Thalassemia Patients and Friends
Discussion Forums => Iron Chelation Corner => Topic started by: zara hassan on April 20, 2015, 06:20:30 PM
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Hello everyone.
I am a new member here. First i want to tell about myself that I am Zara from Pakistan. I have a 20 month old son diagnosed with beta thalassemia major. He was born in England so when he was just 4 weeks old they confirmed us about his thalassemia. but due to some reasons we had to come back to Pakistan. He was first transfused when he was 4 months old at 8.5 Hb. Its always been a problem to find his vein to pass the canula. Now we transfuse him every 5 weeks and try to maintain his Hb at 10. We checked his ferriton level when he had 12 transfusions and he was 16 months old. His levels were around 1150 so the dr suggested us to start 250 asunra first for 2.5 months then increased it to 300 and now from last 3 days I am giving him 400 asunra in some water and orange juice. His weight is 13.5 kg. Its been 4 months since iam giving him asunra. I think he has pain in his joints and legs bcz sometimes he presses his legs. He is too small to tell me about ay sideaffect. We checked his ferritin level again this month it was 1250 it has not decreased but increased 100 units after taking asunra for 3 months. The dr told us to check the ferritin level after 6 months but we checked it for the safe side.
Now the problem is this that he is not willing to take the medicine. He cries alot. First i use to give him some chocolate, candy or anything so he can drink it. But now he dont want anything. I have to forcefuuly give him while he is crying but i am afraid he can choke. I've read on ur site somwhere that now we can give it with food and even mix it with food like yogurt. I am just worried that whether asunra is still effective in yogurt or any food or not?
can you all plz give me some ideas and guide me.
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Zara,
welcome to the forum. 1st of all want to mention that with Exjade, you need to monitor the ferritin on a regular basis (we do it monthly) to know if it is working or not. Also monitor your son's kidney and liver functions monthly to make sure Exjade (aka Asurna) is not creating other issues. As per your question of mixing with food, yes, you can certainly mix Asurna with any food.....Doctor in Oakland, CA told us not to mix it with hot (temperature wise) food. That's about it. As per Dr. Lal (Oakland, CA), mixing with food will actually reduce the stomach issues patients complain about. Yogurt, cereal, ice cream, smoothie etc all should work. you can also try switching food to see what your son likes better or to break the monotony... for us, we stick with juice for our 8 yr old daughter....but we switch the juice on a regular basis...1st it was apple juice, then orange and now we are off to apricot/mango and i am already thinkign which one should be next... :smiley
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Thanks alot for ur reply.
From today i will split his dose in two and give him mixed some food bcz giving with juice was a big problem.
Today i gave my son 200 asunra crushed and mixed with yogurt on empty stomach. I will give the other 200 in the evening mixed with his cereal (cow and gate banana porridge, but it has some iron in it.)will it cause a problem?
Can i mix asunra with some banana or potato? Bcz he is a very picky eater dont eat meat or any fruits except banana.
and i want to ask one more thing after giving asunra mixed with yogurt, Do i have to give him water to drink as well?
Really sorry for my stupid questions but i can only ask to u ppl.
Here in Pakistan drs really dont bother if ur child is even dying. They dont know about any updates or any test for thalassemia children. Our haematologist he doesn't even see my child and just write the transfusion and tablet dosage every month. No dr (my son's hemo or child specialist) told us to do kidney or liver test after or before starting asunra.
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Dear Zara,
As I know from the discussion of this forum Asunra or Exjade are more effective if it is take with vitamin C. Last week my 18 months babies ferritin found 459 so not yet start any chealaton but if you study this forum you will get so many answers that will be helpful for you and your baby also...
Best Regards
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Thank you lokhi maa.
Andy plz I will be so thankful if you reply to my posts I'm detail.
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Zara,
since you are having difficulty giving your son med...so don't split the dose now and make it a hassle twice a day...it is probably too much stress every day....That will be my thought....
We had split the dose at some point when daughter was complaining of stomach issues but we do not do split dose anymore and it didnot affect iron chelation even with once a day dose. It is just making sure the dose is given every day without missing any dose, unless the child has fever.
With Exjade, the child must stay hydrated well but that is a general guideline in hot weather anyway ..so don't specifically think Exjade and get stressed....As I mentioned, any food (at room temperature or cold) is OK so use your son's favorite food choices and use it.....Currently doctors do not recommend taking Exjade in empty stomach. so don't stress about giving him Exjade in empty stomach.
Monitoring kidney and liver function is very important. so please do that diligently every month when on Exjade.
p.s. Iron in the food is not easily absorbed in the body...every transfusion gives him more iron......It is like a big bucket of iron from transfusion vs a spoon of iron from food.... so do not worry about iron in food unless he is eating huge amount of red meat every day..
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Thanks alot :)
I gave my son in split dose today. One in the morning 9 am empty stomach crushed and mixed with yogurt and the other 200 in the evening at 7 pm crushed and mixed with his cereal. He is having constipation also. Is this bcz of asunra? or maybe bcz of his diet bcz he doesn't eat any fruit,veggies,meat just cereals and one half boil egg in the morning. First it was a problem for him to chew anything and he used to gagg alot so i was afraid and i didnt give him vareity of foods and now i try and he doesnt want to eat anything.
I am giving him folic acid, multivitamin(without iron) and a calcium medicine.
I will definetly do the liver and kidney tests this time when i will go for his transfusion.
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Zara,
The most important thing is that he takes the chelator. It doesn't matter how you give it. Whatever food he will eat with the tablets crushed and mixed in is fine. Bananas are a very good food and recommended. Potatoes are also very good and most nutritious when not peeled. Wash the skins before using. It is best with the skin because that's where most of the minerals and much of the fiber is. He needs more fiber in his diet so he isn't constipated, and remember that insufficient fluid intake also adds to constipation, and that when using Exjade, one must also take much water regularly to help protect the kidneys and liver. Keep trying new foods, especially fresh fruit and vegetables, and try to use breads containing whole grains.
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Zara, if there are any questions that have not been answered, let me know. I've been having some physical issues that have limited my ability to work at the computer for extended periods and have had trouble keeping up.
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ANDY thanks alot for your reply. I pray that you get well soon. You are a big hope and inspiration for all of us. I joined this forum bcz of you.
Here in Pakistan highly qualified drs don't have that much information which you have. I am really afraid if something happens to my son who will I ask bcz drs don't bother. Not any dr told us to do the serum ferritin or liver test. He started asunra at 16 months of age so he is very small to tell us about any side effects even if his tummy hurts how can he tell me. I am really concerned. He is our only son.
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You have got plenty of good advice on the forum. Please do not be worried and confused. You are doing everything right so far. Keep giving asunra (no matter how often or with what food), plenty of water and check for kidney function, ferritin level on monthly basis.
You are best to determine how to manage your child in terms of food. The other problems you mentioned, tummy ache, picky eater etc, they are normal with any child (thal or not).
Do not pay too much attention on ferritin levels at this time (just keep records on monthly basis), ferritin levels tends to increase when chelation starts and it declines over time. Keep visiting and gain knowledge.
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thank you so much for your kind advices :)
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Hello everyone
I had my son's transfusion 4 days back and we also did his kidney and liver tests. Unfortunately the ALT reports are not normal
Serum Alt 112 upto 42U/l
Serum creatinine 29 27-62/l
plz plz tell me what to do. I am really worried. I cannot repeat his tests weekly as it's really difficult to find his veins and he got two pricks on his transfusion both on his feet. I don't know what to do to ease my babies pain.
.
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And also tell me which foods can help to reduce ALT ? Someone told me to give him glucose bcz it helps in reducing Alt and jaundice?Is it dangerous to have High ALT level?
We have been giving him asunra for almost 5 months (he is just 20 months now) and from the last three weeks I have splitted his dose and giving him with soft foods. But his stool colour hasn't changed much it's still light brown. Does that mean he is not chelating well?
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ANDY I will be grateful if someone will do reply and tell me their experiences about asunra and high ALT level.
And also I want to know if anyone is giving asunra to their babies with food (crushed and mixed with food). Plz share with me and help me.
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Zara,
The ALT's are high, but the drug is not stopped unless the ALT levels are 5 times normal. But, you do want to lower the levels from where they are currently.
The first thing is to make sure the child is always well hydrated, and especially during the blood test, so you get an accurate reading. Exjade/Asunra does require much water, so make sure the fluid intake is good.
Keep the dose split in half and take twice daily. The tabs can be crushed and mixed with any foods. There is an herb called milk thistle, which is a very mild herb and will help keep the ALT levels lower. Find this herb and give it to the child daily. It can easily be found sold online by vitamin companies.
Next time the child is to be tested, have it done early in the day and make sure the child is well hydrated. This should give you a lower test result. If the test is still high, you should consider stopping the drug for a week and then restarting at half a dose for at least one week before going back to the normal dose.
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Thank you so much for ur reply ANDY
I will definitely find milk thistle and give it to my son.
Can you tell me how to give it if it's in the form of capsules or tablets? And also tell me after how many weeks I should repeat his ALT tests(in how many weeks it will rise to dangerous level) as I told u before that it is not possible to get his tests done weekly bcz his two veins got punctured on his transfusion day and it's really difficult to find his veins.
His stool colour hasn't changed much. Ivery read that it should be dark brown or blackish brown. Does that mean he is not chelating well?
Thanks again
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It probably just means his iron load isn't very high yet. This is why if a break from chelation is needed, it's not such a big deal. He is young and his iron load won't be so serious yet.
Testing should be at least monthly. Can it be combined with another blood draw, to minimize how often he is pricked?
Milk thistle comes in capsules. If needed, you can open them and mix it with any food.
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Thank you so much for ur detailed reply ANDY. You are a big source of information and inspiration for ppl like us who live in a country where drs don't bother about new researches or about parents problems.
You know when I told Abdullah's hemo that we are giving him asunra with food and it's a new research he said he doesn't believe these kind of researches as they often come and are again refused. So we should adopt that thing that all ppl are using asunra with water or juice and it's the proper way to take this.
Yes we always do his blood tests on his transfusion day, when the nurse pass canula she draw blood samples from it. But because of his high ALT we will check it after two weeks if it's possible.
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Zara
Good Evening
My daughter is taking 800 of asunra. earlier her ferritin level begun to rise and then after discussion with doctor we split the dose in half and gave her twice a day and it has given some dramatic effect and last mth her ferrtin level has gone down to 1330 from 2000 in last 3mths. I always recommend walnuts which soaked in water for 12 hrs, flex seeds and almonds and if ur n.v eater then once a week egg white and chicken.
Doctor in PGI say upto 5 times the alt level is tolerable with asunara and one query why not started with kelfer. it is still the best chealtor as far as i think
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Thank you for ur kind advise but our dr here said that asunra is best and they normally start asunra to all patients.
Shall I soak walnuts almonds and flax seeds all in water and then gibe them to my son or what ??
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No only walnuts and almonds are tone soaked and aldi seeds could be grounded and given in porridge ore any other solid diet . 1tsf is sufficiently
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Hello everyone
Plz help me from which site I can order milk thistle, Ip6, Vitamin E etc
Bcz these things are not available in Pakistan.
I will be grateful if someone do a quick reply bcz it takes time for doing order and shipment.
Thanks again
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Have you checked GNC?
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No I didn't know about it.
I will definitely check it now.
Thanks alot ANDY
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have u tried nesquik calci n+ . it is a chocalate drink like bournvita but no iron added to it. only replenishes the calcium. it is made by nestle and is imported in india and cost around 400 for 500 gm packing. strawberry flavour is also available. I am giving it to my daughrer for last 6years. if u wish u could try
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Thank you. I will try nesquik.
Andy I have checked both GNC and puritan but they both don't do shipping in Pakistan. What should I do?
I really want to start my son milk thistle, Ip6 and vitamin E.
I've read in ur posts about the importance of these three.
Plz tell me how can I buy them.
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Zara, one of our moderators passed this info onto me.
Hi Andy, I don't think IP6 is available in Pakistan, I always used to order it from puritan, Tariq shared a link with me the other day from where he ordered his gnc wheat grass tabs, let me give you that, otherwise vitamin E softgels should be available at any drugstore, the ones we used to use before puritan were called "tokosvit" they were the natural ones, not the synthetic ones.
http://www.vitaminhive.com/herbs-natural-remedies/259-gnc-superfoods-wheat-grass-60-servings.html
Puritan is a US mail order company. They do ship internationally and have fairly reasonable prices and do a lot of specials like by 2, get 3 free.
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Dear Andy,
How milk thistle and Ip6 work? What is ALT and when it is need to test? What the normal level of ALT ? Please share..
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Lokkhi,
Milk thistle is a healing herb that helps repair liver tissue. It is used as an herbal tonic for the liver and other organs, and some thals have seen a decrease in ALT levels when using milk thistle. ALT's are liver function tests that should be done regularly when using Exjade or Asunra. ALT's fluctuate a lot, so smaller increases are not a problem. Staying hydrated and using milk thistle can both help keep the levels lower. IP6 is related to the B vitamins. It is already found throughout the human body. It is found in bran of grains like rice and is used as a supplement by thals, as it is a mild iron chelator that can supplement the drugs, and it also inhibits the actions of iron in cells, thereby protecting the cells from iron damage.
Milk thistle is a common wild plant and you can see a picture of it at http://www.thalassemiapatientsandfriends.com/index.php?action=gallery;sa=view;id=274
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Thanks for the information which you shared ANDY.
I have checked the sites puritan and GNC both but when we go yo checkout and select the country they don't have Pakistan in it. I don't know how other people are ordering from there.
Plz ask them.
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Thanks Andy for the helpful information and I really surprised to see the Milk Thistle pic...Its a flower !!! woaw !! :doh
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Try this link, Zara. http://www.shoppingbag.pk/index.php?_a=amazon%2FviewProducts&searchStr=ip6&category=All
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Zara puritan can be ordered here in Pakistan Via shipping companies,you can msg me for further inormation.
Zaini .
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Dear Andy,
My Bank notified me that, for online purchase my Visa and Amex credit card will have to endorse by USD.For this bank required from me my passport copy and E-Tin Certificate. I already apply but it will take time for complete all processing 6/7 months.Currently I ordered to Puritan by master card of my one relative.I already ask Puritan about payment by western Union but yet not receive any reply.If payment by Western Union acceptable in any reliable site that will be helpful for me.
Have you any information pls help.
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I doubt that Puritan will accept Western Union,they do accept PayPal though.
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I doubt that Puritan will accept Western Union,they do accept PayPal though.
PayPal is not available in Bangladesh..Its really disappointing for me Zaini..What will I do ???
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Its not available in Pakistan either :(
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Hello everyone !!!
This month I had my son's ALT and serum Ferritin test done.
The ALT was 97 and Serum ferritn is 1650. ANDY I am giving my son milk thistle (it is a syrup called Proliver and it has got 125mg milk thislte in each 5 ml and I am giving him 10 ml daily ) from last 1 and a half month and I think it is working.
But I am really worried about the ferritin reports as the iron level is quite high. Its been almost 3 months I've splitted his dose and I am giving him 400 mg Asunra (his weight is 14kg) with food. Last time when we checked his ferritin level about two months before it was 1250 and that's a sudden rise. Why is it so? Is it bcz I am giving him Asunra with food????
I've also got IP-6 capsules 510mg from America PURITAN.COM. I want to know what will be his dose and how to give it to him? I've read in ur posts that it should be given on empty stomach and I also give asunra on empty stomach in the morning so how will i give him both? Can i give both at the same time?
I will be really thankful if you do a reply in detail.
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Zara,
Don't assume his iron load has risen based on ferritin tests. Ferritin is only for comparison because it is affected by other things like infection and inflammation, so you can never be sure that iron has risen when ferritin changes. See what his ferritin is at the next testing before changing any of his program. As he grows, his Asunra dose will need to rise, but his dose is fine right now. When the thal centers tested Exjade with food, the results were the same as without food (but actually better, because compliance increased). For a child, you may want to open the IP6 capsules and mix them with food or water, but don't mix with foods high in protein. If possible, it should be taken with liquid (not milk) on an empty stomach. At his weight, one capsule per day should be adequate.
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Thank you for ur detailed reply Andy
I am just thinking that can I give both asunra and ip6 at the same time?
Because I want to give both in the morning. You know ip6 has got the same chalky taste as of asunra. Can I mix ip6 with yogurt and also give asunra with yogurt or juice at the same time?
What do you suggest? I am really confused.
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ANDY I will be grateful if you do a reply and other people plz also share ur experiences.
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Zara,
Don't mix the IP6 with yogurt or take with any milk products. Juice is fine. IP6 reacts with protein, so it's best to avoid mixing it with anything high in protein. I don't see any problem taking it the same time as Exjade.
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Oh yesterday I gave him with pudding and today I gave him with yogurt. He was so irritable yesterday. But ANDY he doesn't like juice that's why I started giving him asunra with food. I know he will not drink the juice daily bcz the ip6 capsules taste worse than of asunra. They are more chalky. Plz explain in which foods I can mix ip6.
Anyone plz tell me ur experiences that how are you giving ur children ip6 and asunra.
I will be thankful
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Why is not anyone replying? It's been 3 days I am giving my son ip6 and he is not feeling well. I can feel he has some problem in his stomach.
Today after dinner he did 3 vomits in less than one hour and he cannot even drink water. I don't know what happened to him. He is so irritable in these last three days. Is it bcz of ip6? Maybe he is too small to tolerate 2 medicines at the same time.
People plz give me suggestions and tell me ur experiences. I am really worried.
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ANDY Please do reply
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Dear Zara,
My daughter is now 22 months old and after 11 transfusion her ferritin is 459 so still I am not starting any iron chealaton therapy...
So sorry to say I have no idea dear... :sadyup
May Allah help your baby to get recover from his problem :heartpink :heartpink
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Zara,
You should stop both Asunra and IP6 until the child is well again. Once his stomach is well, you can start Asunra at half a dose for a few days to see if his tummy can handle it.
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Thanks for ur replies ANDY and lokhi maa.
I have stopped both medicines but ANDY he is taking asunra for almost 6 months and he hadn't got any problem with that. I was asking about ip6 that can it cause stomach problems?
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Zara, you may be right and he's too young to start.
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Zara,
I began giving my son IP6 when he was 8 or 9 years old. He didn't have any stomach associated problems with it. If your child is not tolerating it well then you can stop it. As with anything you should start at a minimal dose with anything, including IP6. I would give him a break and at a later time reintroduce it in very small quantity and slowly over several weeks give your child the full dose.
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Thanks a lot for your replies.
Yes I have stopped giving him ip6 and I think I will not give it to him until he is 2 1/2 or 3 years old. He is just too small to tolerate both asunra and ip6. In foreign countries Dr's don't recommend giving asunra before a child is 2 years. But I gave my son asunra when he was just 16 months old. I am glad that he hadn't got any big problem with that except of high ALT and I hope it will also lower down IN SHA ALLAH.
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Zara,
GNC has its outlets in big cities of Pakistan ... i use to buy Milk Thistle from their outlets ... here is the list of their outlets in Pakistan ... Go To This site : http://www.gnc.com/storeLocatorIntl/index.jsp and select Pakistan in the list of countries ... and then you'll find this list of stores ..... its on official site of GNC ...
PAKISTAN
KOHINOOR ONE
JARANWALA ROAD
FAISALABAD, 00000
(041)850164
Get Map Get Directions
CENTAURUS SHOPPING MALL
F-8 JINNAH AVENUE
ISLAMABAD, 00000
( 0) 0- 0
Get Map Get Directions
JINNAH SUPER MARKET
F-7 MARKAZ
ISLAMABAD, 00000
( 0) 0- 0
Get Map Get Directions
ZAMZAMA KARACHI
8TH COMMERCIAL LANE
ZAMZAMA DHA PHASE V
KARACHI, 00000
213 5302 0012
Get Map Get Directions
SHAPES HEALTH STUDIO
GULBERG-III
LAHORE, 00000
042-5775140
Get Map Get Directions
M.M. ALAM ROAD
125 UPPER MALL
LAHORE, 00000
423 5785 3801
Get Map Get Directions
DHA LAHORE
212 Y PHASE 3 DHA COMMERC
LAHORE, 00000
042 3574 9556
Get Map Get Directions
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Thanks for ur reply umair.
I got milk thistle from a big medical shop in rawalpindi. But we haven't got natural vitamin E capsules till yet. I haven't been able to go to GNC.
I want to ask that can we get natural vitamin E which ANDY recommends in a syrup form????
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Zara,
at GNC natural Vit-E is also availble but in soft-gel capsule form ,, sorry i dont know about the availability of natural vit-E in syrup form in pakistan...
here are some search result for natural vitamin-E syrup,, if you can import it from outside of pakistan...
1) http://www.amazon.co.uk/Solgar-Natural-Liquid-Vitamin-59-2ml/dp/B000Z90FLU
2) http://www.nowfoods.com/Vitamin-E-Liquid-54600-IU-4oz.htm
3) http://www.iherb.com/Solgar-Natural-Liquid-Vitamin-E-4-fl-oz-118-ml/9742
4) http://www.vitaminshoppe.com/p/solgar-natural-vitamin-e-100-iu-2-fl-oz/sl-1240#.VcewDXGqqko
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Thanks alot umair.
I want to ask ANDY that can we cut the soft gel capsules and give it to our baby and what is the dose for 2 year old baby? Which ones are the best mixed tocopherol or other one?
And if we buy the liquid or oil form is it still same good bcz most ppl use the syrup or oil for using on the skin for beauty purposes? I am really confused about vitamin E but want to give it to my son as soon as possible.
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Zara, you can cut the E capsules and squeeze the liquid out of them. It has a slightly nutty taste (I have taken it this way). Mixed tocopherols are best, but the main thing is that it is d-alpha and not dl-alpha tocopherols.
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What will be the dose for a 2 year old baby? And what do you say about liquid vitamin E oil or syrup? We have to give that with drops.
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The dose should be 100 IU daily for a young child. If you can find quality vitamin E liquid, that is fine as well. Compare prices and use what makes sense.
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Hello everyone
My son is almost 2 and a half year now and he is taking asunra since last 9 months. Last month we noticed that he started blinking his eyes rapidly almost all the time. We took him to the eye specialist and he said that maybe it's happening bcz of asunra and his eyesight is just a little bit weak with a very minor no. We don't give glasses to normal children but you should use glasses for him. His haemotologist said that we should stop asunra for 2 weeks and see if there is a difference. We stopped it for a week and his eyes became better and he stopped blinking so we again started asunra. Now from last 3,4 days I can see that he is rapidly blinking his eyes again and especially at times when he watches TV or mobile. He blinks and rubs his eyes. Yesterday he was blinking so much like 2 blinks per sec. I have again stopped asunra and today his eyes were better. What do you say Andy Battaglia? Is asunra affecting on his eyes or something else?
What should we do now?
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Zara,
I've already replied to this on Facebook, but will post my reply here as well.
it does seem to be the asunra causing the problem. I don't know if there is a remedy other than to try a different chelator. It could be an allergy or perhaps a mineral deficiency caused by the asunra. I would suggest having his calcium level checked before changing chelators. [Added here.] You might also consider giving him a calcium and magnesium supplement to see if it helps. Magnesium is very important for the nervous system.
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http://www.news-medical.net/health/Excessive-Blinking.aspx
Dear Zara,
I am no expert but would like to share my experience as a parent. My older son who is thalassemia minor and never took any chelation had this problem when young. Doctors said it was just a nervous habit and he did outgrow it.
Please see the link above. There are many possible causes. I would suggest a really thorough eye exam.
Best Always,
Zahra
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Agree with Andy, it probably has nothing to do with exjade. It could be just a habit (i had it as a child). If eye exam is normal, then perhaps nothing to worry about.
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Dear all,
We noticed that last 2 months my baby blink rapidly and sometimes she smiles then I think its ok.But sometimes when she blink her face showed a bad expression.
Is it necessary to discuss with a eye specialist for the present problem..?
This month I have decided to start chelaton with Asunra.But if it cause blink then will her blink be increase?
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She may have just realized recently that she can blink like that and is just playing. Does she laugh if you blink back at her?
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You are right Andy.She play by blink and also feel happy when I back.But feel worried when sometimes I saw after blink her face shown no smile look like sadness/painful...
She may have just realized recently that she can blink like that and is just playing. Does she laugh if you blink back at her?
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Hello ANDY and all
I am posting after a quite long time. My son Abdullah will be 3 years in August Inshallah. We started his chelation therapy when he was only 18 months old by starting dose of 150 and increased it to 450 maximum. But almost 6 months back he got problem with his eyes (rapid blinking) so the Dr said it may be due to Asunra so we stopped it for almost 3 and a half months and his eyes got better. Last month we again started asunra with 350 dose and now I am giving him 400.
We checked his serum ferritin last month and it was around 1600. Our Haematologist suggests to start desferal every time we visit him. He says its been almost 1 and a half year that his iron level is more than 1000 and it gradually starts effecting and damaging the organs especially liver so we should start desferal so that his iron level drops below 1000.
The problem is that we are really afraid to start desferal. There are so many questions in our mind. How will our baby sleep at night with the pump and needle on for 10 hours on his tummy? He always sleeps on his tummy. I have also read on internet that the needle will cause bumps and swelling. Which is the best pump and needle to use? Is there anything specific which we need to know before starting desferal?
Please everybody share your experiences and ANDY I will be grateful if you reply in detail.
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Hello Andy
I will be thankful if you do reply to me and everybody else plz share your children's experiences.
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Zara,
I believe we discussed this on Facebook. If you need more info, let us know.
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My kid is 1 year 10 months old and he is not taking asunra at all. I tried to mix it with many different flavours but he simply dont want to drink it. Few days ago i decided to make the solution in water and then I add few spoons of baby milk powder which he takes normally.. Is it okay to feed him asunra by mixing few spoons of baby milk powder such as Morinaga BF-2.
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I don't agree with using a chelator at such a young age.
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thank you so much Andy for the reply.. due to high ferritin which is 1600 the doctor advised us to start asunra.. we are also planning BMT after 2 months..
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I don't agree with using a chelator at such a young age.
dear Andy however is it fine to add few spoons of baby milk powder in asunra solution.. he is now almost 2 years old..
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Asunra can be crushed and mixed into many soft foods. It does not have to be mixed in liquid but can be. If the child will take it by the method you describe, do it. If not, look for any soft food that the child will eat and mix the crushed tabs in that.
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thank you so much Andy for the reply.. I will continue adding few spoons of baby milk powder in Asunra solution and will it this way.. This week we have appointment with doctor to decide date for BMT for my 2 year old kid.. His 10 years old elder sister is a complete HLA match..