RP: Anyone familiar with Boston Childrens Hosptial? Please help — The Bump
Special Needs

RP: Anyone familiar with Boston Childrens Hosptial? Please help

-->

Hi. I am looking for a second opinon/look at my son. He has a rare bone condition and we are being seen at CHONY (NY), but need to find someone who has possibly seen this condition before or can help. NY is stumped. And I am sick over this.

Can anyone tell me about Boston? We would probably need an orthopedist/oncologist that specializes in rare conditions. I am so overwhelmed that I dont know where to look.

Thank you.
Julian David 8/7/06 and Isabella Mia 5/14/09

Re: RP: Anyone familiar with Boston Childrens Hosptial? Please help

  • image -auntie-:

    Boston's Children is an excellent hospital.

    When you are doctor shopping for an obscure condition, the doctor trumps the hospital. I have a friend whose niece had a genetic skin condition that eventually killed her. During her lifetime, she saw a dermatology expert at St. Christopher's in Philly. People constantly grilled her mom about not taking her to CHOP (The top rated pediatric hospital in the U.S.) but the fact was the best derm mattered more.

    If you're traveling, CHOP (Philly and PGH) are a good places to start along with Boston Childrens. There's a top notch hospital in Toronto and Greaat Ormond Street in London.

    Thanks, but how do I even begin to look for a Dr? We dont know what he has so it is hard to even search. 

    Julian David 8/7/06 and Isabella Mia 5/14/09
  • I tend to think that when you're not exactly sure what you're dealing with/looking for, places like Children's are the best bet, since they usually have excellent physicians in many of their departments (not necessarily the best, but often times very close to the best, if not THE best.) Most of DD#2's docs are based out of Children's, so we're very familiar with it. LOVE this hospital, how well they care for Sylvie, and from a logistics perspective, how easy it is to access add'l specialists once you're in their system.

    Unfortunately, I don't know how to go about begninning to figure out which type of doc/specialist you need to consult with... but I do think Children's would be a great starting point for you.

    Good luck- I hope you begin to find answers soon!

    A sister is a little bit of childhood that can never be lost. ~Marion C. Garrett
    image7_0002 A ~ 2.7.06 S ~ 9.2.07
  • Loading the player...
  • I can't answer your question about Boston children's but I was wondering what rare bone condition your child has?

    I have Multiple Hereditary Exostoses also called osteochondromatosis.  If you need a dr specializing in this I'm sure I could get a recommendation.

  • image am369:

    I can't answer your question about Boston children's but I was wondering what rare bone condition your child has?

    I have Multiple Hereditary Exostoses also called osteochondromatosis.  If you need a dr specializing in this I'm sure I could get a recommendation.

     

    Well, the easiest way to put it is he has cysts growing on his bone, the biopsy report ruled all major things out and gave him an informal diagnosis of hemangiomas of the bone. These "cysts" hemangiomas are destroying his bone and has made his left arm very weak. He has already fractured his humerous and broke his wrist. I never heard what you have? Do you work with a ortho?

     

    Thanks for all the replies.

    Julian David 8/7/06 and Isabella Mia 5/14/09
  • image debs10/18:
    image am369:

    I can't answer your question about Boston children's but I was wondering what rare bone condition your child has?

    I have Multiple Hereditary Exostoses also called osteochondromatosis.  If you need a dr specializing in this I'm sure I could get a recommendation.

     

    Well, the easiest way to put it is he has cysts growing on his bone, the biopsy report ruled all major things out and gave him an informal diagnosis of hemangiomas of the bone. These "cysts" hemangiomas are destroying his bone and has made his left arm very weak. He has already fractured his humerous and broke his wrist. I never heard what you have? Do you work with a ortho?

     

    Thanks for all the replies.

    are you sure they're actually hemangiomas?  My disease (MHE) is tumors that grow on the bones.  It's a rare disease about 1/60000.  I do not work with an ortho but it's a rare disease and a tight knit community.   for more information you can look up www.mheresearchfoundation.org

    i'm not sure where you're at but i saw dr carol morris at memorial sloan kettering in nyc, she is an orthopaedic oncologist.  she is an excellent dr.  you should try contacting their office.  if your insurance won't cover it, they'll let you bring x-rays and other results with you so you don't have to pay oop.  the initial consult with me was 525.00.  once she feels you're case is stable and safe she will reccomend a dr to follow up with that is in your insurance

  • We are traveling to Boston in August because they are the closest to us that knows about my youngest son's genetic condition.  I googled the condition and they were the ones that came up.  I called 4 other hospitals and no one knew about his condition. 
  • image am369:
    image debs10/18:
    image am369:

    I can't answer your question about Boston children's but I was wondering what rare bone condition your child has?

    I have Multiple Hereditary Exostoses also called osteochondromatosis.  If you need a dr specializing in this I'm sure I could get a recommendation.

     

    Well, the easiest way to put it is he has cysts growing on his bone, the biopsy report ruled all major things out and gave him an informal diagnosis of hemangiomas of the bone. These "cysts" hemangiomas are destroying his bone and has made his left arm very weak. He has already fractured his humerous and broke his wrist. I never heard what you have? Do you work with a ortho?

     

    Thanks for all the replies.

    are you sure they're actually hemangiomas?  My disease (MHE) is tumors that grow on the bones.  It's a rare disease about 1/60000.  I do not work with an ortho but it's a rare disease and a tight knit community.   for more information you can look up www.mheresearchfoundation.org

    i'm not sure where you're at but i saw dr carol morris at memorial sloan kettering in nyc, she is an orthopaedic oncologist.  she is an excellent dr.  you should try contacting their office.  if your insurance won't cover it, they'll let you bring x-rays and other results with you so you don't have to pay oop.  the initial consult with me was 525.00.  once she feels you're case is stable and safe she will reccomend a dr to follow up with that is in your insurance

     

    WOW! We arent positive about the hemangiomas. No one was really "confident" on what it is. This is so strange, but Dr. Morris is one of the names I got from my pedi. We are working with Dr's out of Columbia, who have never seen this before. One disease they keep throwing out is vanishing bone syndrome, but that was also ruled out today. I hope we are finally going to get some answers.

    Can I ask at what age you were diagnosed? Where are your tumors? There is so much I want to ask you. I cannot believe this....oh and I was prepared for an outside opinion, so I have rounded everything up I needed. Did Dr. Morris diagnose you? Thanks so much!

    Julian David 8/7/06 and Isabella Mia 5/14/09
  • image debs10/18:
    image am369:
    image debs10/18:
    image am369:

    I can't answer your question about Boston children's but I was wondering what rare bone condition your child has?

    I have Multiple Hereditary Exostoses also called osteochondromatosis.  If you need a dr specializing in this I'm sure I could get a recommendation.

     

    Well, the easiest way to put it is he has cysts growing on his bone, the biopsy report ruled all major things out and gave him an informal diagnosis of hemangiomas of the bone. These "cysts" hemangiomas are destroying his bone and has made his left arm very weak. He has already fractured his humerous and broke his wrist. I never heard what you have? Do you work with a ortho?

     

    Thanks for all the replies.

    are you sure they're actually hemangiomas?  My disease (MHE) is tumors that grow on the bones.  It's a rare disease about 1/60000.  I do not work with an ortho but it's a rare disease and a tight knit community.   for more information you can look up www.mheresearchfoundation.org

    i'm not sure where you're at but i saw dr carol morris at memorial sloan kettering in nyc, she is an orthopaedic oncologist.  she is an excellent dr.  you should try contacting their office.  if your insurance won't cover it, they'll let you bring x-rays and other results with you so you don't have to pay oop.  the initial consult with me was 525.00.  once she feels you're case is stable and safe she will reccomend a dr to follow up with that is in your insurance

     

    WOW! We arent positive about the hemangiomas. No one was really "confident" on what it is. This is so strange, but Dr. Morris is one of the names I got from my pedi. We are working with Dr's out of Columbia, who have never seen this before. One disease they keep throwing out is vanishing bone syndrome, but that was also ruled out today. I hope we are finally going to get some answers.

    Can I ask at what age you were diagnosed? Where are your tumors? There is so much I want to ask you. I cannot believe this....oh and I was prepared for an outside opinion, so I have rounded everything up I needed. Did Dr. Morris diagnose you? Thanks so much!

    I was actually diagnosed 3.5 years ago, I was 22.  I had a bone dr who had no idea what it was and just said it was normal.  I personally have a VERY mild case.  However, I'm a rarity.  I had a 5 cm tumor growing in towards my lung and when a thoracic surgeon excised it it came back as chondrosarcoma, a bone cancer. (Only 1% of the people with MHE have it turn to cancer).  I then headed to Dr. Morris who diagnosed me with MHE and she was very shocked I had no idea I even had it. Most people are diagnosed with it in early childhood, some even younger.  Most cases aren't even really visible until 1 year old unless it's severe.  I have tumors everywhere.  Most are at the ends of the long bones, and in the joints.  Knees and wrists are notorious for all these little tumors.  Mine are in my distal femurs, all over my ribs, pelvis, upper humerus, clavicle, ankles,

    Also, just because it's called multiple HEREDITARY exostoses only about 50% of the cases are inherited.  I'm a de novo mutation, noone in my family has it.  However, once you have the mutation you have a 50/50 chance of passing it on, it's autosomal dominant.  A detailed karyotype can tell if your LO has the disease definitively, there are 2 mutations, EXT1 and EXT2.

    There is also another doctor at UMDNJ, Dr Joe Benevenia, I personally did not care for his bedside manner and chose Dr. Morris over him, but I've heard wonderful things about him too.

    Feel free to ask anything you want :)

  • We have taken DD to Dr. Samantha Spencer (works at Children's Boston and she teaches at Harvard Med)

    She is an excellent doctor (orthopedist). I have no idea if she deal with rare conditions, though. Not sure if that helps you.

  • image am369:
    image debs10/18:
    image am369:
    image debs10/18:
    image am369:

    I can't answer your question about Boston children's but I was wondering what rare bone condition your child has?

    I have Multiple Hereditary Exostoses also called osteochondromatosis.  If you need a dr specializing in this I'm sure I could get a recommendation.

     

    Well, the easiest way to put it is he has cysts growing on his bone, the biopsy report ruled all major things out and gave him an informal diagnosis of hemangiomas of the bone. These "cysts" hemangiomas are destroying his bone and has made his left arm very weak. He has already fractured his humerous and broke his wrist. I never heard what you have? Do you work with a ortho?

     

    Thanks for all the replies.

    are you sure they're actually hemangiomas?  My disease (MHE) is tumors that grow on the bones.  It's a rare disease about 1/60000.  I do not work with an ortho but it's a rare disease and a tight knit community.   for more information you can look up www.mheresearchfoundation.org

    i'm not sure where you're at but i saw dr carol morris at memorial sloan kettering in nyc, she is an orthopaedic oncologist.  she is an excellent dr.  you should try contacting their office.  if your insurance won't cover it, they'll let you bring x-rays and other results with you so you don't have to pay oop.  the initial consult with me was 525.00.  once she feels you're case is stable and safe she will reccomend a dr to follow up with that is in your insurance

     

    WOW! We arent positive about the hemangiomas. No one was really "confident" on what it is. This is so strange, but Dr. Morris is one of the names I got from my pedi. We are working with Dr's out of Columbia, who have never seen this before. One disease they keep throwing out is vanishing bone syndrome, but that was also ruled out today. I hope we are finally going to get some answers.

    Can I ask at what age you were diagnosed? Where are your tumors? There is so much I want to ask you. I cannot believe this....oh and I was prepared for an outside opinion, so I have rounded everything up I needed. Did Dr. Morris diagnose you? Thanks so much!

    I was actually diagnosed 3.5 years ago, I was 22.  I had a bone dr who had no idea what it was and just said it was normal.  I personally have a VERY mild case.  However, I'm a rarity.  I had a 5 cm tumor growing in towards my lung and when a thoracic surgeon excised it it came back as chondrosarcoma, a bone cancer. (Only 1% of the people with MHE have it turn to cancer).  I then headed to Dr. Morris who diagnosed me with MHE and she was very shocked I had no idea I even had it. Most people are diagnosed with it in early childhood, some even younger.  Most cases aren't even really visible until 1 year old unless it's severe.  I have tumors everywhere.  Most are at the ends of the long bones, and in the joints.  Knees and wrists are notorious for all these little tumors.  Mine are in my distal femurs, all over my ribs, pelvis, upper humerus, clavicle, ankles,

    Also, just because it's called multiple HEREDITARY exostoses only about 50% of the cases are inherited.  I'm a de novo mutation, noone in my family has it.  However, once you have the mutation you have a 50/50 chance of passing it on, it's autosomal dominant.  A detailed karyotype can tell if your LO has the disease definitively, there are 2 mutations, EXT1 and EXT2.

    There is also another doctor at UMDNJ, Dr Joe Benevenia, I personally did not care for his bedside manner and chose Dr. Morris over him, but I've heard wonderful things about him too.

    Feel free to ask anything you want :)

    Thank you! My son has them in his left arm, humerous, forearm and wrists, those are the worst and are causing the most damage. He also has them in his pelvis, femur, lungs and skull. Those arent "doing anything", they are stable. The weird thing is, he has had genetic testing and it came back normal. I wonder if they specifically have to test for it? I see you just had a baby, will you have to have him tested as well? What is your follow up now? Any surgeries?

    Thanks again so much. 

    Julian David 8/7/06 and Isabella Mia 5/14/09
  • image debs10/18:
    image am369:
    image debs10/18:
    image am369:
    image debs10/18:
    image am369:

    I can't answer your question about Boston children's but I was wondering what rare bone condition your child has?

    I have Multiple Hereditary Exostoses also called osteochondromatosis.  If you need a dr specializing in this I'm sure I could get a recommendation.

     

    Well, the easiest way to put it is he has cysts growing on his bone, the biopsy report ruled all major things out and gave him an informal diagnosis of hemangiomas of the bone. These "cysts" hemangiomas are destroying his bone and has made his left arm very weak. He has already fractured his humerous and broke his wrist. I never heard what you have? Do you work with a ortho?

     

    Thanks for all the replies.

    are you sure they're actually hemangiomas?  My disease (MHE) is tumors that grow on the bones.  It's a rare disease about 1/60000.  I do not work with an ortho but it's a rare disease and a tight knit community.   for more information you can look up www.mheresearchfoundation.org

    i'm not sure where you're at but i saw dr carol morris at memorial sloan kettering in nyc, she is an orthopaedic oncologist.  she is an excellent dr.  you should try contacting their office.  if your insurance won't cover it, they'll let you bring x-rays and other results with you so you don't have to pay oop.  the initial consult with me was 525.00.  once she feels you're case is stable and safe she will reccomend a dr to follow up with that is in your insurance

     

    WOW! We arent positive about the hemangiomas. No one was really "confident" on what it is. This is so strange, but Dr. Morris is one of the names I got from my pedi. We are working with Dr's out of Columbia, who have never seen this before. One disease they keep throwing out is vanishing bone syndrome, but that was also ruled out today. I hope we are finally going to get some answers.

    Can I ask at what age you were diagnosed? Where are your tumors? There is so much I want to ask you. I cannot believe this....oh and I was prepared for an outside opinion, so I have rounded everything up I needed. Did Dr. Morris diagnose you? Thanks so much!

    I was actually diagnosed 3.5 years ago, I was 22.  I had a bone dr who had no idea what it was and just said it was normal.  I personally have a VERY mild case.  However, I'm a rarity.  I had a 5 cm tumor growing in towards my lung and when a thoracic surgeon excised it it came back as chondrosarcoma, a bone cancer. (Only 1% of the people with MHE have it turn to cancer).  I then headed to Dr. Morris who diagnosed me with MHE and she was very shocked I had no idea I even had it. Most people are diagnosed with it in early childhood, some even younger.  Most cases aren't even really visible until 1 year old unless it's severe.  I have tumors everywhere.  Most are at the ends of the long bones, and in the joints.  Knees and wrists are notorious for all these little tumors.  Mine are in my distal femurs, all over my ribs, pelvis, upper humerus, clavicle, ankles,

    Also, just because it's called multiple HEREDITARY exostoses only about 50% of the cases are inherited.  I'm a de novo mutation, noone in my family has it.  However, once you have the mutation you have a 50/50 chance of passing it on, it's autosomal dominant.  A detailed karyotype can tell if your LO has the disease definitively, there are 2 mutations, EXT1 and EXT2.

    There is also another doctor at UMDNJ, Dr Joe Benevenia, I personally did not care for his bedside manner and chose Dr. Morris over him, but I've heard wonderful things about him too.

    Feel free to ask anything you want :)

    Thank you! My son has them in his left arm, humerous, forearm and wrists, those are the worst and are causing the most damage. He also has them in his pelvis, femur, lungs and skull. Those arent "doing anything", they are stable. The weird thing is, he has had genetic testing and it came back normal. I wonder if they specifically have to test for it? I see you just had a baby, will you have to have him tested as well? What is your follow up now? Any surgeries?

    Thanks again so much. 

    A generic karyotype will NOT diagnose MHE.  It needs to be a detailed one in which they are specifically lookign for the mutation.  I will not be having DS tested because it's a visible disease, so if he develops tumors we'll know he has it. 

    MHE is unfortunately incurable, but it is treatable.  I should be having knee surgery sometime this fall.  Basically I get x-rays every year of my spine, pelvis and any tumors that are worrisome. This way they can track their growth.  The spine and pelvis are the most dangerous areas to develop these tumors.  However, they should only really grow while the skeleton is growing meaning once you hit puberty they mostly become inactive.  Your DS is at the prime age for diagnosis, but I obviously can't guarantee it's what he has.  If I were you I would give Dr Morris a try before you go driving up to Boston.  NYC has some great doctors.  She's a very nice woman, very east to talk to and very honest and to the point.  I lived in North Jersey when I saw her and at one point (to help me save money since i was paying oop) she let me have an MRI at my local in network hospital, I had to pay the $5 to have it sent to her office, and she called me back a few weeks later to let me know if I needed to come in or not. 

    I also know that Dr. Morris is very involved in the WORLD of orthopaedic oncology.  I currently live in Ohio just outside of Akron and my orthopaedic oncologist here knows her and Dr. Benevenia and sits on boards with them quite frequently.  So I'm sure if she didn't know what your DS has she would have resources to help you out and recommendations of who to go see.

    If you google image search "Exostose" you can see some x-ray images of what these tumors look like.

     

  • Thank you so much. I feel like even if this is not it, we are getting somewhere. I will be calling tomorrow. I hope everything goes well for you! Congratulations on your son! I will keep you posted.
    Julian David 8/7/06 and Isabella Mia 5/14/09
  • image debs10/18:
    Thank you so much. I feel like even if this is not it, we are getting somewhere. I will be calling tomorrow. I hope everything goes well for you! Congratulations on your son! I will keep you posted.

    You and your DS will be in my thoughts and prayers! 

This discussion has been closed.
Choose Another Board
Search Boards