Thalassemia Patients and Friends
Discussion Forums => Announcements => Topic started by: Manal on January 09, 2009, 05:09:19 PM
-
I got to know from our association that it will be held on the 1st and 2nd of May. Schedual is not yet announced. I am now investigating the possibility of going there or not, i will let you know.
They are again announcing about sponsorships, check the link
http://www.thalassaemia.org.cy/pan_me.html
manal
-
Manal,
Let us know if you will be there, we always learn so much from you when you attend these conferences.
Sharmin
-
hi manal hi everyone
long time i havent posted i have been so busy
i have been looking after four kids and my 5 the kids i am a carer for they have no famaly so you can all imajine that i have been to busy 9 kids very hard to go online
aysam, well i was told last transfussion that his iron hasnt went down much they said it has gone down but much like 500 grams only he iron is still over 3000 i am going hopefully in april to lebaonon its final i just couldnt get up and leave as i dont have a job there and many other issuies i needed to make sure if i am going to lebaonon it will be for a long time this is why i didnt go yet remmeber in austrlalia everything is for freein lebaonon it will cost $5000 month just for exjade and $1000 for treatment so i needed to make sure i am able to do this now i think i am ready in april and i will stay in lebaonon becuse they just dont knowaysams couler has changed he looks like drker know like i dont know pale ans dark i think its due to his iron his liver test are playing up they go high then low i dont know if this is going to affect him long term i dont know if any that is happeing tp aysam will affect long term i hope not i read about the syria confrence manal whats all this about ?
worth going ?
-
Hi Mariam, i really missed talking to you :hugfriend
I wish you all the luck in your trip and hope tht all Aysam issues will be clearer there.
As for the conderence, i don't have the details or the programe now, but i will update you once i have them
Big hug for you and the kids :hugfriend
manal
-
hi manal hi everyone
long time i havent posted i have been so busy
i have been looking after four kids and my 5 the kids i am a carer for they have no famaly so you can all imajine that i have been to busy 9 kids very hard to go online
aysam, well i was told last transfussion that his iron hasnt went down much they said it has gone down but much like 500 grams only he iron is still over 3000 i am going hopefully in april to lebaonon its final i just couldnt get up and leave as i dont have a job there and many other issuies i needed to make sure if i am going to lebaonon it will be for a long time this is why i didnt go yet remmeber in austrlalia everything is for freein lebaonon it will cost $5000 month just for exjade and $1000 for treatment so i needed to make sure i am able to do this now i think i am ready in april and i will stay in lebaonon becuse they just dont knowaysams couler has changed he looks like drker know like i dont know pale ans dark i think its due to his iron his liver test are playing up they go high then low i dont know if this is going to affect him long term i dont know if any that is happeing tp aysam will affect long term i hope not i read about the syria confrence manal whats all this about ? worth going ?
Wauwie, it sounds that you really do a good job. Nine children, how can you handle that?! :) Between which age are they? Is Aysam your biological child? I hope they all doing well and Aysam feel soon better. Trust me, I know how annoying it can be if the Fe stays high. Lebanon most be a beautiful country and I have heard a lot of good stories about that doc. I hope you will find a way to deal with the high prices of the meds. Take care and I wish you all the best from the Netherlands, Dore :flowers :flowers :flowers
p.s. means the name Aysam something? I like the name :)
-
Mariam Sis ,
BEST OF LUCK FOR EVERYTHING :getwell Message for Aysam ,....
Best Regards
Take Care
Umair
-
The scientific programme is announced now and it mentions that Dr. Sadelain will attend too
http://www.thalassaemia.org.cy/pdf/scientific_programme.pdf
manal
-
Manal,
That sounds great! I hope that Dr. Sadelain will attend.
Sharmin
-
hi all yes aysam is mine i have five children of my own four grls and aysam da only boy the other kids were my neighbours kids i didnt just go out and ask to look after a another four but the goverment took them from there mother and father becuse of abuse and neglet and they are 9 bro and sis i took in four and my mum one my freind three and one was given to somene else i took them in cuz they havent anyone at all no famaliy there ages are 7yr old girl 12 yr old girl 11 yr old boy and 9 yr old boy they all have special needs so i felt so sorry for them they wre going to be given to other ppl and not toghether so we toook them in i did it becuse of aysam if i do good maybe god willl help me it is vey hard to do but they are wonderfull children all of them i have had thm now for three months now dont know eht will happen next
manal i do want to go to the syria but is it worth it
and you guys mentioned the doc taher good things about himplease tell me what
-
Mariam, I am really so touched by your attitude. May God reward you with all what you wish, it is really a hard job, may God bless you dear :hugfriend
As for the conference, according to the programme, it seems interesting ,but sometimes as you know sometimes important lectures are cancelled or doctors don't atttend for a reason or another. But in my opinion, attending conferences will definetly add to our knowledge especially in the management of the disease and it is always good to meet the est doctors in the field.
Usually there are small things or tips that you get to know from conferences. Most of these things are not discussed in clinics for a reason or another but knowing them is so important. I can not neglect what i learned when i attended the Singapore conference ( for example the importance of antioxidant and their kinds, supplemention and nutrition...), so i guess if you have the ability to go, don't miss it
manal
-
Mariam,
I highly commend you for what you are doing for those children, that is truly amazing and wonderful. May you have all the strength and patience in the world to take care of all of the children in your care. May little Aysam be blessed with good health and a long life.
Sharmin
-
You are amazing Mariam :hugfriend i am sure God will reward you here or here after,Aysam is very lucky to have you as a mom :hugfriend.
Zaini.
-
THANKU ALL
for yor nice comments i am doing only what i think you all will in my case
AYSAM TODAY is looking very pale so i took him to hostpial i did i blood test
GOOD NEWS IS THAT his liver is very good going down
BAD NEWS his hemaglobion is 10 and only two weeks ago he put blood so we are tranfussing in a week
VERY BAD NEWS HIS FERRITIN LEVELS 3400 not comeing down
i dont know the long term complications on this i am so confussed why his dose is up and he takes it on time why >? its so high always
-
Hello, I am very touched by your story. You are amazing and a very good person/mother.
I am sorry to hear that his hgb has dropped and the ferritin stays high. I dont want to make you worried, but there is a type of iron overload what only affects little children. Thats all what I know about it.
Best wishes, Dore
-
what type of iron im not paniced i swear plaese tell me i need to do some resach
-
Mariam, what is Aysam's weight and dose of exjade ???
manal
-
his weight is 14kilo his on 375 a day
-
just need to know
doctor says that his iron is high but it wont affect until 10years so we have time to take his levels down
i asked for a biopsy and she said that no need for on we will wait first she don think the liver or any organs is damegd ?
well a the confrence in singapore i heard a doc say he did liver biopsys fortwo pautents one with high feritin one with low and the shocking thing was the one with low ferritin levels had damage to the heart and liver so not everton is the same i suppose dont you agree ?
-
Mariam, the chelating dose for his weight should be at least 420 mg. Usually it takes up to a year to see a decrease in ferritin when you start the chelating dose.
In aysam's case i believe so much that taking desferal via IV for a while will help so much in decreasing these levels.
As for organ damage, i think that only the MRI or the biopsy are the only tools that tells you about the damage
manal
-
420 wow big diffrence from what he is on now
the doc just started him on 375 last week
i dont knwo manal the dc said in a few months she wll also put up the dose
yes you are right that the organ damage nowne can now until mri or biopsy well this doc thinks she nows everythink
and no they will not do iv for him they have refused to do this
manal his hb is each time going down faster why you think ?
his live gose up then down like a roler coaster
if he has alreday damage in live dose it sow in his bloods and also
3400 ferritin to high ?
i am going to lebanon all i waitting for his aysam papper work itr is takeing so long he needs to be lebenisse to get cheaper hostpital there so iam leaveing this country and i am praying by may my sons papper work are finished as i wont to take aysam to lebaonon and syria
-
manal you there candian famaliy anyone
-
Hi Mariam
I can understand how frustrating it can be when you are doing everything right and not seeing the results you expect. Have patience and inshallah you will be able to see a drop in his ferritin. Last month my son`s SF was over 3000 and this month it is 1858. You will be able to see a drop in his SF soon.
Lots of love to little Aysam
maha
-
i am so glad and hapy to hear ur
angles iron has drped so fast
bu sweety in my sons case its been from september last year untill now his ferritin lebvels are in the high ow it has gone down um maybe 300 only
-
Mariam
What time do you give exjade to Aysam. Is it the same time everyday? Are you using a plastic spoon and cup to mix exjade? You have to wait for atleast half an hour before he gets to eat anything? If you are following all of these and still his ferritin isn`t dropping then like Andy said for some it takes six months to one yearfor the SF to drop.You just have to play the waiting game.
take care
maha
-
Mariam, the doctor is right about starting the exjade with a low dose until the body gets used to it to avoid the side effects, then this dose is increased to the chelating one which is the effective one. Even the effective one takes time to see results. The effective or the chelating dose is 30mg for every kilo, so for aysam's weight , it is 14 kilos x 30mg = 420mg
This is the end dose he should reach according to his weight but the doctor has to start with a low dose until he/she reaches the the chelating one.
I am sure that when you go to Lebonan, they will agree about the desferal via IV . Good luck in all your procedures.
As for the increased hemolysis, was aysam ill or had any infections recently. Infection usually cause the Hb level to decrease more than the normal frequency. If not, an antibody test should be done to detect if there are any antibodies in his system that contribute to this hemolysis. The name of the test ids Coomb's test
manal
-
every day at 5oo t 600 am i isolve it in a bit of water and apple juice and just shake it in the bottle he only takes it in the bottle the only way he will
and you think manal that in lebaonon they will do iv desfral
-
Hi Mariam,
Exjade should be stirred and not shaken. Stir with a wooden or plastic spoon, but never expose Exjade to metal. Do not skip any days. As He gets up to the recommended dose you will begin to see more progress.
http://www.thalassemiapatientsandfriends.com/index.php?topic=1928.msg16165#msg16165
2.1 Dosing Information
The recommended initial daily dose of Exjade is 20 mg/kg body weight.
Take Exjade once daily on an empty stomach at least 30 minutes before food, preferably at the same time
each day. Do not chew tablets or swallow them whole. Do not take Exjade with aluminum-containing
antacid products. Calculate doses (mg/kg per day) to the nearest whole tablet. Completely disperse tablets
by stirring in water, orange juice, or apple juice until a fine suspension is obtained. Disperse doses of <1 g
in 3.5 ounces of liquid and doses of ≥1 g in 7.0 ounces of liquid. After swallowing the suspension,
resuspend any residue in a small volume of liquid and swallow.
Individualize the decision to remove accumulated iron based on anticipated clinical benefit and risks of
Exjade therapy. In patients who are in need of iron chelation therapy, it is recommended that therapy with
Exjade (deferasirox) be started when a patient has evidence of chronic iron overload, such as the
transfusion of approximately 100 mL/kg of packed red blood cells (approximately 20 units for a 40-kg
patient) and a serum ferritin consistently >1000 mcg/L.
2.2 Dose Modifications
After commencing initial therapy, monitor serum ferritin every month and adjust the dose of Exjade if
necessary every 3-6 months based on serum ferritin trends. Make dose adjustments in steps of 5 or
10 mg/kg and tailor adjustments to the individual patient’s response and therapeutic goals (maintenance or
reduction of body iron burden). If the serum ferritin falls consistently below 500 mcg/L, consider
temporarily interrupting therapy with Exjade. Do not exceed Exjade doses of 30 mg/kg per day since
there is limited experience with doses above this level.
The risk of toxicity of Exjade may be increased when inappropriately high doses are given in patients
with low iron burden or with serum ferritin levels that are only slightly elevated. The safety and efficacy
of Exjade when administered with other iron chelation therapy have not been established.
-
Yes Mariam, i think so because the way of management of thal is the same in both Egypt and Lebonan and this is what they do here. It will also be a good idea if you emailed Dr. Ali Taher and ask him about his opinion on this
manal
-
manal
i did email dr ali taher last night no reply he hasnt ever replied to me not once
-
HI professer how are you ?
i met you before at singapore
??? ??? ??? ??? ??? ???
question doctor please
i am comeing to lebanon hopefully very soon im just finishing my kids pappers to become lebanese and this is what has taken so long
but inshala this is happeing in the comeing months my concern for the time being is
aysam who is born 1/5/06
weight 14 kilos
height 91.6
is takeing exjade
the dotors here in autralia took your advise and put the dose up to 375 wich he has started two weeks ago the transfussions stayed as they are one every four weeks
220mls of blood
his liver funnction test seem to be playing up every
two weeks anyways my concern is his ferritin
always over 3000 it has maybe gone done couple of grams it was 4000
i give him exjade at 5am to 6am
every morning mix it with apple juice
so i am doing everything right
i have asked for liver biopsy
but she said that at this point
no need for the biopsy she is suggestion to wait if the iron dosnt come down in a few months than we do one and if she finds the liver is damaged than it will be life threating wich then she will tell me he might die and also she is saying at this momment the iron is high but wont damage the liver until ten years i dont know this is very confussing to me you are the profsional please
i have one boy and never am i going to have kids again he meens so much to me i want him to live a normal life and when they talk to me about death it really scares me tell me doctor untill i am able to come to lebaonon what shall i do his iron is arond 3600 and he is needing blood every three weeks his stomach is always bloated and he isnt realy getting taller he always blinks alout i dont know if this has anythig to do with thalassemia but his couler is of white and when i did a xtray for his chest for a infection they notice a lession in his arm this is by accident they saw it they say its due to the bone marrow please doctor get back to me with your advise as soon as possible
i am going through depression at this becuse i know i cant go to lebaonon until he is a lebanese citizen for the chronic center i have saved 4 months of exjade and the hospital are going to give me 7 months supply so i will be ok for one year as i was told that they are very expensive in lebanon
please professer ali taher help me hep him
i will be waitting for yor email
:rolleyes :rolleyes :rolleyes :rolleyes :rolleyes :rolleyes
kind reagrds
mariam saba
-
I am sorry Mariam that he is not replying but i hope he will soon. I know how frustrating this is :mad.
Yesterday, i saw my hematologist and i told her about Aysam's iron levels and she also advised the IV desferal and added that it will cause a significant decrease in his ferritin.
But again, you can not do this in Australia as you will need a prescription :mad
manal
-
manal so she agrees also iv desfral
what will be the result if he dosnt have it and his iron levels dont come down soon
im so confussed also sory can i ask is hs a doctor or professer?
-
Mariam the IV desferal is considered an aiding factor in order to see a quick drop of ferritin, but not a continous treatment and also don't forget that he has not reached his targeted dose of exjade yet which is the chelating dose. The doctor is Professor Amal El-Beshlawy Prof. of Pediatric Hematology Cairo University
manal
-
Mariam, does Aysam's doctor refuse to give your son desferal?
I know how frustrating this is. I keep crossing my fingers for a good result!
-
no she dosnt refuse
she cant give him desfral ill show you a picture why but she refuse to put the dose up for exjade and i think she dosnt know what she is doing i think she is afraid
-
Mariam,
I also agree that 24hr IV desferal may bring down our little Aysam's iron levels quickly. Please see if your doctor agrees to do so. My son used to have IV desferal with each transfusions when he was younger and he did well with it.
Take care and please keep us posted,
Sharmin
-
hi all how everyone ?
aysam is doing fine just want to ask he did some test for the zinc and i was told it was low ?
wich meen ?
if someone can telll me what to give him his liver test also playing up and his iron is 3000 its been so high for so long his face always looks dark he hasnt any couler anymore even when he puts blood he seems to always be dark in couler ?
i am going oversease in two weeks but i cannot take him his papper work to become lebenisse i spoke to proffecser taher and he rufesed to take him as a paitent if he hasnt become a citizen and i have some problem with his pappers i am going to see if i can fix them i will go to the confrencein syria also
-
I am so sorry to hear that you can only get (the right) medical help when you got the right papers. :mad
I hope the paper work can be fixed soon. I wish you also a good trip & keep us update, please.
:hugfriend
Dore
-
Hi Sis,
I wish you best of luck in getting good medical treatment for Aysam , :goodluck
Lots of Good Wishes
Best Regards
Take Care
Umair
-
Mariam,
I s Aysam taking IP6,both me and Sharmin when started IP6 noticed a great change in our kid's skin color.And is he taking any Zinc supplements?if he is not ,start one right away.
I hope your paper work problem will be solved soon.
Zaini.
-
Mariam,
Aysam is still not receiving adequate chelation and as long as he continues to get darker, you know he is not having enough iron removed. How much Exjade is he currently taking?
-
zinc what dose it do what dose it even meen
and all these medicines what are they i never
ever heard of them he is on 375 exjade dailly
i give him everyday at 500am with apple juice so what am i doing wrong ?
he weighs 14 kilos
please tell me help me yes it is sad i told proffecer i am a citizen and so is aysam he was very meen to me about it even i told him i will oay for what ever needs done he also said even if u pay he isnt allowed in the center as he isnt a citizen and i beged he said look mariam what you want us tp do i cryed on the phone asked for his advise he said that he cannot giveme any advise on the phone as he will not be responsible for it as he dosnt know the paitent yes this is what he said he also said stopemailing me and calling when u fix the pappers you bring him and he didnt even say bye just hang up on my face i felt so low and lost this is life what can i do
i dont always email him i did maybe 4 times and i called twice from october last year thats all so why he is he saying this i dont know ?
-
Hi Mariam ,
Have some courage sis , everything will be O.K ... dont loose your heart , gather your courage and Patience and make doctor's words your strenghth and then try to fix the Papper work ... have faith in your self , you can do it , You have powers you never dreamed of. You can do things you never thought you could do. There are no limitations in what you can do except the limitations of your own mind." - Darwin P. Kingsley
Do remember this quote, its one of my favroute quotes, Have faith in your self you can do/fix anything that you never thought you could, you can fix this probleme as well... and please never cry again okiey , just think/approach any prbleme by saying " okiey i will face it , i can do it "
http://www.ehow.com/about_4678519_what-does-zinc-do-body.html?ref=fuel&utm_source=yahoo&utm_medium=ssp&utm_campaign=yssp_art
What Does Zinc Do for the Body?
By Kent Ninomiya, eHow Editor
Zinc is very important to the human body. It is an essential trace element that is vital for growth and development. Zinc is instrumental in immune response, brain function and the ability to reproduce. There is also conflicting data suggesting that zinc supplements might be able to reduce symptoms of the common cold.
Function
Zinc is essential for the proper function of cellular metabolism. About 100 enzymes rely on zinc to help them catalyze vital chemical reactions. Zinc protects cell membranes from oxidative damage and stabilizes the structure of cell proteins. Zinc proteins bind to DNA and help the genes tell cells what to do. This includes telling certain cells to die, which is important for growth, gestation and disease prevention. Zinc also helps control the release of hormones and the transmission of nerve impulses.
Benefits
People can benefit from eating zinc-rich foods. These include red meat, poultry, crab, lobster, nuts, beans, milk, yogurt, cheese, whole grain bread and fortified breakfast cereal. The food with the most zinc is oysters--a serving of 6 oysters has 76.7 mg of zinc. The tolerable upper intake level for an adult is 40 mg of zinc, so it is advisable to eat no more than 3 oysters per day.
it was the short introduction of Zinc, i hope that , i answered .. did I ???
Best Regards
Take Care
Umair
-
Mariam,
IP6 is an antioxidant,i don't know if its available in Australia,Theodora will be able to help you in this aspect,or either you can buy them from www.puritan.com .They are in capsule form,you can open them and give the powder they contain to Aysam.
Zinc supplements are available in syrup and tabs both,ask your doctor to prescribe one for you.
What are Aysam's SGPT levels? According to his weight his dose of exjade should be 420 mg,but if SGPT levels are not going down,then you might have to weight a little bit.How frequently is he gettin g transfusions?
Zaini.
-
hi all as i told you today i had a feeling somethingwas rong he had transfusion two weeks ago now his hb is 9.7 and his liver function is high 280 why why why
what is happeing to my son my smart son who has the whole lifeachead of him he looks pale and yellowish
bilirum total what is the normal limit and i want to ask i need to know the truth his liver funcion test if always they go upand down would this damage the liver in the futer or becuse the liver is one week high next low nothing will happen as the iron asweel ? will it damage if also it plays up one week high next gone down a bit ? i need the truth
i do have faith
but i want the truth
-
Dear Mariam,
Yes, Aysam's ALT level is high, I don't know what the long term complications of this would be. Right now the most important thing is to ensure that he gets proper chelation because that will release iron from his liver and improve its function. Most importantly, you need to protect his heart and if the iron levels remain high damage can occur in his heart. Our main goal is to get those levels down.
Aysam should be on IV desferal for a few weeks - and you should continue this until his iron levels are below 2000. If his liver enzymes are so high then perhaps you should be using desferal all of the time - it will be best for him at this time. Perhaps, once his iron levels are down and his liver enzymes return to normal you can start exjade again. This is my opinion, perhaps you can discuss it with out doctor. My prayers and best wishes are with you that all of this resolves and Aysam will be on a regular transfusion schedule soon.
I wish the little guy all the best,
Sharmin
-
Dear Mariam,
Yes, Aysam's ALT level is high, I don't know what the long term complications of this would be. Right now the most important thing is to ensure that he gets proper chelation because that will release iron from his liver and improve its function. Most importantly, you need to protect his heart and if the iron levels remain high damage can occur in his heart. Our main goal is to get those levels down.
Aysam should be on IV desferal for a few weeks - and you should continue this until his iron levels are below 2000. If his liver enzymes are so high then perhaps you should be using desferal all of the time - it will be best for him at this time. Perhaps, once his iron levels are down and his liver enzymes return to normal you can start exjade again. This is my opinion, perhaps you can discuss it with out doctor. My prayers and best wishes are with you that all of this resolves and Aysam will be on a regular transfusion schedule soon.
I wish the little guy all the best,
Love Sharmin
Sharmin
-
thankyou yes i agree he should be on iv too
but doctors dont there saying hisliver test are high becuse of exjade not ironl evels ? do you agree
and when the liver is high whats happeing to it ?
-
I agree that the high liver levels are the result of Exjade. If they don't drop, I think he should switch to desferal until he is older.
-
Mariam,
I think that it would be best to have Aysam on IV desferal immediately. Once his iron levels are below 2000 you can do a good job of keeping his iron levels down by using desferal at home 5 - 7 nights a week, 12hrs a day. Once you get his levels down further then the doc may reduce his desferal to 3 - 5 days a week depending on his levels. These measures will protect him from harm.
You will probably notice his liver enzymes normalizing at this time as well. Once he is older you can try oral chelation again. Who knows by then, perhaps more options will be available for chelation. For now desferal is his best option. It is hard at first, but if you are sure not to have any fuss surrounding it he will soon adjust.
Best of luck and keep us posted on how things are going with the desferal,
Sharmin
-
Sharmin but Aysam has allergy from desferal and i saw the picture of his tummy so enlarged after taking it. Do you think IV will have the same effect???
manal
-
Manal,
You are right, I just remembered his distended belly. I wonder if that was an allergy to desferal. Mariam - had Aysam's belly returned to normal since you have stopped desferal? Perhaps the hospital can test to determine if Aysam is allergic to desferal. This is difficult because Exjade seems to be affecting his liver enzymes and his iron levels are increasing - so desferal would seem like the logical solution to lower his ferritin and to allow his SGPT to return to normal - as long as he is not allergic to desferal.
I wonder if L1 would be a solution for him? Or is he too young to take L1? I hope that the hospital will do a test to determine if he is allergic to desferal - I know that they can desensitize him to desferal as well.
Please let us know how it goes,
Sharmin
-
the doctor called me today and said its fine for his liver to be 285 and his hemaglobion 9.8 not to panic
so have given up
they said they saw higher liver test he should be ok
-
salaam
first of all i really appreciate you ,what you are doing. taking care of 9 kids with one thal major is great job , may allah give you best in this world and here after
i am a doctor treating thalassaemics in karachi, dear high ALT doesnt mean liver demage only ,there are lot of conditions in which it raised important is that when u stop exjade ,does it come down in two weeks or not, have you ever done his liver biopsy , how is cardiac status and general health.
erum minhas
-
I have talked about that type of iron overload with people who know lots about it, but I dont believe Aysam got it. The name is "Neonatal Hemochromatosis". Please, forget this word.
Best Wishes, Dore
-
Dear all
Finally i will be able to attend the Syrian conference. I will leave for Damascus, Syria next Thursday and will be back on Sunday the 3rd of May. You will find in the following links the final schedule for the patient and scientific program. Please feel free to post whatever you want me to ask about.
http://www.thalassaemia.org.cy/pdf/scientific_programme_FINAL.pdf
http://www.thalassaemia.org.cy/pdf/patients_programme_FINAL.pdf
manal