Post by Donna Brown on Aug 22, 2007 16:40:51 GMT -5
Caitlin was born in 1996 and was diagnosed with bi-lateral Perthes in 2001, three months after she turned 5. Her first symptom was pain in her groin.
Having already been through her brother's Perthes, we had asked the specialist what the chances were that Caitlin would get it - we were told millions to one! She overcame those odds, to be one of the worst cases seen at our local hospital!!!!
When she was born she had a bowed left leg, so was under the same orthopaedic specialist as her brother right from the beginning. As predicted by him, when she started walking, this leg did straighten. To date, she is still slightly knock-kneed on that leg, but with the Perthes present, they can't do anything about this.
We started with the usual restrictions, crutches, pain meds as needed and rest up when sore. However, she was so stiff and sore that she needed to be hospitalised a couple of times for traction - anywhere from 2 to 11 days. I started her at hydrotherapy/swimming lessons at this point too.
Then in 2002 (on her 6th birthday!) we were told that she would need to be placed in petrie casts - ankle to thigh, with broomsticks between to maintain hip position - due to one of her hips starting to sublux (partially dislocate) the following week. She endured six weeks of this and all appeared well afterwards.
In 2003 we were told that she would need bi-lateral pelvic (Salter) osteotomies, due to both hips subluxing. I had researched external fixators online, but this was not a procedure available here in New Zealand at that point, so we had to go with the osteotomies. In May 2001 she had her right hip done after being in traction for a few days to loosen up the hips joint and was placed in a hip spica cast - from armpits to toes on operated leg, and above knee on the other leg - for 7 weeks. She was then re-admitted to hospital for traction on the left leg followed by the osteotomy on that hip (July 2001). Another six weeks of hip spica casting followed. I subsequently resigned from my job, as she was to be off school for up to six months.
We had a hospital teacher who visited us once a week throughout the six months and in approx September or October, we had a teacher aide through the school who was with her three mornings a week, either at school or if she wasn't well enough, she would come to our home to work with her. I also arranged a lady through district nursing to come around twice a week to sponge bath Caitlin for me and wash her hair once a week. This took quite a load off me and it also helped that it was someone other than mum doing these things, so she was more likely to co-operate.
When the hip spicas finally came off, we started in at physio to regain muscle strength and flexibility. It wasn't long before they had her walking on crutches again (she had been using them since diagnosis). The occupational therapist at the hospital had organised some temporary ramps for our house, to enable us to get her wheelchair in and out easier and one day Caitlin decided to walk down these, her crutch slipped and she sprained her ankle!! When they xrayed her, we found out that the prolonged time cast and non-weightbearing had affected her bone density and we were extremely lucky she hadn't fractured her ankle.
She continued with restrictions, crutches, pain meds and hydrotherapy. In October we got her enrolled in therapeutic horse riding at Riding for the Disabled and that really made quite a difference in the speed with which she recovered.
In 2004 we went in for her 1 year post-surgery checkup and were informed that she would need a femoral osteotomy on her left leg, as the pelvic osteotomy had failed to completely contain the femoral head! I flatly refused to even consider that surgery, as it would involve prolonged recovery again (which we were still doing), a massive scar down the outside of her thigh, reduced ROM (range of movement) and increased LLD (leg length discrepancy). She was unable at this point to weightbear in the mornings without paracetamol and brufen and her pain levels were pretty intense.
I promptly emailed her xrays to Dr Dror Paley at Sinai Hospital, Baltimore, USA for an opinion. He recommended an external fixator, I responded they weren't available here, to which he responded that one of our local surgeons was on his way back to Tauranga at that point having just learned how to use them!
Through the help of a group of online Perthes friends, we tracked the surgeon down and made contact with him very quickly. He went up to the hospital (even though he wasn't due to start working there for at least a few weeks) and went through Caitlin's file and xrays. We received a phone call fairly quickly telling us that he had booked the theatre time and we needed to meet with him to talk over the options.
When we met, we discussed thoroughly the femoral osteotomy, external fixator and doing nothing. We quickly discarded the femoral osteotomy for all the reasons I mentioned above and then the 'do nothing' was discarded, as that would mean continued pain and a THR (total hip replacement) at a very early age. He had certain criteria for using the external fixator and these were: previous surgery that hadn't worked properly, pain and restrictions that were affecting the quality of life - we qualified highly on all of these!
October 2004 she became the first child in New Zealand to have an external fixator for Perthes disease. It wasn't an easy decision and was made harder by the fact that other than our surgeon and his immediate team, we had no trained support. We had many issues over sourcing the right dressings etc through this, but were lucky to be part of a trial of Apinate Dressings from Comvita, which really made a difference in the pinsites healing.
Unfortunately, she had a bad dressing change in November from a visiting nurse that resulted in a pinsite infection, which then became septicaemia. She was hospitalised for 4 days on IV antibiotics and then had to take oral antibiotics for the rest of the time the fixator was in place.
She resumed horse riding through this time, with the knowledge of our surgeon. She also attended her swimming/hydrotherapy sessions - the chlorine in the pool helps with drying out the pinsites and keeping them clean.
February 2005 the fixator was removed and she wore a modified Scottish Rite brace for six weeks full time (except for showering and swimming) and then for the following six months at nights only.
We came under the care of a paediatric physiotherapist after this time who noticed that Caitlin had little or no hip extension. This was put down to the prolonged hip spica casting and the lack of consistency of care from other physios (we went through about six of them through that time, as they moved around and went on their OE's). We worked really hard, but even today, that is still an issue.
January 2007 Caitlin was re-admitted to hospital for the day to get her fixator scarring revised. 4-5 of the 6 scars were quite indented and more obvious because of it. Our surgeon did a very quick and simple procedure where he knicked something behind the scars that was tethering them to the underlying muscles. They all now lie flat on her skin and you have to actually look for them, to see them. They look more like a blemish on her skin now, than an obvious scar. He didn't touch her osteotomy scars, although one of them has some keloid, as they are both approximately 6" long and being across her hips, would be rubbed and affected by her clothing. We chose to leave these alone - she's earned them! These are her battle wounds, from a battle she has won and when she is an adult, she can have plastic surgery to disguise them better if she wishes, but we (her parents) decided that she had been through quite enough and all we wanted was the simplest, quickest procedure that would make the obvious scarring more socially acceptable before she started through puberty and all that *body issue* stuff that girls go through.
Its now 23rd August 2007. Caitlin turned 11 years old on the 21st and is due at the specialist this afternoon for her annual checkup and xrays. We had to move this appointment forward, as she has got quite stiff again. I am hoping that this is because she is (finally) in regrowth/reossification, but without the xrays, we won't know what is going on. She has requested that we get referred back for more physio, which shocked me, but as we stopped hydrotherapy at the end of last year and the only therapy she currently gets is horse riding, she knows this can help.
She has had regular bone age xrays done since her diagnosis and until recently her bone age was in line with her chronological age. The last one done, earlier this year showed that her bone age was slightly younger than her chronological age, which for a Perthes child is good news. This means that she has more time for her body to repair the damage done by both the surgeries and Perthes. She has also always been of average height and weight for her age.
Having already been through her brother's Perthes, we had asked the specialist what the chances were that Caitlin would get it - we were told millions to one! She overcame those odds, to be one of the worst cases seen at our local hospital!!!!
When she was born she had a bowed left leg, so was under the same orthopaedic specialist as her brother right from the beginning. As predicted by him, when she started walking, this leg did straighten. To date, she is still slightly knock-kneed on that leg, but with the Perthes present, they can't do anything about this.
We started with the usual restrictions, crutches, pain meds as needed and rest up when sore. However, she was so stiff and sore that she needed to be hospitalised a couple of times for traction - anywhere from 2 to 11 days. I started her at hydrotherapy/swimming lessons at this point too.
Then in 2002 (on her 6th birthday!) we were told that she would need to be placed in petrie casts - ankle to thigh, with broomsticks between to maintain hip position - due to one of her hips starting to sublux (partially dislocate) the following week. She endured six weeks of this and all appeared well afterwards.
In 2003 we were told that she would need bi-lateral pelvic (Salter) osteotomies, due to both hips subluxing. I had researched external fixators online, but this was not a procedure available here in New Zealand at that point, so we had to go with the osteotomies. In May 2001 she had her right hip done after being in traction for a few days to loosen up the hips joint and was placed in a hip spica cast - from armpits to toes on operated leg, and above knee on the other leg - for 7 weeks. She was then re-admitted to hospital for traction on the left leg followed by the osteotomy on that hip (July 2001). Another six weeks of hip spica casting followed. I subsequently resigned from my job, as she was to be off school for up to six months.
We had a hospital teacher who visited us once a week throughout the six months and in approx September or October, we had a teacher aide through the school who was with her three mornings a week, either at school or if she wasn't well enough, she would come to our home to work with her. I also arranged a lady through district nursing to come around twice a week to sponge bath Caitlin for me and wash her hair once a week. This took quite a load off me and it also helped that it was someone other than mum doing these things, so she was more likely to co-operate.
When the hip spicas finally came off, we started in at physio to regain muscle strength and flexibility. It wasn't long before they had her walking on crutches again (she had been using them since diagnosis). The occupational therapist at the hospital had organised some temporary ramps for our house, to enable us to get her wheelchair in and out easier and one day Caitlin decided to walk down these, her crutch slipped and she sprained her ankle!! When they xrayed her, we found out that the prolonged time cast and non-weightbearing had affected her bone density and we were extremely lucky she hadn't fractured her ankle.
She continued with restrictions, crutches, pain meds and hydrotherapy. In October we got her enrolled in therapeutic horse riding at Riding for the Disabled and that really made quite a difference in the speed with which she recovered.
In 2004 we went in for her 1 year post-surgery checkup and were informed that she would need a femoral osteotomy on her left leg, as the pelvic osteotomy had failed to completely contain the femoral head! I flatly refused to even consider that surgery, as it would involve prolonged recovery again (which we were still doing), a massive scar down the outside of her thigh, reduced ROM (range of movement) and increased LLD (leg length discrepancy). She was unable at this point to weightbear in the mornings without paracetamol and brufen and her pain levels were pretty intense.
I promptly emailed her xrays to Dr Dror Paley at Sinai Hospital, Baltimore, USA for an opinion. He recommended an external fixator, I responded they weren't available here, to which he responded that one of our local surgeons was on his way back to Tauranga at that point having just learned how to use them!
Through the help of a group of online Perthes friends, we tracked the surgeon down and made contact with him very quickly. He went up to the hospital (even though he wasn't due to start working there for at least a few weeks) and went through Caitlin's file and xrays. We received a phone call fairly quickly telling us that he had booked the theatre time and we needed to meet with him to talk over the options.
When we met, we discussed thoroughly the femoral osteotomy, external fixator and doing nothing. We quickly discarded the femoral osteotomy for all the reasons I mentioned above and then the 'do nothing' was discarded, as that would mean continued pain and a THR (total hip replacement) at a very early age. He had certain criteria for using the external fixator and these were: previous surgery that hadn't worked properly, pain and restrictions that were affecting the quality of life - we qualified highly on all of these!
October 2004 she became the first child in New Zealand to have an external fixator for Perthes disease. It wasn't an easy decision and was made harder by the fact that other than our surgeon and his immediate team, we had no trained support. We had many issues over sourcing the right dressings etc through this, but were lucky to be part of a trial of Apinate Dressings from Comvita, which really made a difference in the pinsites healing.
Unfortunately, she had a bad dressing change in November from a visiting nurse that resulted in a pinsite infection, which then became septicaemia. She was hospitalised for 4 days on IV antibiotics and then had to take oral antibiotics for the rest of the time the fixator was in place.
She resumed horse riding through this time, with the knowledge of our surgeon. She also attended her swimming/hydrotherapy sessions - the chlorine in the pool helps with drying out the pinsites and keeping them clean.
February 2005 the fixator was removed and she wore a modified Scottish Rite brace for six weeks full time (except for showering and swimming) and then for the following six months at nights only.
We came under the care of a paediatric physiotherapist after this time who noticed that Caitlin had little or no hip extension. This was put down to the prolonged hip spica casting and the lack of consistency of care from other physios (we went through about six of them through that time, as they moved around and went on their OE's). We worked really hard, but even today, that is still an issue.
January 2007 Caitlin was re-admitted to hospital for the day to get her fixator scarring revised. 4-5 of the 6 scars were quite indented and more obvious because of it. Our surgeon did a very quick and simple procedure where he knicked something behind the scars that was tethering them to the underlying muscles. They all now lie flat on her skin and you have to actually look for them, to see them. They look more like a blemish on her skin now, than an obvious scar. He didn't touch her osteotomy scars, although one of them has some keloid, as they are both approximately 6" long and being across her hips, would be rubbed and affected by her clothing. We chose to leave these alone - she's earned them! These are her battle wounds, from a battle she has won and when she is an adult, she can have plastic surgery to disguise them better if she wishes, but we (her parents) decided that she had been through quite enough and all we wanted was the simplest, quickest procedure that would make the obvious scarring more socially acceptable before she started through puberty and all that *body issue* stuff that girls go through.
Its now 23rd August 2007. Caitlin turned 11 years old on the 21st and is due at the specialist this afternoon for her annual checkup and xrays. We had to move this appointment forward, as she has got quite stiff again. I am hoping that this is because she is (finally) in regrowth/reossification, but without the xrays, we won't know what is going on. She has requested that we get referred back for more physio, which shocked me, but as we stopped hydrotherapy at the end of last year and the only therapy she currently gets is horse riding, she knows this can help.
She has had regular bone age xrays done since her diagnosis and until recently her bone age was in line with her chronological age. The last one done, earlier this year showed that her bone age was slightly younger than her chronological age, which for a Perthes child is good news. This means that she has more time for her body to repair the damage done by both the surgeries and Perthes. She has also always been of average height and weight for her age.