Thalassemia Patients and Friends

Discussion Forums => Thalassemia Intermedia => Topic started by: Lokkhi maa on December 07, 2015, 04:40:12 AM



Title: Chelaton Therapy
Post by: Lokkhi maa on December 07, 2015, 04:40:12 AM
Hello Andy,

Friday my daughter has taken transfusion and that was 15 times.Yesterday we have checked her HB and ferrittin level.

Rerport:

HB 13.10
Ferrittin 926.20


In Bangladesh Asunra is available and I want to start her chelaton therapy in a low dose.As I earlier inform she is taking phenobarbital 5 ml twice a day for seizure treatment.She is now 26 months old and weight is 13.5 kg.

Please suggest  :)


Title: Re: Chelaton Therapy
Post by: Canadian_Family on December 07, 2015, 10:39:39 AM
ferritin is not a precise test for iron accumulation. It is an indiactor at best. One should not rely on the ferritin levels alone. The ferritin levels are impacted by many reasons.

I know there are standards dosage for asunra based on the body weight (20mg/kg or 30mg/kg) of a child. I would consult with the doctor for appropriate dosage.


Title: Re: Chelaton Therapy
Post by: Bostonian_04 on December 08, 2015, 12:20:27 PM
Agree with Canadian Family. Please consult with your doctor before starting chelation. Also suggest a baselien MRI for liver iron before starting chelation.


Title: Re: Chelaton Therapy
Post by: Andy Battaglia on December 08, 2015, 06:10:49 PM
Lokkhi,

Your child has had enough transfusions to consider beginning chelation. Your doctor will have to prescribe this. Because your child has shown other sensitivities, I suggest that you begin chelation very slowly. I will be happy to help you with this.


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on December 10, 2015, 05:33:21 AM


Hello Andy,

Last night we discussed with doctor about the report.He advised as ferrittin level staying within 1000 so not to start chelaton now.

Take some more times to start.


Title: Re: Chelaton Therapy
Post by: Canadian_Family on December 10, 2015, 10:47:53 AM
Ferritin results fluctuates time to time. At level of 926, chelation should begin, you should target ferritin less than 300. Your child has already enough transfusions to warrant the chelation therapy.

It is very possible that ferritin levels go up once you start chelation, Simply put, iron in the organs will be chelated and enters into blood stream.


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on December 11, 2015, 08:19:16 PM

Thank you Canadian_Family.

You are right but doctor not interested what to do ?


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on December 11, 2015, 08:29:27 PM

Hello Andy,

Whats your opinion?

May I start the therapy in a low dose.Please suggest me the dosage and procedure to take...


Title: Re: Chelaton Therapy
Post by: nice friend on December 13, 2015, 10:15:07 AM
Lokhi ,
as everyone said 926 is enough to start chelation ,, otherwise once Fe cross 1500 then it will be a little more difficult to get ride/control over it ...  so dont let it go above 1000 and try to keep it within normal ranges ....


Title: Re: Chelaton Therapy
Post by: Andy Battaglia on December 13, 2015, 02:15:15 PM
I think chelation with a low dose of Asunra could be started now. I would advise no more than 1/3 the normal dose for at least 2 weeks, and maybe a whole month before considering raising the dose. You are not going to want to start this child on a higher dose, so chelation should begin soon.


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on December 13, 2015, 08:28:04 PM

Thanks Andy and nice friend.

From May '2014 my baby taking phenobarbital and doctor advised to continue up to 2 year.The course will be complete on May'2016.Phenobarbital and Asunra may I continue both together? Bcoz both are drug.

Whats the normal dose of Asunra?She is now 27 months old and weight is 13.5 kg.

Andy, what will be the 1/3 the normal dose as you advised and when, how she will take it?

Please help me to start chelaton.


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on December 14, 2015, 03:10:20 AM

Hello Andy,

In Bangladesh 100 mg and 400 mg Asunra available in Novartis branch office.

Please help me about suitable dose for my baby..


Title: Re: Chelaton Therapy
Post by: Andy Battaglia on December 14, 2015, 10:18:00 PM
Lokkhi,

When you first star Asunra, give 100 mg only at first until the child gets used to the drug. It's easiest to take if the tablet is ground up and mixed in with some soft food. I would suggest that when you first start, give it one day and then skip a day and see if there is any reaction. Reactions can be a skin rash or upset stomach. Give it every other day for the first two weeks and see how does with it. It's early so there is no need to rush. Let her take her time getting used to taking it.


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on December 15, 2015, 12:25:03 AM

Thanks Andy.

I read about split dose and various advice of yours.Will my baby take the tablet once or I split the dose?Are Orange or Apple juices mandatory?

May I mix and give it with any food which prepared with milk like suji? Now she is starting chelaton so is Vit C necessary?

Getting all informations from this forum.

Thank you so much Andy  :heartpink


Title: Re: Chelaton Therapy
Post by: Andy Battaglia on December 15, 2015, 06:24:52 PM
Lokkhi,

I think it's easiest when the tablets are crushed and mixed with foods. Many patients even take it after meals, so it doesn't upset the stomach so much. You may need to experiment a little to find the best way to get her to take it.
Vitamin C is an important nutrient and is essential. She should get as much from food as possible, but if she can't she can take up to 100 mg at this age.


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on April 24, 2016, 01:18:12 AM

Hello Andy,

There are lot of discussions about chelaton and taking vitamin C.But I am confused.

Last night I got my babies ferrittin report that is now 1134 and she is now 31 months old.Doctor advised for starting 100 mg Asunra.

Please advice me after starting chelaton when and how much vitamin C she need.


Title: Re: Chelaton Therapy
Post by: Andy Battaglia on April 24, 2016, 01:03:04 PM
I don't believe any studies show an added benefit to chelation with Asunra by using vitamin C. However, vitamin C is an essential nutrient and should be consumed by thals in moderation. Food sources like citrus are the preferred sources. They are best taken separately from high iron meals, as C aids absorption of iron from veg foods.


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on April 25, 2016, 04:19:12 AM
I don't believe any studies show an added benefit to chelation with Asunra by using vitamin C.

Thanks Andy.

So nothing different if getting Asunra only mixed with water or soft foods. :)


Title: Re: Chelaton Therapy
Post by: Andy Battaglia on April 26, 2016, 11:11:13 AM
No difference. The drug works as long as it is taken.


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on April 26, 2016, 11:36:56 PM

Thanks Andy.

Doctor prescribed 20mg/kg in a glass of water one dose take on empty stomach..

According to all of advises or discussions I think taking with food will be easy.. :)


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on May 03, 2016, 06:57:15 AM

Hello Andy,

As I have no idea,taking Asunra urine color will be change or not?

Last 3 days my baby taking Asunra only 50 mg daily but urine color is white.

Though she also taking phenobarbital so I have started with low dose to see its effect..

How I will know that Asunra is working or reducing her iron.If I will increase the dose then the color will change ?
Please advice...


Title: Re: Chelaton Therapy
Post by: Waleed on May 03, 2016, 01:51:13 PM
Lokhi Maa,

Asunra excretes iron through faeces, not urine, so urine colour won't change with it.


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on May 03, 2016, 09:29:13 PM

Thanks Waleed.. :)


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on May 26, 2016, 06:07:10 AM

Hello Andy,

My baby taking last 20 days 50 mg Asunra daily.I started it with low dose.As I mention her current Ferrittin level is 1134, so I want to increase her dose daily 100 mg.Is it ok?

She have completed 2 yrs after her seizure without no problem so doctor reduces her phenobarbital dose slowly after every 2 weeks.Now she is taking 3.5 ml (twice daily).



Title: Re: Chelaton Therapy
Post by: Andy Battaglia on May 26, 2016, 09:07:03 PM
Lokkhi, if she has no rash from the Asunra and her stomach isn't bothered, it's time to raise the dose.


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on May 27, 2016, 09:48:05 PM

Thanks Andy.. :)


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on May 31, 2016, 03:25:21 AM

Hello Andy,

How I will understand that Asunra is working.Bcoz my babies faeces is not black.Its color is normal.


Title: Re: Chelaton Therapy
Post by: Andy Battaglia on June 04, 2016, 11:01:16 AM
You know it's working because she takes it. As time passes, ferritin scores will demonstrate the effect of the chelator.


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on August 01, 2016, 05:49:42 AM

Hello Andy,

My babies temperature now increasing that is 101.So I stop giving chealaton by Asunra?


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on October 15, 2016, 03:17:29 AM

Hello Andy,

Earlier I was started with low dose of Asunra  that is 200 mg daily.100 mg morning and 100 mg evening as she was taking phenobarbital.

Now she free from phenobarbital but last night her Ferrittin report is 1870.So what dose will be appropriate for her ?

Her weight is now 15 kg and she is 3 yrs old.Yesterday I gave her 300 mg.

Please advice..


Title: Re: Chelaton Therapy
Post by: Andy Battaglia on October 15, 2016, 12:34:01 PM
Slowly raise the dose to 450 mg daily and she will be at the right dose. Continue splitting the dose.


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on October 16, 2016, 03:28:05 AM

Thanks Andy..

450 mg !! Standard dose as I know 20mg/kg for that I have started 300 mg ..

Now she is only 3 yrs old.. :(


Title: Re: Chelaton Therapy
Post by: Andy Battaglia on October 18, 2016, 06:26:11 PM
Standard dose for Asunra is 30 mg/kg unless the iron is completely under control. The child is young, so you can go slowly getting to that dose as long as the ferritin doesn't rise a lot.


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on October 22, 2016, 03:01:06 AM

Ok Andy.

Thanks a lot..  :)


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on December 12, 2016, 01:20:36 AM

Hello Andy,

Daily taking Asunra or daily continuing chelaton therapy damage liver is it right?

One of guardian of a thal child advised me not to continue chelaton or asunra daily basis.It will damage liver.So sometimes you may give the med to your child  ??? ???


Title: Re: Chelaton Therapy
Post by: Andy Battaglia on December 12, 2016, 01:20:33 PM
Iron is the biggest danger to the liver. Chelation is necessary and when managed right, it will not damage the organs.


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on December 14, 2016, 01:23:12 AM
Thanks Andy.

So continuing chelaton is right..

Andy does asunra loss weight?After increasing the dose we observed that she loss her weight.Now she taking 400 mg daily.200 mg morning and 200 mg evening.Though she take plenty of water and fruits juice but her stool not clear daily and she felt pain bcoz she cry loudly that time...

What to do? Pls help


Title: Re: Chelaton Therapy
Post by: Andy Battaglia on December 14, 2016, 05:26:56 PM
Yes, you have to continue chelation. Asunra shouldn't cause weight loss unless it is causing diarrhea. Can you get figs? They are excellent for maintaining normal bowel activity.


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on December 15, 2016, 05:00:52 AM

Thanks Andy  :heartpink :heartpink


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on March 11, 2017, 05:25:47 AM

Hello Andy,

How are you?

Hope you are doing well.

My baby is now 3.5 years old. She have taken her transfusion on last Monday and yesterday we have checked her HB and Ferritin level.

Test Result:

HB: 12
Serum Ferritin : 1559

Last Test was on October 16 :

Ferritin : 1870
HB:11

After 4 moths her ferritin 1559 from 1870 and she have taken monthly transfusions also.As I know after transfusion body take minimum 250 mg Iron.

So Andy Ferritin reduced 1500 !!

she is now taking 400 mg Asunra daily. 200 mg morning and 200 mg evening..

Dose is ok ?? 



Title: Re: Chelaton Therapy
Post by: Andy Battaglia on March 11, 2017, 03:35:40 PM
She is doing good but as her weight increases, her dose will need to rise. The basic formula is 30 mg/kg, so at 16 kg, her dose would be 480. 400 is good for now.


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on May 14, 2017, 05:27:38 AM

Hello Andy,

My girl is now 18 kg so I want to giving her 450mg Asunra daily.Is it okay?

She have ADHD so her speech still not develop.For that I want to giving her Nordic Naturals Omega 3
1000 mg.

Which elements are as follows:
Supplement Facts
Serving Size: 2 Soft Gels
Servings per Container: 90
Amount Per Serving    % Daily Value*
Calories    20    
Calories from fat    20    
Total Fat    2.0 g    3%
Saturated Fat    0.6 g    3%
Trans Fat    0 g    †
Total Omega-3s    690 mg    †
EPA (Eicosapentaenoic Acid)    330 mg    †
DHA (Docosahexaenoic Acid)    220 mg    †
Other Omega-3s    140 mg    †
* Percent Daily Values are based on a 2,000 calorie diet.
† Daily Value not established.
Less than 5 mg of Cholesterol per serving.


Last month Doctor was also given test for Plasma Ammonia.Which result comes 80.00 umol/L.

Please advice about taking the above fish oil and share your experiences about the test result.


Title: Re: Chelaton Therapy
Post by: Andy Battaglia on May 14, 2017, 11:45:50 AM
The Asunra dose is fine. If there is any difficulty taking it, take part of the dose early in the day and the rest later in the day. Fish oil is a good supplement for thals and many thal doctors recommend it.


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on May 16, 2017, 12:51:37 AM

Hello Andy,

Thanks a lot.

Please advice me against the Plasma Ammonia Test.Which result comes 80.00 umol/L.Is it related with liver function?

The result is high from normal level.Is it causes for her monthly transfusion?
What to do?


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on May 18, 2017, 07:00:36 AM

Hello Andy,

Please advice..


Title: Re: Chelaton Therapy
Post by: Andy Battaglia on May 18, 2017, 09:29:09 PM
It can be  related to chelators. Drinking more water helps.


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on May 21, 2017, 06:12:05 AM

Taking Asunra makes the problem ??

What does the result mean Andy?Doctor has not clear the report to us just said now need nothing to do.

The result of the report related to spleen issue?If possible could you please explain...


Title: Re: Chelaton Therapy
Post by: Andy Battaglia on May 26, 2017, 03:22:07 PM
The slightly high ammonia might be related to the Asunra, but as I said, this can be helped by better hydration. Patients on chelators need to drink plenty of water.


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on May 29, 2017, 02:39:53 AM

Thanks Andy..

We are doing and will do as you advised...


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on June 17, 2017, 03:51:04 AM
Hello Andy,

Which fruits is best for taking Asunra?

I give asunra to my child with only banana and sometimes mix apple and banana...

Is it effective?


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on June 19, 2017, 03:29:19 AM

Andy please advice...


Title: Re: Chelaton Therapy
Post by: Andy Battaglia on June 24, 2017, 12:29:58 PM
It makes no difference how it is taken. If your child will take it the way you are giving it, then continue. If the child objects, try mixing it with different soft foods.


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on July 02, 2017, 05:26:32 AM

 :) :) :heartred


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on July 12, 2017, 01:43:59 AM

Hello Andy,

Is L-carnitine and amino acid same?
As L-carnitine increase HB is it workable for my child?
I also found that "L-carnitine supplements improves behavioral symptoms of ADHD and Autism Children."

http://www.nutraingredients-usa.com/Research/L-carnitine-helps-kids-with-autism-study-finds

My babies Plasma Ammonia result is 80.00 umol/L. This test have any connection with L-carnitine ?

Could you pls clear my concept and give your valuable advice..


Title: Re: Chelaton Therapy
Post by: Pratik on July 13, 2017, 05:33:10 AM
Hello Andy,

Is L-carnitine and amino acid same?
As L-carnitine increase HB is it workable for my child?
I also found that "L-carnitine supplements improves behavioral symptoms of ADHD and Autism Children."

http://www.nutraingredients-usa.com/Research/L-carnitine-helps-kids-with-autism-study-finds

My babies Plasma Ammonia result is 80.00 umol/L. This test have any connection with L-carnitine ?

Could you pls clear my concept and give your valuable advice..
L-Carnitine, L-Arginine are all amino acids. These 30+ amino acids together forms the protein structure.


Title: Re: Chelaton Therapy
Post by: Andy Battaglia on July 16, 2017, 06:29:13 PM
High ammonia is usually caused by meds. Make sure she gets plenty of water every day.


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on July 17, 2017, 06:52:39 AM

Yes, she taking lots of water everyday..

As L-carnitine increase HB is it workable for my child?


Title: Re: Chelaton Therapy
Post by: Andy Battaglia on July 20, 2017, 06:02:40 PM
A child can take L-carnitine. It is sold in liquid form, so it makes it easier to take.


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on July 22, 2017, 06:43:29 AM

Hello Andy,

As you advised the below med for me 1000 mg daily (3 tabs).

Levocarnitine
Tablet: Each tablet contains Levocarnitine USP 330 mg.


How much my child will take? She is 4 yrs old and weight 17 kg.
Is it safe for my child health?


Title: Re: Chelaton Therapy
Post by: Andy Battaglia on July 24, 2017, 06:50:50 PM
Just one per day at this age.


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on July 25, 2017, 01:19:57 AM

Thanks Andy .. :smiley


Title: Re: Chelaton Therapy
Post by: Lokkhi maa on April 11, 2018, 11:00:32 PM

Hello Andy,

My child now taking 500mg asunra daily by split the dose morning and evening and her last Ferritin report was 1590 on February 2018.
Last week doctor advised Enterogermina (Probiotic) 1 bottle per day as she diagnosed moderate ASD.

https://trendydamsels.com/enterogermina

Please advice ..

 


Title: Re: Chelaton Therapy
Post by: Andy Battaglia on April 14, 2018, 01:50:37 PM
I take probiotics daily. They are very helpful for digestion and help restore normal intestinal bacteria.