I just found this site where mr. baniya is asking for his kids help.......lets contribute some fund here for his kids treatment as well guys.

visit.http://www.childhelp.lovelypokhara.com/

pls. just visit once to see why u need to help

well they can give pamidronate in nepal
calcitonin should be available as well
intra-medullary rods are only useful in new fractures- i doubt if old broken and healed bones would or should be re-broken and re-set but im not an othopaedician.
even if such a procecedure is done,what about physiotherapy/OT and rehab?Its going to take a long long time to heal-where will it be done and who will pay?
im not trying to be negative but playing the devils advocate here.
anyone else with a thought?

Most Probably the surgery they are talking about is the
Fassier-Duval Telescopic IM System which includes placement of nails (as orthopedic surgeons call it) to prevent future fracture in this particular case with minimal interception.

My Suggestion:

There must be hundreds of other in Nepal who suffer from similar conditions and gone untreated and suffering. So instead of spending 100,000 plus on one individual and if we can raise that kind of money, why not to buy the instrument and train an orthopedic surgeon in Nepal who can fix this. For the training purpose, I am sure the hospitals who have facilities to treat OI will be willing to train a doctor from Nepal.

I went through the procedure and it is not very different from IM nailing that Orthopedic Surgeons perform regularly in Nepal.

So the plan of action to provide service also for those who do NOT have access like Mr. Bania and benefit of many other suffers. Helping an individual is human and helping only one person is myopic too.

1. Find the price for the instruments.

2. Contact with Nepal Orthopedic Surgeons Association of possibility train a surgeon to fix with Fassier-Duval Telescopic IM System.

3. Correspondence with academic/medical settings where they will train a Nepali surgeon or even the device companies may have such training systems.

4. I am pretty sure if we can raise funds to buy instruments, we can find surgeon who will perform that kind of operations pro bono.

5. Service to more and more OI patients. (main purpose)

Locum

I agree with you.

The aspect of humanity is there but you have to weigh in the practical aspect too.

Locum

I think with 100,000 plus, we can have a new setting for OI's in Nepal.

urbi, rhythm, wheels, ladycroft and money minded,

I am willing to coordinate this and see if we can buy the instuments and train a nepali doctor.
How much are you guys willing to contribute personally?

mmm... shirish.. I din read all that you posted.. I mean that was too long... so long story short, could you please sort of summarize what your idea is.. and what advice are you giving...

sorry to be a pain... but tht was immesely long!:(

Rhythm

to make story short:

There are preventable treatments available for OI but no TREATMENT to cure OI.
I am pretty sure Bania's have been told by all the doctors they saw.

The surgery they are talking is most probably about the IM to prevent furture fractures. (Fassier-Duval Telescopic IM System)
Fassier-Duval Telescopic IM System is very much alike the regular IM that orthopedic surgeon perform probably on day to day basis. They may not have this specific instrument because of the rarity of the need to perform such operations.

My suggestion was instead of helping one individual, lets get the instruments and rest can be done in Nepal for more sufferers as every one is not as resourceful as Mr. Bania (I do understand the agony of Mr. Bania).

I dont mind to volunteer to coordinate as people like you are so eager to donate. With 100,000$ we can establish a center in Nepal (with existing orthopedic centers) that help patients like Bania's on long term basis especially with OI Type III who need prolonged orthopedic care.

I want to contact the DR. here who is willing to Rx Bania's and explain my proposal.

I also know my posting may fraustate Mr. Bania who is attempting to raise funds for his children but keeping in view of other's who do not have access to media or knowledgable relatives, getting the instruments needed and training a doctor would prove to be more cost effective and more service to more ailings.

OKi.. gotchha... but if we do arrange for all the instruments.. do you think there is a doc in Nepal who will be able to perform the surgery? I mean if there is no instruments there at present (I guess thats what you are implementing), will they be able to perform the surgery? Just wondering.

Rhythm

I think we should clearify first what kind of surgery he is going to have ?

Corrective for the disfigurement he has? or preventive.

I went through OI foundation and NIH website and the IM Rodding or simply putting a rod inside the long bones for future fracture is not any different than the regular IM.

check this

http://www.osteo.org/newfile.asp?doc=i103i&doctitle=Rodding+Surgery+in+Children+with+Osteogenesis+Imperfecta&doctype=HTML+Fact+Sheet

I am pretty sure Orthopedic Surgeons in Nepal can do this. But the question is why they have been denied that? May be poor prognosis and doctors did not want to be involved.

The (Fassier-Duval Telescopic IM System) is pretty new technique and minimally invasive.

Moneyminded

I thought you had GENUINE interest in helping out these kids and I am surprised with your silence.

I should have understood your nick at the first place. My mistake.

Posted on 06-03-05 8:08 AM Reply | Notify Admin
ell they can give pamidronate in nepal
calcitonin should be available as well
intra-medullary rods are only useful in new fractures- i doubt if old broken and healed bones would or should be re-broken and re-set but im not an othopaedician.
even if such a procecedure is done,what about physiotherapy/OT and rehab?Its going to take a long long time to heal-where will it be done and who will pay?
im not trying to be negative but playing the devils advocate here.
anyone else with a thought?


F-D rods are not only used in acute fractures. They are use to straighten bowing deformities to prevent fractures and allow ambulation. My daughter had F-D rods placed in her femurs at 19 months due to in utero bowing and walked independently 6 weeks later.

I like your idea of taking the rods to this family and the Pamidronate and therefore you can help more families within Nepal. You can go to http://pegamedical.com and get more info on the F-D rod which really is superior and Pegamedical may send someone to your orthopedist to instruct on it's use. OIF is not always the best source for new proactive information.

Thanks Doc

These Money minded and et al are not serious with the treatment.

I felt after their non response that Mr. Bania's main aim is to get his kids treated in US than possibly helping other kids with OI.

hmm...Shirish, where did you copy paste that from? and how are people supposed to understand all those technical terms? sorry for my out of context remarks, but how to collect 100,000$? Mr. baniya's kid will get that treatment probably much cheaper, and who wants to compromise his/her kid's life for the sake of humanity?? lets get a lil realistic here.

DC Girl

I understand what you are saying and I also understand what I posted. That was from the medline search.

My intention of posting that was to make you aware whats available as Rx of OI.

The base line: There is no treatment for OI.
However,
There are preventive treatements available with surgery to reduce the furture fractures.
There are corrective surgeries available.

How much will it help Mr. Bania's kids depends upon the severity of deformity.

I would like to rest my case on this because more we keep going more will be fraustation and will direct away from Mr. Bania's cause and I do not want to piss him off anymore.