Tuesday, November 15, 2016

Again, a huge gap in time, but Caitlin is now 20 years old and studying at university.

Over the past 12+ months, her pain levels have been increasing and a year ago, she had xrays and an MRI to see what was going on.  It was suggested at that stage that she have arthroscopic surgery to clean up the labral tear that was found, along with cysts in the joint.  Because her usual specialist was away, she was reluctant to proceed,  so deferred surgery until she had discussed it with him.

She returned home in July to see her specialist and he supported her decision and also that of the other specialist, actually recommending she stick with this other one, because his specialty is arthroscopic procedures on the hips.

The other day she had the appointment needed to look at what surgery would go ahead and was sent for more xrays, due to the time lapsed.  On reviewing the xrays, they look reasonably good as usual with reasonable joint spacing and no collapse of the femoral head thankfully.  However, her pain indicates secondary arthritis and the specialist felt that there was nothing that could be gained from surgery, so recommended steroid injections into the hip to see if she could have some relief from the pain.  She did not want to proceed with this, until he explained thoroughly what was involved and how it worked and was about to agree to it, until she casually mentioned her lack of hip extension and all the problems that caused her.

The whole appointment came to a halt as he checked the xrays and MRI, checked her ROM and stood there contemplating this new piece of information.  The end result is that arthroscopic surgery is now happening.  He is going to debride the joint and also do a tenotomy on the psoas and one other tendon (sorry, can't remember which one) to see if that gives her some relief from the pain and maybe, a bit more hip extension.

Her surgery is going to happen sometime between January 15th and the end of January, as she needs to return to university after that for her new year and also, she has to get her tonsils out too, so needs time to get that done before uni starts back up!

Really pleased this surgery is as minimally invasive as it is and could potentially make a world of difference for her - no guarantees as usual, but worth trying <3 font="">

Friday, February 21, 2014

And again another large amount of time has passed since I updated.  This is mainly because she is in a holding pattern now - not really better or worse as time goes on.

Last check-up was around July 2013 and we spent a considerable amount of time with the registrar discussing the most recent xrays in comparison to earlier ones. She has good joint spacing, which means the cartilage is still there, although we already know from previous appointments, that its not in the best shape due to the pounding from the mis-shapen femoral heads and the femoral heads are still both contained (Shenton's Line is intact), although they are both coxa magna (over large) and ovoid in shape ('cows hips' apparently - you can just imagine how impressed she is with that term!).  Femoral necks are shortened and widened, which is typical perthes.

One thing that came out of the appointment was an answer to why, when she lies on her side on a hard surface, her hips hurt a lot.  This is because the greater trochanter has advanced and is now sitting where it comes into contact with the hard surfaces, as there isn't really a layer of muscle and/or fat between that and her skin, as she is slim build.

The specialist came and joined us in the examination room near the end of the appointment and is happy that she is doing as well as she is, although she will always have problems.  Its now a case of her keeping fit and healthy and keeping her weight down, to lessen the impact through her hips.

She takes panadeine regularly for the pain (Tylenol with codeine), which only really takes the edge off the pain, but at least it gets her functioning.  The specialist will see her again around July 2014 and again, it will just be checking that she is still within the holding pattern, as there is not a lot more they can do, as there are no other surgeries that can offer a guarantee of success and so the specialist is reluctant to risk making things worse for her, as in spite of the pain and restrictions that are still in place, she is embracing life with a vengeance!

She is in her final year at school this year and is planning to go to university next year to study bio-med, with a view to going to med school to eventually be a pathologist, however this is subject to change, although will still be science based, as that is her passion.

Last year she passed her NCEA Level 2 exams with a merit endorsement overall, and also merit endorsements on both biology and statistics.  Her English paper has gone back to be moderated, as her class teacher feels there was an error in the marking, but we will just have to wait and see how that goes.

She isn't doing waka ama at the moment, although the girls in her team have asked her to come back as their steerer, as she was so good at it.  She is taking her time in deciding this, as she has some very important exams to focus on too, however the increase in fitness that this sport offers is well worth the time put into it.  She also does Pilates to help with her core muscle strength, on the recommendation of her specialist.

Thursday, March 24, 2011

Well, its been way too long since I did an update here!

Caitlin is currently 14 1/2 years old, just over 5 foot 4 inches tall and growing up fast!

She stopped therapeutic swimming about 18 months ago, as she had learned all that they could teach her with regard to strokes and style and she wasn't advancing any more with her ROM. We also felt that she was starting to do more and more 'normal' activities and that they would eventually take the place of any need for therapy.

Not long after this she also stopped attending therapeutic horse riding (hippotherapy), although she still rides there once a fortnight, although now its in their dressage lessons instead, as the mental stimulation of learning this is far better for her. She is still getting the same advantages she got from the therapy riding too, so its definitely a win-win situation for her. I pull her out of school once a fortnight (during a PE lesson), to attend these classes, as they offer specific exercises that she needs and no PE programme could ever hope to offer the same benefits she gets from this - the increased self-confidence that she gets too, is a real bonus!

She was thrown from a horse around 6 months ago at a full gallop, landing on the road and rolling onto the grass verge. She was lucky to get away with some grazes and a few bruises, and the instructors got her back up on the horse about 20 minutes later which was great. Unfortunately, its had the long term effect of denting her confidence and she freezes everytime she gets put on that horse again. She has changed to another horse for the interim, although the plan is to get her back on the horse she is scared of and teach her that these things do happen and that she can survive them. That day I had stepped aside and let my husband go with her, so I knew nothing of the fall or anything else until about an hour later when they got home. She was so lucky though, as if she had landed badly, she could potentially have undone all the surgery done.

Just before that fall, we were noticing a pattern of increased pain levels, which leading up to November were getting more frequent and really bad, so we bought her annual check-up forward to find that her ROM wasn't good and the specialist wanted an MRI done as he was concerned she might have had a labral tear. For those who don't know what this is, the labrum is like a piece of elastic that lines the acetabulum (socket) and it stands to reason that perthes kids, with their mis-shapen femoral heads, are prone to this being torn.

Unfortunately, the appointment for the MRI ended up being on the 20th December, so instead of getting the results in 48-72 hours, as normally happens we had to wait until late January, which meant that the whole of the christmas/new year break was a bit nerve-wracking for her and I in particular.

We saw the specialist though and the results were that her labrum were intact (PHEW!!!!) although her cartilage is thinning and that is a concern. So she now sprinkles gelatine on her cereal 4-5 times a week to see if that will help with the health of her cartilage, as good cartilage will help to post-pone the need for her hips to be replaced. I am hoping that as she is now well into that habit, it might be one that sees her through a lifetime!

She was actually a little disappointed that she wouldn't need a labral repair or two, as she was hoping that while they were doing that, she would get a tenotomy done on her hip extensors and hopefully that would go a long way towards her having improved hip extension when she walks, meaning a better gait! The labral repair surgery is laproscopic, so in comparison to the osteotomies and external fixator, it was going to be a lot quicker recovery too.

On the hobbies and interests side, Caitlin joined a waka ama team in November - waka means canoe and ama is the outrigger part. Its a 6 person team, with the girls ranging from Caitlin and her friend at 14 1/2 years old, up to around 18-19 years old. They train once a week most weeks, sometimes twice a week.

Just before christmas, we all travelled to Lake Rotoma for regional competitions and the girls placed well, especially considering how short a time they had been together! They were then able to go to Lake Karapiro for the national competitions, where they were expected to do the best they could, but no-one expected a placing from them. Considering they had to race in the Under 19's, instead of the Under 16's, due to a couple of the girls ages, they placed 4th, with the fastest time, so actually made semi-finals the next day! They ended up with a national ranking of 16th, which considering there were 40+ teams racing in that age group, was an outstanding achievement!

After all of this, was when Caitlin had her specialist appointment and she informed him then what she was doing. He was pleased for her and totally supportive, as he has always been of her horse riding too. Waka ama uses a lot of upper body strength - back, shoulders, arms etc, but the movements go right through to the pelvis, without any weightbearing, so is perfect for her! She is now training as a steerer and will soon go on to single sculling too, which will do her the world of good.

Her pain levels are pretty good at the moment, although we do find that she needs heavier duty pain meds to ride, so will address this with the specialist at her next appointment mid-year, as she has slipped back to 6 monthly appointments yet again! So frustrating to get to the annual ones, then slip back everytime - perthes truly sucks like that!

She is in her second year at college and is thoroughly enjoying herself. She loves science, which is really good as at this point in time, she wants to be a forensic anthropologist or pathologist! She is taking drama and is involved in a Shakespeare festival in a week or so (Taming of the Shrew a la Lady Gaga! - can't wait to see it to see how they pull that off!). She is taking food and nutrition, isn't too keen on maths, hates english (can't be my child LOL!!) and generally seems to be embracing all the opportunities that come her way.

Last specialist appointment I got a letter done by the specialist for the school too, as I was sick to death of having to tell them she is still on restrictions and has to be allowed to pick and choose activities, if she knows they could potentially hurt or do damage - she is old enough to know what is required and isn't the sort of kid that shirks activities for the heck of it (most of the time anyway!).

Anyway, its been a long journey so far. Caitlin was diagnosed at 5 years 3 months old and is now 14 years 7 months old. Perthes is supposed to take around 2-5 years to run its cycle and yet here we are, 9 years 4 months later, wondering if it will ever end! I know that once her bones stop growing, we at least hit the end of the childhood phase of this, but then she will move forward into her adulthood with very deformed femoral heads, that are too big and flattened looking; acetabulum (sockets) that have thankfully, changed to accommodate these as much as possible; very limited hip extension still; all ROM measurements are low, but considering what she has been through, this is to be expected! She walks pretty well considering and unless she is having a growth spurt, or is overtired, it is hard for the general public to pick up the differences in her gait. I can usually pick something is wrong by how she is walking, before she has even acknowledged it herself. She is still also being watched (by the specialist) for a potential hip impingement, but I hope that is one hurdle that never comes up, as its another big surgery to fix and with her being so much older now, that sort of surgery is harder to deal with physically and emotionally, especially when you're a teenage girl!

Friday, August 29, 2008


We saw the specialist earlier this year and he has supported us with continuing to maintain her ROM, so Caitlin will continue at Riding for the Disabled (RDA) and hydrotherapy/swimming once a week each and referred back to physiotherapy for support there too.

We finally got the physiotherapy appointment this week, so all excited as we were going back to a therapist we saw through the fixator time. What a let down! I don't blame her - I feel she was just the bearer of bad news - but have been told that other than an annual check on Caitlin's ROM, they aren't prepared to do anything else, as nothing can be done. Pretty disappointed to say the least!

Caitlin has no hip extension whatsoever, when she walks and they feel that she never will. However, when she lies down on her tummy and bends her knee, she can lift her thigh off the bed, which is extremely hard to do and requires 'hip extension'!!!!

I had a pity party that night, thinking that was it. They seemed to think that I am after perfection for Caitlin, where in fact, what I want is for her to be the best that she can be!

So I bought a copy of Tae Bo Kicks for Kids, to help improve her core strength and ROM and we have hired an exercycle for a month, to see if that helps too. One thing they might realise one day, is to not under-estimate the determination of a perthes mum! I will not accept NO for an answer and neither should anyone else.

Saturday, March 17, 2007

Caitlin was born 21st August 1996. She was a little late arriving (10 days overdue), but not a C-section, like her big brother. Healthy little girl with nothing apparently wrong with her except her left leg was somewhat bowed.

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.