Spyke Update

[stacey]

Hello everyone. ( from the UK)

My son Spyke is 6 years old and started complaining about thigh pain approximately 5 mths ago . He is extremely active and 4 a while as his complaints where intermittent ,my husband and i put it down to muscle strains etc. The mild limp got progressively worse and in December I took him to our GP . Our GP was brilliant and suspected Perthes straight away , she then did everything in her power to get us to a consultant as soon as possible ( this is the NHS)
The beginning of Jan was our 1st appointment and he took x rays , diagnosed Perthes, told us he had a leg length discrepancy and very restricted hip movement. He told us to carry on as normal but to refrain from contact sport and trampolining etc. Which is not normal to Spyke as he was a very keen moto x rider , bmxer and footballer . He was also referred to the physio who now visits him in school every week and we have enrolled him in swimming club to which he attends three times a week .

At first it seemed quite mild and it was more the case we would have to discourage him from jumping and roughing about too much . The last three weeks however the pain which was just in his thigh is now in his hip also. He has alot of pain esp on a night. His limp at times his really bad and heart wrenching to see and he also complains that his hip keeps clicking.

We don't see the consultant till the end of April . The first visit was a shock and I didn't ask many questions . We where in and out in 5 mins. People on this forum seem to have alot more info on the stages and the amount of femoral head affected etc .The
consultant mentioned that he could have had Perthes for up to a year before diagnosis and that once the bone started regrowing Spyke would be able to resume all activities .

I would appreciate some advice of the questions I should ask when we go. Next time we will see the proper consultant as last time we saw his registrar and I wasn't that keen on him.

We are really trying to be positive and Spyke his handling it like a Trojan . I think of every bad thing as a positive as like childbirth the more pain etc the closer we are to an end . I just desperately hope he makes a full recovery and regains movement in his very stiff hip.

Any advice or comments would be greatly received.

Stacey

[samsdad]

Hi Stacy

We are also form the uk.

I am not a doctor and I can only speak from our experience. I think the pain that spike is suffering from maybe due to inflamation, which is caused from weight bearing, walking, jumping and running etc.

I know this wont come easy, but you may need to consider some sort of walking aid, wheelchairs (red cross) or crutches (nhs) as the less weight bearing the better.

The swimming is excellent the more of that the better.

Sam started out similar to spike in that he had pain and was very stiff with bad range of movement. He now uses a wheelchair for 80% of the time and swims 3 to 4 times a week and for the most part is pain free (it comes and goes), he is not stiff and has good range of movement.

As for medication when Sam has pain we use nurofen 3 times a day for hawever long it takes, form 2 days to 2weeks, we find this helps.

Sam has full head involvment and is grade4 (its full on).

You may wish to ask your consultant what % head involvment spike has and what grade he has. We can also point you in the direction of a very good consultant that specialises in Perthes, if you want.

If you want to contact us direct, my wife will be happy to share lots of tips with you, feel free to email us at [e-mail]

All the best.


Jeff

[stacey]

Thanks jeff for tghe reply. We are from east yorks. I would love to contact you and certainly will after the weekend. I will definitely ask those questionswhen we next see the consultant. The wheelchair issue keeps coming to mind but i just feel that the longer we can hold it off the better . It feels so depressing but I am sure it will come to it in the summer as otherwise we will be very restricted. I will email you in the week and thanks for your support .

Stacey

[Donna Brown]

Hi Stacey

Impact on the hip joint causes inflammation and inflammation equals pain, so the sooner you get him off that leg (or at least only partially weightbearing) the better. Your physio should be able to teach Spyke how to walk properly on the crutches or walking frame, so that he gets maximum benefit without causing other problems, with a bad gait.

I am sending you an invitation to an online support group - your choice whether or not you join though. Everyone on this group either has a child with perthes, or had it themselves as children, so they will be an awesome resource for you, in putting that list of questions together.

Donna

[stacey]

Thanks Donna .

I have joined the group . Thanks for the invite.

I had a feeling that he needs to get off his leg alot more but when we saw the consultant in jan 4 the initial diagnosis he said to carry on as normal barring contact sport and trampolining . However his leg does seem to have got alot worse and the pain too. We don't see the dr again untill the very end of april and i wish it was sooner as there are so many questions i want to ask.

Samsdad mentioned a wheelchair and i fear that we will have to get him one especially 4 the summer . Otherwise we will all be very restricted . The hospital did offer to lend us one if we needed it. I even worry that if he is in a wheelchair it would look odd if he jumps out and hobbles off at pace . The physio has not offered us crutches but did say that his hip was stiffer last week than the week before.

He has less than 50% movement ion most hip positions and even less in some . Is that a bad sign ?

Thanks again

Stacey

[Donna Brown]

Hi Stacey

Its hard when you have your child out in the wheelchair, so that the distances can be covered easily, then when you get to somewhere you want to be, they jump out and move around well. What most people don't see though, is that you sometimes end up carrying your child back to the wheelchair, because they have overdone things and can't make it back there, let alone back to the car or whatever!

People will comment and ask questions and you will get really annoyed with answering the same questions over and over again and feeling like you are being made to justify yourself. Just remember that everyone who asks, its their first time asking (even though its your millionth time answering) and you do have an opportunity to educate them if you wish.

I had a standard answer for people, that my daughter had a degenerative hip condition - that was usually enough for people and they walked away happily. For the ones that wanted to know more, in a large number of cases, they had heard of perthes, or knew someone who had it and so they were the ones that you didn't mind stopping and chatting to, as there was a level of understanding and judgement on their part.

With regards to Spyke losing movement, might be worthwhile really curtailing his extra activities as much as possible and see if over a couple of weeks, if it stays where it is, or improves. I would be concerned that he has lost so much ROM, but that may settle down. Some stages of perthes can be more painful than others and even something as normal as a growth spurt, puts a lot of extra pressure on the joints and muscles. Also, be aware that over time, if something hurts when its done, the kids can get into the pattern of assuming that everytime they do that activity that it will hurt, even far down the track when this isn't a reality, so they do need to really be encouraged to try and do things, even if it did hurt last time.

Our specialist is of the belief that its 'use it, or lose it' and I think thats a really good approach with perthes, just maybe modified a little to 'use it wisely' - so no overdoing it!

Donna

[samsdad]

Hi Stacey,

I would agree with everything Donna say's she knows her stuff.

You know as depressing as this is there are some funny moments. like when your kids in a wheelchair at theme parks you get to q jump and as you walk past people in the q most will give a sympathetic glance at you and your child, but just watch their faces as he gets out of the chair and jumps onto the ride, priceless!

I guess I'm just trying to say dont worry to much what other people think, you will get use to it. It is what it is.

The NHS made Sam his own bespoke chair with snazzzy wheel hub caps and he chose the colour. Maybe you could get the same.

I really believe for most kids with this condition (full head involvment grade 4 etc) the less weight bearing via a walking aid and lots swimming is the way forward.

All the best


Jeff

[stacey]

Thanks Donna and Jeff

The funny thing is that the last few days his leg is alot better then it was . I have a feeling that he overdid it a couple of weeks ago and like Donna said it probably got inflamedand caused more pain and stiffness. The last few days have been really good and his physio said he seemed alot freeer this week.

I will enquire about the wheelchair still when we go to see the consultant . I think it would be good to have for the bad spells . I feel i am coming to terms with the wheelchair and spyke doesn't seem bothered and really we don't have to justify ourselves.

I have also enquired about riding for the disabled . Though am not sure if Perthes kids allowed to ride the horse or do the carriage driving . They said that if he rides he would have a leader and two people at each side of him. He has lost so many hobbies and has expressed an interest in riding before so i thought it might be something else apart from swimming to get him through.

Jeff, What is sams long term prognosis or are you still not sure?
Does he use the wheelchair at school or just at home and when you are out? Also does he miss much time off school? Do you know how much hip movement Sam has lost? How long has Sam been diagnosed? Sorry for the 20 questions. You are my first Perthes parent.

Take care

Stacey

[samsdad]

Sams, long term prognosis is that there is a 60% he will come through this ok (without surgery) which may improve to 70% if we agree to containment surgery (which we have decided not to at the moment, as theres a lot of trauma involved for a possiable 10% increase) this 60% is based on us continuing as we are currently with the chair etc.

Sam uses the chair at school and when we are out. At home he walks but if theres pain we have a frame or crutches or he can use the chair. I know all this sounds quite involved but you do get use to it and Sams a happy kid that does not feel sorry for himself and has lots of friends. He does not miss any time off school because of pain if he has a period of pain we will go in and adminster nurofen. He sometimes misses a couple of hours or a half day due to hospital appts.

Sam had lost a lot of hip movemnt when he was originally diagonised back in November 2007. Once we got the chair and swimmimg sorted he regained nearly all his movement and his consultant remarks that his range of movment is remarkable given the state of his femoral head. Sam can make his walk look normal if he wants to.

Ask as many questions as you like.


Jeff

[Donna Brown]

Hi Stacey

Caitlin has done riding for the disabled for 5 1/2 years now and loves it! She is doing more proper riding now, with only a small percentage of therapeutic riding, as she is well along the track with healing etc and also needed the mental stimulation and challenge of riding as she would have to for pony club. It is still done through our Riding for the Disabled and they are looking into whether or not she can go through and do dressage with their support.

Initially she rode with a leader and a side walker on each side of the horse, but as she got stronger and more able, they cut that back to one side walker and the leader and now there is only a leader there, when she needs it.

She has always ridden astride the horse and for this, you really need to have Spyke assessed properly. The horse needs to have a really narrow back, as otherwise the child is spreading their legs too far (too much abduction) and this can be painful. She still has to take a paracetamol before she rides, so that the ride is as long as we can make it - usually around 20-25 minutes - and yet, she still is a bit stiff when she gets off and it takes her a few steps to move with her legs together (initially she is bandy-legged even now).

Caitlin rides on a pad with stirrups, as that allows her to experience maximum movement through the horses back, which is good for loosening up her pelvis and the stirrups mean that her legs aren't just hanging and therefore pulling on her pelvis. The horse she rides now has a lot of front to back, side to side and up and down movement through his back, so she ends up with quite a swivelling motion through her pelvis, which is great for her.

If you go to www.equestriantherapycentre.co.nz this is the site for the centre we attend. Caitlin's photo is on the top of most of the pages and she has her story on there, as well as many other photos. I also have a number of photos and a lot of information that I can pass on to you regarding this, if you are able to get Spyke in to riding.

What I love the most about it, is that this is definitely something that she can do. She loves riding and her friends are all jealous that she goes horse riding every week - they don't care about the therapeutic aspect of it, just that they are all horse-mad!!!

Donna

[stacey]

Thanks Donna

That info was helpful . I've spoken to our local RDA and the lady was familiar with Perthes which was a bonus . She is sending me the forms and I can take them to Spyke's Physio . It starts on April 20th so fingers crossed . Its only about 5 miles from where we live so thats handy. I mentioned that he might need a thin horse lol and she was familiar with that too.

I read Caitlin's story on the website link you sent . I really hope that after 5 yrs she is well on the mend now. She is a beautiful girl.

Thanks for all you do on this website it really is such a help and support.

Take care

Stacey

[Donna Brown]

Hi Stacey

Glad to be able to help!

Good that the lady is familiar with perthes, as that will make a huge difference to what happens with Spyke.

Caitlin is doing well. She is 12 1/2 years old now (diagnosed at 5 years) and is still in regrowth. She will need both hips replaced in her 30's or 40's (hopefully), as they aren't that wonderful, but they are functional and the pain isn't an issue anymore and thats the best we can hope for. She continues with riding, as its something she really enjoys and as she has always fought me on doing the stretches and physiotherapy for perthes, this achieves most things and its fun!

Donna

[stacey]

Hi

Just thought i would give an update on Spyke .

We went to see the consultant last week. The news was not great. We discovered that spyke has full head involvement and the surgeon wants to operate. He feels that it needs containing as it is coming out. The xrays looked awful his femoral head seemed really flat .The operation he wants to do is a pelvic or femoral osteotomy though he said he might do a bit of both and use metal plates that will have to be taken out a year later. Spyke will be in plaster for 6 to 8 weeks .

The consultant is hoping to get him in sooner rather than later as he said there is a time slot and if we wait too long we won't be able to have it. We are thinking it could be as soon as the end of may to beginning of june. The consultant also mentioned that he was a bit concerned about leasions near his growth plate.

After the plaster is off Spyke will have intense physio.

I feel worried and wondered if anyone can shed light on these ops and maybe suggest some questions to ask the dr when we go 4 his pre op appointment.

Thanks

Stacey

[Donna Brown]

Hi Stacey

Caitlin (my daughter) had pelvic osteotomies and then a hip spica cast afterwards. This cast goes from under the armpits to the toes on the leg that was operated on and to just above the knee on the other leg. There is a bar between the legs to maintain the correct hip position and its cut out around the genital area for toileting through this time. The cast alone weighed 10 kilograms, which was a considerable weight increase, if you consider that at that time, Caitlin was only 28 kilograms! Its awkward to lift and the child really does need help to change positions etc, BUT it can be done! In Caitlin's case, we did the surgery, had the cast for 7 weeks, back in and had the other hip done and back in the cast again for a further 6 weeks.

You joined the online support group and that would be a great place to be getting ideas of questions to ask your doctor pre-surgery.

A lot of these surgeries do have a 'window of time' where they are the most effective. Any time before that or too late afterwards and the surgery isn't worth doing.

Donna

[steen]

I stacey our son Reegan aged 7 has bilatreal perthes and he cant do any sporty activites but the surgeon said he can still ride his motorbike we do trail riding and motorcross Reegan needs help on his bike and slides off the end when he is finished riding, he uses his discreation when he rides and to his limit it breaks our heart but he is the rock he has taken up the drums does swimming and his rugby team has made him the manager We also need a wheelchai but he copes