Question for Andy...

i login every mornin to tis site in hope of getting replies but when i dont ...........i am upset .........nyways thts me always in hope !!!!!!!!!!!!!!!

Hi Manit,

Where are they inserting the needle,my daughter used to transfuse through a vein that was on back of her palm first,but then it was getting difficult with time,so they changed the position to the inner side of her elbow,may be you can change the positions on the same hand and see if it works?

Zaini.

the sister use to transfuse through a vein that was on back of her palm first,but then it was getting difficult with time,so they changed the position to the inner side of her elbow but now either ways it does'nt work...tried on the same hand .......so was getting upset and the main reason is tht when i wrote a mail about this to my haemat even he doesnt have an answer nor any suggestion or atleast he should lemme know the cause for it i even asked if i could come for a check up but he jst said tht no chnge it to right hand .........this is not the answer u expect from a doc ...........................

Hi Pleasance
I feel its better to rest her left hand for a while and use her right hand for transfusions. Also is Manit taking any kind of vitamin E . Vit E does have anti coagulant properties and probably help with the clots if there are any. Why does Manit have to transfuse every two weeks? Vit E also helps to lengthen the life of the RBC, so if not anything else it will at least help in increasing the transfusion interval. What is Manit's weight and how much blood does she receive every two weeks?

maha

Hi Maha, kgs
          Thanx  for replying ..........its such a relief........she is 7 yr old and her weight is 19kgs she doesnt take any vit e pls suggest something as she is very stubborn and doesnt even have any fruits or veggies pls suggest something she gets 1 bottle twice in a mnth that is wat even i was hesitant as children of her age get it done once a mnth the quantity wld be 350ml

She actually gets 350ml every 2 weeks? This is by far a huge volume. For her weight of 19 kgs she should be getting 285ml - 300ml every four weeks. Pleasance no doctor suggested me vitamin E or L-carnitine or vitamin D or calcium. I learned all this from the other members here and of course Andy.What supplements do you give her? You should start her on vit e. My son is 4 years old and has been taking 100 IU of natural vitamin E for almost two years now. You could start Manit on 200 IU of natural vit E (d-alpha). Do not use any synthetic brand. Also start her on L-carnitine. If her transfusion intervals can be increased while maintaining a good hb, her hands will also will get pricked less often.

take care
maha

hi maha
        like u said that u give so many essential vit and calcium and other things like  IP-6 and ginseng honey dailyand B- vitamin daily so can u name all these medicines so that i can buy from a regular medical shop........as i am totally unaware of the same ..........thanx so mch for replying pls lemme know thw doses of these medicines and the names and the time when u give the meds

I get the vit E and L-carnitine from GNC stores. You should find this in India also. I get ginseng honey from a supermarket here and I order IP-6 online. Both osteocare and a Iron free multivitamin is also available in India.

My son starts his day with asunra. Half hour later he gets his breakfast. I pop in the vitamin E softgel and folic acid in between. He loves to chew it. I give him his L-carnitine soon after breakfast. He comes from school at 1 pm and I give him IP-6 then. Since IP-6 is a capsule I open it and mix it in a little juice as he is still young to swallow a capsule. Half an hour later he takes his lunch. Between 5pm- 6pm ie after he gets up from his nap I give him his second dose of Asunra and half hour later another dose of L-carnitine. I mix the ginseng honey in his milk after dinner. I give him the osteocare and mixavit just before bedtime.

maha

can u name the vit e capsule and may i know the cost of ip-6 as i gues its a hb inducer and how does ginseng honey  help....pls letme know
     any ways thnx to give ur time and u mailed me thnk u so mch and may i also know wat is the actual role of L- cartinine






thanx
Maha

Hi Manit,

IP6 is not hb inducer,its an anti oxidant which also chelates a little bit of iron from the body,you can find it online at www.puritan.com .

Zaini.

Hi Pleasance,
I get the vitamin E softgel from GNC. It's sold as Natural E 100. Like Zaini said IP-6 is not a hb inducer it simply aids chelation. I give him ginseng honey to increase his immunity, so as he doesn't fall sick as often as he used to do. Just search for L-carnitine. Manal has explained its benefits many times in various threads.

maha

Hi Maha i went to the medical store and he gave me vit E capsul;es called Evion-400 wherein each cap contains tocopheryl acetate ip......400mg so shall i start wth that  and i ve got ostocalcium b12 syrup wth vit d and b12....so shall i start wth that and they dont have L carnitine ....when i asked for it they gave me levocarnitine......i was confused so i didnt take that...pls suggest

Levocarnitine is L-carnitine. Same thing.

I don`t know if Evion is synthetic or natural, Zaini would be able to tell you as I remember her mentioning Evion sometime. In any case 400mg would be almost 600 IU, thats probably too much for a 7 year old.

maha

The Evion available here is synthetic,not natural.