New Member: 2 year old angel having Thal Major: Intro + Questions

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Hello Friends! We are parents to a 2 year old angel based out of Mumbai and she has been diagnosed with Thal Major. We are here to learn from the community on various ways to deal with day to day thal care and also at the same time contribute and share our learning.

Here is some background on our angel-
1) A chorion vila biopsy was done during the 3rd month of our pregnancy with a reputed medical institute, which turned out to be incorrect post our lil one's birth. The fetus was tested as Thal Minor and only post birth when she was 3rd month old, we found out that she was in fact Thal Major when her HgB dropped to 5.5
2) We also found out that she is Thal Major + having Triplicate Alpha Gene which, somehow, makes it even worst.
3) She started transfusion from month 3 onwards and is currently on a monthly cycle
4) We have maintained her HgB above 10 at any given point during the last 2 years
5) We have been advised to get started with iron chelation due to her high SF levels - her last SF levels were 2351
6) Iron Chelation can only be started post 2 years so we will be starting that using Kelfer - 250 MG from this month owards
7) Her SGPT & SPOT has been showing a HUGE yo-yo effect over the last few months: SGPT touched all time high of 894 and SGOT touched 412 though now, it has gone down to 89 and 124. These fluctuations have been a lot since the last few months and we conducted all possible liver related tests, out of which, everything was negative including Gluten allergy.

Advice needed-
1) Has anyone here dealt with such yo-yo fluctuations of SGPT & SPOT? Any advice on things that could have been missed out?
2) We are starting iron chelation this month using Kelfer - what is the best way to give Kelfer to a 2 year old? Can we mix with honey, milk, juice etc?
3) Are there any natural iron chelating food/ingredients that can help?

Looking forward to connect with everyone to learn and share. Thank you.

God Bless....

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Offline Parin

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Re: New Member: 2 year old angel having Thal Major: Intro + Questions
« Reply #1 on: December 23, 2015, 05:35:02 AM »
Hello Ashah,

For iron chelation try the Asundra. I am using it from last 7-8 years and working well. Ping for more information


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Offline Lokkhi maa

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Re: New Member: 2 year old angel having Thal Major: Intro + Questions
« Reply #2 on: December 23, 2015, 09:44:18 AM »
Hello Ashah,

My baby is now 26 months old and need transfusion after every 5/6 weeks when hb level drop at 9 or above.I start to give her green tea with food when she was only 5 months old and milk also which reduce iron absorption to body.Now I am giving her green tea (1/2 of tea bag) with her lunch and black tea with her dinner.When give any iron food then give her milk also.

After 15 transfusions this month my babies SF level is 926.

« Last Edit: December 23, 2015, 10:20:03 AM by Lokkhi maa »
Lokkhi Maa

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Offline Sharmin

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Re: New Member: 2 year old angel having Thal Major: Intro + Questions
« Reply #3 on: December 23, 2015, 04:45:45 PM »
Ashah,

Welcome to the website.  I am glad that you are maintaining hemoglobin level above 10 because that is ideal for growth, development, bone health and energy levels of a growing child.  I agree that you should look into Asunra (Exjade) for chelation. 

Start exjade at a very low dose, split the dose to twice daily and slowly increase the dose to the appropriate dose for your daughter's weight.  Timely transfusions and good chelation are the key to having a healthy child with thalassemia.  You are already doing great with the transfusions - and with some fine tuning you will be in step with the chelation too.

All the best,

Sharmin
Sharmin

Re: New Member: 2 year old angel having Thal Major: Intro + Questions
« Reply #4 on: December 23, 2015, 08:40:37 PM »
Ashah,

Welcome to the website.  I am glad that you are maintaining hemoglobin level above 10 because that is ideal for growth, development, bone health and energy levels of a growing child.  I agree that you should look into Asunra (Exjade) for chelation. 

Start exjade at a very low dose, split the dose to twice daily and slowly increase the dose to the appropriate dose for your daughter's weight.  Timely transfusions and good chelation are the key to having a healthy child with thalassemia.  You are already doing great with the transfusions - and with some fine tuning you will be in step with the chelation too.

All the best,

Sharmin


Agreed.
Regards.

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Offline Bostonian_04

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Re: New Member: 2 year old angel having Thal Major: Intro + Questions
« Reply #5 on: December 24, 2015, 12:31:32 AM »
Welcome to Thalpal Ashah. We also started with Exjade (aka Asurna) when my daughter was 2 yrs of age. As Sharmin suggested, start with a very low dose first to get her adjusted and then slowly increase the dose to the   correct dose for your child's weight. We used to dissolve the tabs in water as my daughter did not like juice at that age. But later we used mango/pineapple juice to dissolve the medicine.

You are already doing great job managing thal. All the best to you and your family.
Quis custodiet ipsos custodes ? - Plato

Re: New Member: 2 year old angel having Thal Major: Intro + Questions
« Reply #6 on: December 24, 2015, 03:14:04 AM »
Hello every one,

Thanks for all the information, it's really helpful and supportive.

1) For Mehr we have been asked to start Kelfer rather than Asundra as her liver profile (SGOT & SGPT) have been fluctuating since she has 8 months old. We have done all possible test and nothing significant have come as a result. Our Doctor has recommended Kelfer as it has less adverse effect on liver as compared to Asundra
Have any one of you faced such issues please share your experience.

2) Green tea we haven't tried with mehr but would definitely try giving her.

Please let us know if any specific things we should keep in mind and watch while giving Kelfer.

Thanks

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Offline Lokkhi maa

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Re: New Member: 2 year old angel having Thal Major: Intro + Questions
« Reply #7 on: December 24, 2015, 03:24:04 AM »

Hello Sharmin,

Please advice which type of foods will be better to take with Asunra.As it requires so much liquid so if its taken with food then how it will be fulfill the liquid demand.Food with milk with Asunra will be good or not?
Lokkhi Maa

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Offline Lokkhi maa

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Re: New Member: 2 year old angel having Thal Major: Intro + Questions
« Reply #8 on: December 24, 2015, 03:38:00 AM »

Kelfer as it has less adverse effect on liver as compared to Asundra


Hello Andy,

If its really adverse effect may I think about kelfer instead of Asunra?Whose product is Kelfer pls advice.

First I will search in my country.
Lokkhi Maa

Re: New Member: 2 year old angel having Thal Major: Intro + Questions
« Reply #9 on: December 24, 2015, 08:11:40 AM »
Friends- thank you for the warm welcome and suggestions.

Hi Lokkhi maa- Well, in our case, since her SPGT & SPOT levels have been going through major yo-yo effects, we have been advised to go with Kelfer vs. Asunra. I believe it is best to stick with the local Hematologist advice since they are aware of other parameters. Kelfer is manufactured by Cipla in India.

Btw, we started with small doses yesterday and mixed the capsule powder with honey - so far so good.

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Offline Andy Battaglia

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Re: New Member: 2 year old angel having Thal Major: Intro + Questions
« Reply #10 on: December 24, 2015, 02:54:43 PM »
Lokkhi, you can use and soft food to mix the crushed tablets with. The foods used in the study can be seen in the attachment to the post at http://www.thalassemiapatientsandfriends.com/index.php/topic,4051.msg40379.html#msg40379

Please talk to your doctor about which chelators are available. Kelfer is a pill that has to be swallowed, so it may not be suitable until the child is old enough to swallow a pill.
Andy

All we are saying is give thals a chance.

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Offline Lokkhi maa

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Re: New Member: 2 year old angel having Thal Major: Intro + Questions
« Reply #11 on: December 26, 2015, 02:37:44 AM »

Thanks Andy for the helpful attached link.

Please advice which type of soft foods will be better to take with Asunra.As it requires so much liquid so if its taken with food then how it will be fulfill the liquid demand.Food with milk with Asunra will be good or not? 
Lokkhi Maa

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Offline Andy Battaglia

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Re: New Member: 2 year old angel having Thal Major: Intro + Questions
« Reply #12 on: December 26, 2015, 09:19:45 PM »
Whatever soft foods she will eat are fine. Many people use yogurt or cooked cereals.
Andy

All we are saying is give thals a chance.

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Offline Lokkhi maa

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Re: New Member: 2 year old angel having Thal Major: Intro + Questions
« Reply #13 on: December 27, 2015, 02:26:59 AM »

Thanks Andy...
Lokkhi Maa

 

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