Devastating News

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Re: Devastating News
« Reply #15 on: November 22, 2008, 10:03:22 PM »
Thank you Sharmin,

So right now she is taking caltrate plus (recommended by Andy) which includes:

Calcium 600mg
Vitamin D 400IU
Magnesium 50mg
Zinc 7.5mg
Copper 1mg
Manganese 1.8mg

Other than caltrate we give her Vitamin D supplement 800IU (derived from vitamin D3)

Three glass of milk and yogurt as part of diet calcium.

30 minutes of continuous physical activity (other than normal routine).

In your chart we are missing Vitamin K, Strontium, Silicon, Boron and vitamin B6, B12, Folic acid.

Any ideas how much they should be taken specially vitamin K, silicon, B6, B12 and Folic acid. Any supplement that you recommend would be helpful. At this time we are taking no exceptions.

Thanks,
Regards.

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Offline Sharmin

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Re: Devastating News
« Reply #16 on: November 22, 2008, 10:08:22 PM »
Canadian Family,

Let me research that for you, I will get back to you very soon.  I will post what I think is best and then we can have Andy review it to make sure it is correct - as he is a wealth of knowledge when it comes to supplements.  Andy usually suggests that we take vitamins as natural (without any preservatives) as possible.   My son is currently on Osteocare - as are Manal's children.  We order it online:

http://www.vitabiotics.com/osteocare/osteocare_liq_formula.aspx?ID=15&sm=3

I will get back to you very soon,

Sharmin
Sharmin

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Offline Andy Battaglia

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Re: Devastating News
« Reply #17 on: November 22, 2008, 10:28:08 PM »
Check http://www.vitabiotics.com/osteocare/osteocare_chew_formula.aspx?ID=103&sm=9     The chewable form includes the trace elements also.
Andy

All we are saying is give thals a chance.

Re: Devastating News
« Reply #18 on: November 23, 2008, 01:25:25 AM »
Thank you Andy and Sharmin.
Regards.

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Offline Manal

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Re: Devastating News
« Reply #19 on: November 23, 2008, 01:27:26 AM »
Canadian family, i am wondering if taking supplements only in your daughter stage is enough or not. I have no expierence in this but why shouldn't she take some of the Osteo medicnes in addition to the supplements to have a more positive effect as the supplements alone take some time for themto be in the normal levels in the body, i am afraid that until they are back to normal, the bone density will worsen.

I don't know if this makes sense or not, but please check with the doctor.
This is a link that has questions and answers about Osteo
http://www.helpde.com/osteoporosis/

http://www.helpde.com/osteoporosis/140-osteoporosis.html

http://www.nikken.com/product.cfm?ThemeID=6&GetProductGroup=Replenishment&GetProductID=183

http://www.rxlist.com/fosamax-drug.htm


manal

Re: Devastating News
« Reply #20 on: November 23, 2008, 01:37:36 AM »
Hi Manal,

Very good observation, she will be treated accordingly by the bone clinic with osteo medicines. Meanwhile taking these supplements will preserve the current bone density and may improve a little bit, as has been advised by the doctor. They said that bone clinic will always start with calcium and D supplements which we are taking now, and by the time we have our appointment she should have some positive to start with.

To your point, it is 12 month of intense therapy to show positive results (out of danger stage). We would expect to see some change in six months but visible results can only be determined after 12 months.

Regards.

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Offline Manal

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Re: Devastating News
« Reply #21 on: November 23, 2008, 02:04:41 AM »
Good luck Canadian family, i am happy that you are familiar with all the aspects of the current situation. We are all here for you

By the way i read (but don't know where exactly) that some common antibiotics binds with calacium and prevents its absorption during the administration of those antibiotics. It would be good if the doctor gives you a list of them to avoid using them in this stage

manal

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Offline Lyanne

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Re: Devastating News
« Reply #22 on: November 23, 2008, 06:05:13 AM »

    I'm so sorry to hear that your little angel have developed osteoporosis.... I would have imagined how painful that is for you, her parents........ I really hope for her speedy recovery.... Just stick to whatever treatment and she will be fine...... you will all be in my prayer..... My sister has also a weak bones and been advised to take Calcium, magnesium and vitamin D as well. :hugfriend
LYANNE :yahoo

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Offline Sharmin

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Re: Devastating News
« Reply #23 on: November 23, 2008, 06:42:05 AM »
Canadian Family,

I think that you should look into ordering the Osteocare - the various minerals will be very helpful for your daughter.  It is nice to see the trace minerals that are present.  Also, there aren't any preservatives - Caltrate is more likely to have preservatives.  I also think it is better because it has the 2:1 calcium:magnesium ratio.  While you wait for it to arrive you can keep giving her what you have now.  I received it very quickly after ordering it.  Manal - thanks again for giving me the information to get this supplement for my little ones.  I think that it is a supplement for my daughter as well.

I will keep looking for good sources of the other supplements.  Don't worry Canadian Family, our little princess is going to get through this and we will be here to support you until she does.  I think that the physical activity will make a big difference too. 

Sharmin
« Last Edit: November 23, 2008, 06:54:37 AM by sharmin »
Sharmin

Re: Devastating News
« Reply #24 on: November 23, 2008, 12:03:46 PM »
Hi Manal and Sharmin,

Currently she is not on antibiotics but that is a good advice.

I shall order the osteocare, just on question, how it taste like. I found the chewable formula better than liquid, what do you guys think.

The physical activity we are doing is at home, we have signed her for gym classes starting January 09.

She will continue to go to school and normal activities.

We have printed a chart of daily supplement, calcium intake and physical activities and tick marking everytime a goal is reached, so far we are 100%.

We shall fight for it until it is reversed.

Thanks all for your advice and help.

Will keep you updated.
« Last Edit: November 23, 2008, 12:23:41 PM by Canadian_Family »
Regards.

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Offline nice friend

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Re: Devastating News
« Reply #25 on: November 23, 2008, 12:24:47 PM »
 :goodluck :goodluck :goodluck
 :goodluck Hi CF ,  :goodluck
Wish you Good Luck ... :goodluck
 :goodluck :goodluck :goodluck

Best Regards
Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

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Offline Isis

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Re: Devastating News
« Reply #26 on: November 23, 2008, 12:31:15 PM »
Hello Canadian Family,

Sorry to hear about your daughter, but it is a very good thing that you found out about the osteoporosis when you did. Usually the younger thal children do not undergo DEXA , although there are fractures even with the younger thal children. Getting the DEXA  was really good thinking on your part.  The fractures in smaller thal children, doctors assume may be happening due to the hb being low and bone expansion, but of course it can be any number of reasons.

Although, what Manal said about taking osteo supplements is a good suggestion,  I would like to  specify that before starting any osteoporosis medicines that increase bone density, one has to check that the blood calcium level be normal. It is contraindicated to take osteo meds if one has hypocalcemia, and so  one has to  bring up the blood levels of calcium to normal before starting those osteo meds. Otherwise it will further leach calcium from the bones.

Secondly, nice friend  is  quite right that a great source of Vitamin D is sunshine. We hear about that all the time. In fact, that is why  even very small babies here, are massaged with mustard oil in the sunshine and made to sit in the morning sunshine for an hour.

I have heard that quicker form of osteo med treatment as biphosphonates go,  is pamidronate which is given IV. I do not know if it is used with smaller children.  Alendronate is a slower acting long term osteo med which is  taken orally but it can cause digestive problems. One has to sit up and not move much for at least 30 minutes when you take alendronate... again I do not know of its use with children,  esp. since it is difficult to make children sit in one place for even 30 minutes.

Other supplements for Vitamin D and osteo  are calcitriol and calcitonin, respectively. You can refer with your doctors as to what all would be suitable. Hope this helps.

It is possible to improve bone health, so please do not worry.

Regards.
 


Re: Devastating News
« Reply #27 on: November 23, 2008, 02:42:02 PM »
Thanks Isis,

As far as we know her serum calcium was always fine, but you are right that calcium levels should be normal before starting osteo medicines.

We found that serum calcium in the blood (checked regularly in thalassemia) is not indicative of actual calcium in the bones. It is just like serum ferritin which indicates the iron levels in the blood but is not indicative of how much iron is stored in the organs.

When the body does not get enough supplement of calcium from outside, it leaches the calcium from bones and maintains serum calcium. The effect is weaker bones.

Regards
Regards.

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Offline Sharmin

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Re: Devastating News
« Reply #28 on: November 23, 2008, 04:34:45 PM »
Canadian Family,

Did your daughter have x-rays done for bone age previously?  Did these x rays show anything or was it just the dexa?

My children are currently using the liquid osteocare, but I think Andy has mentioned that the chewable ones have other minerals that may be useful to your daughter as well.   The liquid form has a vanilla/banana flavor and the kids seem to like it.

Sharmin

Sharmin

Re: Devastating News
« Reply #29 on: November 23, 2008, 06:52:41 PM »
Hi Sharmin,

Yes she had x-rays done previuosly, but as far as I know x-rays do not show/calculate the bone mass density.

DEXA would calculate Z-score (mean of t-score) appropriate for age and compare to the mean of children at that age group.
Regards.

 

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