Thalassemia Patients and Friends

Discussion Forums => Thalassemia Major => Topic started by: hardik on December 01, 2014, 07:13:29 PM

Title: Hardik
Post by: hardik on December 01, 2014, 07:13:29 PM
hello everyone here,i m new to this site.my 10 months baby is thal major.plz guide me do and donts for his well being. Till now he had got 6 transfusions .What should i give to him to maintain his iron level.?

His medicines include-1)-20drops of vitocofol(combination of vit b3,vit b12,folic acid)
2)-5 ml of calcium syrup
3)-10drops of vit d3

can i give him green tea at this age?
If yes how much can i give to him  :-\

is kalonji useful for him in anyway ?

what others supplemrnts can i give to him at this age for his best health conditions and plz tell me about IP6?

PLZ HELP ME.…






Title: Re: Hardik
Post by: Bostonian_04 on December 02, 2014, 03:11:11 AM
welcome  to Thalpal, Hardik. My daughter is thal major. at that young age, we didnot give her anything apart from milk and homemade cereal, fruits etc. we gave vit D and a multivit without iron. That's about it.  when your son turns two, he will be on iron chelation so don't worry about iron chelation now. just try to build a healthy eatign habit for him.
Title: Re: Hardik
Post by: Parin on December 02, 2014, 08:20:33 AM
Hello Hardik,

Welcome to the forum.

Where are you from?

About the do and don't so don't think too much....grow your kid as a normal baby....Everything will be all right.maintain the HB above 9:50 and iron below 1000. As he is only 10 month so no worry for iron now...

Write here if you find any issue

Ashutosh
Title: Re: Hardik
Post by: hardik on December 02, 2014, 07:58:05 PM
Thank u for yours kind reply.....I m from Karnal(Haryana ,India).actually i m so worried about hardik as he is my first child but with such truth....and all around makes me afraid about his life and being a mother, its very difficult to handle every chaos.
plz tell me about IP6 and the right age to give him.Somewhere i read that cilantro(hara dhania) juice and green tea is very useful .
Is this true and is this right age to give him these .
Title: Re: Hardik
Post by: Sushil on December 03, 2014, 04:11:27 AM
Hi Hardik,

My daughter is also Thal Major and i am from your near state Delhi. please note that life is unpredictable childeren die at young age also without Thal major and people live in their sixty with Thal major also and there are member in this forum who are in their sixtys,So dont worry about your child life . I understand being a mother its difficult to handle but trust me I am saying by experience it is not that difficult. you can trust my word its just a blood disorder (like many others) which is going to be cure maximum in 10-12 years.

now regarding your child health please note that IP6 is not available in india hence you need to order this from US, puriton.com is site by which you can order. green tee, wheat grass juice etc are helpful but your child is too small for them hence what you need to take care of him now is only vitamin and calcium. so as you mentioned below what ever you are giving is fine from my perspective let him grow a bit (i.e. 2 years) and you can start rest of things.

Regards
Sushil Thakur
Title: Baby hardik
Post by: hardik on December 17, 2014, 06:25:43 PM
Thank u Sushil ji.....
Recently when i went to hospital ,i heard about a doc in ahmedabad who treat thal by god blood aneemaa.
any info????

thalmom...
Neha
Title: Re: Baby hardik
Post by: Hafiz Akhtar on December 18, 2014, 06:30:10 AM
Thank u Sushil ji.....
Recently when i went to hospital ,i heard about a doc in ahmedabad who treat thal by god blood aneemaa.
any info????

thalmom...
Neha
[/quot me also new on this forum. from Pakistan. mt son is 10 yrs old Thal major with ferritin 2000. currently i am giving him following treatment
Previously i had been giving him 4 tab.Ferriprox plus Desperol 2 days a week, now for last 03 months m shifted on Assunra 400 single tab daily.
his spleen is 4cm as well as liver. also giving cenathous tincture. i dont know why his Hb is on 8 or below 8 after everu 15 days. i have to transfuse after 15 days due to this low Hb. Pl advise.
Title: Re: Baby hardik
Post by: Poirot on March 10, 2015, 07:17:09 AM
Neha -

The doc could have been talking about "cord blood" - and you misheard!

This is a procedure for taking stem cells from the umbilical cord, post birth - and using those for a stem cell transplant. Typically, this can only be done if you have "banked" (saved by a cord blood bank) your cord blood post giving birth.

Hope that helps.

Poirot

Recently when i went to hospital ,i heard about a doc in ahmedabad who treat thal by god blood aneemaa.
any info????
Title: Re: Hardik
Post by: Dharmesh on March 11, 2015, 07:38:28 AM
He He He He,

It's not Cord blood, it is Goat blood anema.
In Ahmedabad Ayurvedic Hospital is giving Goat blood anema to Thals.
It's a dangerous thing. You just think the blood of human creat side effects to thals in long as well as short, what kind of bad it can do to thals.

Also i know a patient personally who got severe skin problem after goat blood anema
Title: Re: Hardik
Post by: jay on March 11, 2015, 08:35:29 AM
 :rotfl  :banghead
Title: Re: Hardik
Post by: Poirot on March 11, 2015, 02:08:29 PM
It's not Cord blood, it is Goat blood anema.
In Ahmedabad Ayurvedic Hospital is giving Goat blood anema to Thals.


Are you serious, Dharmesh??? People can not be that stupid  :huh

Really???
Title: Re: Hardik
Post by: Dharmesh on March 12, 2015, 06:29:43 AM
Yes it is correct and actually there are two centers where it is done.
The centeres are Ayurvedic Hospitals of Government and the treating doctors are Ayurvedic Doctors.
Title: Re: Hardik
Post by: hardik on March 28, 2015, 06:49:49 PM
Hello Everyone.....

how does vitamin E (tocopheryl acetate) helps to improve thals health?? and  quantity to give???

I have an issue that till 12 months of age ,his blood always remain above 10 but now after turning one year from 3 months continuously his blood is varying between 9 - 9.5.......why is it so???? interval in between is one month???
Title: Re: Hardik
Post by: Andy Battaglia on March 29, 2015, 04:10:46 PM
hardik,

Natural vitamin E is a powerful antioxidant and also a mild blood thinner. Both are very useful for thals. Great oxidative stresses occur in thalassemia, due to the ineffective bone marrow production and the premature breakdown of red blood cells. Vitamin E helps to protect the cells from damage due to oxidation. It also helps prevent the clotting issues that can occur in thalassemics. For a young child, I suggest 100 IU natural E daily. Adults should take 400-800 IU.
Title: Re: Hardik
Post by: Lokkhi maa on March 30, 2015, 05:02:04 AM

Thanks Andy   :)
Title: Re: Hardik
Post by: hardik on May 21, 2015, 05:22:42 PM
HELLO everyone here
thanks for ur kind suggestions everytime whenever i am in need......
plz solve my  this query also...
In the last month and today when hardik got transfused ,he get fevered upto 101 C--103 C??
why is it so??
he feels so tired and exhausted after transfusions....he niether plays ...nor eat upto levels?????

kindly help me plz plz plz

he is now 1yr and 4 mths old

medicines given to him ::
calcium -->4ml - 4ml
folic acid -->2.5 mg
vitamin d -->1 ml
vitmin e -->10 drops

any changes if needed kindly post me


regards
neha(hardik's mom)
Title: Re: Hardik
Post by: Sharmin on May 21, 2015, 05:35:37 PM
Dear Neha,

I wonder if your child is reacting to antigens in the blood. 
Antihistamines may help reduce this.   

Also, was your child phenotype or genotype tested prior to beginning transfusions to endure he is receiving the best matched blood?

Your child should be tested for antibodies so that the blood bank is aware of what antigens your child is sensitive to and they can be avoided in future transfusions. 


Best,

Sharmin
Title: Re: Hardik
Post by: Lokkhi maa on May 23, 2015, 05:34:58 AM
Dear all,

My baby is now 20 months old and I am daily giving her after lunch 1/2 tea bag green tea.She likes it so much.Also I order for wheatgrass tablet.May I continue green tea and wheatgrass both? Present green tea quantity is ok or not ?After 9 transfusions last month her serum ferritin test result was 459.So I am not start any chelating like Exjade or Asunra.Please advice..
Title: Re: Hardik
Post by: Andy Battaglia on May 23, 2015, 03:28:11 PM
You're doing good, Lokkhi. Continue both tea and wheatgrass.
Title: Re: Hardik
Post by: Lokkhi maa on May 24, 2015, 03:30:27 AM

Hello Andy,

Thanks. Everything is possible only for you.

My baby has currently lose her some weight.Is it green tea affect?As I know green tea reduce weight.So is it not harmful for growing child ?

Her stool is always black.Is it for iron comes out for green tea or for folic acid which one?

Please advice.
Title: Re: Hardik
Post by: Andy Battaglia on May 27, 2015, 03:32:11 AM
Lokkhi,

You can use black tea, also. Don't make it too strong at this age. Has her appetite changed?
Title: Re: Hardik
Post by: Lokkhi maa on May 27, 2015, 09:19:57 AM

Her appetite is ok.Why her stool is always black pls advice Andy.
Title: Re: Hardik
Post by: Andy Battaglia on May 28, 2015, 11:47:12 PM
Lokkhi,

Are her movements regular or is she constipated? Iron will make stools darker as it is removed, so the tea may have some noticeable effect.
Title: Re: Hardik
Post by: Lokkhi maa on May 30, 2015, 03:56:31 AM

Hello Andy,

Please note, her movements is regular and  she is not constipated... :smiley :smileblue

Thanks
Title: Re: Hardik
Post by: hardik on July 16, 2015, 05:43:34 PM
Hello everyone
My boy is now 18 months old .last time his ferritin test was done and it came to be greater than 5000...(shocking) ?
Is this possible for such a small child...
Till now he had 12 transfusions
Doc had recommended to retest...and I'm waiting for positive result
Plz pray for me....
And plz guide me what should I do after report in hands...

Title: Re: Hardik
Post by: hardik on July 16, 2015, 05:51:53 PM
From where do I get wheatgrass tablets ...plz let me know?
Title: Re: Hardik
Post by: hardik on July 18, 2015, 06:17:34 PM
Retest report indicates 1720  ferritin level.....which very high....what should I do to decrease it....guide me plz
Title: Re: Hardik
Post by: Andy Battaglia on July 19, 2015, 12:01:40 AM
The child will have to begin chelation soon. Don't worry too much about ferritin. These test results are not consistent and somewhat unreliable. Wheatgrass tablets and powder are fairly easy to find. Where do you live?
Title: Re: Hardik
Post by: hardik on July 19, 2015, 11:48:04 AM
I m from Karnal,Haryana,India....and had search all the medical store nearby...but failed to find tablets....he got his last transfusion on 18  ....and here in CHD PGI ...docs meet thals only twice a week ....so his reports will be presented to doc next month on 13.....and there docs don't recommend wheatgrass juice or tablets ....they called it a waste....so I m confused a little bit ...what to do or not.... ???

Plz also guide me about the other test that are necessary for thals....here docs recommend only ferritin .,thyroid,sugar once in 3months....


Neha
Title: Re: Hardik
Post by: Andy Battaglia on July 19, 2015, 06:10:19 PM
There are many sources for wheatgrass in India. http://catalogs.indiamart.com/products/wheat-grass-powder.html

The Standards of Care for Thalassemia can be found attached to the post at http://www.thalassemiapatientsandfriends.com/index.php/topic,1762.msg14639.html#msg14639
You will find the information you need in that document.
Title: Re: Hardik
Post by: hardik on July 22, 2015, 07:41:37 PM
Thank u Andy....thank u very much......u r really just like a bright sunshine behind the dark clouds of Thal.....ur guidance are of great help to all of us....as we normally face the situation where docs in reputed firms don't care of us anyway and take us as granted or just a money making subject....thanks for ur kind concern....

Scrolling the site ,I just came across a word Carao and Ip6...I read it ...plz enlight more about it.....

My worry is that now a days my baby is feeling very tired all the day long...he plays very little ...his ferritin is 1720 and I think he had pain in his joints....As his BT had been done on this 18 only ....and doc didn't attend on Sat so I missed the chance to start his chelatin right now...and next meeting is on 13...so plz guide what should I give him right now to enhance his energy level....I know its a stupid thing to ask u...but being a mother...I had found ur advice's more useful .....

Thanks again
Neha
Title: Re: Hardik
Post by: Lokkhi maa on July 23, 2015, 11:12:58 AM

Dear Hardik,

You may give your baby wheatgrass tablet or powder to enhance energy level.. :heartpink
Title: Re: Hardik
Post by: Syeda on July 23, 2015, 12:16:45 PM
For lokhi maa: that sounds like great news about your child's iron levels after 9 transfusions! It sounds like the green tea is working!!
Title: Re: Hardik
Post by: Andy Battaglia on July 23, 2015, 10:44:38 PM
Neha, at what level of Hb is the child transfused? It may be that the Hb is being kept too low. I don't think carao had much effect on thals who tried it. Wheatgrass is a better option.
Title: Re: Hardik
Post by: hardik on July 24, 2015, 05:27:39 AM
He is transfused at 9. his present weight is 10.3kg so 200ml blood is transfused .
Title: Re: Hardik
Post by: Lokkhi maa on July 26, 2015, 09:07:52 AM

Hello Syeda,

You are right green tea is working.From the last month I also started wheatgrass tablet.After giving wheatgrass  my babies energy level increased as she play all day and not interested to take any rest or go to bed for sleep.... :jumping :jumping :cheer
Title: Re: Hardik
Post by: hardik on July 28, 2015, 02:26:19 PM
Does loose motion is an effect of green tea.? I m giving him half package of a tea bag a day.....he is using loo 4-5 times a day....not watery but loose than normal.....is that OK or not? Or should I reduce the quantity...
Title: Re: Hardik
Post by: Andy Battaglia on July 28, 2015, 04:22:20 PM
This is not typically an effect of green tea, but for now, try black tea. It has the same iron inhibiting properties as green tea.
Title: Re: Hardik
Post by: hardik on July 28, 2015, 04:35:38 PM
I had read somewhere that mixing wheatgrass and barley increases the toxins removing capacity.....Is that so :dunno.......can we use barley powder also with wheatgrass....
but I m happy now as continuously giving green tea is showing its effects in few days only....and he has enhanced energy level a little bit

......thanks lokkhi maa and andy for ur kind guidance
Title: Re: Hardik
Post by: Andy Battaglia on July 28, 2015, 05:12:08 PM
Let me know the iron content of the barley powder and I will advise.
Title: Re: Hardik
Post by: Lokkhi maa on August 01, 2015, 07:45:57 AM

Hello Andy,

please share the usefulness of mixing wheatgrass and barley powder.

What is barley powder ? In Bangladesh available barley as babies food (Small white balls) but I don't know is it the same?

Dear Hardik have you the mentioned link? Please share..
Title: Re: Hardik
Post by: hardik on August 01, 2015, 10:45:03 AM
Dear lokhi maa
In India wheat barley and oats combination is considered as a complete (nothing else required) breakfast for everyone even their combo porridge is easily available in market.....even for eating babies..,mothers and docs prefer this....when my baby was declared thalassemic...... My neighbour (have knowledge of home made medicine) told me to gave him wheat and barley juice(homemade)for maintaining HB and enhancing energy level but......my foolishness ...I take her as granted ......but recently an Ayurvedic doc told me same thing.......still now I m confused regarding iron concentration... That's why asked Andy.....I m also waiting for his answer......just like wheat powder....barley powder is also available in market. Before asking to Andy I had searched on (internet)Google about "benefits of barley and wheat juice for thalassemia" and is satisfied with readings


I had also ordered IP6 ....from US....let's see......Andy reply????
Title: Re: Hardik
Post by: Andy Battaglia on August 01, 2015, 05:35:06 PM
Lokkhi,

Barley powder is made from barley grass, much the same as wheatgrass. I would advise checking the iron content before using it.
Title: Re: Hardik
Post by: hardik on August 11, 2015, 08:32:58 AM
Hello everyone....

Plz tell me the amount /quantity of wheat grass powder to be given to a 18 months baby.....and can I mix it in curd...sabzi....and all
Title: Re: Hardik
Post by: Lokkhi maa on August 11, 2015, 09:29:29 AM

Dear Hardik,


As per Andy's suggestion:-

The dose would be 500-1000 mg daily and the powder can be mixed with liquid.Adding it to a nutritious smoothie is a good way to get kids to take it. :smiley
Title: Re: Hardik
Post by: hardik on August 11, 2015, 10:34:45 AM
Thank u lokhi maa.....have to ever heard about marua plant (pabri plant or nias boss)and its medical use....Its seeds and properties are similar to the tulsi plant found in India.
And how can we check iron contents in it and in barley grass
Title: Re: Hardik
Post by: Lokkhi maa on August 12, 2015, 02:37:18 AM

Hello Hardik,

Sorry no idea about marua plant but Tulsi plant is common.

Amounts per 2 tbsp, chopped (5g) Tulsi plant contains:

 Vitamin A  277 IU
 Vitamin C  0.9  mg
 Vitamin K  21.8 mcg
 Folate       3.6 mcg
 Calcium    9.3 mg
 Iron         0.2 mg
 Magnesium 3.4 mg
 Phosphorus 2.9 mg
 Potassium  15.5 mg
 Sodium    0.2 mg
 Manganese 0.1 mg
 Total Omega-3 fatty acids 16.6 mg
 Total Omega-6 fatty acids 3.8 mg
 Water 4.8 g
 Ash 0.1 g
 Choline  0.6 mg

http://nutritiondata.self.com/facts/spices-and-herbs/213/2

Its good :happyyes


Is Tulsi plant helpful for Thal ?Please share...
Title: Re: Hardik
Post by: hardik on August 20, 2015, 02:16:11 PM
Hai everyone here

I'm eager to know that how 'one' get information about new post in any forum

  :huh
Title: Re: Hardik
Post by: hardik on August 21, 2015, 12:16:10 PM
Hello

Today my baby had got its 15th transfusionon....so painful. The most weird situation was pricking cannola ....oh god ..its so hurting....but anyways the day has finally passed...Now my query is as hardik's ferritin came out 1720..so doc had recommended Desirox 250 on empty stomach .Is empty stomach is a compulsion?? And I had also bought IP6 from puritan pride so
My question is ....that....as currently he is on green tea 1/2 pouch of tea bag and wheat grass aproxx 1-2 gm.  --- When and how to start it ?? And if any other change in diet is needed plz advice...and Can desirox be given by mixing in curd or something ?? How will I know that its iron is removing as doc has advice next ferritin in DEC... :huh
Title: Re: Hardik
Post by: hardik on August 21, 2015, 12:33:36 PM
Thank u lokhi maa for such a vast knowledge about tulsi plant...maura or pabri also serves same purpose as  tulsi in addition to act as a liver tonic ...From last 7 days I gave pabri about 10ml (aftr mixing water)daily to Hardik ...and had seen great improvement results in his diet as early he didn't like to eat anything.I had to rushed after him everytime I gave him anything to eat .....but now I m satisfied..... I don't know about its nutritional facts ...but its showing me great result...in his energy level also.so I m thinking to stop it for 4-5 days and then to give it again .Only Andy can guide us  on tulsi and pabri...as far  as nutrition facts of tulsi are concerned....iron is in mg....and all others vit and min are there...so I think it can also help us in one way or other...but wait for Andy's response... :rolleyes

Neha
Title: Re: Hardik
Post by: Andy Battaglia on August 21, 2015, 01:30:47 PM
Iron content of food has no real relevance to patients who transfuse, as blood has hundreds of times more iron than food. Don't let iron content of food limit the diet.
Title: Re: Hardik
Post by: hardik on August 30, 2015, 01:10:55 PM
Hello Andy
Plz guide me

I  had bought IP6 from puritan pride....How and When to take it.?? Before and After taking Instructions...and which things are to be kept in mind with its ongoing,i mean, test which should be considered Before and After ....and all other imp info

Presently the baby(19 months old) has ferritan level 1720..,transfused after 25 days....daily diet includes normal food in addition with wheatgrass powder(1-2 gm) and green tea (1/2 tea pouch) and Desirox 250(1 tab on empty stomach)

his stool sometimes show black color...otherwise normal ...but passes all day long ( many times )in little amount .I try to keep him well hydrated but why is it happening  ....I dont know....

His energy level is good enough now but his increased ferritin makes me frightened all time..

Plz give details

Thanks
Neha
Title: Re: Hardik
Post by: hardik on September 01, 2015, 06:11:44 AM
Plz reply soon......
Title: Re: Hardik
Post by: hardik on September 01, 2015, 07:03:25 PM
Hello Andy
Plz guide me

I  had bought IP6 from puritan pride....How and When to take it.?? Before and After taking Instructions...and which things are to be kept in mind with its ongoing,i mean, test which should be considered Before and After ....and all other imp info

Presently the baby(19 months old and weighing 10 kg) has ferritan level 1720..,transfused after 25 days....daily diet includes normal food in addition with wheatgrass powder(1-2 gm) and green tea (1/2 tea pouch) and Desirox 250(1 tab on empty stomach)

his stool sometimes show black color...otherwise normal ...but passes all day long ( many times )in little amount .I try to keep him well hydrated but why is it happening  ....I dont know....

His energy level is good enough now but his increased ferritin makes me frightened all time..

Plz give details

Thanks
Neha



Plz reply Andy or anyone in the forum who is giving IP6 to his/her child.....Plz also guide about the others supplements (zinc , vit E etc) necessary to be taken along with IP6.As I m giving Desirox in morning ...on empty stomach....so when to give IP6

Its a request.....

Plz reply ASAP
Title: Re: Hardik
Post by: Andy Battaglia on September 01, 2015, 07:57:50 PM
You will need to open the capsules and mix the powder with something, possibly with the wheatgrass powder. Use only one capsule at this age. Don't mix it with high protein foods like milk.

The black stool may indicate that some iron is being removed. I wouldn't worry about the ferritin at this age. Around age 2, chelation should begin and then the iron can be addressed. In the meantime, the tea extract and the IP6 will give some protection to the organs.
Title: Re: Hardik
Post by: hardik on September 02, 2015, 05:18:43 AM
Hello Andy
Plz guide me

I  had bought IP6 from puritan pride....How and When to take it.?? Before and After taking Instructions...and which things are to be kept in mind with its ongoing,i mean, test which should be considered Before and After ....and all other imp info

Presently the baby(19 months old) has ferritan level 1720..,transfused after 25 days....daily diet includes normal food in addition with wheatgrass powder(1-2 gm) and green tea (1/2 tea pouch) and Desirox 250(1 tab on empty stomach)

his stool sometimes show black color...otherwise normal ...but passes all day long ( many times )in little amount .I try to keep him well hydrated but why is it happening  ....I dont know....

His energy level is good enough now but his increased ferritin makes me frightened all time..

Plz give details

Thanks
Neha

Thank you Andy

Plz also recoomand when to give IP6 as I m giving Desirox in morning on empty stomach....and wheat grass in evening mixing with juice....how 2 things can be given on empty stomach.........

and somewhere in the forum it is mention that IP6 should be given with zinc and insonitol....
 SUPPLEMENTS
Is IP6 and insonitol not a same thing....   :huh


I m a little bit confused....  ??? ???



Neha
Title: Re: Hardik
Post by: hardik on September 25, 2015, 02:50:12 PM
I have a question in my mind.......does IP6 cause loose motion .....I m giving my 19 months baby IP6(bought from puritan pride) in the morning empty stomach with wheatgrass dissolved in water...from the last 1 month but now his waste has a very foul smell with light yellow colour.....is it because of IP6...???.....or an infection from something else...

Plz also guide about supplements to be given in addition to IP6.....I had read somewhere in the forum that IP6 should be given with zinc and insonitole...
Is IP6 and insonitol not a same thing.....?????
Currently he is on vit D,calcium and folic acid and green tea
Title: Re: Hardik
Post by: hardik on September 26, 2015, 07:48:59 AM
plz reply....
Title: Re: Hardik
Post by: Andy Battaglia on September 27, 2015, 04:27:00 PM
IP6 may have a mild laxative effect, which is often welcomed, as iron causes constipation. It may be that you are observing iron being removed that you see in the yellowish tint.
Inositol and IP6 are not the same, but adding inositol can make IP6 more effective, but that will also add to the laxative properties.
Title: Re: Hardik
Post by: hardik on September 27, 2015, 07:21:09 PM
Thanks for ur reply Andy.....
Its always g8 to hear from you and when its come about iron chelation ......its feel like heaven.....thank u ....hope so ....next ferritan also shows us same thing....

Again i m disturbing all of you....but this forum(performing excellently) is the only hope to gain some knowledge about thal and all so plz if u or anyone in the forum could tell following things :----

1)As baby Hardik is on desirox (1 tab 250mg) and IP6+wheatgrass ....so is there any need to get ferritan to be done early....,he had his last ferritan in august only which cames out be 1515 from 1 lab and 1900 from 2nd lab

2)Can IP6+ wheatgrass be given with readymade grapes fruit juice or orange juice as they contain high amount of inositol because if i prefer capsules then it may be possible that baby Hardik will have more loose bowel movements all day long which can make him feel weak.

3)drops of Zinc to be given......,on daily basis

4)Other supplements required to be given on necessarily basis. At present he is on vit D(1 ml ) , Calcium(2 tsp) and folic acid (2.5mg) daily +   Green Tea(1/2 tea bag)

5)I had heard and read about THALLIDOMIDE(+wheatgrass+desirox) pros and cons.....and one of my known who is Thal Minor( but having BT on regular basis due to growing needs) is taking it after consulting a doc.....and thus having no BTs from last 4 months.............., Can u plz throw some light on it.


Plz reply soon as one of my friend is coming from USA so if capsules are preferable ......,I can order them from puritan pride(same brand as of IP6)  and can save shipping charges which means same amount as of original thing price


Thank u
Neha

PLz reply soon

Title: Re: Hardik
Post by: Andy Battaglia on September 28, 2015, 03:57:30 AM
1) There's no point in frequent ferritin testing right now. The child is still getting used to the chelator, and it's too early to be worrying about the iron load.
2) Yes, you can mix them with juice. Desirox can also cause loose movements. This is more likely than being caused by IP6.
3) Zinc drops are good at this age.
4) Natural vitamin E capsules from Puritan. 100 IU at this age. These can be opened and the gooey liquid mixed into any food.  I wouldn't suggest much else at this age.
5) As I understand it, Dr Ramanan is using thalidomide along with hydroxyurea and wheatgrass and having good success. I don't know much about the use of thalidomide.
Title: Re: Hardik
Post by: hardik on October 17, 2015, 05:48:11 PM
Hello Andy
Plz solve this QUERY

When my baby was 3 months old....he got his first transfusion....at that time his electrophoresis/hplc reports says that :---

hbf==96%(very high)

hba==4%(very low)

hb a2==2.2%(within range)

1) -->  As DR RAMANNAN therapy increases fetal hameoglobin only .....then why did the transfusion happened ....as hbf was pretty nice at that time ?
2)-->  Is there any need or demand of doing electrophoresis/hplc again ?
3)-->  what is the actual base of DR's therapy ?
4)--> how to know gene mutation of child....?what is its use in bmt??

I am really confused as on talking to person taking therapy.....results in positive attitude ....but moving against nature(as god made our body system to turn hbf to hba) made me confused everytime..

Title: Re: Hardik
Post by: Lokkhi maa on October 19, 2015, 04:43:01 AM
Hello Andy,

After 9 transfusions on last April my babies ferrittin was 459. Is it necessary to test now or we take some more time? She is now completed 2 yrs old.What do you think about hydroxurea application?

My baby is not interested to take any food.After or before transfusion never she get interest.She just swallow her food with water and maximum time after completing she vomit the all...We are really tired and this is too hard to give her food.She taking daily 5 ml Zinc Syrup but why her appetite is so bad can't understand.She likes just only water and any kind of juice.What to do ??? Please advice..
Title: Re: Hardik
Post by: Andy Battaglia on October 19, 2015, 03:41:42 PM
Hardik,

Percentages are no indication of total Hb level. Thal majors will always show nearly 100% HbF, but it's the total Hb that matters. If your HbF is 95% but your Hb is only 5, then it is insufficient.

1) If the total amount of HbF is increased, then the Hb will rise. The body of a thal major makes more HbF than normal, but not enough to survive. By adding substances that stimulate HbF production, it is possible in many cases to produce enough HbF to live with either reduced transfusions or eliminated transfusions.

2) Electrophoresis is affected by transfused blood, so unless a break from transfusions is taken, you won't get a true reading by electrophoresis.

3) From what I understand, Dr Ramanan is using a formula he devised that includes hydroxyurea, thalidomide and wheatgrass. The specifics have not been shared by the doctor as of yet.

4) The gene mutation can be determined by DNA analysis

This therapy increases HbF production. It will not produce HbA.

Title: Re: Hardik
Post by: Andy Battaglia on October 19, 2015, 03:43:00 PM
Lokkhi,

I would suggest stopping all supplements to see if the child's appetite is better. If she does start to eat again, introduce supplements in low doses one at a time and see if something she is taking is disagreeing with her. Keeping her Hb high, >9 will also help the appetite.

The ferritin level should be checked again.
Title: Re: Hardik
Post by: hardik on October 19, 2015, 04:54:02 PM
Hello Lokkhi maa

As my baby is of same age ......I also faced same problem of poor appetite of Hardik.....but on giving Pabri(as I told u earlier that it act as a liver tonic and increases appetite )only 2-3 days after transfusion moves me and baby to the comfort zone of good eating ......plz try if u get it.....as it can be found easily in abundant in any part of asia
Just ask older ones in your family....they must have knowledge of it.I give only 2 spoon pabri plant juice ....and ....if the problem still persists ...i continue it for 2-3 days more......so in all a dose of 7 days ....is sufficient .....but depends on body needs.....

plz also check her SGOT and SGPT and other liver function LFT tests on regular basis if she is on Desirox/Defrisirox......as appetite directly relates to liver(according to my knowledge)......

you can see the picture of pabri on my previous page ....

Regards
Neha
Title: Re: Hardik
Post by: Lokkhi maa on October 20, 2015, 03:01:17 AM

Thank you so much Andy and Neha.. :heartpink :heartpink
Title: Re: Hardik
Post by: hardik on December 05, 2015, 03:56:09 PM
Can desirox 250 mg and wheatgrass be given at same time.......??? to a 2 year old baby weighing 11 kg...
Title: Re: Hardik
Post by: Andy Battaglia on December 06, 2015, 03:48:40 PM
They can be given at the same time, although there is no reason to do so.
Title: Re: Hardik
Post by: hardik on January 20, 2016, 05:34:26 PM
HII ANDY
 
First of all sorry to disturb u on ur special day......but u made urself so much important for all of us that whenever anyone of us have any problem.....the first that word came in our mind is ANDY.....

On Jan 19th....hardik(2 year weighing 11.5 kg) had his BT and his LFT test has also been carried out.....Shocking results are as below:---

Biliburin (Total) =1.2(0.2-1.0)                                                 sodium = 139 (135-145)
Biliburin (Conj.) =0.2(0.25)                                                     Potassium= 4.8 (3.5-5.5)
Alkaline Phosphaste =177 (40-130)                                         Chloride =103 (98-107)
[bgcolor=#00FFF5]SGOT = 163(5-40)[/bgcolor]                                                             Urea =28(15-45)
[bgcolor=#00FFF5]SGPT = 427 (5-35)  [/bgcolor]                                                             Creatitintine = 0.6 (0.8-1.8)
                                                                                          Uric Acid = 5.1 (2.4-7.0)
                                                                                          Calcium =9.6(8.0-10.4
[bgcolor=#00FFF5]Last ferritine=1147 [/bgcolor]on 18th Nov 2015

The Doctor advice to stop the Desirox 250mg(1 tab daily) for 2 weeks......then to test again for SGPT and SGOT and if it is in normal range...then to start Desirox  again with same Dose

Now Plz guide about Following:
1)-->To Continue or not with Calcium(10 ml daily) and Folic Acid(2.5 mg daily and it is not L-methylfolate)
2)-->Can I give him Green tea or to stop it for now.
3)-->IP6(1 cap daily 510mg) can be given or not or reduce dose can be thought of.
4)-->Wheatgrass can be given or not If yes,how much
5)-->Food/diet to Avoid and to give more for good heath and to improve Liver condition
6)-->how to chelate right now.


Hardik has a little bit swelling under his eyes....what to do ???

 
Title: Re: Hardik
Post by: Bostonian_04 on January 20, 2016, 08:50:43 PM
Hardik,
sometimes stomach upsets or viral fevers etc can cause increase in these numbers. In my opinion, if your child does not have fever, you can continue the chelation medicine. May be give a break with the supplements for now...after all he is just 2 years old. Have him drink lots of water and give him nutritious food with veggies/greens and protein. check the numbers again after a month and decide on next steps then.

Title: Re: Hardik
Post by: Andy Battaglia on January 21, 2016, 05:38:57 AM
Make sure the child stay well hydrated. This is very important for all using chelators. but much more important for young children. I also suggest you get milk thistle capsules for the child. Milk thistle herb is therapeutic for the liver and can help maintain normal liver function when using chelators. It is also useful for the pancreas. We have heard several reports of milk thistle being the solution to high liver function tests.

The supplements are fine to take normally, but with young children, it's okay to take on alternate days. Take some supplements one day and the rest the next. It's easier on the stomach. Any time there is stomach discomfort, stop IP6 until the problem rectifies. I wouldn't add anything new until the liver function is normal. As Bostonian said, these levels can be affected by illness, so a one time measurement can be an exception. If this was to continue with use of the chelator, you may have to re-examine the choice of chelators. I think it's likely that this will get under control as the child's body gets more used to the chelator. If the chelator is stopped currently, try giving it every other day for a week or two and then get tested again. get tested early in the day, as activity raises these levels. You will get a truer test early in the day. If the tests are close to normal, daily use of the chelator can be started. You might also find that taking Desirox with food improves these test results.
Title: Re: Hardik
Post by: hardik on January 24, 2016, 06:22:35 PM
Thanks Bostonion 04 and Andy for ur replies .....

I had one question that hba2 is considered as a main thing for checking Thal major.....but.....what if the child has normal hba2 and high hbf and thus is diagnose as Thal major as the case with hardik....

His two times tested report says
Hba2-->2%
Hbf-->93%
Hba-->7%

Can raising more hbf helps him in getting off from transfusions...
Title: Re: Hardik
Post by: Andy Battaglia on January 24, 2016, 07:50:32 PM
HbA2 is more useful for diagnosing thal minor. It's value is limited in diagnosing more severe types of thal.

This child is not beta zero major, as there would be no HbA present. Raising HbF can reduce transfusion requirements. This is the goal with hydroxyurea and wheatgrass therapy. Wheatgrass can help but is not enough by itself to eliminate transfusion.
Title: Re: Hardik
Post by: hardik on May 15, 2016, 02:07:30 PM
Hello Everyone.....

As i observed that whenever i gave ip6 to hardik his sgot and sgpt start increasing.Earlier when his sgot /sgpt reaches 160/427 ..in Jan 2016...... I stopped desirox and ip6 for a month to get the values back to normal which took around a month ....and then firstly i started only desirox ,....not ip6. ...values remain same as last tested and then i slowly add on ip6 on alternate days ....his sgpt and sgot again increased to 160/143 .....and he had swelled eyes .....everytime...when liver values changed.

.. .....Is it possible that intake of IP6(510 mg) by 2 and half child weighing 12 kg shows adverse effects on SGOT and SGPT.....and increases it beyond original values by 3-4 times.

And one more question is:---

My. Mother 's blood always remain at 6(I think she is Thal minor and I m inherited from her but she refused to test) and is not increasing from past 2 years .She is around 55-60 of age....and now her health is refusing to favour her....and cause severe pain in all joints especially knee joints,weight is increasing day by day instead of cycling ,exercise and walking ...

Plz guide about hardik and what to do to increase her blood levels ....and energy too...can she take IP6......plz tell
What to do for her good health
Title: Re: Hardik
Post by: hardik on May 18, 2016, 01:45:32 PM
Hello Everyone.....

As i observed that whenever i gave ip6 to hardik his sgot and sgpt start increasing.Earlier when his sgot /sgpt reaches 160/427 ..in Jan 2016...... I stopped desirox and ip6 for a month to get the values back to normal which took around a month ....and then firstly i started only desirox ,....not ip6. ...values remain same as last tested and then i slowly add on ip6 on alternate days ....his sgpt and sgot again increased to 160/143 .....and he had swelled eyes .....everytime...when liver values changed.

.. .....Is it possible that intake of IP6(510 mg) by 2 and half child weighing 12 kg shows adverse effects on SGOT and SGPT.....and increases it beyond original values by 3-4 times.

And one more question is:---

My. Mother 's blood always remain at 6(I think she is Thal minor and I m inherited from her but she refused to test) and is not increasing from past 2 years .She is around 55-60 of age....and now her health is refusing to favour her....and cause severe pain in all joints especially knee joints,weight is increasing day by day instead of cycling ,exercise and walking ...

Plz guide about hardik and what to do to increase her blood levels ....and energy too...can she take IP6......plz tell
What to do for her good health

Plz reply
Title: Re: Hardik
Post by: Waleed on May 18, 2016, 01:54:17 PM
Hardik,

Increased LFT's would be more likely because of desirox than ip6. You can see by dividing desirox dose if it helps. Also, for such a young child with not so high ferritin, it really needs to be seen whether desirox dose is absolute necessary at this point or not. Usually, there is some room to pause chelation for a while in very young children. You should include wheatgrass in her diet as it may prove very beneficial in your case. I would be focusing more on ip6 and wheatgrass at this point than forcing desirox to work.

As for your mother, low Hb do cause joint pains, wheatgrass can increase energy levels when Hb is low. Anyone can take ip6 so there's nothing wrong in that. Calcium and Vitamin D tests can also be done to see if there are deficiencies, as they are very common in women as they age.
Title: Re: Hardik
Post by: hardik on May 18, 2016, 02:58:32 PM
Hello waheed
Thanks for reply
But his(weighing 12 kg) ferritin is very high 2131....and I m givving him only 250mg right now ....due to high liver vàlues and thats on alternate dates....feeding him with plenty of water......and Wheatgrass also.......even then these values making me so much worried for his health ......plz guide
Title: Re: Hardik
Post by: Andy Battaglia on May 19, 2016, 01:59:11 AM
Have you tried milk thistle?
Title: Re: Hardik
Post by: Dharmesh on May 19, 2016, 08:45:03 AM
It is the general observation that Desirox brand increases the LFTs more in thals than other brands
Title: Re: Hardik
Post by: hardik on May 19, 2016, 02:25:18 PM
Hello thalpals
Thanks for reply.....

Kk if I stop desirox right now for 10 days ......then is it possible that giving him only IP6 ...and Wheatgrass.... Can help to reduce ferritin and lowering his lft values as I have to go on 30 of this month to hospital..... So then I can talk to doc about his health factors..

And plz also mention better alternative to desirox.


Thanks
Neha
Title: Re: Hardik
Post by: Andy Battaglia on May 19, 2016, 11:14:31 PM
Yes, you should take a break from the chelation to get the liver scores back to normal. After the break, introduce the drug back slowly, taking the dose every other day for two weeks and check the liver scores. Make sure the test is done early in the day when the liver score is lower and that the child is well hydrated for the test. If it's back to normal, resume daily chelation. Continue the IP6 and wheatgrass throughout.
Title: Re: Hardik
Post by: Dharmesh on May 20, 2016, 09:49:13 AM
Tab Defrijet (Sun pharma) and Tab Asunra (Novartis) are another brands.
Title: Re: Hardik
Post by: hardik on August 08, 2016, 07:26:26 PM
Hello Andy

It's so frustrating when you know the fault and can't repair it......The same is happening to me..
Hardik's serum ferritin always shows near about 2000 value...as he is on desirox 250 mg(2.8 year,13 kg) and moreover desirox doesn't suit him anyway....and always increases his Lft (latest sgot/sgpt are 70/122) when this time I tried to increase the dose by half ...(on my risk).
I tried split dose(1/2 morning but not empty stomach. ,IP6 and Wheatgrass in afternoon after 6 hours gap and 1 tab of desirox in night again after 6 hours gap)  ....but that doesn't work also. The only hope is Wheatgrass (3 grms)and IP6(1cap-510 mg). It's almost about 1 yr that doc had started his desirox but no sign of iron removal till now..(no black stool) and moreover now the baby screams for stomach ache daily(may be effect of iron)..though I gave him plenty of water...but the doc ....ohh their attitude...and .... thoughts that she knows everything is so unbearable........and the best part ...single hametologist....with not listening attitude makes it worst.What to do...?where to go??? Don't know ??? :mad :wah

Guide about....
1)which milk thistle to buy ,when to give and how much quantity for baby .
2) which chelation to adopt and how to start without doc advice.
3)what to do for stomach ache.
4)can lack of folic acid cause stomach ache? As I gave 5 mg on alternate days.....can dis be the reason?
Title: Re: Hardik
Post by: Parin on August 08, 2016, 10:13:48 PM
Hey Hardik,

Cool down everything will be all right.Where are you from?
Title: Re: Hardik
Post by: Andy Battaglia on August 09, 2016, 05:07:40 PM
Have you tried the desirox right after a meal? Any milk thistle supplement that is just milk thistle will suffice. There is also a supplement called Liv 52 which many find helpful for keeping down liver scores. The stomach ache is most likely due to the desirox, as that is a common side effect, and many patients deal with it by taking the drug right after a meal.
The scores are not high enough to consider stopping the drug, but I think with some trial and error, they will come down.
Title: Re: Hardik
Post by: Bostonian_04 on August 09, 2016, 06:35:28 PM
Hardik,

It takes time for S. ferritin to come down. It took more than two years to see a significant downward shifton our child when she first started chelation. The best way to know if the chelator is working or not is liver MRI.

for the stomach ache, try giving Zantac (Ranitidine) to your child. My daughter has significant stomach issues from using Exjade (even after taking Exjade with food, right after food, split dose and so on). so now she is on Zantac 75mg (twice a day - morning & evening) and the stomach issue is under control. Also we have seen that if she is eating every few hours (and drinking enough liquid) without a long gap between meals, the stomach issues are under control.

Your child is only 2.8 yrs age? if that is the case, In my opinion, don't feed him/her too many supplements. Just healthy meal at regular interval, lots of fluid, dose of ranitidine (to keep stomach ache under control), one multi-vitamin (iron free) and the chelation med. That will be enough.

I will suggest not to do any other chelation without doctor's advice. Just keep up the chelation with the right dose and get the side effects on Desirox under control. it will take time but it will work.
Title: Re: Hardik
Post by: BabyRiya on August 10, 2016, 01:20:56 AM
I am giving multivitamin polyvsol without iron 1 ml per day and folic acid with 5 ml of super shot wheatgrass.  I am exploring ugu leaves as it comes in dry and raw format.  Looking for a genuine source and retail company that sells authentic product. 
Also giving boiled organic egg
Title: Re: Hardik
Post by: hardik on August 20, 2016, 05:01:14 AM
Thanks Parin , Bostonian_04, BabyRiya ,Andy and everyone here  for ur kind help.....

yes Andy , your advice works .....desirox after meal...and it works...no complaint from last one week..
but I had reduce the dose to 250mg again(half morning and half night) and the swelling under eyes gone(symptom of increased Lft in his case)...
I want to order milk thistle...so plz advice about mg /kg required for a 2.8 year baby weighing 13 kg .
On PuritanPride 250mg /100 cap are available and on amazon link given below...varieties are there....so which to prefer
Plz also guide about the dose of IP6 according to mg/kg as of now I m giving I cap of 510 mg daily

http://www.amazon.in/s/?ie=UTF8&keywords=milkthistle&tag=googinhydr1-21&index=aps&hvadid=123337664411&hvpos=1o2&hvnetw=g&hvrand=1696327924218720613&hvpone=&hvptwo=&hvqmt=b&hvdev=c&hvdvcmdl=&hvlocint=&hvlocphy=1007751&hvtargid=kwd-27400525268&ref=pd_sl_297z169zvo_b
Title: Re: Hardik
Post by: Andy Battaglia on August 20, 2016, 10:45:41 PM
Splitting the dose works better anyway, so it should be done.
250 mg milk thistle daily or every other day is sufficient at this age. The IP6 dose is also as high as it should be. If either IP6 or milk thistle causes any digestive issues, take every other day.
The brand shown in this link is excellent. Any brand like that which is simply milk thistle is best. Open one cap and mix with food or liquid. If you use this brand, take one every other day. http://www.amazon.in/Zenith-Nutrition-Silymarin-Thistle-Standardized/dp/B008L99WL0/ref=sr_1_3/256-0255141-7926214?ie=UTF8&qid=1471732956&sr=8-3&keywords=milkthistle
Title: Re: Hardik
Post by: hardik on April 19, 2017, 05:59:24 AM
Hello everyone here.....

I want to know :-

1) what is inline filtered PRBC?

2)Benefits of using bedside filter with inline filtered PRBC..

3) difference between nat tested and inline filtered blood?

4) what is buffy coat in blood filteration?



Thanks
Title: Re: Hardik
Post by: hardik on May 13, 2017, 07:08:01 AM
Plz reply....???
Title: Re: Hardik
Post by: Andy Battaglia on May 14, 2017, 04:46:26 PM
Can someone more familiar than I with transfusion procedures answer this?
Title: Re: Hardik
Post by: Dharmesh on May 18, 2017, 06:41:44 AM
Hello everyone here.....

I want to know :-

1) what is inline filtered PRBC?

2)Benefits of using bedside filter with inline filtered PRBC..

3) difference between nat tested and inline filtered blood?

4) what is buffy coat in blood filteration?



Thanks

Before some years i got same kinda question when i read blood requisition form of Rajkot Voluntary blood bank. There were many kind of blood product from whole blood to leucodepleted RBC , buffy coat removed and what not?

But from above all question over time we knew that the best blood product for thals is Leucodepleted RBCs/PRBCs tested with NAT method.

ans to ur q 1. It is clinic side blood filteration If Ii am not wrong andy can correct me here
2. No benefits ( i confirmed it earlier with doctor ). Bed side filter helps only if the blood transfused within 48 hours of collection.
3.  Wrong comperision.
NAT is a method of blood testing it is far better than ELISA testing method of blood. NAT is having very low window period consequently more safe blood than ELISA.

4. I never bother to get answer this question as i know Leucodepletion blood product is best so why to think on other blood product.?


Title: Re: Hardik
Post by: hardik on July 01, 2017, 06:37:17 AM
Hello Everyone here...

Hardik weighing 14.5 kg age around 4 yr is on IP6 of puritan's Pride from last 2 years ...but now I am left with only 2 month stock ...and I urgently need to order IP6 but unable to to find new link to IP6 of puritan's as site is updated so if anyone in group can help me out with current link ..I will be very thankful.

Andy plz guide me about the dose according to increasing weight and age. Cell Forte also provide IP6 and Inositol veggie capsules. Which one is better??

Thanks
Title: Re: Hardik
Post by: Andy Battaglia on July 02, 2017, 04:57:17 PM
Cell Forte is better than IP6, alone because it also contains inositol, which increases the effectiveness. Check http://www.amazon.in
Title: Re: Hardik
Post by: Dharmesh on July 08, 2017, 03:05:57 PM
Hello Everyone here...

Hardik weighing 14.5 kg age around 4 yr is on IP6 of puritan's Pride from last 2 years ...but now I am left with only 2 month stock ...and I urgently need to order IP6 but unable to to find new link to IP6 of puritan's as site is updated so if anyone in group can help me out with current link ..I will be very thankful.

Andy plz guide me about the dose according to increasing weight and age. Cell Forte also provide IP6 and Inositol veggie capsules. Which one is better??

Thanks
Puritan has done not good to indian users. They have launched dedicated indian websites and banned access to US site so that no one can access that and order. But this is not the problem.
Problem lies where they do not offer as much options as their US site. So many products are missing at all at indian site.

So currently if someone want to get supplements from them, they have to asked to their relatives, friends etc who visits US/UK/Australia to bring those supplements directly from there.

Another options is to wait and watch till they start selling the required product.

PS : I have 2-3 bottles left of Natural Vitamin E 400 IU with 50 mcg salenium expiring in Oct -18 which if anyone needed i can courier in India. It's cost is Rs 870+courier per bottle.
Title: Re: Hardik
Post by: Pratik on July 08, 2017, 04:15:57 PM
Puritan has done not good to indian users. They have launched dedicated indian websites and banned access to US site so that no one can access that and order. But this is not the problem.
Problem lies where they do not offer as much options as their US site. So many products are missing at all at indian site.

So currently if someone want to get supplements from them, they have to asked to their relatives, friends etc who visits US/UK/Australia to bring those supplements directly from there.

Another options is to wait and watch till they start selling the required product.

PS : I have 2-3 bottles left of Natural Vitamin E 400 IU with 50 mcg salenium expiring in Oct -18 which if anyone needed i can courier in India. It's cost is Rs 870+courier per bottle.
Very true, I struggle a lot too. Can't figure out why they had to do this.
Title: Re: Hardik
Post by: hardik on July 18, 2017, 06:43:49 AM
Hello Andy

I had read your thoughts on L-Carnitine on Facebook. Will you please elaborate about this .

Hardik weighing 14.5 kg age 3 and half..is on calcium , IP6+wheatgrass(empty stomach) , folic acid and chelation med DESIROX.

1) Which other supplements should i prefer to improve his life quality ?
2) I read about L-methyl folate on this webpage but not available with chemist here..  so how to know if folic is absorbed in body or not and how to get L-methyl folate
3) Here docs don't advice any multivitamins...so if we prefer any multivitamin(without iron ) than what should be the dose.
4) plz provide any link about diet care of thalassmic child

Thanks
Title: Re: Hardik
Post by: Andy Battaglia on July 24, 2017, 09:57:24 PM
L-carnitine can be taken in low doses at age 3. L-carnitine adds nitric oxide, NO to the body. NO makes blood last longer and also helps protect against the long term problem of pulmonary hypertension that often affects thals as they get older.
See if you can find Metafolin as a folate supplement.
I don't typically advise multivitamins because they usually don't have enough of any vitamin in them.
See this link for supplement advise. A small child would take about 1/4 dose of most. http://www.thalassemiapatientsandfriends.com/index.php/topic,5190.msg48860.html#msg48860
Diet should be nutritious foods, with plenty of fresh fruits and vegetables. Avoid junk food as much as possible.
Title: Re: Hardik
Post by: Pratik on July 26, 2017, 05:05:12 AM
Hi,

Has your son undergone BMT or Dr. Ramanan's treatment?
Title: Re: Hardik
Post by: hardik on November 02, 2017, 05:24:41 AM
Hello All

No pratik till now i had not plan for BMT due to its cost

Andy ....will u plz tell me that.... What is hydroxy urea ...and can any one take it or we have to prescribed it.
Title: Re: Hardik
Post by: Andy Battaglia on November 11, 2017, 05:34:52 PM
Hydroxyurea is a drug with many uses. In thalassemia, it is used to try and raise the fetal hemoglobin. It does this by suppressing the bone marrow, which can activate the fetal Hb gene. It works for many patients, but should be taken with folate and B12. I also suggest taking wheatgrass tablets or powder. All of there will help the drug's ultimate effects.
Title: Re: Hardik
Post by: jsbhavsar on November 16, 2017, 12:39:35 PM
L-carnitine can be taken in low doses at age 3. L-carnitine adds nitric oxide, NO to the body. NO makes blood last longer and also helps protect against the long term problem of pulmonary hypertension that often affects thals as they get older.
See if you can find Metafolin as a folate supplement.
I don't typically advise multivitamins because they usually don't have enough of any vitamin in them.
See this link for supplement advise. A small child would take about 1/4 dose of most. http://www.thalassemiapatientsandfriends.com/index.php/topic,5190.msg48860.html#msg48860
Diet should be nutritious foods, with plenty of fresh fruits and vegetables. Avoid junk food as much as possible.

In my 30th September evaluation at the Bone Marrow Transplant and research center I heard exactly the same words the two doctors (Hematologist and Interventional Cardiologist) speaking about my health and some words getting uttered as Nitric Oxide levels and something. My file has a noting by the Hematologist to keep checking for pulmonary hypertension every 3 years.

But nothing was given to me to increase my NO levels.

What drugs and foods increase NO levels in our body?
Title: Re: Hardik
Post by: Andy Battaglia on November 23, 2017, 08:01:18 PM
I suggest about 10000-2000 mg L-carnitine or L-arginine daily to help fix NO in the body. Search online for lists for foods that boost nitric oxide levels. Here's an example, https://articles.mercola.com/sites/articles/archive/2017/07/17/heart-healthy-foods.aspx