Thalassemia Patients and Friends
Discussion Forums => Thalassemia Intermedia => Topic started by: Tamizhan on November 07, 2013, 04:13:08 PM
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I'm also Thalassemia intermedia patient.
I'm suffering from severe leg pain problem. My bones are weak and brittle. i couldn't stand long time or take a 1 km walk. Do you know how to treat this problem?
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Much of this problem is caused by low Hb. Years of insufficient blood cause the bones to expand and become weaker. More frequent transfusions will help, but you also should be taking zinc, calcium, magnesium and vitamin D daily for bone strength.
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Are you taking Kelfer?
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Hi,
At what age do you think one should start zinc, ca, mg and vit D. I started giving these supplements (Zincovit and Shelcal) to my daughter when she was just 16 month old. She is 2 year old now.
I have read many posts here on osteoporosis , brittle bone, lowering bone density etc. I have a question - can these be a cause of concern for 2 year old thal as well. what other supplements apart from the one stated above should one give to a 2 year old thal major patient. Also what is the right dosage of the above supplements for a 2 yr old child.
regds
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Hi,
Even if zinc, magnesium and calcium levels are normal should supplements still be taken?
If a Bone Scan shows the bones to be thin, then is Vitamin D the only med to be taken or should some other meds be taken? For my younger son...his calcium reading is normal. He was put on Calcium Sandoz about 2 years ago but his Dr doesn't think he needs to take anything else.
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As per the OCH, thals should be supplemented with Vitamins and Minerals 100% of daily value.
Please get some good calcium tablet prescribed by ur doc in place of shelcal.
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Shelcal was prescribed by a doc who i consider good - dr revathi from apollo chennai. A 2 yr needs a syrup wd a sweet taste. She cant swallow tabs at this age.
Are you aware of any substitute of shelcal. Can osteoporosis start setting in at the age of 2. I am really worried as ì just noticed a limp in her walk. She isnt complaining of any pain though.
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Shelcal was prescribed by a doc who i consider good - dr revathi from apollo chennai. A 2 yr needs a syrup wd a sweet taste. She cant swallow tabs at this age.
Are you aware of any substitute of shelcal. Can osteoporosis start setting in at the age of 2. I am really worried as ì just noticed a limp in her walk. She isnt complaining of any pain though.
Don't worry. That shouldn't be the Osteoporosis. I know parents gets very concerned. :)
I am not aware of any Indian brand liquid. But yes Osteocare, perhaps one of the most famous and used medicine for calcium supplement in Europe and USA, does provides it in a sweet nice taste liquid form as well. I order my calcium stock (mine is chewable however, because the tablets were really horse pills and I almost had near death experience once it got stuck, lol, I even get shivers remembering that incident. However, those aren't coated well like shellcall, so part of the problem was that) from chemistdirect.co.uk . They also keep liquid form of Osteocare. Shipping from UK also isn't as costly as it'd be in the USA. And usually arrives like in 12-15 days or even earlier. It's really good form for children with the perfect ration of mag/calcium.
Maybe your daughter is just limping sometimes because she's growing. That's normal for many kids. Bones expands rapidly and a temporary effect can be seen as it takes while for adjusting.
Best,
-P.
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Shelcal was prescribed by a doc who i consider good - dr revathi from apollo chennai. A 2 yr needs a syrup wd a sweet taste. She cant swallow tabs at this age.
Are you aware of any substitute of shelcal. Can osteoporosis start setting in at the age of 2. I am really worried as ì just noticed a limp in her walk. She isnt complaining of any pain though.
Shelcal is very old medicine. I was taking shelcal when i was kid.
There is lot of research has been done. Ask ur doc about some other syrup having Calcium, Magnesium, Zinc and more Vitamin D
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Howz ur Back P?
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Emby,
Zinc, calcium and magnesium should still be taken, along with vitamin D. Thals need to supplement beyond what is found in food, and with the bone scans showing thin bones, there is no doubt.
Zinc is the most important mineral thals can take for bones. Years ago, it was considered mandatory that thals take zinc and that advice has only become more solid as research has shown that the two most important things thals can do for their bones is exercise and zinc. Minerals should be started at a young age, using either liquid or chewable supplements.
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Hi,
How much zinc for a 5 year old? Any recommended brand?
Zahra
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I'm also Thalassemia intermedia patient.
I'm suffering from severe leg pain problem. My bones are weak and brittle. i couldn't stand long time or take a 1 km walk. Do you know how to treat this problem?
Tamizhan,
you have to learn to live with this pain.
Taking the medicines_calcium, magnesium, zincs, vit d are important; bur equally important is learning to live with it.
I have the worst leg pain and back pain on earth. I have been on good medicines, but still pain has become a part of my everyday life.
So take the supplements....and learn to live with it.
Don't over exert, don't do things beyond your capacity, know where to stop, learn to say no.
Just lie down or sit down in between when you feel you need to do do.
Lots of love.
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Thank you Andy for replying. Will look for good ones to start them up on. :thumbsup
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Many use Osteocare. http://www.vitabiotics.com/osteocare/chewable_formula.aspx It provides trace minerals also.
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Hanumant,
I took Keller and desifrox with variant from 500mg to 1000mg for past 16 years. Hematologist already told me Keller have side effect on bone joints but it is mandatory for your growth.
Yesterday, I had a appointment with orthodox specialist. He confirmed that I'm suffering from polyorthiritis with vitamin d deficiency. He advised me to take 15mg vitamin d injection once in 10 days for 30 days, vitamin d powder once in a week for 4 weeks.
He told me this polyorthiritis is because of low hb and Keller.
He advised me to go for Hip bone joint replacement operation and knee joint replacement operation after sometime when pain is not bearable.
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Hi,
At what age do you think one should start zinc, ca, mg and vit D. I started giving these supplements (Zincovit and Shelcal) to my daughter when she was just 16 month old. She is 2 year old now.
I have read many posts here on osteoporosis , brittle bone, lowering bone density etc. I have a question - can these be a cause of concern for 2 year old thal as well. what other supplements apart from the one stated above should one give to a 2 year old thal major patient. Also what is the right dosage of the above supplements for a 2 yr old child.
regds
Hi Himanshu,
Better consult with ortho specialist now itself and keep in touch with them. Do regular examination on bone and joint of ur child. I don't want ur child to face leg pain like me.
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Many use Osteocare. http://www.vitabiotics.com/osteocare/chewable_formula.aspx It provides trace minerals also.
Thank you for reply, Andy.
For past 24 years I didn't took any mineral supplement. Even my Hemat doctor and ortho specialist didn't advised me to take any mineral supplement for bone growth/ bone pain. They always insist to have fresh vegetables. Whether this tablet have any side effect? Currently my kidneys are working good. Whether these tablet alter its function?
Hope I'm grown with good height of 162 cm.
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Tamizhan,
you have to learn to live with this pain.
Taking the medicines_calcium, magnesium, zincs, vit d are important; bur equally important is learning to live with it.
I have the worst leg pain and back pain on earth. I have been on good medicines, but still pain has become a part of my everyday life.
So take the supplements....and learn to live with it.
Don't over exert, don't do things beyond your capacity, know where to stop, learn to say no.
Just lie down or sit down in between when you feel you need to do do.
Lots of love.
Hi Rashmi,
I used to live with pain. But nowadays it's going worst. This pain only differentiate me from normal person and specially gifted thal person. Everyone in my office are questioning me about my dead slow walk or limping. I didnt tell anyone in office that I'm specially gifted thal person.I already learnt to say NO to team outings, resorts, trekking, shopping malls.
The thing is I didn't have any mineral supplement from my childhood for bone growth or joint pain.
Have you undergone any operation for joint pain?
By God grace I'm not experiencing back pain.
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Ordering from Vitabiotics will be costly. So I'd instead recommend www.chemistdirect.co.uk as that is where I order from and the shipping costs cuts down by quite a lot too as it comes from UK.
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What is ur Ferritin level and Blood requirement?
First, u need to correct ur D level with mega dosage of Vitamin D 50000 IU.
With this u need multi vitamin , multimineral supplemnts having Calcium, magnesium, Vitamin D, Zinc etc.
Zinc is also important for u because u r on kelfer.
Low hb is also a major cause of pain.
And, i know we thals are missing so much fun. We just learn easily to say No , but it's hard thing. I can understand :(
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My ferritin is around 521. I had my last blood transfusion on June 2009. Between my hb maintain around 8.
I had desifrox till last October. Hematologist advised me to stop desifrox as ferritin is 521. If it increase, once again I'll take desifrox. I'm having desifrox in a non continuous. Window for last 4 years.
Even though I didn't have blood transfusion, my ferritin is increasing in slow process. So whenever it increase I'm having desifrox.
I'm advised to take 3 dose of vitamin d 60000 iu 15 mg once in 10 days along with 4 dose of vitamin d 60000 granules 5 mg sachet once in a weak.
Neither ortho specialist nor hematologist advice me to take zinc, calcium, magnesium supplements.
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It doesn't make any difference if doctor do not prescribe supplements. Supplements can be have from Medical store without prescription.
I didn't get the 15mg vit d 60000iu, u means its injection? regarding granules it comes in a packing of 1gram and not as 5 mg. it is suggested weekly with milk till ur levels reached good level.
Regarding ur overall health , u should consider the advice given by Andy to u.
And yes have some wheat grass daily