Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: Bostonian_04 on September 18, 2009, 03:49:17 PM
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May be you are aware that we have a tough time with our 3 yr Old to try Exjade. She will not drink juice or water in the morning except milk. So, she is on desferal. In last few months even desferal is hard to put on her. So, we want to try exjade again. I am wondering if other parents will share how they make their young ones drink exjade. What time do you give the med and in which medium? how long do you wait before and after exjade? how do you ensure the toddler drink all of the med. any and all tips and tidbits welcome.
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Hi Bostonian,
Actually its not necessary to take exjade in the morning,i have been giving my daughter exjade in evening since she started exjade,you just have to make sure that you give it to her on empty stomach,and after giving it ,you'll have to make her wait for 30 minutes before eating anything.
I give exjade to her in water,just a half glass of water,and when its completely dissolved,according to my daughter it has no taste,you can also give her at night too,that way if she is experiencing nuasea,she'll sleep it off,lets say if she sleeps at 8,wake her up at 10 and make her drink it and then back to sleep,i remember Sharmin used to give exjade to her son early in the morning,like at 6 A.M i think,an hour before he woke up for school,that way he slept off the nausea he was experiencing.
Drinking too much water in morning sometimes doesn't feel very good,even to adults,so i think you should try evening ot night time,like if she takes a nap in afternoon,give it to her after that,or at night time.
Hope this helps :)
Zaini.
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Hi,
We give exjade to Little Miss A about 1 hour after dinner. This helped us resolving the issue of continuous nausea and vomiting. Several other young patients have been instructed by HSC (Hospital for sick children, Toronto) the same instructions since they were having severe vomiting problems.
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Thank you Zaini, Thank you Canadian_Family for your suggestions. We will try the water in the evening.
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We give our girls their ExJade in a juice box. The 3 year old doesn't know the difference, but we have to shake it a lot and add a bit of water through the straw at the end.... we give it to them in the morning , but we are considering a change in time.
I'm curious what works best for others. My 5 year old complains of stomach pains sometimes, but has never vomited from the meds.
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Thanks emommy for your reply. we haven't started Exjade yet. We need to finish the desferal we have. As per hemo, insurence will not cover both desferal and exjade at the same time.
I have a question for the way you are giving the exjade. I thought the inside of the juice boxes have aluminium foil in it. so, exjade probably should not be mixed in the juice box. Andy, Sharmin, Please correct me, if I am wrong.
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Good catch, Bostonian. Most juice boxes are lined with aluminum foil which can react with Exjade, reducing its effectiveness.
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Bostonian :clap
manal
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You are right Bostonian. In order to avoid all of this we began giving lil A exjade with water in a plastic cup only. We now give it to him at 12am. We have to wake him up quickly to give it to him but he does okay with it. He wakes up with a good appetite and it resolves his stomach issues.
Sharmin
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I never thought about the lining of the juice box. I will have to cut one open and investigate!!!
Thanks!
:dunno
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Hi
My 3 year old takes it with orange juice first thing in the morning (between 7am-8am) and waits for 30min before taking anything else. It`s almost a year since he`s been on asunra now and has never missed a day. He initially did trouble me refusing to drink and then I used to fill the juice in a medicine spoon and give it to him till the last drop. But today he gets up asking for his juice.
take care
maha
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Maha,
Thanks for sharing your story.
Not sure if anyone outside US knows....Novartis is trying to see if Exjade can be taken with food. Jen Braunstein, RN for Boston Children's is enrolling patients for the study. We could not participate but hoping that this study will help to find other foods that could be used to mix Exjade with. If any of you have participated in a similar food study with Exjade, please share your experience.
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I just ran across that trial announcement yesterday from a Maryland Hospital. Apparently there is very little concern that Exjade won't be absorbed properly with food. The main concern is whether or not it upsets the stomach when taken with food. This should be a quick study and we may soon see recommendations to take it with meals, if this goes well.
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I posted on another thread, but wanted to post here too!
We stopped using the aluminum lined juice boxes and bought our girls special, fun, plastic cups for their ExJade. Last month their ferritin levels both dropped about 1000 Points!
I wanted to say THANKS so much for the advice and I am very encouraged about their ferritin and ExJade now.
I will give an update the next time we have their ferritin tested..
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Rebecca,
Its great to hear their ferritin has dropped,that really proves the point that exjade should be kept away from metal containers.
Zaini.
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Congratulations Rebecca :thumbsup :clap :clap :yahoo
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Glad to hear that emommy.....
here, we just started our toddler on Exjade. she is drinking it in plain water as she does not like juice. it takes half an hour to 45 minutes for her to drink 4 Oz. But it is sooo much better than desferal.
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:congrats Emommy , .......
Umair
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Hi,
We give exjade to Little Miss A about 1 hour after dinner. This helped us resolving the issue of continuous nausea and vomiting. Several other young patients have been instructed by HSC (Hospital for sick children, Toronto) the same instructions since they were having severe vomiting problems.
I am on exjade as well and I always take it at night about an hour after I eat dinner and then I have a snack about 30mins later it settles my stomach. It's best at night because whatever the side effect you will defiently sleep it off.