Discussion Forums > Thalassemia Major
Change in treatment
priya:
Hi everybody
I am here after long time. I really missed you all a lot.
I am in touch with the forum, but yes I am writing after long time.
If you remember my daughter Priya is Thal intermediate. But in las 2 months there has been a lot of change in her treatment. Earlier she was on Hydrea( 1 capsule daily of 500mg) and Recormon injection (5000 U.I weekly), that was from Aug. 2007 to Feb 2009.With this she was maintaining her HB between 7 to 7.5, but it was affecting her growth. she already has some bone deformities on her face. And she had lots of ups and downs in her health during this period, like throat infection frequently, not feeling hungry, bad mood etc.
In Feb. 2009 she started with some throat infection along with fever which took long time due to which she started looking pale, very lethargic etc and we took her in emergency to hospital “ Instituto Nacional de Pedatria” there she got admitted. They did all her blood work and her HB was 5.3 and she got her first transfusion on 27th of Feb.
Than on 4th of March we had app. with Hematologist in the same hospital. There the Dr. told us that she need regular transfusion because Hydrea is not helping her a lot as she already has her HBF >96%. She gave us next app. for 6th of April. On 6th of April her HB was 8.8 and the Dr. again asked for transfusion and we did it same day.
I have some questions: ???
What care I should take while transfusion?
How can we manage Iron overloading?
What care I should take regarding alimentation?
Thank you all.
With lots of love :bighug
Dimple
Manal:
Hello Dimple
It is really nice seeing you posting again, many times i thought of you and Priya. Hope things are better now in Mexico and you are safe.
Actually you did the right thing choosing to transfuse her since her development has got affected and i hope that after regular transfusion,she will catch up again.
1- One of the important things that you have to make is to do a genotype test in order to avoid forming antibodies in her blood from transfused blood. This test will allow the hospital to narrow the match so the best blood is given to her
2- Blood should be filtered, washed and if possible irradiated
3- You should always moniter her during transfusions ( which is usually 15ml/kg ) for any change in attitude, fever, allergy and if any thing happened transfusion should be stopped. Here in my coountry, i noticed that they give cortisone injection before transfuion, i don't know how things go at your side
4- Chelation should start after 10 to 15 transfuions or when ferritin cross 1000 though it is thought now that it is better to start earlier
5- Being on a natural chelator like IP6 would be an excellent thing to do cause it will chelate the free iron radicales in addition to working as an antioxidant
6- Complying to chelation is what differniate a healthy thal from an non healthy one because iron overload is the main reason for almost all thal complications.
7- There are many chelators, desferal kelfer/L1 and exjade and i hope that exjade can be of an easy access to you
8- Starting the age of 10 years, regular ferriscan and T2* are recommended. Also regular growth monitering is recommended too
I am sure she will be perfect as long as you know how importnat chelation is
Dimple, are you supposed to stop the hydrea and the injections or not??
Good luck and keep updating.
Sharmin and Zaini, please comment if i forget to mention anything :wink
Manal
Zaini:
Hello Dimple,
Its good to see you posting again,Manal has covered pretty much everything,I'd highly recommend doing genotyping because i remember you are in Mexico right? and you are basically from India,so there are no guarantees but still i think if you are living in a country with different ethnic background,there would be more risk of antibodies due to biological differences,i am again saying there are no guarantees,people who get transfusions in their own countries can also face this problem,but i personally think you should be more careful since now you are going to transfuse Priya on regular basis.
About chelation,i think you should start it earlier then 10-15 transfusions,i am saying this because although Priya was an intermedia and was not transfused before,but intermedias tend to absorb more iron from the gut and ferritin is not very reliable source of knowing in intermediasthat how much iron is over loaded,have you checked her ferritin recently,so i personally think that you should start chelation earlier then that.Lets see what Andy or Sharmin has to say about that.
You should start her on all the supplements right away,it will help her grow normally.
Hope this helps,take care, :hugfriend
Zaini.
priya:
Thanks a lot Manal & Zani for your reply :hugfriend. Actually Priya had her BT yesterday, and i couldn’t reply you. Regarding swine flu everything is normal now thanks GOD.
Manal:
I asked in hospital they said that genotype is always matched. But i don’t know How I can confirm it?
Yes, the blood is washed & filtered. But I don’t understand what do you mean by irradiate.
Priya has received approx. 500ml which is 20ml/kg. But is there any importance of the rate by which blood should be transfused.
Regarding Chelation: Priya has received 3 transfusion. We are going to do her ferritin test on 13th of june & depending upon her reports we are going to start the chelation. Hope fully we will start with Exjade.
I have just ordered the IP6 from Puritan Pride because it’s not available in Mexico.
Yes, i have stopped Hydrea & injection. Write now she is just having Folic acid 5mg 1 tablet daily.
I read that Ahmad is doing better with Hydrea. Give my Love to Ahmad and best wishes for his health.
Zani:
Which are the supplements that you gave little Z and if i can give to Priya without consulting Dr.
How is little Z is doing?
Give Lots of Love to Little Z and best wishes for her health.
With Best wishes
Dimple
maha:
Hello Dimple
Glad to see you posting again. Its the best if the amount transfused is between 14-16cc/kg unless there are other issues. My son gets 15ml/kg spread over a period of 4hours. Is she getting Lasix injection during or before tx. Here Lasix is always administered when the amount transfused is 20cc/kg to reduce pressure on the heart. You should start Priya on a calcium supplement preferably osteocare straightaway if she is not already on one.Vit E is also reccomended and a good B- complex.
take care
maha
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