Change in treatment

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 

Dimple

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

Manal

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,

Zaini.

Thanks a lot Manal & Zani for your reply . 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

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

Hi Dimple,

Irradiated blood means that it was exposed to radiation to kill any existed bacteria or virus

Priya, should be on a
1- good multivitamin and mineral without iron or vitamin C.
2- Calcium, magnesuim (best dose is ratio 2:1)vitamin D, zinc, trace elemnts (you can find this all in the chewable osteocare)
3- Folic acid 5mg
4- B-complex because the amounts the mutlivitamin are usually small but you have to e sure ofthis first
5- Vitamin E, it works as an antioxidant and is so important to fight the oxidative stress on the body
6- IP6
These are the important daily supplements that are aMUST

But the usage of other natural supplements like wheatgrass,carao, aloe vera, resveratrol,... is also a good idea

Also i think that you should ask the doctor about the blood rate and the time of transfusion in order not to put extra pressure on the heart as Maha said



manal

Dimple,

Although you are transfusing Priya now,i'd suggest you try carao,it may help you maintain a bit long interval between her transfusions,and 16 ml / kg blood is just fine i think,why did your doctors transfuse her with 20 ml/kg?

Zaini.

Irradiation of our donor blood?? Seriously??! So far as I know they only prepare it this way for cancer patients. :s

What is cortisone?
What is lasix?
What is recormon?

@ the starter of this topic: it seems that I can not help you,but I definitely gonna learn a lot from this discussion!!! Muchas Gracias!!! Cuidate y Adios

Dore

Zaini would you please tell me what is carao and doest it really help to increase your interval btw blood transfusions?

Dimple,

Although you are transfusing Priya now,i'd suggest you try carao,it may help you maintain a bit long interval between her transfusions,and 16 ml / kg blood is just fine i think,why did your doctors transfuse her with 20 ml/kg?

Zaini.

Roztika,

You haven't read about our carao trial? You can read about that here in these posts

http://www.thalassemiapatientsandfriends.com/index.php?topic=1259.0;highlight=carao

http://www.thalassemiapatientsandfriends.com/index.php?topic=1791.0

Carao is a fruit,and what we are talking about is it's syrup,my daugher used to transfuse every three weeks few months back and i was really worried because her hb even after three weeks tend to be between 9 and 9.5,but after starting carao we gradually saw an increase in her hb,on last transfusion her hb after four weekd was 10 and we are thinking of extending her transfusions to 5 weeks and see if she can maintain hb above 9.5.

You can order it online from here

http://www.tropicalhealthfoods.com/

http://anemiaanswer.com/

Or you can PM our member Lloyd Standish ,he was the one who provided us Carao.

Hope this helps,

Zaini.

Zaini, thank you so much for this important information. I go to transusions every 3 weeks and my  hb is btw 8 and 9, which is low   I don't know what is happening but for the last years I keep that low hb level and have tried wheatgrass, IP6.. but unfortunately theu don't seem to help me.
Does this Carao really have imapct on the hb levels? Are there other people who are pleased with it
TNX a lot

Hi everybody

Thanks you all for your response.

Maha: Thanks a lot. I don’t know why, but from the very first transfusion she has given according to 20 ml/kg.I really don’t know about Lasix. I will check with her Dr. Regarding the amount and lasix In the next app.  Priya is usally given 500 ml in the time period of 3 to 3.5 hour which i think is really fast.
I am going to order oestrocrae chewable.

Manal : Thanks  for the list of supplement. What about Pharmaton Kidds? Do you think that it can be good multivitamins for Thal. And one more thing is reveratrol is good to give with transfusion.

Zaini: I really don’t know why the Dr. Is giving her with 20 ml/kg. I am going to talk  about this. I have already tried Carao with Priya but she  Can’t drink it at all, she just vomit. Are you giving Carao to little Z.

Dore: Muchas Gracias.  Recormon   is erythropoietin a type protein that sometimes helps in   anaemia. It can be helpful to thal intermediate in combination with Hydrea. Sorry, I don’t know about cortisone,Lasix.

With lots of love for our little soldiers.

Best Wishes

Dimple

Priya is usally given 500 ml in the time period of 3 to 3.5 hour which i think is really fast.

Hi Dimple,

How much does Priya weigh? In the US, the blood is infused at or around the rate calculated as follow: 4 x weight (ml/hr). In this formula, use weight in kilograms. So, if a person weighs 40 KG, he/she can be given blood at a rate of 160 ml/hr. That's 4 times 40KG. The first unit of blood is given slowly for the first 15 minutes (at a rate of weight (ml/hr), so, 40 ml/hr in the above example) to watch for any reactions, and the infusion rate can be increased after the initial 15 minutes to the rate calculated by the formula above.

Priya may have been given more blood (20 ml/kg) initially to get her hemoglobin to a normal range more quickly. The amount of blood may, however, be adjusted back to around 15 ml/kg as she starts maintaining a certain Hb level.

Regards,
SF

Lasix is a diuretic. It helps remove extra fluids from the body and is usually administered in small dose after the transfusion. I would recommend taking it only if Priya or anyone else being transfused feels heavy in the abdomen. If you feel fine and are able to get rid of extra fluids naturally, I would probably not take lasix. If Priya is getting 20ml/kg of blood, I would consider lasix post-transfusion just because it's a lot of fluids that she's taking in.. How old is she? 

How do you implement this tx rate Is their any sort of speed dial with rate attached (something like ml/hr)? Because here we just do it approx by seeing the frequency of the drops in upper chamber. But that is an approximate way of doing it.