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Author Topic: The Goal For Thalassemia Patients Today...  (Read 64451 times)
Sharmin
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Little A


« on: October 27, 2012, 06:40:52 PM »

In recent years the treatment and diagnostic procedures for thalassemia patients have improved drastically.  At the same time, the understanding of thalassemia and its effects at a microscopic level are much better understood.  

With new chelators, it is now possible to have iron levels very near normal - and there is no reason for children to have iron levels greater than 500.  Oakland recommends between a range of 200 - 500 for children.   Only 10 years ago - it was not recommended for thals to have iron levels below 1000 because of the toxic effects of desferal.  It is now recommended that when a child's iron levels approach 200 chelation be decreased and as they appraoch 500 or 600 chelation be gently increased.  A split dose - am and pm is safest and most effective.    

This lower level of iron load ensures that iron levels are not to high to be contained in the liver - also constantly having a chelator on board binds free iron - free iron is what corrodes and causes damage to organs.  

We also understand that free iron can cause damage at a molecular level - therefore having antioxidants on board at all times protects the body.  IP6 is very effective at binding free iron.  L-carnitine, vitamin B, (small doses of vitamin C), vitamin E and many others listed in the vitamins and supplements section of this board are very helpful.

Antioxidants also serve other very important functions in the body of a thalassemia patient.  Antioxidants such as L-carnitine and vitamin e help remove debris in the plasma which can damage blood vessels, the lungs and the heart.  Also, antioxidants assist in keeping the arteries elastic and healthy - which protects against Pulmonary hypertension.  

Another important role for chelation and antioxidants is endocrine function - keeping iron levels very low in childhood and adolencense is key to healthy development.  Protecting the pituitary gland from iron and free radical damage is very important - without hormones children cannot develop into healthy adults.  Protecting endocrine glands ensures that the children will grow healthy and their fertility will be protected.  

Another important factor is maintaining a healthy hemoglobin.  Allowing the hemoglobin to drop too low is taxing on the bones, the heart, as well as all other organ systems in the body.  Low hemoglobin levels also decrease sense of well being and quality of life.  Personally, our aim is to prevent the hemoglobin from dropping below 10.  A healthy hemoglobin also prevents the spleen from becoming enlarged.  An enlarged spleen can lead to increased RBC breakdown - a greater requirement for blood and iron overload.  It is also important, when possible, to preserve the spleen in children for normal immune function and prevention of dangerous infections and blood clots.

Because thalassemia has become a chronic, manageable disease and our goal has extended beyond survival.   We must now strive for normalcy in health, ability, participation in all activities, life span, appearance and quality of life.  

Properly treated, a person with thalassemia should not feel any different than anyone else - this is the goal for treatment of thalassemia today.

My best to everyone,

Sharmin
« Last Edit: April 09, 2014, 10:17:36 AM by Sharmin » Logged

Sharmin
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« Reply #1 on: October 28, 2012, 01:18:24 AM »

Nicely said, Sharmin.

-P.
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« Reply #2 on: October 28, 2012, 11:00:02 AM »

Sharmin, that was a wonderful post! Every parent and patient should read that post every day. Thank you
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Andy Battaglia
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« Reply #3 on: October 28, 2012, 12:57:26 PM »

This thread has been "stickied" so that it will remain easily accessible.
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« Reply #4 on: October 29, 2012, 07:55:24 AM »

Very good post. Comprehensive details in one post
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« Reply #5 on: October 29, 2012, 12:45:59 PM »

Very well summarized Sharni....Thank you for your post. We recently came back from Oakland and also given the direction to up the chelation along with splitting the exjade dose when the ferritin is around 500 to 600.
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« Reply #6 on: October 30, 2012, 02:59:44 AM »

Thank you sharmin

what a fine presentation !
Well done.
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Sharmin
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« Reply #7 on: November 11, 2012, 01:53:45 PM »

Thank you for the positive feedback for the post.  Hopefully we will continue to learn from each other's experiences.  Thalpal continues to be the most important resource in my son's care.  

In 2006, Lil A developed an autoantibody which would quickly break down transfused red blood cells.  There was no way to screen the blood to prevent this hemolysis because the antibody indiscriminately destroyed all red blood cells in his body.  He was at times requiring two transfusions a week.  His doctor used prednisone, which is often the first line of treatment but soon that was not enough and iron levels began to build up.  His doctor, going by old standards did not see a need for increased chelation because his 'ferritin' levels were below 2000.    

Fortunately, at that time Andy recommended that we place Lil A on  high doses of antioxidants and urged us to consult Dr. Vichinsky.  Dr. Vichinsky immediately enrolled Lil A in a combination chelation trial (exjade and desferal).  Within a year his iron levels decreased from 2800 to below 1000 - and eventually Lil A was maintained on exjade alone.   His iron levels since that time remain at 400 or below.   Two factors protected Lil A during that stressful time, firstly he had been well chelated since 18 months of age therefore the short duration of iron accumulation did not effect him.    Secondly and most important, Dr. Vichinsky stressed that he was surprised at how little affect the iron had on him at all - this he said it was due to the high anti oxidant regimine that Lil A was on.  Thank god for Andy advising us about antioxidants such as IP6.

Dr. Vichinsky also helped us deal with the antibodies.  Lil A is now transfused every 3 weeks and his hemoglobin is kept at 100 (10.0).  This is to optimize his growth and energy - to prevent strain on the heart, spleen and bones.  I would recommend this for all patients, especially kids.  

Another thing I want to stress is the need for constant chelation.  Despite what some medical professionals are saying - chelation should never be stopped.  It can be decreased to minute amounts spit into small doses throughout the day when iron levels are low but never stopped.   Even when iron levels are very low (below 500) free iron can roam in the body and settle in other organs - and it can cause rustic damage.  

In 2010 - little A's iron levels were very low so our local doctor took him off of exjade.  It was reasonable to think that we would give his stomach a break because he often complained about stomach ache.  A month later, an MRI showed that while there was little iron overload in the liver, no iron in the heart or pituitary there was mild accumulaton of iron in the pancreas and lungs.  The average child does not have an mri of the entire body on a regular basis - we were lucky to find out immediately so we could rectify the situation.  I stress that this was at a time when his iron levels were very low and we only held the chelation for just over a month.  Since that time, we have NEVER stopped chelation.  

When Lil A's iron levels are very low we decrease his exjade to minute levels (we always give him 1/2 the dose in the am and 1/2 pm) and if the levels seem to be increasing we increase the dose.  During times of low iron load, the chelation serves not to remove iron overload - but to bind free iron which is corrosive no matter how much or little iron overload exists in the body.  This must become knowledge for everyone.   It is not just iron overload that kills - it is also the free iron which is present even when iron loads are low.  Antioxidants and chelating agents bind free iron which protect organs from the free radical damage and settling of free iron into other organs.  Dr. Vichinsky and the Oakland program endorse this method and we follow it completely.  Lil A remains on antioxdants at all times and is chelated at all times.  Dr. Vichinsky says that a transfusing thalassemia patient should not go for more than 24 hours with chelation.  We ensure that Lil A gets a boost of chelation every 12 hours.  

We are happy to let you know that recent endocrinology testing indicates that all of Lil A's hormones and endocrine system are completely normal - he is completely unaffected by the thalassemia.  His pituitary volume, shape and function are completely normal.  At one time this was unheard of in thals but today it is achievable for all thals.  If this can happen for little A - even though he has had trouble with antibodies and at times has increased need for transfusion - other kids can definitely achieve this.  

For these reasons I urge everyone to keep their focus on timely transfusion and constant, constant chelation.  On top of this antioxidants are absolutely essential for the cardiovascular system, for iron damage prevention and overall well being.  Antioxidants are not just a form of 'alternative health' they are part of the mainstream medical treatment of thalassemia.  

Thalassemics tend to be deficient - and have a higher need for vitamins such as vitamin E, Vitamin C, vitamin D, zinc, magnesium - and would benefit greatly from supplements.  This is stressed at all of the medical conferences regarding thalassemia and needs to be followed by patients.  It is not extra protection, it is necessary for thals.  

I hope that this is helpful, please talk to your own medical health care providers about what I say before following my advise.  If your healthcare providers are not aware of these trends then perhaps you can contact one of the comprehensive care centers for advise.  I recommend Oakland but there are many other centers as well.   Regardless of what you do, individual patients need individual attention for their unique care and should be followed closely by their own doctors.  It is possible for your local doctors to be in contact with larger centers to coordinate your care.


Best of luck to all,

Sharmin


« Last Edit: April 09, 2014, 10:20:39 AM by Sharmin » Logged

Sharmin
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« Reply #8 on: November 11, 2012, 02:23:53 PM »

Sharmin,

You have followed the advice I have given faithfully and now we see that the reward is being told your child is normal. Thals are not usually told this and it's a tribute to a program of well managed care with additional emphasis on what patients can do for themselves, including faithful chelation compliance and utilizing a program high in antioxidants. Antioxidants prevent the damage that iron does and are 100% necessary for thals. I feel that we should be taking a more in depth look at the value of IP6 and its use not only as an antioxidant, but as an important chelation complement, that chelates where other chelators may not be able to reach. IP6 reaches everywhere, as it is already present everywhere in the body.

I am so pleased that little A is doing so well. This is wonderful news!
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« Reply #9 on: November 11, 2012, 11:46:39 PM »

Wonderful news, so happy for you, Sharmin!

However, IP6 is also a sort of chelating agent or helps in it?

I've asked for it in local store but couldn't find it, I'll order it online most probably then.

I cannot find it online also, can you brief me the common name or full form of IP6 so I could buy some?

-P.
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Andy Battaglia
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« Reply #10 on: November 12, 2012, 09:51:29 AM »

IP6 is an iron chelator and was the original reason I brought it to the attention of this group. It is also a powerful antioxidant that inhibits the actions of iron if the cells, preventing the oxidative damage that iron causes. Even in low iron thals, oxidation from hemolysis and unmatched alpha chains cause much damage, so antioxidants remain key even when the iron status is low. With the success of little A in keeping his pituitary normal, I feel we must re-emphasize the importance of high consumption of antioxidants like IP6 and vitamin E.
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Pratik
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« Reply #11 on: November 12, 2012, 10:36:30 AM »

Hi Andy,

Thank you.

I found it on seacoast at last & ordered it:

http://www.seacoast.com/ip6-gold-with-inositol/ip6-international/120-caps/p157

The tablet is only 16 USD but shipping costs me another 34$, making a total of 51$, too expensive. The shipping cost is twice as tablets. I'll still try to search here in local stores meanwhile if I find it.

-P.
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Pratik
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« Reply #12 on: November 12, 2012, 10:44:53 AM »

Moreover, you're correct. It's an excellent iron chelating supplement.

A very nice video I found explaining IP 6 and it's benefits, worth watching:

http://www.youtube.com/watch?v=zKVE_p1viMI

-P.

Interesting, look out at youtube video timeline on 5:01 where they discuss about defriprone, so I believe this is very much I needed. And I thank you god for making me visit Thalpal and find out more interesting ways to lead a better life.

Moreover it also promises to boost glucose tolerance (curing diabetes), so I think that can do wonders for me as well along with my iron being decreased, so it's a win-win situation. I will laugh at thalassema one day, ha ha ha.
« Last Edit: November 12, 2012, 10:50:25 AM by Pratik » Logged

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Pratik
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« Reply #13 on: November 13, 2012, 12:52:29 AM »

Moreover, you're correct. It's an excellent iron chelating supplement.

A very nice video I found explaining IP 6 and it's benefits, worth watching:

http://www.youtube.com/watch?v=zKVE_p1viMI

-P.

Interesting, look out at youtube video timeline on 5:01 where they discuss about defriprone, so I believe this is very much I needed. And I thank you god for making me visit Thalpal and find out more interesting ways to lead a better life.

Moreover it also promises to boost glucose tolerance (curing diabetes), so I think that can do wonders for me as well along with my iron being decreased, so it's a win-win situation. I will laugh at thalassema one day, ha ha ha.
Also Andy as I've mentioned they've discussed about Desferal and Defriprone in the video I mentioned above, so this 800-1000 mg tablet also I believe removes a lot of iron along with this chelator without any side effects, I believe?

Also I want to ask if whether 2 tablets/day would be appropriate I think?

-P.
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Dharmesh
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« Reply #14 on: November 13, 2012, 05:25:52 AM »

This is for You Pratik,
http://www.guardiannutrition.in/vitamins-supplements-best-vitamins-for-joints-gnc-inositol-500-100-tabs-p-297.html

I have bought GNC Natural Vitamin E 400 IU from this site. It is Indian site of GNC.

Hope it will help.
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