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Author	Topic: hip problems
Rebecca Niebling Junior Member	posted 12-08-1999 06:37 AM My daughter, now 14 and a truly wonderful child, has had several hip surgeries to help correct problems from poorly developed hip sockets and hip dislocations occuring at age 3. She is scheduled to have more surgery in January, 2000. This will involve cutting her hip socket and creating a shelf over her femeur, which is slowly coming out of the socket. We have been told this is our only option as she will only get worse without surgery. Has anyone had this operation? I believe it is called The Ganz Procedure. Any input would be helpful. Thank you. [This message has been edited by Rebecca Niebling (edited 12-10-99).] IP: Logged
Arlene Member	posted 12-23-1999 02:16 PM My son Joey had surgery on his left hip at 11 years old. He did not have the same surgery you are referring to,but he had a new socket created by bone grafting,only after braces,bedrest,castings with bar between legs did not work. He has a bone disease called LEGGS PERTHES DISEASE.His doctor told me it is typical of Downs to have Hip Dysplasia and develope serious hip bone problems. Since the surgery Joey can walk again-which I had Drs. tell me would never happen-and he seems to finally be pain free. We still use a wheelchair for long distance,but that is only because he tires easily. GOOD LUCK with your decision. IP: Logged
kendraM Member	posted 01-03-2000 09:05 AM I don't have any advice, but my 11 year old son also has hip problems. He had a slipped capital femoral epiphysis (the growth plate slipped off the head of his femur), had surgery to repair that, and then developed avascular necrosis because the blood supply to the head of his femur was damaged. Now his femoral head is basically dead bone and is collapsing. He's been in a wheelchair since last February. Our surgeon has told us that there are no good surgical options because of the origin of the problem. We are just waiting to see if it might regenerate on its own. So far, it has not improved. I found it interesting, that in both previous postings, the kids are adolescents or pre-adolescents. You hear a lot about hip problems in infants, but not so much in older kids. Our surgeon told us that this is not an unusual age for problems to develop because kids are having such growth spurts that their joints, muscles, tendons, etc. are growing at differing rates. I'm really interested in hearing more about this from others. IP: Logged
Arlene Member	posted 01-03-2000 10:28 AM Kendra,the bone disease my son has sounds similar to what you described,the blood flow was not getting to the head of his femur which actually almost completely wore away.The Dr. told me that joey probably had this problem for a while,but due to a HIGH tolerance for pain I had no idea.They put him in traction at home and his bone did grow back!! The problem was now with his socket which was also affected by the disease.I also wondered about adolesence being some kind of factor when I observed the amount of adolecent children in his waiting room. My Dr. was an orthopedic for handicapped children only, interesting! IP: Logged
kelly Junior Member	posted 01-04-2000 02:32 PM My 5 year old has "clicking" hips.Many doctor visits led us to a Childrens Hospital where surgery was recommended.She has never had a dislocation only clicking and X-rays taken with her hip flexed to the extreme(knees were almost to her ears if you can imagine)showed a dislocation then! We wer told her hip sockets were shallow and would have damage to the joint and bones of her hip. One week before surgery(open reduction,osteotomy)C.T.showed normal hips with deep sockets and no necrosis or dysplasia. I cancelled the procedure on this and the medical research I found on the sucess rate,complications,need for REPEATED PROCEDURES and accounts of cases where nothing was done and the results were fine,no long term a fects.The rearch also points to ligament laxity as the major cause yet my dr. was doing nothing to them.Does anyone know of a ortho specalist who has extemsive experience with ds? I will do any thing to help my katie,but have learned thur various illnesses and leukemia(AML at 8 months) the only person who has your childs best interest is you and ds is a subspeciality in any field. IP: Logged
Arlene Member	posted 01-05-2000 01:57 PM I Emailed my question about hip disorders in DS children to the Doctor on ds.health.com and his reply to me was 6 to 8% of DS children have some sort of hip disorder,this is most likely due to Laxity of the Ligaments of the hip joint. I don't know if this helps anyone but I found it interesting because I never heard any statistics before. IP: Logged
Joan Junior Member	posted 03-05-2000 02:35 PM quote: Originally posted by Arlene: I Emailed my question about hip disorders in DS children to the Doctor on ds.health.com and his reply to me was 6 to 8% of DS children have some sort of hip disorder,this is most likely due to Laxity of the Ligaments of the hip joint. I don't know if this helps anyone but I found it interesting because I never heard any statistics before. A friend of mine has compiled all sorts of information on this topic that you can access at: http://www.ashleysmom.com scroll down to hip dysplasia and down syndrome. Joan IP: Logged
marybeth Member	posted 03-06-2000 06:51 AM I have taken my daughter to a Dr at Luthern General, a ortho Dr who specializes in Ped. he hardly ever recommends hip surg. only theraphy. That was 2 years ago because her hips were clicking and she was falling down a lot.through private physical therapy one hour once a week and therapy at school once a week she has gotten much stronger and runs better and rides her bike she is 7. I have strong belief in ongoing therapies(PT and OT and speech) for DS children My daughter takes all 3 and has becaome much stronger from them. IP: Logged
Marsha Scheitlin Junior Member	posted 09-26-2001 08:56 AM Kelly, My son Phillip, 3 1/2 years old, has DDH-R Hip and is scheduled for surgery (casting) October 29th. I would love to avoid this, but we just take care of the dislocation of the hip. The hip appears normal, but shallower than the L. side. We are currently going to a cranial osteopathic doctor, but the situation hasn't improved. We are trying aquatic therapy, but Phillip is not cooperating. I am interested in what your research indicated. I've been on the internet, but it's hard to find answers other than surgery. Marsha quote: Originally posted by kelly: My 5 year old has "clicking" hips.Many doctor visits led us to a Childrens Hospital where surgery was recommended.She has never had a dislocation only clicking and X-rays taken with her hip flexed to the extreme(knees were almost to her ears if you can imagine)showed a dislocation then! We wer told her hip sockets were shallow and would have damage to the joint and bones of her hip. One week before surgery(open reduction,osteotomy)C.T.showed normal hips with deep sockets and no necrosis or dysplasia. I cancelled the procedure on this and the medical research I found on the sucess rate,complications,need for REPEATED PROCEDURES and accounts of cases where nothing was done and the results were fine,no long term a fects.The rearch also points to ligament laxity as the major cause yet my dr. was doing nothing to them.Does anyone know of a ortho specalist who has extemsive experience with ds? I will do any thing to help my katie,but have learned thur various illnesses and leukemia(AML at 8 months) the only person who has your childs best interest is you and ds is a subspeciality in any field. IP: Logged

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