hello evryone this is pleasance

  hiiiiiiiiiiiii
this is pleasance from india i m a mother of achild who is a thal major n she is 4 n a half year old she was diagnosed wth this problem when she aws jst six mnths old now she is regular wth her blood trsnfsion regime.she is vry brave n a lovable gurl.
                since i cldnt decide upon wut was bst 4 her for the chelation therapy as i had heard a lot bout
the side effects of kelfern my husband was not ready for givin her the painful treatment of desferal either n cos of our negligence her ferritin levels have come upto 4,660 n i feel responsible 4 this but now m sure aftr joinin u people such a blunder wouldnt happen again
                  i m sure tht all my queries wld be cleared isnt it?
so nice meetin u all .....................................................thanx

Hi pleasance,

to the family.

Sometimes we have to do things that appear to be very painful because we know that it is for the good of your child. No one wants to see kids in pain but you have to do it to avoid the serious consequences that would follow in not complying to the treatment.

May I ask what made you think that Kelfer "WILL" have side effects without even trying it? There is always a threshold before anything is considered having ill effects. You can always stop or lower the dosage if something is going wrong.

I think you are missing out a great opportunity if you have Kelfer available to you. After all you said you worry about the Desferal needles; and with Kelfer you could avoid them totally if you can keep the S.F levels at bay.

Please feel free to ask any question that you have in mind.

        Hi pleasance and welcome to your family site am wondaring how your doughter SF is more than 4000 you must teach your doughter how to use it . I saw one thalassemia patent with high F in his body he show me the result of lever piobsy the vibroses in his lever real damage it ..so please don't be a scare to give your child the prober drugs .... thank you
 
                                            khalifa
                                     state of kuwait
                              one for all and all for one

First of all, welcome to the family.

Iron chelation is the paramount activity in thalassemia patient. What has lost cannot come back, please start chelation therapy immediately, talk to your doctor and keep the ferritin level checked.

I suggest keep posting on this forum and ask as many question as you want.

Thanks

    Hi and welcome to this family I do hope you find this site very educational and feel free to ask anything and you'll be sure we'll help you as best we can. Hope your daughter could as much as possible comply with the chelating it is very important for it will make your daughter's health better( less complication is what we hope for in thal patients)

Hi Pleasance,

It is of the utmost urgency that you begin to chelate your child, as the ferritin level is far too high and can cause serious developmental problems. Kelfer can have side effects but a sensible approach to beginning on kelfer can eliminate much of the side effects. Starting on a lower dose than recommended can result in avoidance of some of the problems that manifest when a patient starts the new drug. We have in our group, a member from Mumbai who has safely used kelfer for 20 years. Kelfer has saved the lives of many Indian thalassemics and should be investigated as one of the chelation possibilities.

Please ask us every question on your mind.

Hi, Pleasance!  Welcome to the family! 

the procedure of taking desferal may seems to be very painfull but being ignorant to it is even more painfull, i myself i've been ignorant in past for my iron chelation, but what's the result?? Today i'm a diabetic, i've cardiac problems, my spleen was one monster, my liver is enlarged, and one hell more of troubles i've faced! my ferretine was 11k. 4years back

but thanxxx a loads to desferal and kelfer now my ferretine is down to 4600 and still coming down, my diabe is under control without insulin, and most of problems are bowed in front of me!

so start taking iron chelation seriously!

    

 

Wow Gaurav.... well done on bringing down your ferritin that low...

Gaurav, well done on lowering your ferritin...  ....We look forward to hearing that it is below 2000 and then below 1000....Keep up the good work....


Pleasance, Please work with your daughter's hemo to lower her ferritin. 4000+ for a four year old is very high. With L1 avaiability in India, you may not have to use needle on your daughter. and even if you do have to use needle (for desferal), it is much better than having any long term complications of iron overload.

I will admit that it is always easy to tell other people what is the right thing to do. But when it comes to my own daughter, even a slight frown makes me worry....am I hurting her, is she in pain........I am already dreading the day when I have to struggle to make my daughter drink exjade. I hope you all will be there to guide me...

  Yeah! Can understand, i remember when i was young and my dad used to prick me with that needle of desferal, after pricking me he used to have sweat all over his head, all the time he was so worried about me but now when i do it on my own its easier, we can easily bear our own pain but when i watch things from my parents point it seems like just a small needle seems like a bigggg dagger!!
parents are parents nothing in world can take their place, they've done so much for us that we cant return the favour even if we had 1000000000000000000000000000000000000's of lives.

To, hope.

thanxxx, even i'm waiting to see my ferretine in 3digit figure!!

I'll surely tell you all if i'll get my target archived!!!!