Discussion Forums > Thalassemia Major

Advantages of using a filter during transfusion

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mrtariqkhan:
Hi!
 
    Just wanted to ask another thing from zaini. What did you give to your daughter to eat when she was around 1 and half year old. I mean i know what to give and what not to give. but didn't she gave you any trouble while eating, my daughter just doesn't take plain youghart or plain cheese but we give it maybe with a little rice she will take it but that's the only thing that she eats otherwise she will be eating only some potato Chips (btw can we give thal patients Chips???)..

   So please advice what did you do with your daughter in order to eat you know with interest????

Zaini:
Hi ,

Thanx for your compliments Mr Tariq khan,what else a mother can do? other then supporting her kids,so coming to your question, to tell you the truth, my daughter was diagnosed at the age of three,she basically is an intermedia,a wrongly diagnosed thal intermedia to be precise,untill then there were no problems, she never needed a transfusion till the age of three,but then when she was 2 years and 9 months old she started looking pale, we went to her physician,he asked for a hb test,and it was 6gm,then we visited a heamotologist and after doing hb electrophoresis, she said our daughter was a thal major,( i think idea of a DNA test never crossed her mind) it was like a disaster for us ofcourse,and what i was unable to understand was that if she is a thal major ,how come she didn't need any transfusion in last three years,but the answer to my question by doctor was "aisa ho sakta hay "meaning it's nothing unusual" ,,i never accepted that answer, i always knew at my heart that there is something gone wrong in her diagnosis,bcoz it's a general knowledge and i knew that thal majors start transfusing in very early months of there lives, nobody ever told me about any such thing existing as thal intermedia,i came to know about that about one and a half year ago,but it was far too late,after two years of consecutive transfusing,she is now a transfusion dependent child, though a doctor here told me to go for hydrea,and stop transfusing, but i am really afraid now,bcoz as far as her health is concerned she is doing great Alhumdulillah,she has an ideal weight and height for her age Mashallah,and i want to keep it that way.

Coming to your question about your daughter's diet,it's a fact that most of the time kids give tough times to their parents in eating habits,it's necessary to know what they like,there is no harm in giving potato chips to thals :) but if taken too much they can cause indigestion ,excess of everything is bad,try some porridge,khichree,some sweet dishes like custard,egg pudding,even a little bit of jelly if she likes it,give her some yakhni (chiken soup),and try to take her out at some time of the day, let her play in fresh air,( i think weather is not that hot like khi in islamabad),it will do wonders,and some children naturally have a  small appetite,like if a normal kid will have his/her meals in 3 times a day,they'll take it in 4 to 5 times a day,try some noodles also,knorr noodles with any flavour she likes,as far as iron intake is concerned,red meat is the biggest source of iron, avoid it,try some scrambled eggs as the protien source, plus chicken and fish, she likes chips,ask your wife to fry fish fingers,with french fries,sometimes, kids need a lil bit of distraction,try some cartoon watching or musical  toys etc.i know your wife may have tried everything,as she is a mother,and mothers are always conscious about their kid's eating habits,still i hope my long boring reply will help.:).

As far as your wife is concerned,ask her to visit this forum regularly, it will help her a lot in facing everything,and if she needs any sisterly advice or support she can obviously PM me,or even call me.

Lots of love fore your daughter,

ZAINI.

P.S What are your daughter's ferritin levels,have you ever got them checked?

Manal:
Hello :welcome :urwelcome

Welcome to the site. I am sure you will find here all the answers to your questions and all the support you will need

Take care

Manal

§ãJ¡Ð ساجد:
Hello Mr. Tariq,

I came back few hours ago and I did meet your wife with your beautiful daughter.

I know her first experience wouldn't have been a great one as your daughter's veins are so small and her blood was going very slow. Apart from that today there were too many patients and your wife and I had to sit throughout our TransX on the attendants' sofa. This shows the magnitude of the disease here in Pakistan. I was surprised they actually registered you as we had decided in our meeting that we won't register new patients until we get expanded to the lower building.

Anyway, it was good to know that it was your daughter besides me; but frankly speaking I didn't knew it until I came back home and my mom said (as she had been chatting with your wife) that the lady besides me had found JSF via Internet. I was like :doh "That must have been Mrs. Tariq and her daughter!"

As far as your question goes about the diet goes, well I'm developing the official website for JSF and on it you will find a chart for diet. I will approve it from Dr. Shazia and she will distribute it among all patients. You can access it online as well, but the site is still under construction. I can send you the list via email but I'd recommend that you wait till it gets approved by the doctor and she further refines it.

Take care, Peace!

§ãJ¡Ð ساجد:
Hi,

Just wanted to tell you that I have already added a Google Earth Place mark file yesterday in the "Treatment Center" section for locating JSF, it would have made it easier for you to locate JSF if you had downloaded that file yesterday, but I guess that you already have found it on your own.

Take care, Peace!

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