My new born baby has possible Thal major

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My new born baby has possible Thal major
« on: October 29, 2008, 07:47:08 PM »
Hello all,
I have read the posting from Avasmom. Mine is the same case. I had a baby on 10/10/08 and 4 days later the lab results say he is a possible Thal major. We are getting the  testing done at Children Hospital of Philadelphia. I am devastated, but more than anything, I feel I dont know much about the disease. I have read in the posting about 'port', what is that? What is genotyping, do I specifically ask for that.
Is it very risky to opt for Bone marrow transplant. Is there any hospital , that can do a fetal selection based on a HLA match, if I conceive another child, (This is my first one).
Please give me as much info as possible.

Thank
Meena

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Offline nice friend

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Re: My new born baby has possible Thal major
« Reply #1 on: October 29, 2008, 10:18:32 PM »

Yes,

Ports have to be implanted by minor surgery. It then provides an access point to which you can insert needles painlessly.

It requires some maintenance in terms of flushing it so that blood does not clot in it and bacteria does not start to cultivate and eventually enter the body.

It's not suitable for hot climates as sweat may infect it (unless you keep cool and clean)
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here is the link to read complete thread about Port ...
http://www.thalassemiapatientsandfriends.com/index.php?topic=1890.0;highlight=port

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Quote
ABOTU GENOTYPE  :

here is a thread link please check the complete thread to understand it exactly ....

Children who receive multiple transfusions may over time develop sensitivity to certain antigens in foreign blood, and may begin have reactions to them or developing antibodies to antigens in foreign blood. 

Quote
http://www.thalassemiapatientsandfriends.com/index.php?topic=2231.0;highlight=genotype

Genotype testing entails testing to genetically find what antigens the recipient actually has, and also to determine the antigens which are absent.  This information is then used during the crossmatch process, thereby the donor and recipient are more closely matched on many levels.  This reduces the likelihood of reactions and antibody related hemolysis.  The recipient's body is likely to recognize the donor blood as it's own - because it is so closely matched.    This can also make finding a match much easier, because the blood bank will already know which antigens that the recipient has - therefore they do not need to be tested for in finding suitable donor blood.
This is the only way to protect your child from making multiple antibodies, and make the cross matching process easier.  This step can aid in preventing complications in the future.  It can also prevent transfusion reactions and antibody related hemolysis.
please check this thread as well , her is the link .
http://www.thalassemiapatientsandfriends.com/index.php?topic=1660.0;highlight=genotype+testing+sharmin

ITS SOMETHING RELATED TO BMT :

It's amazing that the father was a perfect match. I am very happy for your family. We have some other members whose children have also had BMT and some members who have gone through it themselves. It's encouraging to hear the success stories and to see the success rates climbing. In spite of the cost, BMT is becoming a more attractive option. The long term health care costs of a thalassemic will greatly outweigh the cost of BMT and aftercare, so if the cost can be worked out, it should not be an influence on the decision to have a BMT. With success rates topping 90% in Italy, there is much reason to expect higher success rates around the world. While we wait for gene therapy trials to really get moving. BMT is becoming an option that more people should explore.

I look forward to hearing reports on your son as time passes.

here is the a link below ,  please  check this link read complete thread to
understand exactly, about the BMT .
http://www.thalassemiapatientsandfriends.com/index.php?topic=2217.msg19809#msg19809


please check this post its about " Ideal age for a transplant " .
http://www.thalassemiapatientsandfriends.com/index.php?topic=304.0;highlight=bmt+90

i hope it will help you alot ...

Best Regards
Take Care
Umair

Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

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Offline Andy Battaglia

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Re: My new born baby has possible Thal major
« Reply #2 on: October 29, 2008, 10:51:03 PM »
Hi Meena,

First thing, you are in very good hands at Philly Children's. Dr Cohen is one of the top thalassemia specialists in the world and Children's is one of the Comprehensive Care centers in the US. If it does come to it that your child needs transfusions, do talk to them about genotype matching before the first transfusions as this can help to avoid many problems down the road. Ports are used in patients whose veins are hard to find to take blood and sometimes for desferal. They are not mandatory and you should not allow yourself to be pressure into having one implanted in your child. Many doctors will push for ports to make things easy but they are not necessary in most cases and can be a source of infection and clotting. BMT is an option. There are risks including risk of death, but success rates are climbing and it is becoming safer. It is a tough decision to make but it is best to decide this before many transfusions are given as there is less chance of rejection if it is mainly only the patient's own blood circulating. Matching can be done in advance through In Vitro fertilization or in the womb with HLA matching. This is often done to find a match for a BMT.

Keep us posted on how things progress. We will help in any way that we can.
Andy

All we are saying is give thals a chance.

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Offline Sharmin

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Re: My new born baby has possible Thal major
« Reply #3 on: October 30, 2008, 02:51:56 AM »
Hello Meena,

I wish your little boy all the best.  I am sure that he will do great with proper treatment, I am glad that you are going to be at a good clinic.  As per some of the advice we gave Avasmom http://www.thalassemiapatientsandfriends.com/index.php?topic=2230.0

I personally would not have a port put in my child.  My 10 year old does well without one.  Your doctor may offer you genotype testing, if they do not then you should ask for it.  You should have it done soon so that the information is available if you need to transfuse him in the future.   Genotype testing is a blood test, and the turn around for results is pretty quick these days. 

Wishing you all the best - I know that the first few weeks are very difficult after your child has been diagnosed.  Let us know if we can help you in any way during this time.  We are here to guide you through your son's treatment so you are not alone.

Sharmin  :hugfriend

Sharmin
Sharmin

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Offline avasmom

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Re: My new born baby has possible Thal major
« Reply #4 on: October 30, 2008, 03:02:58 AM »
Hello Meena,

I wish your little boy all the best.  I am sure that he will do great with proper treatment, I am glad that you are going to be at a good clinic.  As per some of the advice we gave Avasmom http://www.thalassemiapatientsandfriends.com/index.php?topic=2230.0

I personally would not have a port put in my child.  My 10 year old does well without one.  Your doctor may offer you genotype testing, if they do not then you should ask for it.  You should have it done soon so that the information is available if you need to transfuse him in the future.   Genotype testing is a blood test, and the turn around for results is pretty quick these days. 

Wishing you all the best - I know that the first few weeks are very difficult after your child has been diagnosed.  Let us know if we can help you in any way during this time.  We are here to guide you through your son's treatment so you are not alone.

Sharmin  :hugfriend

Sharmin

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Offline avasmom

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Re: My new born baby has possible Thal major
« Reply #5 on: October 30, 2008, 03:20:51 AM »
Hi,
This is Avasmom (actually her Grandma) Ava's mom is at home.  I have read quite a bit about Thal major.  This site has been a blessing.  It is nice to know there are people you can talk too.  My granddaughter was diagnosed with Thal Major last Tuesday.  Tomorrow my Granddaughter, her mom and I are going to Childrens Memorial in Chicago for a second opinion.  No the outcome will be the same, but Andy said that Childrens is one of the best hospitals for children with Thal Major and even recommended a Dr. for us.  Thanks to Sharmains input about Genotyping and phenotyping testing before transfusions, I have put together a list of questions to ask the hemotologist tomorrow.  Ava is 2 months old and is a beautiful baby.  I have come to accept that my granddaughter has Thal Major and my daughter and i will make sure that she is compliant with everything that she has to do.  My daughter and I will know more tomorrow after our visit.  I will let you know how everything goes.  Thanks to people like Sharmain and Andy, I feel better.

I will keep your baby in my prayers along with Ava, and Look forward to speaking with you again.

Dianne

Re: My new born baby has possible Thal major
« Reply #6 on: October 30, 2008, 01:31:19 PM »
Hi gmeena,
   Pl do see my reply to avasmom under heading nanuaru.Be strong and help your child to grow normally
             Keep POsting       
                                          father of  cutiepie

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Re: My new born baby has possible Thal major
« Reply #7 on: October 30, 2008, 01:41:06 PM »
Hi Gmeena ,
here is the link below of that post which ananu has mentioned above , soo please check it ...

http://www.thalassemiapatientsandfriends.com/index.php?topic=2230.msg19914#msg19914

Take Care
Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

Re: My new born baby has possible Thal major
« Reply #8 on: January 13, 2009, 01:46:35 AM »
I know I am replying late.  We just found out about this board and joined last week (I think). 

We take our 2 1/2 year old daughter to Children's Hospital of Philadelphia.  She started her transfusions in November and we are on a monthly schedule.  They have, from what we have been through, excellent care. 

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Offline Dori

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Re: My new born baby has possible Thal major
« Reply #9 on: January 13, 2009, 11:21:31 AM »
Andy (or any other member), blood transfusions do not start immediately after the thal baby is born?

I have had my (exchange) blood transfusion in 24 hours, so this difference confuse me a bit.
(But that stupid male nurse destroyed my own blood so it took 1.5 -2  years to find out what I had (pyruvate kinase deficiency))

Meena, welcome to the forum. I hope you find here the right information and do feel this as an informative home :)

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Offline Andy Battaglia

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Re: My new born baby has possible Thal major
« Reply #10 on: January 13, 2009, 02:47:38 PM »
Transfusions begin in thalassemia after the hemoglobin level has dropped. The amount of time this takes varies, as during the first 6 months, there is often enough fetal hemoglobin left to maintain a normal Hb level.
Andy

All we are saying is give thals a chance.

Re: My new born baby has possible Thal major
« Reply #11 on: January 21, 2009, 12:38:23 AM »
GMeena -
Just wanted to check in and see how you are doing.  Hope all is well.  We are due to go to Children's Hospital next week for our daughter's transfusion.  How is your son doing?  Are they monitoring him monthly?

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Offline Andy Battaglia

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Re: My new born baby has possible Thal major
« Reply #12 on: January 22, 2009, 05:08:32 PM »
Hi Meena,

Sometimes the hemoglobin drop is a result of illness, like colds or infections, but it will still require transfusions. Although they have said every three weeks, I am sure that can be modified if the post-transfusion drop in Hb is slow. If he maintains his Hb level after a transfusion, the next transfusion will not be so soon. But even if it is, there is no reason to worry. Chelation, when it starts, can remove whatever iron is built up by that point and in the meantime, I would highly recommend that you pay attention to what we advise about supplementing with antioxidants, as these can help prevent the damage that iron causes. This can make a real difference as you wait until the age when you can start chelation.

There is no reason to believe that he will need to transfuse anymore frequently than what you have been told. As I said, the Hb drop may be related to other factors and once he does begin regular transfusion, there is no reason his frequency would be more often, as long as antibody issues are avoided. Talk to your doctor about genotype matching of blood in addition to phenotype matching, as this can do much to prevent antibody reactions. This is especially important as the bulk of donor blood will be from different genetic backgrounds than your son, so the risk of antibody reaction is higher without genotype matching.
Andy

All we are saying is give thals a chance.

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Offline Sharmin

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Re: My new born baby has possible Thal major
« Reply #13 on: January 22, 2009, 05:47:24 PM »
Dear Meena,

My son received his first transfusion at 3 months of age.  His first few transfusions were given at a very slow rate because it is easier on the heart.  Because he was given a small transfusion his first few transfusions were given more frequently.  After than he settled nicely into a pattern of being transfused every 4 to 5 weeks until he was 8 years old.  As Andy has said - please have genotype testing because at 8 years of age my son developed the antibody and his transfusion scheduled went awry causing all sorts of problems that took us 2 years to deal with. 
 

Please keep us posted,

Sharmin
Sharmin

Re: My new born baby has possible Thal major
« Reply #14 on: January 22, 2009, 09:31:20 PM »
Hello Ocwoodmanp
We went to CHOP on 20th Jan, his Hb was very low 7.8.  They said he needs to be put on a schedule to get transfusion every 3 weeks.
WHen he began getting blood, he developed a fever after 40 ml and they stopped the transfusion and asked us to go back in 1 week to get the rest of transfusion. We are going back on 28 th. Which doc are you seeing. We are seeing Dr.Jennifer Mangino.


Andy sir,
If my son needs such frequent transfusions at  this young age, what will happen as he grows older? Will he need even more frequent transfusions.  How will  he be able to cope with it. The doctors at CHOP initially said, he will not be needing until atleast 8 months old.

I am really worried. Will he be able to take the iron overload.


Thanks
Meena

Meena -
We will actually be there on the 28th as well.  We are seeing Dr. Smith- Whitley and she has been wonderful with us.  We will, hopefully see you there.  We get there pretty early since we do everything in one day.  We live about 1 and 1/2 hours away so it is the best way for us. 

 

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