Devastating News

Hi CF ,
i want to Wish Little Miss-A ALL the Best of LUCK

Alot of Good wishes and Best Regards ..
Take Care
Umair

Wishing little Miss A all the best, always,

Sharmin

Thanks Canadian family for the article and wishing you all the best

manal

Canadian Family,

I hope that things are going well with lil Miss A,

Sharmin

Hi Sharmin,

Little Miss A is doing fine. She is still a fussy eater but we are managing. Her weight is back to 40lbs. This osteoporosis thing is still bothering us and we are hopeful to get some real answers in May.

Canadian Family,

I am also praying that they will determine that her bones have improved and that there is no reason to be concerned.  I am glad that she has regained her weight.  I am praying for good news in May. 

Sharmin

Friends,

I am back after painful weeks at job. The latest with little Miss A is that she has stopped exjade for three months. Her ferritin went below 300g/dl and doctors asked to stop the exjade immediately. Her osteoporosis appointment is on May 14, 2009 and we are so concerned right now. The shock of osteoporosis is still dangling on our heads.

She is eating well and doing normal things but we are not sure what to expect next.

Hope you guys are doing well. I will keep reading the posts, I have to do a lot of catch up.

Regards

Canadian Family,

I am glad to hear that Lil Miss A's ferritin is really low and that she can take a break from exjade.  I am praying that her osteoporosis appt will go well and that her bones have improved drastically since her last scan.  I am also happy to hear that she is eating well and behaving normally. 

Sending love and prayers to your family,

Sharmin

Canadian Family

I am really glad to hear about Little Miss A's ferritin,i hope every ting will be ok in your osteo appointment too .

Zaini.

I think that the fact that she is behaving normally gives some clue to her health. I would expect to hear some positive news after she is examined. Proper nutrition and exercise are the keys to good bone health and she is definitely on the right track. The ferritin news is also excellent. The breaks are always appreciated by those who have to chelate and it is also much easier to maintain the low ferritin levels once they are reached.

Hi Canadian family
I am so glad your little one`s ferritin is below 300 and she can have a break from chelation. Best wishes for the other appointment too.

maha

I am very much surprised that the doctors suggested a chelation break. My ferritin has been around 100 for the past 4 years and nobody suggested a break to me, the dose I take  is more or less the same and the combination therapy goes on for me!

Lena.

Hi Lena
The little girl is just 5 years old. It is dangerous for kids if they continue chelation when they constantly drop below 500ng.

take care
maha

Thank you Maha for letting me know. I didn't know the kid's age. However in my unit we have a little girl around 8 who is on ferriprox and exjade and her fe is somewhere near 200 and has not stopped chelation. Of course, she is not 5.

Lena.

Thank you Maha for letting me know. I didn't know the kid's age. However in my unit we have a little girl around 8 who is on ferriprox and exjade and her fe is somewhere near 200 and has not stopped chelation. Of course, she is not 5.

Lena.

Lena, here in the Netherlands they treat each person different! Most patients don't get tx's in time or don't do chelation. I know one patient (30+) who get the ferritin with ferriprox down to 600 and then stopped. Her doctor told her to do that, and then she started with regular transfusions. At that time she get rarely a tx.  Now she gets 2 bags every 3 weeks, does no chelation and also no ferritin tests....   I wish soon we will all have the same treatment. [Personally, I am very concerned about my almost 14-year old friend who get now rarely transfusions (lives on a too low hgb level), has diabetes and don't do any chelation.]
Maybe it's normal that those countries has a different protocol. If I am right that little miss A. stopped chelation due the bone problem. Unfortunately, she is not the only one. Also I started to get not so good labresults - except for ferritin what is still decreasing.