April 1998 – First orthopaedic appointment for Caitlin – physiological bowing of left leg. Walking/weightbearing should resolve this.
31 March 1999 – Caitlin intoeing. Increased internal rotation of the hips of 70 degrees bilaterally, external rotation of 20 degrees. Moderate internal tibial torsion – part of her ankle (trans-malleolar access) is in neutral position, rather than 30 degrees externally rotated as would normally be seen. To be assessed in six months.
November 2001 – Caitlin diagnosed with perthes disease. Full restrictions in place ie: no running, jumping or anything else that might impact her hips. She is 5 years, 3 months old.
January 2002 – Saw the orthopaedic specialist and found out that Caitlin’s left hip has deteriorated. Flexion was measured at 120 degrees, but abduction was limited to 10 degrees with virtually no hip rotation. Femoral head is contained, so she is being admitted for traction to try to alleviate the irritability, with some physiotherapy and hydrotherapy. Also crutches to be used to minimise weight-bearing. Surgery to be considered, if femoral head shows any tendency to sublux.
13 February 2002 – 11 days in traction and Caitlin now using crutches. Abduction is 20 degrees, with rotation being about half of that on the right side.
June 2002 – Another session of traction, this one only lasting four days. Planned bone age x-rays in next few weeks.
July 2002 – Bone age is 6 years, which is compatible with her chronological age.
10 July 2002 – Abduction 15 degrees today and hip rotation was limited. X-rays show Perthes is progressing to consolidation phase.
20 August 2002 – Pain in right hip now with abduction decreased a little and some spasm around the hip joint. Suggesting petrie casts for six weeks to try to improve abduction and decrease the spasm. An arthrogram to be done at that time to assess the hip further. Right side is showing fragmentation but left is definitely in consolidation phase.
28 August 2002 – Caitlin now 6 years old, 1 week (exactly). Placed in petrie casts under general anaesthetic, with arthrogram done at the same time.
30th August 2002 – Ended up in A&E at 4am with Caitlin screaming with abductor spasms. Brufen given and prescribed for further use as needed.
9 October 2002 – Petrie casts removed and mobilisation to start with hydrotherapy and crutches.
20 November 2002 – Hips stiffer than previously noted. X-rays show both hips still in fragmentation phase. Planned bi-lateral pelvic osteotomies, so her name goes on the waiting list.
26 April 2003 – Caitlin slid down a ‘fireman’s pole’ in a playground, misjudged distance and cracked a bone in her right ankle. Cast to knee for six weeks.
May 2003 – Admitted to Tauranga Hospital 17th May, for Right Salter Innominate Osteotomy, following short period of traction on right side only. (Cast had to be removed from her ankle early to facilitate this). Surgery on 21st May with epidural pain relief and hip spica casting. Release from hospital 26th May (mum’s 40th birthday!).
June 2003 – Trip to A&E with Caitlin’s hip in spasm. Diazepam prescribed to reduce spasms.
July 2003 – Admitted to hospital for hip spica removal on 7th July and traction on left side only prior to another osteotomy. Released home on 12 July for weekend on strict conditions. Re-admitted 13 July for more traction with localised bruising near osteotomy scar. Examination showed that it was where the pin was sited and aggravating skin with movement. Surgery on left side 16 July, epidural and hip spica application again. X-ray of right side showed that bone graft had slipped and she had the equivalent of a Chiari Shelf Procedure, so left side had two pins in it, instead of the one pin used in the right side.
27 August 2003 – Caitlin now 7 years, 6 days old. Admitted for hip spica removal and pins to be removed from osteotomy site. Mobility to be increased gradually.
3 September 2003 – Caitlin to start increasing activities using crutches and start back at hydrotherapy.
5 September 2003 – Caitlin misplaced her crutches on ramp and sprained her ankle!!! X-rays showed loss of bone density due to minimal weight-bearing etc, so very lucky it was only a sprain and not a fracture!!!
26 November 2003 – Hip flexion is 120 degrees bilaterally with full extension and abduction of 20 degrees. Hip rotation remains limited to about 20 degrees internal and external. Osteotomies well healed and femoral heads well contained. Caitlin has started at RDA (Riding for the Disabled) and is to continue with this, hydrotherapy and physiotherapy.
8 December 2003 – Caitlin was accidentally knocked over by a friend. She landed heavily on her right knee. Another visit to A&E and an increase in pain relief needed to overcome the pain – no actual injury though luckily!
12 January 2004 – Partial release from restrictions given by physiotherapist. Caitlin is allowed on a trampoline, but no bouncing!! She is to run on the trampoline instead to try help with her gait, which is pretty bad.
14 January 2004 – Hip flexion is 140 degrees, external rotation 40 degrees, internal rotation 15 degrees bilaterally. Abduction 20 degrees on left and 25 degrees on right. Walking well with no pain and specialist has said to lift restrictions completely! I will use my discretion on that, as too much blood, sweat and tears invested in her hips.
August 2004 – 1 year post-surgery check-up reveals problems with containment of her left femoral head. Femoral osteotomy recommended but rejected. X-rays sent to Dr Dror Paley, Sinai Hospital, Baltimore, USA for an opinion with external fixation being recommended.
21 September 2004 – Transferred into another specialists care (he had just returned from training with Dr Paley at Sinai Hospital). Right hip is well contained, with no pain and flexion to 110 degrees, internal rotation 20 degrees and external rotation to 40 degrees. Left has deteriorated and extremely painful. 5 degrees fixed flexion deformity of the left side, 95 degrees flexion with discomfort. Abduction is 25 degrees and adduction to 10 degrees. All but 10% of lateral pillar of both femoral heads is lost. External fixation is planned – first one in New Zealand to have this for perthes, so very scary!!
14 October 2004 – Admitted to Tauranga Hospital (yet again), for an external fixator. Surgery done quickly and then we learned all about distracting the hip joint and pinsite care. Discharged 20 October for care at home with support from District Nurse.
16 November 2004 – Swab taken of pinsites due to infection. Septicaemia due to staph aureus present. Four days of IV antibiotics back in hospital soon sorted that out, although oral antibiotics had to be taken for remainder of time with fixator in place.
December 2004 – Formal complaint lodged with hospital due to poor management of pinsite care by District Nurse. District Nurse to deliver supplies to house, but not involved in pin care since hospitalisation and I will continue with pin care, as I know what I am doing.
5 January 2005 – 90 degree hip flexion with fixator in place, knee flexion to 70 degrees (planning on 90 degrees + in near future). Pin sites satisfactory.
16 February 2005 – Admission for removal of external fixator and application of splint/brace, to be worn 24 hours a day for six weeks, except for during hydrotherapy and showering.
30 March 2005 – Brace now to be worn at nights only. Hip flexion 60 degrees, no hip spasm and she is comfortable. Physiotherapy to start now and crutches to be used for mobility. X-rays show extra new bone formation on the superior margin of the acetabulum.
13 April 2005 – Hip flexion now 90 degrees and adduction is 35 degrees without hip spasm. Start weaning off crutches. Bony growth evident around where one of the pins was in her pelvis. This in effect gives her the equivalent of a shelf procedure – same result we got from a slipped bone graft on her left hip in 2003, so that should save us having to have those surgeries!!
July 2005 – Bone age x-rays was 8 years, 11 months, which is in keeping with her chronological age.
8 October 2005 – Flying out to Gold Coast, Australia today with Koru Care – staying until 16th October. Trips planned to theme parks etc. Physiotherapist nominated Caitlin to go on this trip by way of a reward for all she had been through and the hard work put in to regain mobility and strength.
September 2006 - ROM good, x-rays show femoral heads are going to be ovoid in shape, but as long as they are well-contained, she should get through to her 50's or 60's before she needs to hip replacement. Surgery to release tethering of scarring from fixator. Five of the six scars are more obvious due to them being indented and plan is to resolve this prior to puberty.
23 January 2007 – Scar revision of fixator scarring.
Caitlin has always been of average height and weight for her age. Except for the orthopaedic issues, she has been a very healthy girl who is currently 10 years, 7 months old.
Alex(ander) was born 1st September 1994. Long awaited first child who took his time arriving (15 days overdue and then an emergency C-section!). Speech development delay, but otherwise a robust and healthy boy.
21 April 1998 – Alex is 3 years, 7 months old and was seen in A&E due to pain behind his left knee. X-rays had shown changes to the femoral head consistent with Perthes disease.
12 August 1998 – No spasm in hip, although there is a minor limp evident. Crutches and pain medication to be used as needed.
9 December 1998 – Pain noted behind right knee. Full ROM without any spasm.
1999 – X-rays reviewed by Orthopaedic Specialist and radiologist and general consensus is that the changes seen are consistent with bi-lateral perthes disease.
13 February 2002 – Alex x-rayed as he has some intermittent pain behind his knee still. Hips show normal development and pain attributed to ‘night pain syndrome’.
3 April 2002 – Orthopaedic specialist and radiologist have determined that Alex never had Perthes after all. The changes seen are attributable to a variation of normal ossification which is sometimes seen and has been quite significant in Alex’s case. (see previous review in 1999, as this is completely contradictory and interestingly, it was the same people both times who came to these conclusions!)
20 August 2002 – Alex is now almost 8 years old and has had more episodes of knee pain on both sides and again it is attributed to ‘night pain syndrome’.
July 2006 – Alex is now 11 years, 10 months old and has had multiple issues with sore legs and ankles. Checked by specialist and very tight tendons noted, with physiotherapy recommended to stretch tendons. Physiotherapist has noted that despite tight tendons, muscles in lower limbs are not as strong as they should be, particularly down the outside of the thigh (a relatively common weakness is Perthes children).
Alex has always been on the higher side of height and weight for his age. Other than speech and learning development issues and his brush with Perthes (or whatever it was), he has been healthy throughout.