Desirox and Kelfer combination

Dear Andy Brother and dear Friends,

                               First of all I want to wish you all a very happy and healthy and progressive New year 2014.

Samyuktha is doing fine.She is 16.8 kgs and 113 cms tall.She is getting regularly transfused once in 4 weeks.

Till last December 25th 2013,Samyu was only on Desirox chelation therapy.500mg and 750 mg on alternate days.There was no commendable reduction in her Ferritin levels.We took her ferritin,creatinine and SGPT values 20 days back.The values were as follows;

Serum Ferritin - 3356 ng/ml.
Creatinine - 0.44 mgs/dl.
SGPT - 35 U/L.

Her Doctor suggested that we go for a combination therapy with Kelfer (1000mg per day).For the past 15 days I am giving Samyu Kelfer 500mg in the morning and 500mg in the evening. She is having Desirox in split dosage in morning and evening(Empty stomach),On her first day with Kelfer ,she passed reddish colored Urine and continued to do so till 2 days back.All these 12 days ,she passed reddish colored Urine with blackish Faeces.I was feeling good for her but since 2 days she is passing normal urine with out coloration.She is active,eating well,playing well and studying very well,But I am quite worried about Nil coloration in her urine since 2 days.Why is it so?Anything to be worried about?

She needs to put on weight.She has a good appetite but poor weight gain.What to do?

Thank you all.

Regards,
Viji (Samyu's Mother)

No need to worry about the colour of waste. This is normal, you can't expect to have a colour all the time. As long as your child is eating well and normal, do not worry about the weight gain. The genes of the parents plays vital role in the height and weight of a child. Keep her active....

Thank you Canadian Family,

                                  I feel relieved now    .Hopefully Samyu's Ferritin should be dropping gradually.
What else do i need to watch out for?

I was told to keep a check on her WBC. How often her WBC should be checked?
Is there anything else that i need to keep in my mind regarding her health?

Any advice from you and our friends in Thalpal will be much appreciated.

Regards,
Viji

You are already looking at the right things such as :

Serum Ferritin - 3356 ng/ml.
Creatinine - 0.44 mgs/dl.
SGPT - 35 U/L.

These are the basic indicators and should be closely watched with Kelfer and Desirox. I would repeat these tests every three months to be sure...

Very Important : Drink plenty of water with this combination.

Viji,

The kelfer dose could still be a bit higher, even 1250 on days when kelfer is used.  I think when you first started the higher dose, you saw free iron being removed. This shows that the higher dose was needed. It may take some time to assess the progress of the chelation routine, so be patient. It is common to not see a downward trend in ferritin levels until the iron in the organs is removed. It is most important to stay fully compliant and as CF said, stay well hydrated.

Dear Samyuktha,

I am impressed. Who told you to keep an eye on the WBC?

I am asking because I had this combination in November and in December my WBC reached 40.000. Of course my doctor says it was due to infection. However, I had no infection symptom - fever or else, and all my clinical tests showed clear.

Did any doctors tell you that?

Dear Lena,

                I owe it to my daughter's Haematologist and also to my Thalpal friends here.
If not for the Doctors and you friends,I will be like a child lost in a dense forest.
I checked Samyu's WBC just before transfusion 5 days back.
WBC - 9000  (after 10 days of Kelfer+Desirox).I am planning to check her WBC next week to be sure that things are fine.

One Question to Andy brother,

Is her Dosage good enough or needs to be revised?
Her weight is 16.8 Kg.

Desirox (alternate days 500mg & 750mg)
Kelfer 1000 mg (morning-500mg +evening -500 mg).

She has been taking Kalonji since 4 years.The doctor has also prescribed Shelcal syrup 5 ml in the morning and 5 ml in the evening.
She is also having Z&D tablet-1 every day with Folvite tablet - 1 per day.

Anything else i need to look out for?

Thank you Friends,

Regards,
Viji