin

Zainab also complains of tummy ache often,and i,ve noticed that these complains have increased after last transfusion as compared to before transfusion,Don't know what's the reason though  .

ZAINI.

Yes, the tummy symptom is a difficult one to figure out. 

My son has been complaining about headache and dizziness for over a week, as well as tummy ache.  His hg has fallen to 83 in 2 1/2 weeks - suggesting that the antibody is acting up again.

Andy, I will talk to his doctor tomorrow regarding the slow rate transfusion - every two weeks.  Anything to make things better.  I fall apart whenever he is not feeling well - i don't know where to draw strength from right now.  I am so afraid of his hg falling so rapidly and these awful symptoms he is having.  He says that his ears feel partially blocked too.  There is no evidence of cold or flu, i don't know what is going on.  It's been a very difficult day for us. 

Hi Sharmin,

The symptoms may be related to the autoantibody activity. Talk to the doctor and explain the symptoms your son is having. I won't be surprised if the doctor decides to temporarily raise the prednisone dose. I understand your concerns about prednisone, and shared the same when my son was afflicted with severe asthma when he was young, but now I see a 15 year old kid playing varsity baseball in high school, who wouldn't be alive today without prednisone. My perspective changed from dreading prednisone to thanking God that it was there for him. I do hope prednisone won't be a long term treatment.

It's never easy being parents. 

Sharmin, i really know how you feel, i will keep praying for you and your son and i am sure everything will be just fine. Good luck at your visit and please keep us updated
 
 Manal

Same here Sharmin,

it's 11 P.M here,and Zainab just came to me complaining of tummy ache,she was asleep at 10 P.M,i don't know what kind of stomach ache is this and what should i do about it ?? 

Another thing,Zainab is also complaining of pain in her ankles since last couple of days,i don't get it when she says "Mama i hear a click and then it starts paining"what could that be?

Could that be realated to desferal anyway?or ferriprox?or calcium? although she is taking calcium and vitamin D daily.

I feel so helpless!!

ZAINI.

Sharmin, Zaini,

I pray Almighty God that your angels feel well soon.

Thanks Sajid 

ZAINI.

Zaini, i am sorry to hear this, but what is your plan , are you going to the hema or what?? Since you transfuse the washed blood why is this happeneing? Please update us and give her a big hug for me

Manal

Manal, Sajid, Andy and Zaini,

I cannot thank you enough for your support. 

Zaini, I hope your little one feels better very soon.  It is so hard to watch your children suffer.

Andy,

The doctor did increase the prednisone dose - he wants to hit him hard with it for a while - 7 days of 40mg and then taper it down slowly.  He also agree to give him smaller transfusions at a slow rate more frequently (every 2 weeks).  His random blood glucose level was also normal. 

The doctor said that he could not see anything wrong with him and told me that he is a very healthy little boy, despite his thalassemia. 

My son however continues to complain about dizziness, aches and pains (which the doctor said were growing pains and very common and normal), yesterday he said that he felt that he would faint.  He woke up this morning saying that he was too shaky to walk or go to school.   I am overwhelmed and don't know what to do -  I am so afraid. 

Hi Sharmin,

The symptoms your son is experiencing are very possibly related to the autoantibody.

http://www.labtestsonline.org/understanding/analytes/autoantibodies/glance.html

symptoms they cause are relatively common and may include: arthritis-type joint pain, fatigue, fever, rashes, cold or allergy-type symptoms, weight loss, and muscular weakness. Additional complications may include vasculitis (inflammation of blood vessels) and anemia. Signs and symptoms will vary from person to person. They can vary over time and/or with organ involvement, often tapering off and then flaring up unexpectedly.

If these symptoms are related to the autoantibody, the increased prednisone dose should have some effect on alleviating them. Please take some confidence from the doctor telling you he sees a healthy little boy. I would compare the symptoms to those of pollen allergies, where even though a person may be miserable from the effects of the allergy, and seem very ill, it is actually a temporary condition that does not really threaten the health.

Being a parent, I know how hard it is to be patient and am going through an uncertain period myself at the moment, as we await a second blood test for my daughter who has an unexplained rise in white cells accompanied by constant fatigue. It could be just a combination of a recent bad cold along with her tough schedule of university and work, but it also could indicate something far more serious. Because of the cold, it makes no sense to test again until it has been out of her system for a bit, but waiting for an answer is difficult, to say the least.

But Sharmin didn't doctor tell the reason for his dizziness?that's odd,what can be the reason,how's the weather there? is he taking enough water,may be he is not hydrated enough.Can't you start wheat grass juice right now? may be it will help him regain his energy.I hope everything will be back to normal soon .

Thanx Manal,

No i am not planning to go to her hemo,coz she is so arrogant that she'll take no notice,instead i have started to give her herbal water (a strong form of gripe water,if u,ve heard of gripe water),and she has stopped complaining,till now,may be it was only gastric  

ZAINI.