christian started exjade

yes the good news is christian turned 6 and has started exjade.  for the first 2 weeks he started on a low dose of 250mg and now in the third week is on 2x250 mg tablets hence 500 mg. 

since the dose went up he is gagging and find it hard to drink.  tonight he vomitted which i know is common.

questions:

does it matter how much juice i dilute it with?  does it affect the strength of the medicine?

how much juice or water do most people dilute it with?

how do parents find their children taking exjade?  easily?  or is it just christian who just wont stop gagging and is beginning to feel diheartened about the magic tablet.

i have given it with apple juice and orange juice but he still gags.  i had a taste for myself and i can see that it leaves a strange after taste that makes you feel a bit gaggy if you know what i mean.

parents with children taking exjade, when is the best time to give it?  he goes to school now, so the hours are not that flexible.

thanks again
vic

Great news

Hmm...

The texture of the medicine does seem to be an issue among the young kids. I wonder why it has to be taken this way? After all when everything we eat goes in; all liquids and solids get crushed together by the stomach.

Try to crush the dose to a very fine powder and mix it in the juice so that there is less amount of solid residue to tackle.

Best of luck with exjade Vic.

Sharmin

My daughter is taking 325mg diluted in quarter glass of apple juice. She is taking it first thing in the morning in empty stomach. We just found it easier that way but remember each child is different. We prepare the dose 15 minutes earlier than her wake up time such that the tablet dissolve completely in apple juice.

She is having difficulty drinking for the first few days but now she takes small sips and finishes off in 30 minutes or so. I say give your son sometime to adjust and have him take small sips. Also, try giving it in empty stomach.

Thanks.

I also want to add a reminder for Exjade users to never use metal utensils to stir the mixture and no metal containers. Exjade will chelate the iron out of metal utensils.

hi vic
dont give exjade to ur child with APPLE. i think it will b best that u give exjade to ur chhild with some citrus juice as i think..... i remember that some years ago  Dr told me to stop eating  aPPle and pomegranate and some vegetables bcoze of iron they says these fruits has the large amount of iron.....and it will the best way that u ask to ur Dr abt it ..... but i think the apple isn't the right choice ...................................................

Hi Umair,

I know you are concerned about the Iron, but fruits and vegetables have very little amount of Iron in them compared to red meat and ofcourse the Iron that you get from blood transfusions.

You'll have to eat Kilos of apples and that will not get even close to a fraction of Iron that you receive via blood transfusion.

So a glass of apple juice is no harm at all.

You can find the Iron content in food in one of the links that had been posted some time ago. I'll search for it and post it here again; if I can find it

Edit: Had mistyped "blood" instead of "Iron"

Hi sajid
thanx for this realy important information ( it is important  i stoped eating apple and pomegranate since i was 12 years old ) now i m happy to say that i will eat pomegrante in this season ...wow it will b a good & new experiance for me thanx buddy ......

Here's the link that I was talking about:

http://www.nal.usda.gov/fnic/foodcomp/search/

thanks guys,
canadian family, i am findingit takes him about 40 minutes to get through it, but we are struggling to get him to drink it.  i never thought i'd say it but we got into a routine with the needle and now we are struggling to have him accept this new medication.

we do mix with plastic and he drinks from a plastic cup.

do you think that the chelating agent is compromised if we mix it with a cup of juice as opposed to a quarter of a cup?

i'd love to know how pwople get young babies to take it or would it be easier because they do not understand. 

cheers vic

Vic,
I'm not sure I believe I've read somewhere that it is a good idea to mix it with juice - I hope Andy will confirm that for you.  Sometimes the hardest thing in thal management is change - even if it's supposed to be easier.  I hope that he is able to adapt soon. 

We have used desferal for years - last week our son's belly was so bruised that we were unable to find a place on his belly to put the desferal on.  We began using his thigh - but he found it very uncomfortable.  We hope to begin using exjade soon, but no one is using it here yet. 

all the best,

Sharmin

Vic,

It should not matter if you mix the tablet with full cup or quarter cup of juice, important thing is to get the full dose. I assume your question is about dilution of tablet in a full cup of juice may compromise the effectiveness of exjade, the answer is "absolutely not". Infact drinking lots of water is recommended if you are taking exjade. Unfortunately we can only fill those little tummies with limited amount of water  but we try. Using plastic utensils is best.

We gave option to my daugther that either its the pump or the juice you choose    , surprise surprise she choose the juice. You have to figure out the way to get your son to drink it, remember you are the boss not him.

Sharmin,

I think you are located in Canada, there are lots of patients taking exjade so I find it hard to understand what you mean by your last sentence.

Sajid,

Thanks for clarifying the apple myth for us, when I read the post as how nice_friend was misguided by his doctor my ears were burning. 

Nice_friend,

Eat and drink in moderate and you are fine. Green vegetables, apples and other fruits have other essential nutrients that your body requires, don't deprive yourself of good natural fruits.

Hi Canadian_Family,

We live in Calgary, our pediatrician told us that only one patient is on exjade here so he is reluctant to begin using it?? 

Maybe I should enquire again. 

hey C.F  when 1st i read the reply of sajid abt fruits my my heart was burning i dont xplain that how much bad i felt on that moment bcoze its not the first time i have been miss guided several time even once  that kind of guidence sent me on wheel chair ,diabeties and osteoprosis,and fractured hand it takes 1 year to get back into normal life  can u believe it ...?? ahhh but now i have made my mind that  THIS IS THE REASON WHY THE JOB OF A DOCTOR CALLED " PRACTICE " .. ahhh how much my luck is in all of these matters ... u cant imagine how much i suffered and then back in the life again .

Nice_friend,

As far as iron foods, red meat has the highest concentration of heme iron, which is more readily absorbed than the non-heme iron found in fruits and vegetables. Fruits and vegetables have many important nutrients and should not be avoided. The only "exception" is that citrus fruits should not be taken at mealtime as they add to iron absorption from your other foods. They are fine for in between meal snacks. Moderation in the amount of red meat eaten should come before anyone cuts back on nutritious, non-heme sources of iron. And don't forget to take tea with all your meals as it helps prevent iron from being absorbed.

Canadian Family, I think your idea of giving your child the choice to make for herself about pump or drink is great. Letting a child make decisions for themselves is a big step in their growth and in this case, she can feel like it is she who has chosen to take this medicine which hopefully makes her more cooperative because it was her decision.