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.
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 " :grin .. 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 .
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.
Directions: Children, three years and over : Suck or chew one tablet daily. Adults : Suck or chew one tablet twice a day; Can be increased to four a day if desired. Store in a cool dry place, keep out of reach and sight of children.
The Recommended Dietary Allowance (RDA) for Zinc
Children 4-8 years 5 mg
Zeffix i believe is used for the treatment of Hep B,am i right Umair?You're absolutely right , my my doctor prescripted Zeffix to me for Hep-B , she was talkig at that moment " billirubin is a little high and it could be revverse with this medicine ," she said " Hep-B could be reverse with course of this medicine " it was 3 months's course and i glad to say that course is near to end ( only a few more doses remain's ) . i will let you know with my LFT and SF Test's Results very soon ( next wednesday ) .. i hope reports will come super fine ...
Zaini ,You're absolutely right , my my doctor prescripted Zeffix to me for Hep-B , she was talkig at that moment " billirubin is a little high and it could be revverse with this medicine ," she said " Hep-B could be reverse with course of this medicine " it was 3 months's course and i glad to say that course is near to end ( only a few more doses remain's ) . i will let you know with my LFT and SF Test's Results very soon ( next wednesday ) .. i hope reports will come super fine ...
Dore,
A lil more about zefffix :
Zeffix is Tm name of the medicine chemical agent name Lamuvidine and company name is Glaxo Smith Kline ( AKA GSK ) ...
Do you got hep B?
Billirubin causes the yellowish of the skin and the white of the eyes and nails. right?
A Dutch girl takes a medicine for Epilepsy to avoid looking so yellow. I will never take that. I do stand above* those sayings from people who believe that you look like a banana. * = how do you say that in English.
Epilepsy :
a disorder characterized by recurrent episodes of Paroxysmal Brain dysfunction Due to a sudden, disorderly, and excessive neuronal discharge . Epilepsy classsification system are generallly based upon :
1) Clinical Features of the seizure episodes ( e.g, motor seizure),
2) Etiology ( e.g, post-traumatic),
3) Anatomic site of seizure origin (e.g, frontal lobe seizure),
4) Tendency to spread to other structures in the brain, and
5) Temoporal patterns (e.g, nocturnal epilepsy).
(Quote From Adams et al., Prniciples of Neurology, 6th ed, p313 )
Do you got hep B ?.Yes , i have mentioned on forum about that i have Hep-B , on several threads , you may find my post related to hepatitis B and my LFT result And and hep C & B antigen related test reports ...
Billirubin causes the yellowish of the skin and the white of the eyes and nails. right?Yes , you are right , Billirubin caused the Yellowish skin and white Area of the eyes and nails.
Conclusion
Pediatric health problems are increasingly acknowledged as the genesis of adult osteoporosis. As more children survive childhood cancers and other chronic illnesses, the demand for accurate monitoring of long-term effects on bone health increases. While the single lateral distal femoral scan may not appear to document a chronology of bone health through years of growth as we had hoped, it is again shown to be a simple and reproducible tool with which to measure bone density in children. Increasing experience with this technique in children may yet confirm our hypothesis that the lateral distal femoral scan can demonstrate a chronology of bone health over time. This phenomenon may require a specific physiologic scenario that our clinical vignette did not adequately expose. Regardless, more widespread use of and familiarity with the lateral distal femoral scan will lead to expansion of existing databases, further refining the accuracy and increasing the acceptance of this technique.
Thank you Andy,
I will take some time to talk to them about this - I definitely don't want to take any chances. Oakland did tell me that my son is doing everything that they would advise a child showing signs of bone loss anyway - he is active and he is taking cal/mag/vitamin D and zinc. I am leaning toward canceling the DEXA scan for now.
As it is, iron load etc. threatens normal development and fertility in thals - I don't want to do anything else to that could affect him. I think I am better preventing bone problems.
I will ask the questions though - because it can be helpful to other patients.
Sharmin
Thanks Andy and Sharmin, i feel better now. And you are right Andy it is all about taking money because when i asked them why didn't they say they haven't got the age reference before i scanned him, i just received no answer
manal
I will ask the same question (Re. DEXA feasibility in young children and exposure to Gonads) to Hospital for Sick Children, Toronto, Bone Health Center at our appointment.
One more piece of advice for all those who are taking exjade. Please don't take high calcium diet three hours before and after taking exjade, studies have shown that will cause phosphourus deficiency in the body. If you remember my daughter immediately shown phosphorous deficiency when she started exjade last year, this was reported in other children. Hospital for Sick Children, Toronto did a study (on behalf of Norvatis, Canada) to confirm the findings.
Thank you Maha for letting me know. I didn't know the kid's age. However in my unit we have a little girl around 8 who is on ferriprox and exjade and her fe is somewhere near 200 and has not stopped chelation. Of course, she is not 5.
Lena.
Biphosphnate drugs have side effects on children if they are taken orally (like Fosamax). The 4th generation drugs that are given through IV has less side effects and even they can be managed.
The importance of vitamin D in sufficient quantities cannot be overlooked, as it is probably more important than calcium itself in building bone.
I also want to point out to everyone the importance of vitamin D in this process. Vitamin D is probably mislabeled as a vitamin. It is actually a hormone and acts as a receptor for dozens of essential nutrients. Without adequate vitamin D, it is impossible for these nutrients to be used by the body. Calcium is one of these nutrients and without enough vitamin D, calcium will not do much good. So, everyone should remember that calcium has to be taken in a context that includes vitamin D, magnesium and the essential trace minerals that are required to build bone. A product like Osteocare, takes care of most of the needs. However, added vitamin D is usually necessary. Recent research has shown that an astounding percentage of the human race has low vitamin D levels, and research with thal majors shows that almost all are deficient in vitamin D, which should not be any surprise, as we see this with most vitamins and minerals. The stresses of thalassemia result in a much higher need for most nutrients than what is normally seen in the non-thal population. The best source is direct sunlight. I read just this week that window glass filters out the UV B rays. UV B rays are responsible for producing vitamin D on the skin, so sunlight through a window has a greatly reduced value. It should be direct outdoors sunlight. Unfortunately, this is impossible in northern climates during a great part of the year, so supplementation (or a "safe" tanning bed) is necessary.
Btw like your daughter I was born premature but by 4 weeks. Never heard about this and low bone d.
I am sorry but due my bad health I can not remember the correct spelling of the words.
running, jumping, chasing and teasing the brother are recommended.
Thanks Andy and Zaini.
Going back to your post, what did we learn from this experience. Its about time that we listen to the doctors carefully but keep our eyes open to other factors they ignore. If we had prior knowledge of osteo, the reaction would not be so extreme. Andy is right, how a child who is regularly transfused and on a good diet can develop osteo unless there is underlying genetic problem.
I think the hematologist made her diagnosis based on one factor (i.e. BMD) and ignored all other factors (we need to keep an eye on these). We know thal have osteo problems but it is more of a problem at puberty age and can be corrected. The best way is to keep learning and this forum is the best way indeed.