A story from Georgia, USA
I am a girl born in 1996. I am 5 feet 1 inch tall, 106 lbs. No other family members are effected by MED. I was diagnosed in 2006 - Children's healthcare of atlanta (Georgia, Usa), with x-ray by Tim Schrader, md - children's orthopaedics of Atlanta (Georgia, Usa). My mother began taking me child to doctor at age 9 months because I exhibited pain when attempting to cruise around tables and chairs when learning to walk. Many tests were done and many doctors seen over a 10 year period of time and no diagnosis ever came of it. One pediatrician eventually wrote in the medical record that the mother possibly had Munchhausen syndrome where the mother intentionally inflicts pain on the child in order to garner attention herself.
I had some surgeries:
2007 - tibia tether (8 plate guided growth) - Children's healthcare of Atlanta - Scottish Rite - Tim Schrader, md. - out patient surgery – needed because of Genu varum (bowing of leg outward) caused by MED * crutches for approximately 1 week – got around very well and did not need pain meds afterward. Worst part was sickness from the anesthesia in the car on the way home * physical therapy * results were excellent - would highly recommend (straightens leg with child's natural growth cycle) * surgery was on a Friday; was back in school on Monday
2009 - femur tether (8 plate guided growth) - Children's healthcare of Atlanta - Scottish Rite - Time Schrader, md. - out patient surgery – needed because of genu valgum (bowing of leg inward) caused by MED * crutches for approximately 1 week - got around very well and did not need pain meds afterward. Worst part was sickness from the anesthesia in the car on the way home * physical therapy * results were excellent - would highly recommend (straightens leg with child's natural growth cycle) * surgery was on a break from school
2012 - left total hip replacement - Piedmont hospital, Atlanta, Georgia - Steven Smith, md – needed because of deformity of femur head and acetabulum due to MED. Avascular necrosis of femur head. Extensive osteoarthritis of the joint. * because of the condition of the joint and the pain associated with it, the only treatment was THR. (narcotics – hydrocodone & oxycodone were used daily for 6 months until the surgery) *hospitalization for 4 days after surgery – PT began within 24 hours including walking – biggest problem was nausea (10 days), but it was controlled by prescription medication – muscles did not “wake up” for approximately 7 days and help was needed lifting the leg to get out of bed or move around to get comfortable – due to personal preferences, used 2 crutches from the beginning rather than a walker - could shower after 7 days with the wound covered with medical tape and self sticking plastic wrap – used long handled tools to help with washing and shaving – could shower with wound uncovered after 2 weeks – wound was glued and taped rather than stapled or stitched - had hip precautions (Do not bend your operated hip beyond a 90° angle, Do not turn your operated leg inward in a pigeon-toed position, Do not cross your operated leg) – a physical therapist and a nurse came into the home 3 days a week for the first two weeks and did resisent type exercises – used a raised toilet with arms for approximately 3 weeks – began PT outside of the home after 2 weeks (resistance and machines) and went down to one crutch – also discontinued all pain medicines after 2 week - began a full schedule by choice after 3 weeks – had 4 week check up with surgeon and he was very excited with progress – said walking without crutches was fine as long as religiously doing muscle building exercises – recheck with surgeon again after 3 months (still to come) – surgery was a great relief and would definitely do it the same way again.
Usually every 6 months I go to the pediatric orthopaedic doctor for a regular check up. If not having any problems for an extended period of time, this would not need to happen. Unfortunately there has been attention needed to one joint or another since diagnosis. Hot baths, heating pads, ice packs, creams and rest can go a long way for pain relief but when pain begins to get bad there is no reason to suffer when you don't have to. We got a baseline liver and kidney function test and if there are periods of time where a lot of medicines are needing to be taken, we can go have the blood tested for kidney and liver function. Test have always been in the good ranges. We also believe in taking as little medicine as is necessary but as i said believe that there is no reason to suffer either. The first prescription medicine prescribed was 'flurbiphrophen' - an NSAID similar to over the counter 'aleve'. When this stopped working, 'tylenol-3' was prescribed (codeine). Unfortunately this didn't work well so 'hydrocodone' was prescribed for moderate to severe pain). All are still available to take according to pain needs and but the least amount needed is taken. Sometimes that is every 4 hours. 'mobic' - a higher level NSAID has also been prescribed for daily arthritis pain but is only taken as needed. Nothing is taken if pain can be tolerated. I did gymnastics from age 2 until age 10 - stopped due to pain. I played soccer and baseball/softball for a couple of years - didn't like the running in either sport - caused too much pain. I loved to play volleyball but had to stop because of the pain. I has been a cheerleader for 4 years for a small christian school - doesn't participate in jumps but participates in all other aspects. Pain is very present but lI love the sport too much to quit at this time. After THR I can not be a 'flyer' any more. Team has won the state tournament 4 years in a row! I don't participate in any impact related gym class activities. I have always been very self-limiting (when the other children wanted to play 'horsey', I was the stable-master so I didn't have to run). I can walk without pain, but it depends on the day and also whether or not any specific joints are having a problem. Joint stiffness is worse when it is about to rain. Achey. I can climb stairs, a normal flight without pain - depending on the current condition of joints. As long as joints are not currently having a problem, swimming does not hurt before during or after. Regarding pain, hip just replaced so all weight bearing joints are at approximately a 3 in a range 0-10 of pain. Muscle pain from working out at the gym in thigh muscles is at approximately a 5. I do physioteraphy only if absolutely necessary after surgery. I have recessive form, I saw a geneticist but he said that until children are desired testing was not necessary or helpful in any treatments. So I never had testing done. I had THR and would recommend it if no other treatment is available - still recovering but was able to go off of all narcotic pain medicines that had been taken daily for 6 months approximately 1.5 weeks after surgery. I will be going back to cheerleading as soon as the season starts. I am completely back to life without the hip pain. I can't cross my legs due to THR restrictions. I have asthma. I am a follower of Jesus Christ and I believe that God has allowed me to have this particular disorder as an avenue to teach people about him; at the same time, His Word promises me that he will help me through each and every situation and day. I have found Him to be true. He has given me a lot of good doctors and medical help. He never leaves me or forsakes me and has surrounded me with people who care and want to help. My MED opens many more doors to talk to people than if i didn't have it. i i have been able to talk to large groups of people at a time because of my struggles. people see that i am bright and cheery despite my pain and know that it is because I get my strength from my Lord and Savior and know that I am not suffering in vain, there is a purpose. It has also given me a desire to help other people who have daily struggles in their life.
I had some surgeries:
2007 - tibia tether (8 plate guided growth) - Children's healthcare of Atlanta - Scottish Rite - Tim Schrader, md. - out patient surgery – needed because of Genu varum (bowing of leg outward) caused by MED * crutches for approximately 1 week – got around very well and did not need pain meds afterward. Worst part was sickness from the anesthesia in the car on the way home * physical therapy * results were excellent - would highly recommend (straightens leg with child's natural growth cycle) * surgery was on a Friday; was back in school on Monday
2009 - femur tether (8 plate guided growth) - Children's healthcare of Atlanta - Scottish Rite - Time Schrader, md. - out patient surgery – needed because of genu valgum (bowing of leg inward) caused by MED * crutches for approximately 1 week - got around very well and did not need pain meds afterward. Worst part was sickness from the anesthesia in the car on the way home * physical therapy * results were excellent - would highly recommend (straightens leg with child's natural growth cycle) * surgery was on a break from school
2012 - left total hip replacement - Piedmont hospital, Atlanta, Georgia - Steven Smith, md – needed because of deformity of femur head and acetabulum due to MED. Avascular necrosis of femur head. Extensive osteoarthritis of the joint. * because of the condition of the joint and the pain associated with it, the only treatment was THR. (narcotics – hydrocodone & oxycodone were used daily for 6 months until the surgery) *hospitalization for 4 days after surgery – PT began within 24 hours including walking – biggest problem was nausea (10 days), but it was controlled by prescription medication – muscles did not “wake up” for approximately 7 days and help was needed lifting the leg to get out of bed or move around to get comfortable – due to personal preferences, used 2 crutches from the beginning rather than a walker - could shower after 7 days with the wound covered with medical tape and self sticking plastic wrap – used long handled tools to help with washing and shaving – could shower with wound uncovered after 2 weeks – wound was glued and taped rather than stapled or stitched - had hip precautions (Do not bend your operated hip beyond a 90° angle, Do not turn your operated leg inward in a pigeon-toed position, Do not cross your operated leg) – a physical therapist and a nurse came into the home 3 days a week for the first two weeks and did resisent type exercises – used a raised toilet with arms for approximately 3 weeks – began PT outside of the home after 2 weeks (resistance and machines) and went down to one crutch – also discontinued all pain medicines after 2 week - began a full schedule by choice after 3 weeks – had 4 week check up with surgeon and he was very excited with progress – said walking without crutches was fine as long as religiously doing muscle building exercises – recheck with surgeon again after 3 months (still to come) – surgery was a great relief and would definitely do it the same way again.
Usually every 6 months I go to the pediatric orthopaedic doctor for a regular check up. If not having any problems for an extended period of time, this would not need to happen. Unfortunately there has been attention needed to one joint or another since diagnosis. Hot baths, heating pads, ice packs, creams and rest can go a long way for pain relief but when pain begins to get bad there is no reason to suffer when you don't have to. We got a baseline liver and kidney function test and if there are periods of time where a lot of medicines are needing to be taken, we can go have the blood tested for kidney and liver function. Test have always been in the good ranges. We also believe in taking as little medicine as is necessary but as i said believe that there is no reason to suffer either. The first prescription medicine prescribed was 'flurbiphrophen' - an NSAID similar to over the counter 'aleve'. When this stopped working, 'tylenol-3' was prescribed (codeine). Unfortunately this didn't work well so 'hydrocodone' was prescribed for moderate to severe pain). All are still available to take according to pain needs and but the least amount needed is taken. Sometimes that is every 4 hours. 'mobic' - a higher level NSAID has also been prescribed for daily arthritis pain but is only taken as needed. Nothing is taken if pain can be tolerated. I did gymnastics from age 2 until age 10 - stopped due to pain. I played soccer and baseball/softball for a couple of years - didn't like the running in either sport - caused too much pain. I loved to play volleyball but had to stop because of the pain. I has been a cheerleader for 4 years for a small christian school - doesn't participate in jumps but participates in all other aspects. Pain is very present but lI love the sport too much to quit at this time. After THR I can not be a 'flyer' any more. Team has won the state tournament 4 years in a row! I don't participate in any impact related gym class activities. I have always been very self-limiting (when the other children wanted to play 'horsey', I was the stable-master so I didn't have to run). I can walk without pain, but it depends on the day and also whether or not any specific joints are having a problem. Joint stiffness is worse when it is about to rain. Achey. I can climb stairs, a normal flight without pain - depending on the current condition of joints. As long as joints are not currently having a problem, swimming does not hurt before during or after. Regarding pain, hip just replaced so all weight bearing joints are at approximately a 3 in a range 0-10 of pain. Muscle pain from working out at the gym in thigh muscles is at approximately a 5. I do physioteraphy only if absolutely necessary after surgery. I have recessive form, I saw a geneticist but he said that until children are desired testing was not necessary or helpful in any treatments. So I never had testing done. I had THR and would recommend it if no other treatment is available - still recovering but was able to go off of all narcotic pain medicines that had been taken daily for 6 months approximately 1.5 weeks after surgery. I will be going back to cheerleading as soon as the season starts. I am completely back to life without the hip pain. I can't cross my legs due to THR restrictions. I have asthma. I am a follower of Jesus Christ and I believe that God has allowed me to have this particular disorder as an avenue to teach people about him; at the same time, His Word promises me that he will help me through each and every situation and day. I have found Him to be true. He has given me a lot of good doctors and medical help. He never leaves me or forsakes me and has surrounded me with people who care and want to help. My MED opens many more doors to talk to people than if i didn't have it. i i have been able to talk to large groups of people at a time because of my struggles. people see that i am bright and cheery despite my pain and know that it is because I get my strength from my Lord and Savior and know that I am not suffering in vain, there is a purpose. It has also given me a desire to help other people who have daily struggles in their life.