hi, i'm new

hi, my name is lily i have a 17yr old son with thall major. he gets transfusions every 4wks. he has a pretty complicated medical history, unfortunately all related to the thall.  he's had his spleen, gallblader removed. he's had a bone marrow transplant which failed after 6mos. he's had open heart surgery due to a blood clot to the heart, caused by a med-a-port. he has a pretty bad liver from the iron overload, has biopsys once a year, has delayed pubirty growth, and has also developed diabetes 2yrs ago. i'm happy to come across this website, i've never had anyone to talk to about thall. that can actually understand, and comprehend what we as parents and patients really go thru.  people just don't get it they see my son who other than being small for his age, looks normal, they just don't get it.  we live in fresno ca. and thall is not common here, i only know of one family with thall and they're mong nationallity and the parents don't speak english. i hope to get to know some of you and share some experiences, especially from other parents aswell as patients who have some of these medical problems and may be able to give me some tips on how to deal with them.  i also have one question. my son wants to travel to argentina ( my home country ) i'm worried about blood transfusion in another country, are doctors there familiar with thall? do they understand the disease? my son has never recieved any treatment outside of the us so i'm a little worried.  does anyone have any info regarding thall in argentina?
p.s
sorry for such a long posting

Hi Lily

Welcome to the family. Here, everyone seems to have a big heart. Try to contact this Thal Association in Argentina.

Dra. Aurora Feliu Torres
Hospital de Pediatria Dr. JP
Garrahan
Haemato-Oncologia
Pichincha 1850
Buenos Aires
Tel: 0054-1-941-8532

Also, contact Eva Chin at the Cooleys Anemia Foundation in NY. She is very helpful.
330 Seventh Avenue, #900
New York, NY 10001
(800)522-7222

Regards
Bharat

Hi Lily,

Welcome to our group.  :smile2

I was wondering if you're ever taken your son to the Children's Hospital in Oakland. It's not far from Fresno and has one of the top thalassemia centers in the world. It is highly recommended that you visit there. The program that Dr Elliott Vichinsky has established there is a very well coordinated comprehensive care plan for thalassemics. Considering all the problems your son has had, it is important that he is on a good plan that includes the nutritional regimen needed to combat the stresses of thalassemia.

Northern California Comprehensive Thalassemia Center
Children's Hospital Oakland
Department of Hematology/Oncology
747 52nd Street, Oakland, CA 94609
Phone: 510-428-3885 x4398
Email: info@thalassemia.com

Hey Lily

Welcome to our big family. (love it our family is growing by the day)
Here you'll find,  as you have seen already lots of helpful people with the best info for you and your son.

Being a thal major myself and I travel alot overseas, I would advise that he makes contact prior or once he get to his destination with the treating clinic. He takes papers with him explaining his health issues and a copy of his lastest blood results and last but not least to enjoy his time over there.

Thalassaemia is a disorder that we have to take control of and not allow it to control us. Therefore you do what you can when you can and live each day as if its your last. There is no point saying I will get around to going there or doing that - You plan to go overseas do it enjoy it and experience it to the fullest.

Regards Miaki

Hi Miaki,

Thanks for the advice.

I agree with you, I feel that all thal patients go thru so much on a daily basis, you should all enjoy life to the fullest. Don't limit yourselfs due to this horrible disease.

As a parent I find it a little hard to let go and allow him to do his own things because he's had some complications in the past, so I'm always worring about when the next bad thing is going to happen, but I realize he needs to live life and not live in a cocoon.  Considering his age, he has been pretty responsible with all his meds and things that he needs to do daily to stay healthy.

I do have a question for you, or anyone reading this.  Have you ever gotten a transfussion in another country?  That's my biggest concern with him.  He's been treated in the same hospital his whole life.  Has never gotten blood anywhere else.  I don't know if anyone else is also like this, but he also no longer has a blood type, he is undetermined and has also gotten reactions to blood products in the past and has recently developed antybodies which I don't quite understand but I know that he's difficult to match.  Any advice on this?

I also want to mention how happy I am to find this site, I have been reading a lot of the previous postings from everyone, It's encouraging to see that we are not alone, that there's so many people that go thru the same struggles and can understand.  I was not aware there was so many people out there with thal.  For the first time in my son's 17yrs of life I feel like we are not alone.  I find everyones comments on different subjects helpfull, I'm now realizing there's so much about thal that I never knew, so thank you to everyone.

I've read some  postings regarding the wheatgrass, I want to try it on my son can anyone tell me if it contains sugar?, my son is diabetic.

Take care,
Lily

Hello,

You should not be much worried about TransX in other countries as almost every country now has some TransX services. ( I doubt you'll be going to some extreme poor or war-struck area )

I had been getting TransX in Saudi Arab in my child hood and every year when we came to Pakistan in the Holidays; I got TransX from Fatmid Foundation in Karachi. At that time it was the only dedicated Thal. organisation in Pak. and Pakistan was not much developed at that time (Mid 80's to 90's) compared to now where we have Thal. center in every major city.

So you should find a Thal. center where ever you want to go in developed countries (or at least a hospital with TransX services and doctors who understand the requirement of Thal.)

As far as Wheat Grass is concerned; you should go for the WG spray or tablets to ensure that you don't get excess iron or carbohydrates(which break down to sugar) that may be present in the fresh stuff. Though I'm not sure if Carbohydrates are present in such a early stage of wheat

Hi Lily,

I've had blood transfusion in other countries and never faced any problems. Also I know other patients from my country that have travelled to other parts of the world with no difficulties at all.

As I mentioned before in my previous posting, take all necessary documents with him explaining his past history, take a copy of the lastest blood results and he should be fine. If you have contact details of the clinic in the country that he is going too, perhaps if you can give them a call before he leaves to ensure he takes appropriate documentation, also to mention about his reations and the antibodies.

I hope this info helps. All the best

Kind regards Miaki

Hi Lily, welcome to thal friends community

Well its intersting to hear about you son, reagrding to get blood transfusions from other countries, its important to know how far the blood is safe. I mean there are WHO mandatory requirements to make blood safe from vein to vein. However from country to country there are changes and availability of resources. Therefore its important to know which country and which centre you might get treatment.

Since your sone had complications and failed MBT, I think its very important to know he should get immuno phenotyped blood. Therefore get proper information from the treating doctors whether he required immuno phenotyped blood or just simple transfsuion.

Wish him Good luck and enjoy travelling

Mustho

Hi everyone,

Thank you all so much for all your advice.  I can't express enough how happy I am to have come across this site with such wonderful people.  All your experiences are an enormous help to me.  Being able to ask questions and advice from people that have first hand experience is a godsend for me.

As an overly protective mother, I am now seeing that having thal doesnt mean I have to keep my son in a cocoon.  I try to allow my son to enjoy life and give him freedom but I know that I always put limitations to what he can do.  I am learning from all of you to let go of some of my fears with precaution of course but it's time for him to do the things that he wants to do.

Wow, I no longer feel alone in this journey, I wish all thal patients and parents around the world would find this site.

I'm interested in knowing your different ages and what have been your struggles due to thal?  What if any medical complications in your life?  Has anyone developed any other chronic illnesses from this?  My son now has diabetes as well as hemachromatosis.

Take care everyone,
Lily