Thalassemia Patients and Friends
Discussion Forums => Thalassemia Major => Topic started by: avasmom on October 23, 2008, 05:59:31 PM
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hi all , i am a 22 year old new mom from chicago il.... i think it is great that there are forums out there with great people who take the time to help others in the understanding of things like this!
my daughter who is 2 months old today, was diagnosed last week with beta thal major. she has not yet recieved any treatment because she is ok with just her fetal hemoglobin for now. the doc said she will probably start recieving blood transfusions within the next 2 months.i have so many questions....with the chelation therapy; is it a painful procedure?will i have to like strap her down so she dont accidently pull the needle out while shes sleeping?and can u just take the tablets and not do the injections? what is all this i here about wheat grass, folic acid, zinc, what are all the vitamins that she will b taking? do any of u guys have ports?like for transfusions? if so are they painful? are they visable?can u swim? is it like a hole in the body?where is the port? do u have to get a port? what other medications do u have to be on?
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Welcome to the forum avasmom,
First of all, take a deep breath. I know it is a very difficult situation to be in, but things aren't as bad as it sounds. Today, the world has changed, so many medical advances have been made. The chelation therapy has changed. The chances of cure have increased. There are kids who might not even have to take desferal for chelation (Thanks to tablet forms of chelation like Exjade and Kelfer). The port is not something everyone would need, so relax and enjoy her right now. There are fetal HB inducer medicines in the market and some might help, so even though it is very difficult to relax, have faith and know that we are in a new generation of medical treatments
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Dear Avasmom,
Welcome to the site. As Narendra has said there are many advances in thalassemia treatment. My 10 year old son has thalassemia major and the treatment is much different for him than what was available for patients just ten years earlier. What is available for your daughter is even better than how my son has been treated.
We elected not to have a port and my son does very well without one. During the first two years my son cried while getting his IV for transfusion, since then he is very fine with it. It is so much better than going under general anesthesia to have your body altered - and there are risks associated with having a port such as infections and clots. Personally, I find that thalassemia does not have to physically alter your child so we don't want to do something that will necessarily do that. I trust that my child can learn to take a little poke once a month in order for him to be a very normal child every other day.
Chelation can take many forms. My son has been getting desferal, using needles and infusion pump since the age of 18 months. The first few months were very difficult, but now it is just routine. Again, over time he is slowly switching to oral chelation so his desferal is being decreased. As Narendra has said, your child may never require needles or pumps for chelation - you and your doctor can decide that when the time comes.
There are many discussions regarding vitamins and supplements that your child can take as she grows, we can help you learn about them as you go along. My son looks and acts like any other ten year old, he goes to school and plays various sports including ice hockey. Other parents can describe their children, and share the similar stories. If I knew then what I know now I definitely would not have worried so much.
Most importantly, your compliance with the treatment, transfusions and chelation will determine your child's physical well being. Your nurturing your child's understanding of the disease and teaching her that it never has to hold her back will determine her emotional well being. As Narendra has said, there are many medical advancements possible in the near future that will at the very least make management of the disease less tedious and potentially cure thalassemia all together.
In the meantime do enjoy your little one, there is every reason to believe that she will live a long and healthy life. If you have any other questions or concerns we are here to help you.
:welcome
Sharmin
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Avasmom,
PLEASE NOTE - have genotype and phenotype testing of your child before any tranfusions are done!! Skipping this step may lead to potential antibodies against blood and possible complications in the future. Doing these tests will protect your child. Please insist on having them done immediately.
All the best,
Sharmin
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That is excellent advice. If genotyping starts with the first transfusion, some of the biggest transfusion related problems will be avoided. The Exjade oral chelator is approved for ages 2 and up so hopefully you will never be faced with chelation by needle. Since you are in the Chicago area, you are near one of the Comprehensive Care centers, so your child can get the best care available. If you have not yet consulted with them, please do so before any treatment, including transfusions, are begun.
Alexis Thompson, MD
http://www.childrensmemorial.org/findadoc/doctor.asp?dID=1009
Sees patients at
Children's Memorial Hospital
2300 Children's Plaza (Lincoln and Fullerton)
Chicago, IL 60614
1.800.KIDS.DOC
Director: Alexis Thompson, MD
Contact: Janice Beatty, (773) 880-4618
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Avasmom,
You are welcome to read these posts from my 10 year old son. The antibody he is speaking of may have been avoided if we
had done the genotype testing that I recommended for your child. Otherwise (thank god) - he has done very well. His words will tell you what it is like having thalassemia better than mine will :wink
http://www.thalassemiapatientsandfriends.com/index.php?topic=1814.0
Best of luck,
Sharmin
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Hello Avasmom :hugfriend,
First of all welcome to the group :flowers, we are glad you found this forum... as for your cute daughter , I say dont worry about blood transfusions now I am a thalassemia major too and I recived my first BT when I was 4 years old but they knew I had Thalassemia major when I was unborn. And about the folic acid and zinc , these are to help us maintain healthy, no you dont have to strap your daughter down while she's asleep haha :laughno worries dear really I know it's hard and you are new to this but trust me she'll be fine :consolethe needle will stay in place once you've inserted it correctly and taped it.
about the port <<< It's un necessery in my point of view because it's for thalassemia cases with really high iron overload so dont even put it in your mind for now, the only thing you can do is what my mother did for me,
dont treat her any diffrent from the other kids, I became who I am because I had a great mother :heartpink who took care of me and now I know how to take care of my self ....
best wishes and hoping for a great future to baby Ava,
Mariam
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Hi Avasmom ,
:welcome to the Family ... keep posting :thumbsup
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your daughter is so cute you know what we need to be asking and doing peolpe around the world
is preventing any more children getting thala it is after all preventable
if we all get tested both husband and wife knwing we are both minors we should not even risk haveing a baby this
is my view in lebanon they test and if both have minor they dont get married we should have more awarnce to many peope have
thalass minor and dont even know it
my kids grandmother is 72 years she was tested and she found out she had minor one year ago so
all theses years she didnt even know
what thal ment
AWARANCE TOWARDS MARRIGE BOTH MINORS SHOULD BE a big NO
its isnt your fault sweety this has happend did you knwo you had minor ?
your dughter too cute all you can do is look after and manage her as best as you can and when you feel you are going insain this is the place to be chat and talk to people
this is what i do becuse you are not alone :hugfriend
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Hello Avasmom! :hugfriend
I am a Spanish patient of Thalassemia Major and I just want to tell you a little bit about my case. I am 26 years old. I was detected Thalassemia when I was 11 months old and I started Iron Chelation when I was 3 years.
My family refused the port when I was a child and I did it again when I was 18. I've been 25 years having the transfusions by the same 2 veins and I still have no problems with my veins. At the beginning, as you can imagine, you cry and you don't understand the situation but you soon get used to it.
About the iron chelation, don't worry. If it is similar to my case, your baby will probably start with oral chelation and, if she has to start sooner, you can be sure that it will only be a pair of years if not less.
What it is for sure very very important is to follow each of the steps that your doctor mark for your baby. I know that it is very difficult to stand the fact of hearing your baby crying but you must try to stay calm because if you can do it, you will transmit this calm to her.
I hope I have help you at least a little bit.
Best regards,
:bighug
Laura.
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Welcome to the forum.
Most parents worst thought is the iron chelation part rather than the blood transfusion. We were certainly very disturbed when we start reading about desferal and 10-12 hours of needle everyday for the rest of their lives. Our daughter is five now and doing just fine. She takes 375mg of exjade every morning for chelation. We gave her desferal for 40 months before switching to exjade. Exjade is available for patients since last year and is a great convenience, please note desferal is around for almost 40 years and has a proven record of success with thal patients. As a matter of fact, desferal has contributed greatly to the longevity of thal patients.
The truth is that desferal is not scary at all, there is some adjustment time but people do adjust pretty quick and some of our members are doing the pump chelation for 30 years and more. Besides, now oral chelation drugs such as Exjade and L1 are available, which are consumed once a day and that's it.
Chances are that your daughter don't have to go through the desferal pump chelation at all. Please note chelation usually starts after 10 transfusions, exjade oral chelator can be started as young as two years.
Second biggest fear is the mortality of thal patients, which now a days with medical advancement and the management criteria has improved to beyond 40. Infact, patients born today should enjoy good quality of life and not worry about the mortality.
The key to manage thalassemia (in my experience) is knowledge, get as much knowledge as you can and ask plenty of questions and you will see that the fear is gone. Some people still live in the past and may tell you a different story, don't listen to them, those days are over.
Please keep visiting the forum and ask questions.
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Canadian family :clap thats a very motivating post you are right
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I am so glad that there is more information available these days, even ten years ago when my son was diagnosed adequate information was scarce. The prognosis presented on the internet was so gloomy...I would spend hours reading on the internet :o afraid of what I might find on the next page and then feeling depressed about the outdated information that I had read :wah :wah :wah
Thank god those days are over, I hope that all parents of newly diagnosed thal children will receive updated information so that they have the courage and strength to take care of their families.
Sharmin
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Sharmin, unfortunatly there are still some medical sites that still write all these outdated infromation about thal. I don't know what to say, is this ignorance or indifference or what. Last week i read of of those sites and don't know howcome they are supposed to be ''medical'' that had very negative information to the extent that there was a phrase that said '' it is almost impossible to comply to chelation'' and imagine this site was last updated in July 2007 and written by a doctor.
What annoys me is that almost most of the parents search the internet to know about the disorder once their children are diagnoised because of lack of information and it breaks my heart if they are faced by such irresponsible and ignorant sites as the one i am talking about
Avasmom, thalassemia is difficult but with knowledge and determination it can be safely managed until one day will come the cure and i believe it will be soon.So have faith :hugfriend
manal
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Avasmom,
Your daughter is so precious :)
Sharmin
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Hi Avasmom,
I don't know wether to console you or give advice like others . My cutiepie is 16 months old and was diagnosed thl maj when she was three months old since then she is having reg. BT .Iron chelation has not yet started . she is quite bright baby and very naughty only time i remember about her condition is when we go for BT every month . PL do continously give your child folic acid and zinc drops after checking with your physcisian also calcium is very important for her growth .
Don't treat her any diffrently she needs both love as well as discipline for her good growth never discriminate her or favor with any of these two .
Keep POsting
FAther OF cutiepie
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I totally agree with you nanuaru. It is very very important to be treated as the rest of people. You can't imagine how it is to feel and to be seen like a normal person among the rest and not someone different to whom the rest have to take care of. That helps the patient to grow up psychologically healthy, what is very important to assume the disease and to face the world when he reaches the puberty and then in the adult life.
Kisses,
Laura.
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Welcome Avasmom and congratulation for your wonderful, cute baby.
:congrats
Even if it is shocking for you now to know thal your little angel is a thal, and your heart is breaking because of the sorrow, I can assure you that there will be also a lot of day full of joy, gladness and proud because of her. Your baby can grow like each other person, she only has a little handicap consisting in transfusion and later also iron chelation. But she can reach a lot of goals in her life if you will be there to transmit her love, self-assurance and self-reliance.
God bless you
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Welcome Avasmom and congratulation for your wonderful, cute baby.
:congrats
Even if it is shocking for you now to know thal your little angel is a thal, and your heart is breaking because of the sorrow, I can assure you that there will be also a lot of day full of joy, gladness and proud because of her. Your baby can grow like each other person, she only has a little handicap consisting in transfusion and later also iron chelation. But she can reach a lot of goals in her life if you will be there to transmit her love, self-assurance and self-reliance.
God bless you
Well said Gabri :clapcheergirl
Zaini.
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I am happy to report that Ava has visited Chicago Children's Hospital and will be a patient of Dr Thompson. CCH is one of the Comprehensive Care centers in the US for treating thalassemia and Ava is in very good hands there.
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Ava's family,
I would also like to congratulate you, your beautiful little baby will be getting the best care possible.
When parents first receive a diagnosis of thalassemia for their child, they begin to mourn a loss. They mourn the loss of a normal and healthy life for their child. As a mother of a thalassemia major child, let me help you realize that this is only a perceived loss - in reality you and your child can have the life that you had hoped for for your child. With proper care, she can do anything that you give her the confidence to do - maybe even more.
Thalassemia is less well known and understood in society than other chronic conditions, therefore we are afraid of what it means to our lives. One day, once you settle into a routine of transfusions and chelation - and your little girl reaches all of her milestones one by one - amazing you all the while - you will find yourself saying "is this it? this thalassemia thing?" Just like people deal with asthma, diabetes or any other chronic condition - you can live with thalassemia. Remember, Ava is NOT sick - and she needs the same encouragement and discipline as any other child. Don't let thalassemia define your child, let her personality and accomplishments define her. From reading your posts I know that Ava is part of an amazing family - between your attitudes and the wonderful hospital she is going to be treated at - Ava's future is very bright.
Congratulations on your beautiful little girl:):) :congrats
We are all here for you if you have any questions along the way - we feel fortunate to have you as part of our family:)
Love,
Sharmin
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Congratulation!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! to the Avas' family, :flowers :flowers :flowers :flowers
A child birth is a gift from god. take one day at a time enjoy the blessing.
With good management this child can become the leader of her country.
Remove fear from your heart and your life and your childs' life with be flowing with happiness.
there are always someone worst off than us.
Good wishes from Kathy
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:biggrin :biggrin
i just wanted to thank u all for your input it has been so helpful . i appreciate each and every one of u for taking the time to look over my post,and taking the time to answer. you all have been more helpful then u will ever know,
ANDY, i just wanna thank u from the bottom of my heart for informing me about childrens memorial hospital!!!!the hospital i initially found out my daughters diagnosis at was so negative, they had no bedside manner, they were tellin me we will start transfusions at 4 months , she would be on the chelation pump until she was 2,they wanted her to go into surgery to get a port,and that she would have to get a liver biopsy every two and a half years , the doctor was getting frustrated with my questioning and i left that hospital devistated!
when u told me about childrens i immediatly looked into it they have a wonderful program, and wonderful staff of people who specailize in thal!!!!!.no port,no chilation pump,no set date for transfusions, when her level starts to drop we will begin the transfusions.when she is 2 she will begin oral chilation, no liver biopsys ever, they can messure the iron in the liver through mri, they were so informative and they also have genetic counseling so that me and my husband can have another baby, that will not carry thal , and at that time, they will beable to use the new babies cord blood to give ava what she is lacking , and hopefully cure her, i now strongly believe that my daughter will not live her whole life with this disease , they are doing so much research and i believe a cure is near.i left that hospital feeling great!!and i just want to thank u again , because with out your one little comment my daughter would have been so much worse off!!you are truly a life saver!! god bless u and thank u again!!!!!
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A huge relief for us too. Getting through the gloomy outlook itself is a big move. Very glad everything turned out so well. I hope more people visit this site to get the support and less people get doctor's like the one Ava got when she was diagonised. That is one thing, I thought would never happen in US, but to my dismay, it also happens here in USA, where doctor's are not up to date on what new developments are their in treatment and cure.
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The value of being treated at one of the Thalassemia Comprehensive Care centers or one of their satellite hospitals, or at the VERY LEAST, an annual visit to one of the centers, cannot be emphasized enough. Being treated at a hospital that understands thalassemia and its treatment will make a huge difference in the quality of life of thalassemia patients.
We can and do make a big difference in many lives.
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Goodmorning to everyone,
It made my day reading the good news from Avasmom,
I am happy for our new little member of this site,It sound promising and i'm so glad that she has received good medical care.
There is hope for all, we need to "believe"
I would also like to thank Andy, Sharmin,Manal and Zaini :hugfriend :hugfriend you are the pillars that keep me strong,
I love you guys.I'm lucky to be understood by you.You are all very special, kind, human-beings
It's another days, I'm looking forward for good things to enter mine and everyones" life
Always Kathy
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To Avasmom
I am so happy that you finally feel safe and know your steps, good luck in everything and please keep posting :hugfriend :goodluck
To Kathy
You are welcome my friend, you are so dear to my heart :bighug and believe me you have made a lot of difference in many situations in my life more than you can imagine. Thanks
manal
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Avasmom,
We are so glad that you found us! Andy has changed a lot of lives and the guidance he gives us is truly lifesaving. Honestly, the center at which you are seen determines your's and your child's quality of life. We are all happy that you are in good hands!
Make sure you get that genotype testing - which prevents that only complication that we can foresee. Everything will be great. :goodluck
Kathy,
Thank you for your kind words and encouragement:) We all adore you and thank you for all of the support and wisdom you share with us all.
Take care,
Sharmin
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Avasmom,
I can actually feel your relief :hugfriend i am happy for you and for Ava, i wish i could hug her and tickle her :rotfl i love small kids laughing and smiling.
Kathy,
Awww.. :wub :wub i am blushing now :rotfl.
You are so valueable to this forum my dear.
Zaini.
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Hello avasmom,
your experience is very similar to ours...as Andy has rightly said the importance of being seen at one of the Thalassemia Comprehensive Care centers....we go to Boston Children's now and our entire outlook towards Thal changed after that. Also these comprehensive centers have good support structures for the entire family.
In addition, can't say enough about support from Andy and this group....Always there to lend support and advise. Thanks to Andy and the entire Thalpal group.
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It was so heartning to know that you have overcome your grief . may god bless the child. If you don't mind let me advise u one thing on day of transfusion i get very upset cry a lot curse my self for condition of my daughter but in the end it's the smile on face ofmy daughter that help me forget everything ang gives a fresh zeal to fight out . My advise is if u feel like crying cry out curse ur self this would lighten u up and by end of day u'll also enjoy her smile
Next mth I'm taking her for HLA typing with her elder sister pl. pray for her that it matches perfectly. otherwise I'll have to go for stemcell purchase which in itself adds up to the cost of treatment.right now I'm trying to raise around Rs1 milllion which is around 50K $. for her treatment and of which half I've managed to raise .God will certainly help me and my child. :biggrin :biggrin
i just wanted to thank u all for your input it has been so helpful . i appreciate each and every one of u for taking the time to look over my post,and taking the time to answer. you all have been more helpful then u will ever know, so heartning to
ANDY, i just wanna thank u from the bottom of my heart for informing me about childrens memorial hospital!!!!the hospital i initially found out my daughters diagnosis at was so negative, they had no bedside manner, they were tellin me we will start transfusions at 4 months , she would be on the chelation pump until she was 2,they wanted her to go into surgery to get a port,and that she would have to get a liver biopsy every two and a half years , the doctor was getting frustrated with my questioning and i left that hospital devistated!
when u told me about childrens i immediatly looked into it they have a wonderful program, and wonderful staff of people who specailize in thal!!!!!.no port,no chilation pump,no set date for transfusions, when her level starts to drop we will begin the transfusions.when she is 2 she will begin oral chilation, no liver biopsys ever, they can messure the iron in the liver through mri, they were so informative and they also have genetic counseling so that me and my husband can have another baby, that will not carry thal , and at that time, they will beable to use the new babies cord blood to give ava what she is lacking , and hopefully cure her, i now strongly believe that my daughter will not live her whole life with this disease , they are doing so much research and i believe a cure is near.i left that hospital feeling great!!and i just want to thank u again , because with out your one little comment my daughter would have been so much worse off!!you are truly a life saver!! god bless u and thank u again!!!!!
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:biggrin :biggrin
Nanuaru i hope that everything goes well and that there blood types match perfectly u and ur babies will be in my prayers. so nice to hear that people are out there willing to help people like me and u and the rest of these thalpals,i agree that god is looking over u and ur babies and that your issues will be solved within time.try to stay possitive and may all positive things come to u , happy holidays
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Avasmom,
I hope our beautiful little Ava is doing very well:)
Best,
Sharmin