Started Desferal yesterday - need some suggestions

Hi all! I have not posted for a long time. Hope everyone had a great summer (and winter where applicable)

We started with Desferal for our toddler who just turned Two last month. her ferritin is ~ 1700 range. We were hoping to start with Exjade but we could not make her to drink 4 Oz of liquid (which is not milk) on empty stomach early morning. We tried for last 4 months with OJ, AJ , plain water and failed. So, we are going the hard route and started with desferal. The 1st day, which was yesterday went well I guess. She cried for a while and then forgot about it when we gave her a new toy to play with. But the reason I am posting here is, today the whole day, she complained saying my bum hurts. and she is very moddy and sensitive today - crying for no apparent reason. her lips her still  very pink so it cannot be low Hg, right? Does the area hurts after the desferal is removed? even if the area is not swollen or red? What can we do  after taking out the desferal needle to make it soother for our daughter. Please let me know.

WOW,BOSTONIAN...

OUR GIRLS STARTED TX'S TOGETHER AND NOW CHELATION.LAURYNS HGB JUMPED FROM 642 TO 1000 IN 5 WEEKS. I THINK WE ARE STARTING HER ON EXJADE(GOD WILLING)...very xoon.like 2 weeks. what was ur angels ferritin before drs recommended desferal???any advice or suggestions?

thanks,christine

I'd say that the tummy is the ultimate place for Desferal as there is less contact with it to other things. However, it's a matter of personal comfort.

You can also try Emla cream to numb that area before putting the needle. Ask your doctor about it to see if such a small child is allowed to used Emla.

Christine27, Sajid, Thanks for your replies.

Christine, Goodluck with starting Exjade. If Lauryn can drink 4oz of liquid early morning, then chelation with Exjade is the best. We could not make our daughter drink that much liquid in the morning. Her Dr. was not worried about ferritin increasing beyond 1000 till she was below 2yrs of age. He said she will be using a lot of iron to grow and we should start chelation when she reaches the age of 2. Since we could not use Exjade so we have strated desferal. To be very honest, it is very hard on both me and my wife to poke her with needles 5 nights a week.

Sajid, we are using Emla before inserting the needles. She complains of pain in the morning after the needle is taken out. Do you have any suggestions to sooth the area after the needle is taken out?

Andy: I am back in this site after a loong time but wanted to say Hello and Thank you to you. i still remember your posting on how to take care of our daughter when me and my wife were shattered from the news of Thal and your encouraging words gave us soo much strength. Coming back to this site and reading several posts I find you are continuing that wonderful work again and again. so, THANK YOU for being there for parents like us..

Hi Bostonian,

I'm glad to see you back. Will your daughter drink that much liquid at one time later in the day? It isn't really necessary to take it only in the morning. I've talked to others who had to switch to another time of day to deal with stomach discomfort and it's worked out fine for them.

Andy, we are working on that..to see if she will drink 4 oz liquid any other time of the day. Till that time, we will be using the desferal and hoping that her ferritin will be close to 1000 so that she can start on lower Exjade dose.

Best of luck with the desferal.  We began desferal for our son at 18months.  We have always used the stomach for his desferal, but we wish that we had altered the site somewhat because now he prefers his stomach only.  This is a problem because there is scar tissue on his stomach and it is difficult to find a new site each time - (apparently desferal is not as well absorbed in scarred tissue).

There can be tenderness the following morning at the site, this is quite normal because the needle has been under the skin for many hours.  Also, the desferal is being infused under the skin all night and it can sometimes pool between there layers of tissue beneath the skin.  My son finds it to be more tender the next morning if he gets the poke on his thigh or hip area, and less tender if he is poked on the belly.   You mentioned that there is no swelling or redness so it is not likely that your child is sensitive to the desferal.  

Again goodluck you and your child will adjust to this very soon.  Don't be surprised if your child goes through various stages of acceptance of the desferal.  Just be calm and persistent and everything will be fine:)  

Take care I wish you and your child all the best,

Sharmin  

Also try the shorter thumbtack type needles if you can find any or better yet there are these canula type flexible needles that the insulin pumpers use where you take out the metallic part after inserting it.

A little bit of icing can also help i think!!

Zaini.

There must be different views regarding chelation in different places. Here in Perth, chelation only starts at 3 years of age. My son's ferritin level was over 2000 when he started taking exjade. He is the first child to start on exjade without having using any other methods of chelation here. For a year or so, his ferritin level kept climbing. It reached 4000 at one stage. Now he is 5 and the ferritin level is 600+. I was told that if over chelated, they may have stunted growth on their torso. I haven't done any research on that yet.

Wow this is a good result!

Keep it up. I hope your son will never have to face the Pain of Desferal!

Sharmin, Zaini and Sajid: Thanks for your replies and suggestions. Sajid, we are using canula type flexible needles and in last one week what we found that my daughter complained only when we used the upper bum for desferal. She didnot complain of pain when we used upper hand or stomach area.

Aus, it is great to know the results you got with Exjade. Can you give us some idea about how your son's dosge was adjusted based on ferritin levels when you started? for example : did he first start on low dose? then how long was he on low dose? then how often his dose was changed when his ferritin kept rising? now that his ferritin is in 600+ range, how is exjade dose? is it lower now? I know 2 families here in Boston, who have their children on Exjade for last one year and none of them have seen the ferritin level come down. Their dosage was adjusted twice or thrice so far but not seen any change in ferritin level - it is not increasing but not coming down either. so, your experience will be valuable to share with them.

I am really happy to hear that your son is actually chewing the tablets. This is the first time I am hearing that Exjade can be chewed.

Hi Bostonian 04,
Nice to meet you,having taken desferal for most of my life (and im now in my late 20s) when i always took my desferal out the morning after my leg/stomach would always hurt and be sore,even if you cant see redness or swelling may be tender and sore for upto a couple weeks after (for me anyway,as i was always sensitive to desferal and my skin is) you could try a cream called Hirudoid cream (its called in australia) and it used to help my leg heal or stomach.The other thing id thought id mention is when i used to put my needle in if you accidently hit a vain instead of muscular it could hurt alittle extra,sometimes as you cant see i accidently used to sometimes hit a vain but its so painfull after.Hope this helps alittle.

Best of luck Bostonian :
i hope she will b able to start Exjade very soon , & she will not face much needles ... always wishing that she will come on easy way of chelation ... till that time you please dont compromise on her chelation therapy ...

take care
umair

Hello Sydney Girl and Nice Friend,

Thanks for your suggestions....we hope that we will be soon able to start Exjade for our daughter. We never thought a oral medication will be so hard to give to a toddler. Till we can make her to drink 4oz of liquid, we will continue with Desferal.