Devastating News

Dear Friends,

We had a devastated news from the doctor yesterday, my daughter has a severe osteoporosis, her Z-Score came very low, we are told if action not taken now then soon her bones will start breaking without effort.

I don't know what else to say, she is put on 1200 IU of vitamin D, calcium, and excersie program. The appointment with the osteoporosis clinic is not scheduled yet. They are busy clinic and may take upto couple of months.

Please pray for my child.

Canadian Family,

You daughter is in my prayers.  I hope that the supplements and excercise program help her recover, this must be a very difficult time for your family.  You have had a difficult time lately, I hope things begin to get better for you very soon. 

Has the Hospital for Sick children been monitoring your daughter?  Children should be monitored yearly for bone age and density, and early demineralization should be noted before it reaches this stage. 

I pray that the vitamin and exercise program begin to benefit your daughter while you wait.

Wishing your child all the best,

Sharmin

I am wondering what is happening to Canadian health care    In May 2006 were told that we were to have an appointment with a rheumatologist regarding my son's antibodies, and to wait for their call - it is now November 2008 and we have not heard from them!   In the meantime we have gone to Oakland, had him assessed and received treatment for the antibodies.

Canadian Family, I hope that it is an option for you to be seen in the US - your daughter can be on a good treatment plan before your appointment in Canada even comes up. 

Again, I wish you the best in getting her treatment. 

Sharmin

Hi Sharmin,

What has happened is very unique with my daughter, even the doctor at sick kids were stumped after seeing the results. She is recommended to the osteo clinic at sick kids.

I am trying to get appointment with Boston Children Hospital.

I am still trying to understand the root cause of what has happened. She had desferal for only 36 months, can desferal had such an enormous effect.

The bone density test starts at 5 year and is standard, they never realized it could happen before 5 year of age.

Canadian Family,

Desferal should not have had such an affect so quickly as people are on desferal for many years without such an affect. 
Was you daughter getting yearly bone age xrays?  If so, did the xrays reveal anything? 

I hope that you get your appointment very soon - either at sick kids or in Boston.  I also hope that our princess recovers from all of this very soon. 

I hope that she is doing well otherwise and eating properly.  Sending many prayers and good wishes to your family.

Sharmin

Desferal could be a contributing factor but the answer is more likely to be found to be a hormonal issue, assuming dietary mineral intake has been adequate.

The Comprehensive Care Centers are the best bet for situations that are outside the norm. This should not be left to doctors who are trying to guess what may be wrong. The child needs to be put on a program to correct and reverse what is happening now. She is very young and this is all reversible at this age as long as the source of the problem is correctly identified and addressed. The Comprehensive centers deal with so many thal patients that you will find they don't scratch their heads wondering how and why this happened. They will know the best way to manage her, so whatever it takes, a referral must come immediately.

Desferal could be a contributing factor but the answer is more likely to be found to be a hormonal issue, assuming dietary mineral intake has been adequate.

I agree with you Andy, she was not interested in milk or dairy products but we were giving her the caltrate with vitamin D.

I will discuss the harmonal issue with the doctor as well. I am getting some clues.

Thanks.

Canadian Family,

I am really sorry to hear that news,i can't even express the fear i am feeling in words,for every thal child,i am sorry,but rest be assured your daughter is in my prayers,it's amazing ho w sometimes everything looks like it's going down,but i am sure everything will e back on track very soon.What is unfathomable to me is that she must be taking her supplements ,then how the heck did it happen,what is the factor that can demineralize bones to that severe extent that a 5 year old would have osteo?
It's been a hard time for you lately,you and your family are in my prayers.

Zaini.

Hi C.F ,
How is your daughter now /?/,, here r something that i hope will b helpfull in her case ...

Umair
well when i was suffering to Osteoprosis and fracture in my shoulder an Orthopedic Doctor ( he is friend of my uncle ) told me to start Fosamax Tab but in the meantime i was suffering to the ulcer in stomach so he canceled to start this treatment and told me to start taking  [bgcolor=#ffff00]Forsteo inj .He said , it is expansive but it wok's like a miracle  .  Forsteo Realy work's like a miracle .. fracture healed in 6 weeks as could u imagine a thal whose calcium level too low having Diabaties even cant walk and healed to fracture in just 6 weeks[/bgcolor] ........     as normal person ......... its Miracle .... i  m witness ...

hey C.F  when 1st i read the reply of sajid abt fruits my my heart was burning i dont xplain that how much bad i felt on that moment bcoze its not the first time i have been miss guided several time even once  that kind of guidence sent me on wheel chair ,diabeties and osteoprosis,and fractured hand it takes 1 year to get back into normal life  can u believe it ...?? ahhh but now i have made my mind that  THIS IS THE REASON WHY THE JOB OF A DOCTOR CALLED " PRACTICE " .. ahhh how much my luck is in all of these matters ...    u cant imagine how much i suffered and then back in the life again .

1)  http://www.thalassemiapatientsandfriends.com/index.php?topic=1874.0;highlight=forsteo

2) http://www.thalassemiapatientsandfriends.com/index.php?topic=2278.0;highlight=osteoprosis

3)  http://www.thalassemiapatientsandfriends.com/index.php?topic=1648.0;highlight=osteoprosis

please check the links i mentioned above , i hope these will help you ... i will sugesst you to ask to her doctor abt the Forsteo injecion , that is realy miraclous ... please cehck these link to get complete pic .. i hope n pray that our little princess will GEt WElLL SOON and join her castle back to role her world ..... best wishes for her ..  lots of wishes and prayers for my Little Sis, May God shower His all bllessigs on her, and Bless her with good health and long Life full of life ...

Best Regards
Take Care
Umair

Dear Canadian Family

I know that no words can ease your pain rght now, but all of you are really in my prayers I too thought that Osteoprosis does not come to children so early but it is also great knowing from Andy that it could be reversable

I was just talking about Osteoprosos with one of my relatives (she is a doctor). She told me that sometimes patients have normal calcium but still get Osteo, she told me that this means that their bones are incapable of absoarbing the calcium and making use of it and they are given something called 1alpha that help their bones absorb the calcium and use it. I was starting to search about this 1 alpha and what is it and whwther it is vitamin D3 or something else.

One more thing i want to mention, is about the 11 years old girl who had gone through the retrodifferenation process. She had Osteo too and after the injection of her own stem cells, her bone density had increased tremendously

Canadian family, i hope that you are capable of visiting the Oakland center soon

Please update us

manal

PS: What signs made you go through the Osteo tests??

C.F.,

It is reassuring to hear that there is hope and that the situation can be reversible.  I can understand how you feel right now - but things can turn around and you have so many resources available to you.  It is a good thing that you did the test and you are now equipped with the knowledge to make things better. 

I have avoided using Caltrate because it contains calcium but not magnesium.  I hope that you are seen by the clinic soon and that hormone related issues are tested for - as Andy has pointed out - and as Manal has said - the problem may be related more to the ability to absorb calcium than the presence of calcium. 

Best of luck, we will continue trying to generate information for you and praying for you,

Sharmin

Hi C.F ,
in my point of view its bcoze of vitamin-D defficiancy , as Manal & Sharmin has said that Vit-D help's bones to absorp Calcium ....  there are 2 ways of getting Vitamin-D .

1) Having some sun light/sunshine , as sun light is a big  source of vit-D and its natural & safest one ...
2) supplements ...

i m on both as here in Pakistan sun shine's almost 12 months .. ad my doctor prescripted me vit-D + sunshine  ...
i dont know about climate detail of your  city but canada has a Cold cloudy climate, as far as i know ..
if your daughter were not on Vit-D supplement in past and there is less sunny days, then its mean it is the main reason of having Vit-D defficiancy & Vit-D Defficiancy is a big reason why calcium not absorbed in her bones ..

having enough calcium in body isn't all that you need , ou also need to get calium absorbed in your bones and thats where you need Vit-D enough in your body , otherwise calciumis nothing for your bones ,and can't work for your bones ...  soo keep an eye on her vit-D level as well ....
as for as you asked " is it reverseable , my answer is , as i shared my stor in wat a bad condition  i was .. but now i m back in life , playing cricket ,footbal walking running and doing everything i want ....  wat it mean's ??... it is 100% reverseable , dont worry She will get well soon .. alot of people keeping her remember in their prayers .. she wil b fine soon
A BIG GET WELL SOON MESSAGE FOR HER !!! Andy , please correct me if i m wrong  or mis-guided somewhere in my post ..

Best Regards
Take Care
Umair

Thanks everyone for their posts.

I did got wealth of knowledge from all of you. We have started a program for her. I did talk to Andy and Sumerfette and they both agree it is reversible. Her lack of interest in dairy products, irregular caltrate and not enough calcium absorption, desferal, all are contributing factors.

I think best treatment is the prevention. It should not happen at the first place. The hospital called yesterday and the nurse said, she should be very vigilant for the rest of her life, cannot miss her supplements, physical activity everyday and BMI every year.

One piece of advice from the doctor is that "skipping the rope" is the best exercise to prevent osteo. The bone mass increase dramatically if 20 minutes of rope skipping is initiated daily.

Will keep you updated.

Manal,

Nothing prompted us to check for Osteo, it was just a regular DEXA test at the age of five which detect the Osteo.

Thanks

Canadian Family,

I am really hopeful that sticking to that plan would help her,i wish her full and speedy recovery,what about school then,is she going to school right now? i think her teachers must know that she'll have to be very careful,so they'll keep an eye on her.

Praying for her 

Zaini.

Canadian Family,

Below is some information that I have found, a list of supplements essential in bone formation and repair:

Vitamin K: essential for bone formation, remodeling, and repair
Magnesium: activates alkaline phosphatase to form new bone
Zinc: essential for normal bone formation, enhances Vitamin D3
Strontium: a component of bone that may reduce bone resorption   
Boron: reduces urinary calcium excretion and linked to vitamin D3 and hormone function
Silicon: high concentrations are found at bone growth sites and it strengthens bone and
                     connective tissue strands           
Vitamins B6, B12, Folic Acid: help balance homocysteine levels
        (elevated levels can cause the formation of defective bone matrix and affect heart health)

You may wish to investigate this further and see if it is helpful for your daughter,

Sharmin