Thal in Teens

Dear friends,

Pleasant day to all here...I am so overwhelmed with all your postings, the information, the caring, the love, the support, the togetherness, the spirited exchanges  that it has truly prompted to me to share my concerns with you all...

Many thanks to Andy and Danielle for this platforum....to share...to give..to listen...to take..
very grateful...!

To briefly, introduce myself...I am Roopa from Bangkok, Indian origin leading a great life with a very loving family...however, the bright, red comfort carpet under my feet was taken away..when I gathered that my 15 yr daughter needs blood transfusion every 30 days...She is Beta-Thal-Intermedia...so far, she has had only two...I am dreading here thinking abt whats in store ..the quality of life...medications, treatments etc...She otherwise leads a normal life, school, friends..etc...but lately, we have asked her to cut down on her physical activities, sports in school etc..We are consulting a very good doctor here...She was detected when she was two, but it seems to be taking a toll now when she is growing up...and in her teens now...

Through this forum, I would like to meet, talk, share similar concerns, specifically caring for teens...any information is valuable/important to me at this point of time...needless to say, the comforting words that my daughter would be fine...
Also, would like to know if there is  anyone from Bangkok here...

Look forward...I leave my best wishes, prayers for all those who are going through similar pains and concerns...Liffffffeeeeeeeeeeeeeeeeeeeeeeeeeee!!!

Love..

Roopa

Hi Ropa,

Like I said in the other post. Thal. Intermedia is more easily managable compared to Thal. Major. Your daughter will live a normal life if all her blood counts and Serum Fertin are kept in check. Ask your doctor about the HbF inducers and hopefully she will be able to maintain better Hb and avoid Tx as much as possible.

Hello Roopa,

Welcome aboard,rest be assured that you have found a very knowledgeable forum ,i am sorry i don't remember if there are any teenage members here,but i think there would be,or at least moms with teenage kids,but as Sajid told you thal intermedia is much more manageable then thal major, my daughter's case is different bcoz she is a transfusion dependent intermedia,due to her wrong diagnosis in the beginning,anyways who can fight with fate,i am happy that she is growing well ,and ofcourse we have to fight for her chelation,you might wanna look for some hb inducers,keep her ferritin and all blood counts in check,i hope she'll achieve anything she wants for herself.

Wishing her luck and joy,

ZAINI.

Dear Sajid and Zaini,

Many many thanks for replying to my mail...and thanks so much for all the encouraging words...I already feel at home...

Zaini, how old is yr daughter?? She will do well..Inshallah!..keep faith...!! Our prayers are with her...

Please could you help me with the following:
1. What is "transfusion dependent intermedia"..Ziani's mail...? My daughter is advised transfusion every 30 days...
2. Is there any chance of intermedia Thal becoming/turning into a major thal condition..?
3. My daughter, Ritika's HB count is 5.3 and Ferratin is 70mg/ml...any advice..?
4. She has just started to take Defiriprone..but there is no change in the urine colour...
5. More abt Wheat grass...my doctor has not suggested wheatgrass so far...I am checking if I can get the same in Bangkok...I gathered from this site that it is a HB inducer..

Look forward...and thanks so much for your time...

Roopa

Hi Roopa,

Transfusion dependent intermedia means the patient must take regular transfusions. Once a month would be in this category. Once a patient becomes transfusion dependent the treatment does become much the same as for major, with regular transfusions and chelation, along with the regular testing majors would have. One advantage intermedias have over majors is they do not have the damage done to their glands and organs during development, that majors experience if iron overload from transfusions occurs. Intermedias often transfuse less often than majors so the iron overload is more easily controlled through chelation.

Your daughter's hemoglobin is very low and as long as she cannot maintain an Hb of at least 7 she will need transfusions. Deferiprone is a very good chelator but white blood cell counts have to be checked at least once every two weeks. Our member, Ashish has recently observed his 20th year of using deferiprone. You would not see a change in urine color in a patient who has only had a couple transfusions because iron overload has not yet happened. The drug will prevent iron overload from occurring if the patient complies and takes it as prescribed.

If you can't find wheatgrass extract or tablets you may want to check Dr Reynold's site. To find a source go to

http://drwheatgrass.businesscatalyst.com/wheretobuy/Default.htm

Following a good health program can be of help. A good diet and the necessary supplements can improve oxygen efficiency overall health. See our thread at http://www.thalassemiapatientsandfriends.com/index.php?topic=118.0

Exercise is also important so don't cut back too much on her activity. She will need to become a judge of how much activity she can handle with becoming overtired.

Hi Roopa,
     Welcome to this site. We are all here to do whatever we can to help each other. I also have thal intermedia. I am 56, and still working, and leading a good life. I started regular transfusions about 4 years ago and it has really helped me. (I have old posts in the intermedia section.) Your daughter will have a good life, too. There are so many new medical things starting to happen. Hopefully your daughter will have more choices for treatment in the future. Her hemoglobin is pretty low. I think it is better to keep it higher because it is easier on the body. The iron has to be dealt with, but having that hemoglobin higher makes life better.
     It's good to talk to you. Say hi to your daughter. Jean

Hello Roopa,

Your daughter will be fine. Just take care of her health and she will be just fine.

Ferratin is 70mg/ml...any advice..?
She has just started to take Defiriprone..but there is no change in the urine colour

I am a little surprised that she is taking Deferiprone. Isn't the ferritin in normal range? I thought Iron Chelation should start when Ferritin level's have reached 1000 (which happens round about when the number of transfusions are around 15 to 20).

I think it might be to control the ferritin now itself, but isn't this too low a ferritin level to start chelation?

Many thanks Andy, Jean, Narendra... I have noted down all your advice, information and will be approaching our doctor on sunday...esp. for the supplements..

We will go for another ferritin test this weekend...will keep you posted...

Thanks so much for all yr support and am overwhelmed with all the positive outlook...it will keep me going...

Look forward to talking you all more...

Roopa  in better spirits already...also, its friday...

Hi Roopa and welcome to the site. I am happy we have a member who is a mother of a teen. i am sure both of us will benefit a lot . Good luck in your visit and keep us updated

Manal

Many thanks Manal....I feel really good being here....loads of information...whenever I find the time, you will find me here reading posts from other members...

Manal, how old is yr daughter..?? My daughetr is 15 and I worry abt her quality of life ... will be meeting her doctor this weekend...will ask abt supplements, inducers..wheatgrass etc...I feel like an empowered mom!! 

Take care...have a nice weekend...chat soon..
Roopa

Hi Roopa,

It's good to see you in high spirits  ,Manal's son is 5 year old and my daughter will be 7 years old in coming february,and really i don't know how i missed the point about her ferritin,Narendra is definitely right,her ferritin is too low to take defriprone,check it out with your doctor,her ferritin is in normal range for now.

Wishing her luck and joy,

ZAINI.

Dear Zaini,

I try to think positive and encourage my daughter to feel the same otherwise everyone at home will be spirit-deficient...which will not help anyone..hence, the cheery attitude...

I will certainly discuss with my doc abt the Ferratin count.  I am so grateful to Narendra to point it out to me...otherwise I would have never known..thanks to you too ..Zaini...

A good friend of ours have got this information for us...can you/anyone throw any light on this?

-------
It seems the University of Caligari is known to be world's no 1 to handle this (Thal) problem. They have a specialist Hospital to handle only Thalassemia. Prof. Galanello is the director of this specialized hospital.

Check the following web site for more infor:
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=370888
http://jmg.bmj.com/cgi/content/abstract/15/6/443
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Also, Zaini, what are the must-give vege's/fruits that may help as HB inducers..? or to reduce iron content..besides tea..?

I see your daughter's picture...she is very cute with her ponytail....Our prayers are with her...she will do well..don't worry...

Roopa

Hi Roopa,

You can give anything to you daughter as long as it doesn't contain too much Iron.

As for Hb inducers; Wheat Grass has earned some respect. I believe that you can find WG extract in either pills or inhaler form in Bangkok which is easier to consume than the unpleasant drink as the Far Eastern countries are known for their herbal knowledge and nowadays implementing them in a scientific way (like concentrated pills etc) rather than the traditional way.

Furthermore you can ask Manal about Resveratrol and Hydroxyurea as she is giving them to her son who is also Thal. Intermedia. Hopefully these might work and get your daughter off the TransX.

Sajid,

I remember Andy once posted a link about a database containing information about nutritional values of food,can you post it again ?

ZAINI.