adopting a child with Thal.

 Hello,  My husband and I are considering adopting a little boy that has Thal.  We have read info about thal. but still have many questions.  What is a normal life expectancy?  When he does chelation at night, how is that administered?  Will he require a special diet?  Will he have pain from this, or from the meds. and if so, how is that managed?  Can he go to school?  Please tell us anything you think will be helpful in making our decision.  What is the hardest part about raising a child with Thal?  Thank you so much.

Kayte,
where are you located? the care for Thal patients vary by country so it will be helpful to know where you are. In US, with a good insurance, the condition is easily manageable - with regular transfusion, dilligent chelation and good diet , a child can expect to have a normal life and normal life expectancy. The child will be able to go to school and play all sports and probably miss only a day of school each month. Nowadays with oral chelation medicine, the overnight desferal injection is not needed instead the medicine called Exjade is taken orally . so, that also helps a lot in having a normal life. You should also read Andy's posting under Living with Thalassemia with the heading The modern Thalassemic: Living with the Intention of Staying alive and Sharmins's postign Under Thalassemia Major....These are very well written and captures all the things you should be aware off.

Andy's posting: http://www.thalassemiapatientsandfriends.com/index.php/topic,2751.0.html

Sharmin's posting: http://www.thalassemiapatientsandfriends.com/index.php/topic,4669.0.html


I have a thal major daughter and she is in 1st grade as a gifted student doing very well in academics even with missing a day once a month. She is in many extra curricular activities - swimming, ice skating, fencing, chess, lego robotics, music and dance. we are so busy every day that we forget she is thal major till it is time for the monthly transfusion. My example is to show you that a kid with thal major who gets proper tratment has a very normal life. Best of Luck in whatever you decide !

Hi,  Thank you for your reply.  Your daughter sounds wonderful.  We live in Ohio, and he would probably have transfusions at Nationwide Children's Hospital.  We have insurance that would cover his needs, however I was wondering what the cost of transfusions run?  Are they thousands per time? Also, the chelation medicine?  Your post gave me so much hope, as this seems so very scary.  Perhaps, it is only so scary as it is all new to me.
Thank you again for sharing about your sweet little girl.

Kayte,
i think with all the testing/Type & cross matching and various fees, it probably costs around 4K per month. Based on your insurance, you either have a small co-pay or some percent of the cost per month for transfusion. You should really check with your insurance to know what they will cover. Also keep in mind, an outpatient treatment is cheaper than in-patient treatment. For exjade, I am not sure what the actual cost is. we have a small copay for a 3 month supply. Again, you should check with your prescription provider to get a clear picture.

I wouldn't lie to you...Knowing about thalassemia and what treatments are needed was overwhelming at the begining for us as well. This support group... specifically Andy and Sharmin helped us a lot to prepare us emotionally. Once we got into a routine with transfusion, meds, yearly check up and so on, this is a normal routine for us and don't get us overwhelmed...we just plan ahead for everything and plan activites or vacations in such a way that we do not compromise her medical needs.

Kayte,
Are you hoping to adopt a little boy from China? Have you already seen his file?
We have one son adopted from China at age 3 (now 6 1/2) with beta thal major/transfused every 21 days.
We are in process to adopt a 19 month old little girl, likely also with beta thal major.
I have several friends (online, adoptive community) who have 2 kids with thal major, or are in process of getting their 2nd.

I posted a blog post about our experience and answers to many questions:
www.choosingthalassemia.blogspot.com
Transfusions are hundreds, not thousands. The annual MRI is thousands (with anesthesia) but covered by our insurance 100%.
I also want to say that it's only March and we have met our deductible and out of pocket max already for this year and now our insurance pays 100%. With 2 kids with thal we will meet our FAMILY deductible and out of pocket max very quickly.
Exjade is pricey. Call your insurance and ask how much Exjade 500 mg will cost you. It's a $40 copay for us (but I see the market price of $2000 on the invoice). Novartis and the specialty pharmacy you are assigned can help you get ScriptAssist (not based on income) to cover $100 per month. So that's right...we pay NOTHING each month. When we had a different insurance the copay was $120, so we paid $20 per month with the ScriptAssist.

There is not pain from thal. And during the transfusions once the line is in, your child can do most anything (nap, eat, play, watch a movie, do artwork).
Hardest part? Having to advocate all the time for the best care, for compliance with the 2012 standards, keeping up on things like that.
Yes, he goes to school! He misses 1/2 day of school every 3 weeks for a transfusion. This year that has often worked out over a vacation. He LOVES "new blood" days. Our best days. 1:1 time. Great nurses. Chocolate pudding (his highlight!)
No one would EVER know my son has thal. HE IS A TYPICAL 6 1/2 YEAR OLD IN EVERY WAY. We have a biological 6 1/2 year old without thal. They have the same energy levels. Sometimes our son will get a headache right before he's due, but if we transfuse every 21 days he's usually around a hemoglobin of 10 and doesn't get a headache.
We do have a group for families who are adopting a child with thal. You are welcome to join.
http://groups.yahoo.com/group/adoptingthalassemia
And we have a private Facebook page if you end up submitting a Letter of Intent to adopt a specific child with thal.

Nicole

Hi Nicole,
Yes, he is from China!  We have looked at his file, but of course some things are a bit confusing, because of the medical terminology.  Thank you so much for all the information you have provided.  I will be contacting
our insurance tomorrow, and now know the questions to ask.  Do many of the children from China have this?  Before looking at him, I had never heard of this.  It breaks my heart that he goes through this all alone.
Congratulations on your little girl!  I hope she comes home soon.  My husband and I will read your blog tonight.  Thal must not be so very daunting if many parents, you included, have gone back again.  Thanks again.

My 6 year old adopted son has Thal. Nicole is correct that most days we don't even think about Thal. For us the hardest part has been the lack of structure in his care. Our clinic has four Drs and each one says something different when we see them. I'm trying be become as educated as possible to make decisions for him. It hasn't been his treatments being a problem. And yes he goes to kindergarten full time. No one can tell there is anything different about him.

Jennifer

We have adopted a 5 y.o. child from China too! He's alfa thal with Constant Spring, then like a major...(a little bit).
really he's trasfused once every 60 days/75 days. it depend if he carrying home some illness from kindergarden....
Leonardo, he's a very playful child with high vitality. He goes swimpool two times a week and play with his brother every second....
Every trasfusion or Hb testing he "wins" a little model car and our home it's full!
Now leonardo is 6 y.o. and in september start school together brother (7 y.o.).....he learned "italiano" very quickly and when speaks all people  ....
LEonardo came from Guanzhou....and yours sons...where came from?

...my english ... 

My son was adopted in November 2011. He met us in Guangzhou but is from Longgang SWI in Shenzhen City.

Hi All,

We want to thank all of you for the support and information you provided us.  Thanks especially to Nicole.  We decided we wanted to adopt this little boy and on Friday told our agency and we have been matched with him!  Now all we have to do is complete all paperwork and go and get him and bring him home.  He is also from Guongzhou.  We feel confident we can handle this, but are glad we have all of you to help through the tough times.
One less orphan in the world today, praise God!

Hi All,

We want to thank all of you for the support and information you provided us.  Thanks especially to Nicole.  We decided we wanted to adopt this little boy and on Friday told our agency and we have been matched with him!  Now all we have to do is complete all paperwork and go and get him and bring him home.  He is also from Guongzhou.  We feel confident we can handle this, but are glad we have all of you to help through the tough times.
One less orphan in the world today, praise God!

Good work! 

I hope God continues to give hearts to make more and more people and parents such as you!

Everything shall be fine, especially with the quality of treatment being available today.

-P.

 

Good work! 

I hope God continues to give hearts to make more and more people and parents such as you!

Everything shall be fine, especially with the quality of treatment being available today.

-P.

Great ! You done best choice!
Guanzhou is very beatiful city, unlikely to Beijing.....we went in July and was very warm and humid...
is your child alfa or beta thal?

Hi,

Our soon-to-be-son has beta thal.  I look forward to seeing Guongzhou, and learning all about the region our son is from.  Exciting times!

Hi All,

We want to thank all of you for the support and information you provided us.  Thanks especially to Nicole.  We decided we wanted to adopt this little boy and on Friday told our agency and we have been matched with him!  Now all we have to do is complete all paperwork and go and get him and bring him home.  He is also from Guongzhou.  We feel confident we can handle this, but are glad we have all of you to help through the tough times.
One less orphan in the world today, praise God!

WONDERFUL NEWS!!!!!!
We submitted our LOI for our little 19 month old daughter. She's in Guangdong Province (Bao'an, Shenzhen City - same as our son was). We are already LID. Hope to travel in July I hope.
Nicole