Update

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Offline Cari

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Update
« on: June 19, 2009, 01:40:50 PM »
Hi guys,

I wanted to drop a line to say hello since it has been a few months.  I am now 28 weeks pregnant and the baby is doing well.  My hemoglobin dropped to 8.7 in April - but it has gone up since then and at the last check 2 weeks ago, i was up to 9.9.   

This week, I went to Atlanta to visit Dr. Beaudreaux at the Aflac Childrens hospital.  She is wonderful and I wish i was closer to her so I could be in close proximaty to a doctor who is so educated about thalassemia. 

I learned a lot during my visit so it was really helpful but at the same time - I got a reality check. 

I already know that life is going to be a little different for my child ...but I didn't realize how much fear i had surpressed until i sat in her office and heard her go through all of my questions. I have been so strong about everything for the last 2 months and all of a sudden I entered a state of terror once again.

Anyhow, the doctor explained our type of Thalassemia was pretty severe.  My husband and i have the same mutation so the baby would not be producing any adult hemoglobin on their own. 

I guess even though i kept telling myself to prepare for anything (bad and good) once this baby was born..my subconcious was making me think more on the positive side - for example - 'maybe the baby would only have to go every 4-6 weeks for a transfusion' or "my baby will just be treated with exjade from the start'.

Reality Check - exjade doesn't seem to work for everyone....and baby will most likely need a transfusion every 2-3 weeks because they are beta-0.

Ofcourse there was more to it as well - I spoke to her about a lot of different topics...bloodbanks, yearly testing, iron chelation, food, and lifestyle as an teenager and then adult.  That was another reality check. 

All in all - everything was insightful and at the same time a little depressing. I have been a little emotional since then and I can't imagine what it is going to be like when I see this little one in my arms - so helpless and innocent...not knowing what the future has in store. 

I know i have to be strong in all of this but i feel so bad. I have to keep reminding myself it could be so much worse.  A friend lost her baby last month and she was at the end of her 7month..no explanation why.... i couldn't even imagine... 

Anyhow, I hope you and your children are doing well - please keep me updated with their progress every now and then...it REALLY helps. 

I will continue to keep you all posted - 3 more months to go!! 
 

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Offline Andy Battaglia

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Re: Update
« Reply #1 on: June 19, 2009, 02:40:00 PM »
Hi Carisma ,

For a real life account of someone who is beta zero, please follow the posts regarding Sharmin's son, who is beta zero and also an extremely healthy, athletic young boy who is the star of both his soccer and hockey teams. With today's treatment programs, it doesn't really make much difference anymore if a child is beta zero. Once the Hb is brought up to the required range, there really is not much difference. I believe that diet and supplements play a huge role in the health of thal patients and that this is where a big difference can be made in both health and quality of life. Yes, everything is overwhelming at first and each new step is a new challenge, but armed with knowledge, you will be able to confront each step in a rational manner. And yes, no chelator is suitable for every patient, but this is why there are multiple chelators and more research is being done on new chelators, at least three currently in various stages of development. The future for thals is far brighter than it was just a few years ago and each year brings new developments in treatment. I would also suggest you read the recent post from ingreece and make special note of what he said about "life happens". It's not all about thal. Thal is something to be attended to, but life goes on and thal is dealt with as part of the daily routines but it does not have to dominate. http://www.thalassemiapatientsandfriends.com/index.php?topic=2926.msg28750#msg28750

I am quite happy to see that your own Hb level has stabilized. This is good news and should ensure a normal pregnancy.
Andy

All we are saying is give thals a chance.

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Offline Zaini

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Re: Update
« Reply #2 on: June 19, 2009, 05:32:35 PM »
Dear Carisma,

My prayers are with you,i can understand your confusion and depression,when my daughter was diagnosed i used to think that may be if i knew about it earlier,i would have prepared myself mentally ,but now reading your posts i can imagine how difficult it must be.

Life might seem a lil bit different at first ,with a thal child,but the key is knowledge,once you understand and accept everything,life becomes as normal as it can be,i never look at my daughter and think "thalassemia" i always look at her and feel excited for her,she is doing great in studies,love to participate in extra curricular activities and is very good at them.I pray for her bright future as any mother would,and some how i feel and i am sure that thalassemia won't stop her from achieving any goal in her life.

You are lucky that you are in a country where all medical facilities are available,with properly maintained hb and on time chelation,your baby will nail every obstacle of life and will achieve every goal.

I know these are facts,and i also know that sometimes facts are not enough,and in emotional turmoil like yours,they definitely are not,but you'll see that with time and knowledge you'll be able to help your child and will be so happy to have him/her in your life.

Good luck,

Zaini.
^*^Xaini^*^

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Offline Sharmin

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Re: Update
« Reply #3 on: June 20, 2009, 05:03:05 AM »
My dear friend Carisma,

I can only imagine how you feel right now, getting ready to welcome your new baby and all of the joys that come with it.  At the same time you are faced with the uncertainties of thalassemia.  I have some words that I hope will offer you some comfort.  

As Andy and Zaini have said - you must remember that your baby is not thalassemia, thalassemia is something that your baby will have to manage just like asthma or anything else that people deal with.  Right now it must be hard to imagine, but once your little one arrives you will notice how normal he/she is.  EVERYTHING will be just like any other baby - except for the monthly visits to the hospital.  If your child's hg is kept at a good level, the slight drop at the end (hg of 95) will not affect your baby at all.  

My son is beta zero and we began transfusing him at three months.  During the first few years of his life he was able to go 4 or 5 weeks between transfusions and we would not notice any change in him before transfusions.   I am not sure why the doctor said that beta zero patients go in every 2 or 3 weeks   ???  When he had the antibody issue, at 7 years of age - we had to go in more often (every 2 to 3 weeks) - but now that the issue is controlled we are again going in every 3 or 4 weeks.  He is not affected by this very much.

We used desferal for our son, he started desferal at 18 months of age 3 X a week 10 hours a night.  Eventually he was quite used to it.  Today, most young children start on exjade and they do very well on it - there are some people who are an exception to this but most do very well on exjade.  There are also new chelators coming out and your child will have more choices than mine did.  

As Andy and Zaini have said - our thal children are displaying academic excellence and athletic excellence.  They are also happy, well balanced children.  Lil Z is very intelligent and she always places first on sports day at school, she is also a normal, beautiful little girl who is going to live a long, and healthy life.  Lil A also wins the academic excellence awards in his school, and even with an injured knee he ranked 2nd in track and field (high jump, long jump, running, etc etc).  He was considered an exceptional player for his hockey and soccer team - and most importantly he posses a zest for life that most people can only dream of.  He is at his friends birthday party today, tomorrow he will swim and play all day and he is grinning ear to ear.  This week he had his eye assessment - he is able to see better than the average person - the ophthalmologist told him to be a pilot because this type of vision is rare.  

What I mean to say by all of this is that when we look at all of the other things that describe our children and fill their lives the thalassemia becomes smaller.  Most other parents (as they don't know about the thal) tell us that we are very lucky that our children are so intelligent and good at everything that they do - and some of them say that perhaps lil A has some genetic advantage that makes him so good at everything.  Isn't that funny?  When he was diagnoses the doctor told us that our son was genetically disadvantaged.....

When I describe my son I say that he is happy, intelligent, sometimes stubborn, silly, funny, playful, and a clown.  I think of the soccer ball that he cannot put down - and the things he sometimes breaks when he kicks it in the house.  I think about him almost missing his bus in the morning, and forgetting to clean the milk mustache off of his face.  I think of his first words, his tiny feet as he learned to walk all over our first house.  I remember him holding his baby sister for the first time and singing "rock a bye baby" to her - and remarking that she was his baby.  I think his first day of school and his pink cheeks after a hockey game. I think of thalassemia too - but thalassemia is something that he has - he is not thalassemia.  

When I think of all of the wonderful things that these transfusing thal children are doing - I wonder - what is it that normal children can do that our thals can't?  In some ways aren't they doing even more?  Going to the hospital with a child that is walking, talking and often running - you walk past children who cannot walk, who cannot think, those who cannot see - those with life threatening illnesses - and then you realize that thalassemia is maintenance.  

During our last hospital visit, as I was scolding lil A for running to fast - I saw a little boy in a wheel chair - same age as lil A but unable to move his arms or legs.  His hair was like lil A and he reminded me of my son - however this boy had no control over his body, his facial expressions, or his eyes.  I let go of lil A and let him skip to the pharmacy - and my heart broke for the little boy and his mother.  I prayed that something could help that boy and thanked god for giving lil A everything that he had. 

I cannot say to take thalassemia lightly, and I pray for a safe and effective cure soon.  In the meantime, I feel that we as parents must learn everything that we can to keep our children very healthy - despite having this disease.  We can do this by means of proper transfusions, chelation, diet, excercise and supplementation.  I have said this before, but who is to say that our thal children cannot be healthier and have longer life spans - brighter futures than the children of their generation who consume pop, chips and watch tv for recreation?  Perhaps they are the parents who should be worrying....

I really hope that this helps to ease your mind my friend, I completely understand the emotional burden that you must be feeling right now.  I felt the same way when my son was first diagnosed - and I feel that way whenever I have a big appointment and I am given too much information.  Over time the bad feeling fades - as I see how infrequently it applies to my son.  

Take good care of yourself - I am very glad that your hg has improved.  I wish you a happy and healthy pregnancy. Please post if you ever have any other concerns,

Much love,

Sharmin
« Last Edit: June 20, 2009, 05:12:39 AM by Sharmin »
Sharmin

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Offline Cari

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Re: Update
« Reply #4 on: June 20, 2009, 04:21:03 PM »
thank you so much guys.  All of this helps so so much.  I am blessed to have access to this site and to be able to talk to you all when I get down. Thank you all for a true reality check :)   Sharmin - you really did put things in perspective with your story about lil A running in the hospital...wow. 

i think more than anything...it is the fear of the unknown that gets me each time.  It is so much clearer when you learn things from people actually going through this in real life than when you hear all the technical things. 

I have found someone here whose daughter has thal major and hope to meet her soon.  I'll keep you all posted. 

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Offline Manal

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Re: Update
« Reply #5 on: June 21, 2009, 01:21:04 AM »
Dear Carisma

I really can not add more than my friends did, but all i can say is that i pray that you have peace of mind. Also i do wish that you can learn everything that would let you avoid and learn from our mistakes. Keep readig and knowing. Togather we are  strong :hugfriend

manal

 

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