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rosech44
12-07-2007, 12:06 PM
HAS ANYONE HEARD OF------(bone disorder we have is called Multiple Hereditary Exostoses it's often referred to as Multiple Osteochondroma.) A FRIEND OF MINE AND HER 2 YOUNG SONS, HAVE THIS DISORDER, HERS IS NOT BAD, BUT THE BOYS ARE HAVEING A TERRIBLE TIME--PAINFUL BONE SPURS, BONES NOT GROWING LIKE THEY SHOULD, SURGERY AFER SURGERY---HAS ANYONE HEARD OF STEM CELL TREATMENT FOR SOMETHING LIKE THIS

BARBARA, COULD WE PUT THIS IN ASK THE DR. THREAD????

THANKS

barbara
12-07-2007, 05:29 PM
Rose - I will put it on the next Ask the Doctor forum. I wonder if this would be anything that the orthopedic clinic that is using stem cells in Colorado could help with? Sounds like a miserable painful disease for sure.

rosech44
12-08-2007, 12:34 AM
It Is Miserable, Both The Little Guys Are Haveing A Terrible Time, One Is Going For Surgery Again After Christmas, If It Doesn't Work, He May Never Walk Again--my Heart Is Breaking For This Little Mom, Who Is Also Caring For Her G'ma With Alzheimers.

Would Be Great If Colorado People Could Help Her

hlichten
12-08-2007, 11:46 AM
This page is the best description I have read so far of the ailment itself:
http://www.radix.net/~hogue/mhe.htm
It sounds like a horrible thing, basically generally benign tumors causing bones to grow abnormally. I did a few searches on it, and came up with nothing in terms of clinics claiming to treat this disorder. It plagues mainly children, full grown adults should be close to the end stage of the ailment. A few other things I read suggested that this ailment is caused by malformation of stem cells during the development of the embryo. Since it is a bone disorder, marrow is obviously involved. I have read of a clinical trial in British Colombia, Canada where they are testing blood from family members that have the disorder, but again, no trials involving stem cells to help with a possible cure.

I noticed that you are in Oregon. If this family is also there, have they sought out the best possible medical care? If these were my children, I would take them for a week to MD Anderson Cancer Center in Houston, Texas for a full workup. They are the best in the country, possibly the best in the world. I understand fully that this ailment is not a cancer, and usually not a malignancy, but if marrow transplants could help, then they could be done legally in the USA at a place like MD Anderson. St. Jude is another talked about hospital (founded by Danny Thomas) but I know nothing about it other than the TV commercials. They do say "no child turned away due to inability to pay" if money is an issue. MD Anderson also has full financial aid available.

Again, perhaps these children have good doctors, but do they have the best available ones? Even if they do, a second or third opinion could be beneficial.

Marrow has been used in cancer treatments for several decades, so these people may not need to pay huge money and leave the country to have treatment for this issue done.

The difference between a "stem cell treatment" and a "bone marrow transplant" is very subtle. With a bone marrow transplant, you are actually getting stem cells, it is just called a marrow transplant. Even a blood transfusion gives you some stem cells for that matter.

Even if they wanted to, it does not appear that anyone has done any stem cell treatments for it at this time outside of the USA.

barbara
12-08-2007, 12:19 PM
Thank you Harv for a very informative reply. I know we all appreciate your posts on this forum. I am hoping you are feeling well and that even if you have had no major recovery event yet, that it will be soon to come. I also know that you will keep us posted. I am giving you the Gold Star today for your continued forum support.

rosech44
12-08-2007, 07:21 PM
Thankyou So Much For This Info---I Think You Deserve A 24kt. Gold Star---

I Believe These Kids Are In Illinois, They Have Been Going To St. Judes, I Will Pass Your Info On To Their Mom, She Has Said It Is Hereditary---she Had A Mild Case Of It---unfortunately Both Her Boys Are Haveing A Terrible Time With It.

Again, I Am Grateful To You, My Friend.

hlichten
12-08-2007, 10:11 PM
Thankyou So Much For This Info---I Think You Deserve A 24kt. Gold Star---

I Believe These Kids Are In Illinois, They Have Been Going To St. Judes, I Will Pass Your Info On To Their Mom, She Has Said It Is Hereditary---she Had A Mild Case Of It---unfortunately Both Her Boys Are Haveing A Terrible Time With It.

Again, I Am Grateful To You, My Friend.

My pleasure.
Yes, it is hereditary, it is a gene or chromosome (not sure which) that is passed down, and it sounds really bad. If the children make it ok to young adult, then they likely will be pretty much done with it.

Anyhow, that is what I know based upon less than an hour's research into it.

The main thing that she should do is to not give up hope of finding the best possible treatment until she is fully satisfied that all avenues have been explored and exhausted.

I am very sorry for her suffering, and please feel free to PM me if there is anything else that I can help look up for her.

rosech44
12-10-2007, 11:00 AM
HI HARV----

I WAS WRONG, THEY ARE BEING TREATED BY THE SHRINERS--I GUESS, THERE IS SOME RESEARCH GOING ON BECAUSE SHE POSTED THAT--Shriner's hospital is now ready to donate the left over tumor's to the MHE Research, which means it will be going to Belgium or Italy.

NOT SURE WHAT SHE MEANS BY LEFTOVER TUMORS, BUT IT DOES SOUND PROMISING----

hlichten
12-10-2007, 04:43 PM
HI HARV----

I WAS WRONG, THEY ARE BEING TREATED BY THE SHRINERS--I GUESS, THERE IS SOME RESEARCH GOING ON BECAUSE SHE POSTED THAT--Shriner's hospital is now ready to donate the left over tumor's to the MHE Research, which means it will be going to Belgium or Italy.

NOT SURE WHAT SHE MEANS BY LEFTOVER TUMORS, BUT IT DOES SOUND PROMISING----

I assume she means the tissue that is extracted during the surgery, that is not desired to be left in the body, but not sure. That, or it may just be small amounts of tissue which is taken for biopsy purposes. Let me know when you get more details. Sounds hopeful.