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youngest person on exjade

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Offline vic

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youngest person on exjade
« on: April 14, 2007, 12:37:50 PM »
hi all, i would love to know if there are any children taking exjade and whether it has been a good choice.  i am desperate to know as christian has been on desferal for only a couple of weeks and he is getting more and more depressed.  my husband broke down and cried tonight after he gave christian the needle (chriistian didn't see him get upset) because our son is getting worse and his behaviour is changing.  we are losing our happy little boy.  i found him tonight hiding under the computer table in the dark- he did this after he saw me mixing up the desferal.  it is breaking my heart. :madno

i am all into looking after his physical well being but his mental well being is just as important to me.  he is 5 and weighs 20kgs.  any chance of exjade for him????? ???

vic
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Offline Sharmin

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Re: youngest person on exjade
« Reply #1 on: April 14, 2007, 03:40:37 PM »
Hi Vic,

Sorry to know that you are going through a difficult time.  I understand it very well because we went through it as well, and it was awful.   I remember our son crying and pleading "no no no,  mommy please don't do this to me".  It was awful and heartbreaking, and he did seem sad and depressed for a while, also. 

Our doctor is looking into exjade for our 8 year old, I will post what he says once he has decided. 

I hope that exjade is an option for you.  Are you mixing your own desferal?  Our pharmacy mixes it for us, it makes things a little easier.  I also want to reassure you that even if you don't get exjade soon, as awful as things seem, they will get better.  Your son's long term mental well being will not be affected, especially because he has such caring parents. 

Do you know any other thal patients in the area?  If so it may help your child to watch them get their desferal.  This was helpful for a little girl here, she watched an older patient do her desferal and it made her feel better about herself. 

I wish you the best, my heart goes out to you. 
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Sharmin
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Kathy11

Re: youngest person on exjade
« Reply #2 on: April 14, 2007, 10:43:53 PM »
Hi Vic.
My heart goes out to Christian when I read your posting,.
It is harder for small person to cope with pain and all thats comes with it that is because they still dont have full logic reason as to why they are in their situation and it is overwhelming for the them.
Keep doing what  both you and your husband is doing give him all the loves and care he require and a little bit more.
If its any consolation we are all behind you and is praying everyday for all our suffering . :hugfriend

I hope they soon find another method of treatment and less painfull for children with thal.

Kathy
:flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers :flowers
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Offline sydneygirl

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Re: youngest person on exjade
« Reply #3 on: April 15, 2007, 09:11:56 AM »
Hi vic,
The story you said about christian hiding under the table sounded very familiar.I also as a 4 year old remember doing the same thing.I used to hide the needles and when my mum was to put the needle in i used to jump around thinking she wouldnt be able to put it in if i did this.Its terribly hard,i really understand ur sitiuation & hard it must be for a 5 year old.How about showing christian on a doll demonstrating  it on the doll putting its needle in this may help.Or pehaps saying if christian is good and has his needles so many days in a row after that he gets a reward/surprise from the shops.My parents did this for me also.Good luck & you & christian are in my prayers.
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Offline Sharmin

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Re: youngest person on exjade
« Reply #4 on: April 15, 2007, 09:59:31 PM »
Vic,

Reading about the doll reminded me that we used to let our son pretend to do desferal on a doll as well.  We would let him tape her up and everything.  I would then ask him to explain to her how much he loves her and why he is doing what he is doing.  Surprisingly her would tell her how he did not want to hurt her and how this may pinch for a moment but would protect her in the future. 

Desferal was tough for a few months regardless of what we did to alleviate the situation, but it did get better.  A few things helped, one was the doll and the other was roll play.  We would have him pretend that he was the parent and we were his kids.  We would then have him explain to us how much he loves us (his child) and why he putting desferal on us. 

These things make a big difference, but kids will get through this phase at their own pace.  My son was reluctant to engage in this role play at first but eventually warmed up to it.  Just take the cues from your little guy.  You'll get through this. 

Once again, exjade may be an option for you in the near future but in the meantime all of us are here for you.

Sharmin
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Sharmin
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Offline Manal

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Re: youngest person on exjade
« Reply #5 on: April 19, 2007, 12:59:52 PM »
Hi Vic , Sharmin & Sydneygirl :hugfriend :hugfriend :hugfriend

Quote from: sharmin on April 15, 2007, 09:59:31 PM

Reading about the doll reminded me that we used to let our son pretend to do desferal on a doll as well.  We would let him tape her up and everything.  I would then ask him to explain to her how much he loves her and why he is doing what he is doing.  Surprisingly her would tell her how he did not want to hurt her and how this may pinch for a moment but would protect her in the future. 

i really had a very hard time with my son in this needles issue ( of course i know that desferal is more tough and daily but i am talking here about the concept).  So i tried what Sharmin wrote exactly in the above quotation and Ahmad got his spider man toy and started telling the toy what i told him then he got a syrenge (toy) and inserted it in spider man's arm and i gave him bandage to use.

Later on the same day he had his CBC and FOR THE FIRST time he didn't cry at all because he took spider man with him to the lab and he is supposed to act good in front of him. He also took the bandage from the doctor and put it by himself. From that day he makes a blood test for poor spider man twice a day and he stopped asking me ''why always me''. I really hope that this attitude will continue .

Vic , as i told you i know desferal is really more tougher but try what Sharminand Sydneygirl said it is really like magic and who knows it could lessen things until you are sure that he can switch to exjade.

Sharmin and Sydneygirl, millions of thank you, i am so gratful for this idea

Love to you all

Manal

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Offline vic

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Re: youngest person on exjade
« Reply #6 on: April 20, 2007, 12:39:25 PM »
thanks guys,
we have been having a terrible time of the desferal.  christian is getting worse.  he works himself into such a state and so we have had to go back to hospital to do the desferal as the two of us cannot hold him down at home and after  (and if) we get it in he screams for 40mins to an hour and i mean screams- begging us to yake it out.

yeasterday at the hospital there were four of us (includingthe hospitals play therapist) and we took about 40 minutes to get him still enough to do it.  he has such a fear and has worked himself into such an anxious state that i hardly recognise him when he acts like that.  he has never beenlike that.  even with transfusions he just goe sin and puts out his arm shuts his eyes tight and gets it over and done with.

the hamotologist has suggested we leave it for two weeks but still go into the hospital daily and work with the psychologists and play therapists to help de sensitise him from this whole ordeal.  i hope it works because i want my son to rid the iron from his body to be in the best physical shape possible to tackle life's challenges but he must have a healthy mind as well to be able to do that.  if this is affecting his mental state then i dont know what we will do. 

the doll thing is a great idea guys, even the doctors suggested it and christian loves doing the injection to the doll and putting the emla and so on- he just doesnt want it done to him

so there you have it.  we have had a really tough   three weeks and i cant wait for it to start getting better.

vic
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Offline Zaini

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Re: youngest person on exjade
« Reply #7 on: April 21, 2007, 08:21:45 PM »
Hi Vic,

I am so sorry you are facing this very difficult time with desferal.i wish i could be of any help,sometimes it's really hard making kids understand,and ofcourse it's overwhelming for them, going through all this, at very young age, they don't even know wht'shappening with them and why?i hope you'll find a way,my prayers are with you and christian.
 :hugfriend :hugfriend :hugfriend

ZAINI.
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Offline Andy Battaglia

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Re: youngest person on exjade
« Reply #8 on: May 01, 2007, 12:49:58 AM »
Hi Vic,

I ran across this in a report from the recent 10th International Course on Clinical Management of Thalassaemia. that was held in Cyprus November from November 7-11, 2006. If you go to this page on the TIF site, and click on the link to the article about oral chelators, you will find the following assessment of when to give exjade to children under age 6.

From http://www.thalassaemia.org.cy/Medical_Focus.htm#10th_International_Course_on_Clinical_Management_of_Thalassaemia.

 Orally Active Chelators

Quote
Treatment of children starting chelation for the first time:
Currently first line chelation treatment in children with thalassaemia
major below the age of 6 years remains Deferioxamine until there is
greater long-term safety data available for the oral chelators in this age
group. For children who are poorly compliant to Deferioxamine, every
effort should be made to improve treatment through repeated
counselling and exploration of alternative regimens of Deferioxamine
administration. If these efforts fail, or if patients are unable to take
Deferioxamine for other medical reasons, Deferasirox (Exjade, ICL670)
may be considered as an alternative treatment in this age group.
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Andy

All we are saying is give thals a chance.
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Offline vic

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  • thal minor with sickle cell child
Re: youngest person on exjade
« Reply #9 on: May 01, 2007, 12:13:07 PM »
thanks andy for the info.  well the docs are on the right track because we are doing everything with therapists and psych medics to help him through this.  he has a doll at the hospital that he role plays with and injects with desferal.  he is happy to do it to the needle but asks me every day "am i having a needle in my belly today?" so he is still feeling very  anxious. 

will let you know how he goes when we start the desferal again next week.

vic
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Offline sydneygirl

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Re: youngest person on exjade
« Reply #10 on: May 02, 2007, 09:57:18 AM »
Hi Vic,
Another thing i have thought of to suggest to you is instead of putting the desferal in the stomach ,i tried my leg & i found it be better in the leg than in the stomach.Its more comfortable to sleep on your side i found.And also emla cream for your son ,so he doesnt feel the needle going in,it numbs the area around it.
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Offline fairytale

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Re: youngest person on exjade
« Reply #11 on: May 17, 2007, 06:52:02 PM »
Hi Vic,

I feel for little Christian 100%  :hug, how are things going now?  i agree with you that his mental health is just as important but believe me it's going to become a way of life for Christian.  I've been doing desferal for 29 years, it's never been pleasant  :gaahbut at one point it becomes a way of life. 

Thanks for making me think of how it must of been just as hard on my parents.

Fairytale
 

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Offline Gabri

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Re: youngest person on exjade
« Reply #12 on: May 17, 2007, 11:28:40 PM »
Hi Vic,

i'm sorry for what your son and you are passing through. It reminds me to my experiences when i was a littel child. Its important to speak to your son whow much you love him and make him understand that this therapie will save his live until you finde an other painless therapie to treate him. By taking with him he don't loose the fear, but he will know that he can trust you in everything. This will help him to nmanage better the situation.

I have found some abstracts about Exjade. Hope it can help you. Here are the links.

www.medicalnewstoday.com/medicalnews.php?newsid=23895 - 44k -

http://66.102.9.104/search?q=cache:grM6sIShVtsJ:www.pharma.us.novartis.com/product/pi/pdf/exjade.pdf+Exjade+age&hl=de&ct=clnk&cd=1

www.pharma.us.novartis.com/newsroom/pressReleases/releaseDetail.jsp?PRID=1844 - 32k -

www.novafactor.com/products/exjade/ - 14k


Gob bless you and your little boy

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