Devastating News

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Offline Andy Battaglia

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Re: Devastating News
« Reply #30 on: November 23, 2008, 07:58:26 PM »
I really think this is a matter of making dietary adjustments and adding supplements. I do not believe that there is any need for osteo drugs at this point. Getting kids to eat right is so difficult and with thals it can lead to tremendous problems, as we see here. However, these problems are correctable with some effort.

As a group, we often hear about the picky eaters that young kids are. So, as a group, let's explore this issue of what to do to get kids to eat properly. This case demonstrates so strongly why we have to find ways to get kids to get proper nutrition. Problems that will not manifest until adulthood will manifest in young children with thal. As a group, let's make an ongoing effort to share what works when it comes to getting kids to eat good foods and get proper nutrition. I strongly believe that all thals need some supplements such as folic acid, vitamin D and E, calcium and magnesium and others, but the foundation has to be a good diet.

Let's make a constant effort to inform others of how we get kids to eat a good diet. This can help parents so much and is something that can involve everyone. Simple suggestions can make a huge difference to a parent who is struggling to get a child to eat properly. Let's all help out!
Andy

All we are saying is give thals a chance.

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Offline Sharmin

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Re: Devastating News
« Reply #31 on: November 23, 2008, 08:09:49 PM »
Hey guys,

I have posted a few of my ideas in this post - I am looking forward to everyone else's ideas - I think this is something that we all need to do together. 

http://www.thalassemiapatientsandfriends.com/index.php?topic=2354.0

I am looking forward to hearing your ideas,

Sharmin
Sharmin

Re: Devastating News
« Reply #32 on: November 23, 2008, 08:32:54 PM »
I really think this is a matter of making dietary adjustments and adding supplements. I do not believe that there is any need for osteo drugs at this point.

I could not agree more. I am pinning my hope that in two months time with calcium supplements, diet and excersie she can improve a big deal.
Regards.

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Offline Dori

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Re: Devastating News
« Reply #33 on: November 24, 2008, 09:31:16 AM »
I am so sorry to hear this news!! I hope the problem is quickly solved. I hope your treatment plan will work. My fingers are crossed for your daughter! :hugfriend (Y)

Re: Devastating News
« Reply #34 on: November 24, 2008, 07:05:12 PM »
Thanks Peartree,
Regards.

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Offline Sharmin

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Re: Devastating News
« Reply #35 on: November 27, 2008, 07:43:42 PM »
Hi Canadian Family,

I hope that your little girl is doing well:) 

Sharmin
Sharmin

Re: Devastating News
« Reply #36 on: November 28, 2008, 02:08:22 AM »
Hi Sharmin,

She is doing fine so far and we are sticking to our guns, no exception to the program we have for her. The nurse at bone clinic left me a telephone message today that she has asked for further testing before appointment. I am having an appointment with the hematologist for referral on Monday.

At this point, I don't know what other testing is for, she just mentioned it would take a month for the results of those tests. I am emailing her to confirm the details of those tests.

Things are moving at slow pace, however, we hope she may be a little better when she goes for her appointment.

Her next appointment for transfusion is Dec 11.

BTW, I have ordered the Osteocare from UK, it took me three days to order as I was having trouble ordering it online, they took my order offline on telephone. Thanks for referral.
Regards.

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Offline Manal

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Re: Devastating News
« Reply #37 on: November 28, 2008, 02:15:45 AM »
Wish you all the luck Canadian family, may God help you in everything :hugfriend, please update us about these new tests and what are they for???

manal

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Offline Sharmin

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Re: Devastating News
« Reply #38 on: November 28, 2008, 04:40:28 AM »
Canadian Family,

I am so glad to hear that you are making progress.  It is a real challenge getting picky eaters to eat the right foods - you are doing a great job sticking to your plan.  It WILL change things for the better.  I hope soon enough that she passes all of these tests with flying colors.  Remember that we are all with you through everything. 

Sharmin
Sharmin

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Offline Poirot

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Re: Devastating News
« Reply #39 on: November 28, 2008, 12:23:04 PM »
CF,

I am sure that your daughter will get better rapidly - catching the problem before something serious happens is half the battle. This is not really as bad a news as you think it is currently.

Let me share my experience with you:

Just taking dietary products will not be sufficient, but of course the problem is exacerbated if your daughter does not take milk, etc. I was diagnosed with a Calcium deficiency despite talking at least one glass of milk a day, besides some other calcium-source products. Since then, I have been on regular calcium supplements, besides having been put on an intensive osteo treatment at that point of time. This was 6 years back, and my levels have been normal since treatment started.

So, I would echo Umair and Andy that calcium supplements along with Vit D should be taken daily, irrespective of the diet.

Poirot

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Kathy11

Re: Devastating News
« Reply #40 on: November 28, 2008, 10:03:15 PM »
To canadian-family. :flowers :flowers :flowers :flowers :flowers :flowers

I do care And I do pray that your little girl get better soon and in returned,  ease your worries.
I know how hard it can be to see your child sick and feel helpless.

Keep the faith and stay strong.
Kathy

Re: Devastating News
« Reply #41 on: November 29, 2008, 02:48:54 AM »
Kathy and Poirot,

Thanks for your kind words.
Regards.

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Offline jade

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Re: Devastating News
« Reply #42 on: November 29, 2008, 03:41:35 AM »
Hi Canadian Family

I hope that your little one gets better soon.  Since you have already taken the steps required she will only progress from now on.  Wish you good luck.

Take care
Jade

Re: Devastating News
« Reply #43 on: November 29, 2008, 10:26:09 PM »
Hi Manal,

You asked for the tests that were ordered, below is the list of them all.

Blood work
Calcium, Phosphate, PTH, alkaline phosphatase, 25(OH) Vitamin D, creatinine

Spot Urine
Calcium/creatinine ratio

The priority of her appointment will be established after getting the results of these tests.
Regards.

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Offline Manal

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Re: Devastating News
« Reply #44 on: November 30, 2008, 01:48:39 AM »
All the luck Canadian Family, we will be waiting for the results.

Will the doctors be able (from all the tests they are doing ) to point out the main reson of Osteo in your daughter case?? Whether it is inadequate intake of calcium from food, usage of desferal or hormonal imbalance,.... so you could in the future eliminate the cause or it is hard to know the direct reason??

What about the specialist for changing food habits, did you have any consultation??

manal

 

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