for everyone from aysam

hi everyone ,
this is aysams mother and i want to thank everyone who is asking about my little man
i thank you all and i know i have been so selfish by not returning any replys i
 have been not feeling to good
aysam he is doing well and getting older but his blood results arent they are getting worse
i did go see this doctor for a second opinion
she really is god but also confussed she also hasnt seen a case like aysam before she said she has at least 30 paitnets and none of them are like aysam
i am still on exjade his liver test just keep jumping i had tp stop for a week becuse it jumped to 259 then it went down now its up again when i started it its confusseing they tell me not to worry but i have some good news his feritin is now 3000 it was 4000 so good news i suppose but all other test arent to good
i wantted to ask if the liver test keep changeing up and down is this going to harm in the futer ?
i dont know ?
can anyone expliane



liver unction test
bilirum total           9

aspartate txaminase   130

alanine txaminase       300

gamma glut txferase     17

alkaline   phophatase        180



albumine    46   


all theses are very high  they tell me the normal rage is from 10 to 50
and then they tell me dont worry his hemaglobion has been droping to 9 in the third week of transfusion

so  if some can understand please help me understand becuase i dont the doctor says dont worry we have seen higher liver test ? mmmmm i think they are using my son as a gunnie pig
     i dont


merry christmas andy and evryone 

love you all

Hi Mariam and Merry Christmas,

It is common for liver levels to elevate when first starting Exjade. This has to be watched in all Exjade patients and in most patients, these levels will decrease as the body adjusts to the drug. It is an excellent sign that his ferritin has finally dropped and shows Exjade is working. The doctors will continue to monitor his liver levels. If they don't continue to rise it should be OK to continue with Exjade. I doubt anyone can tell you what the long term effect of Exjade is on the liver and kidneys because it hasn't been on the market long enough to know. Unfortunately, this has been the dilemma that thal patients often face. They are in fact, the guinea pigs for each new drug. But keep in mind that the oldest thal patients today were those who were the guinea pigs for desferal, and that has worked out pretty well for them. This is the reality of thalassemia. If you want a chance to take advantage of new therapies, you often do have to be one of the guinea pigs to see if it works and is safe.

I hope you are still planning on going to Lebanon for a consultation. Each patient is different and it is best to design a treatment program based on that patient's needs and you should see if they can put together a program for Asyam that can be followed by your doctors in Australia. Also, please have your daughter checked out. Her Hb is very low and you need to find out why.

Hello Mariam
I am glad Aysam`s ferritin has started to drop. Inshallah may all his other issues solve quickly too.
take care
maha

Hi Mariam,

Good to see you posting again,keep posting so you can share your problems and get your answers,love to Aysam  .

Zaini.

HELLO Aysam's mom ,
  for your Son ...
May God bless your child with a good, healthy joyfull life ...
Wish you, your son and your family all the best of everything in life. ..
don't loose courage bcoze its something that is realy usefful to fight against anything in the world ...

Best Regard
Take Care
Umair

Hey Mariam,

I am so happy to hear from you and so releaved to know that the ferritin is starting to decrease. You are doing an excellent job my friend, keep faith and as Andy said keep mointering the liver and kidney functions and i am sure that everything will be fine inshallah.

Keep us updated and greeting to you and all the family

manal

Very nice to hear from you Mariam,

Have a very Merry Christmas and I hope that you feel better very soon.  I am also glad to hear that Aysam's ferritin levels have begun to decline.  Were you able to do the Ferriscan for him? 

Best Wishes,

Sharmin

Hi, I am also very glad to hear that it seems that your son's ferritine is dropping. Btw I have been a guinea pig for teaching to poke... I know it's hard to tell the hospital you don't want. I cant give you any advice, but i hope they aren't very mean to your child and you.

Merry Christmas,

Dore

HI EVERYONE AND I WISH YOU ALLA MERRY CHRISTMAS AND A HAPPY NEW YEAR HOPEFULLY 2009 WILL BE A CURE FOR THALASSEMIA 


this is what i wish for a magic 
drug taken once and you will be cured



it is possible i suppose never know drems can come true

anyways can anyone explaine the blood results for me ?


love mariam & aysam

Hi Mariam,

The liver test levels are high but not high enough to stop Exjade at this point. The doctors will continue to monitor these levels. For now, there is no real danger from the levels being as high as they are. They are still far below a dangerous stage. I was reading an earlier post, where calcium, magnesium and phosphorus levels were mentioned. These were all low and low enough to cause some concern. We have recently heard from Canadian Family about their daughter's problems with low calcium and other minerals and the effect on her bones, and this can be quite serious and cause very weak bones, so this is something that does need to be addressed. Raising these levels will probably also have some positive effect on the liver levels and may reduce the hemolysis that is causing the high bilirubin level. Low mineral levels are both preventable and correctable. It is essential that you have him on a daily supplement. Look for something like this  http://www.vitabiotics.com/osteocare/osteocare_chew_formula.aspx?ID=103&sm=9

If you want to learn more about what can easily happen with thal children who are fussy eaters and don't take a supplement, read the thread at http://www.thalassemiapatientsandfriends.com/index.php?topic=2347.msg20795#msg20795

Also, please try to get him to eat nutritious foods. It can be really hard to get kids to eat good foods, but with thal kids, extra efforts have to be made to get them to eat right.

Dear Mariam,

I also think that diet and nutrition can make a significant difference in Aysam's health.  Please ensure that he drinks adequate water while taking exjade, not drinking water can cause devastating problems as Canadian Family has experienced.  Little A and several other children take Osteocare, I highly recommend it.

Proper nutrition is essential for thal major patients.  It can be difficult getting children to eat nutritious meals and we have all discussed methods to feel our children - you can see the following thread:

http://www.thalassemiapatientsandfriends.com/index.php?topic=2354.0

I think many of Aysams problems can be alleviated with nutrition and supplements. 

Best of luck,

Sharmin

Hi Mariam,how are you and how is your little ayssam now?i hope he is better.I am not sure if you remember me but we have met before in the hospital back in May this year just before i went to Lebanon and i think you were going too.
I just wanted to say that i am happy to hear that Aysam ferritin level is dropping and hopefully his other results will be better soon.Just remember that science is improving by the minute and we hope a cure for thal and other diseases is not too far away.
I wish you and all your family a happy healthy new year and nshalla Aysam results will improve with time.

Salam

HALA
 hi hows wa the trip?
hopefully good  how syou child when you comeing in hostpital it seems the days you come in is diffrent than than mine anyways get back to me
mariam

Hi Mariam,how are you and how is your boy?
thanks,the trip was good.at the moment we go for trans. on wednesdays.but i am changing it soon as moey started high school this year and i am looking for days that he finishes early so he does not miss a lot of school.
if you want to communicate feel free to email me and i will send you my number.
halamnd@hotmail.com  or halamnd@gmail.com

good luck with your son
salam