New diagnosis?

[gemsiedec]

Hi there. my son Declan is 6 years old he has been diagnosed in january 08 with Perthes and my god have we had a rollercoaster ride with it he has just been given crutches as he cant weight bear on his leg. he is on stronger pain killers as Neurofen was'nt doing itz job anymore.
He has just been in hospital on beds slings that actually worked wonders. we are in the waiting process we go back to hospital in 2 months to see if he need the operation we have been dredding.
Gemma

[Donna Brown]

Hi Gemma

What sort of operation are they planning to do?

Unfortunately the word 'rollercoaster' sums the perthes journey up perfectly!

If there is anyway that anyone can help, let us know. If you want to find out if there are any other perthes families in your area, contact me through [e-mail] and I will do all I can to help you with that too.

Donna

[Julie]

Hi everyone

Yep, new to Perthes! Our son Matthew was diagnosed with Perthes on Thursday. He will be 6 in May & has been symptomatic for about 2 months. He is experiencing intermittent groin pain. Had an ultrasound for an inguinal hernia which came up negative about 5 weeks ago. Following complaints of pain on Wednesday morning we went back to the GP who ordered an X-Ray & he was subsequently diagnosed.

We have an appointment with an orthopaedic surgeon on Wednesday so will know more of what to expect later in the week. In the meantime, it is interesting to read of other stories and comforting to know that Matthew's prognosis of living a normal and active lify is very good. He is a keen soccer player, swimmer & athlete. It appears we can at least keep swimming (we're Aussie's!).

Matthew has been issued with crutches. He is using them when we are outside, but keeps forgetting about them inside the house as he is pain free for now (except when he occasionally swings his leg the wrong way).

Thank you to everyone who has shared their story on this forum.

Julie.

[tanya]

Hi Gemma,

Welcome! Sorry to hear about the pain your son is having. Breaks a mums heart to see their kids suffer like this. Hope your next hospital visit shows surgery is not needed.

Tanya.

[tanya]

Hi Julie,

Welcome from accross the ditch! Hoping the appointment for Max goes well on Wednesday and you get some helpful information. I'm guessing you've read the infor on Donna's site. Being well informed is a great way to understand all the jargon the Drs throw at us.

Let us know how it goes.

Tanya - NZ

[mrsdolinas]

Hi everyone, Hope this finds you and your kids well. I thought id introduce myself..My names dolina Im a mother to a 4 year old girl azlina she has been diagnosed with perthes on friday. specialist said that she dosent need treatment at the moment just limited activity. Im just starting to worry cus some of you have had other treatment given to your kids... like braces and casts...I think she would need a cast or something just in case. well i hope to hear from all of you soon

[xcarriex2002]

Hi
Me and my family found out my little brother who is 8 has perthes. He was diagnosed Oct 07 . We are all worried because we just know what is going to happen. I have read alot of posts on this website and they are very helpful ! Can anyone tell me how quick it took from diagnosis to them being in plaster? (if that makes sense) I know everyone is different but it would help me and my family.
We are trying to give him as much exercise as we can the moment e.g bike riding and swimming . It is the first time we have had to go to the school to give him pain killers today !

[Donna Brown]

Hi Julie

There is a new treatment being offered in Sydney called Biophosphonate - go to the 'Treatments' page of this site and read up about it. I do know of a family with a child who has been treated this way, but its very new and there is no long term data on it. However, you may be able to find out if its available where you are and whether or not your son is eligible for it.

Donna

[Donna Brown]

Hi Dolina

Azlina's age is definitely in her favour and taking a 'wait and see' approach is completely appropriate for her. If she has increased pain, trouble with weightbearing or moving her leg, then get her back into the specialist as soon as you can - its a judgement call on that, as they all have bouts of this happening. However, I am talking about more than just one or two isolated incidents of this happening - where its been a couple of days, of things having changed markedly.

Otherwise, just keep her jumping and running down, as that will help to keep the inflammation down in the joint and inflammation equals pain.

If you can get her into swimming, its the best possible exercise she could do and its a great skill for all kids to have (and its fun!) Even just playing in the water, if not swimming lessons, as moving against the water helps with muscle strength etc too.

Donna

[Donna Brown]

Hi xcarriex

Casting depends on whether or not your brothers hips (femoral heads) are contained in the sockets. If there is a problem there - and your doctor will possibly use words like subluxing or subluxation, or lateral extrusion - then they may do a tenotomy, where they clip the tendon down the inside of the thigh, to loosen the hip joint up and put petrie casts on - these are from thigh to ankle with bars between the legs to maintain the angle of the hip.

There are so many treatment options including surgeries, but it depends on the age of the child, what is happening, what your specialist is good at doing, what your family feel they and your brother can cope with and many, many other factors.

Donna

[mrsdolinas]

Hi Donna thanks for you message, It calms me down quite alot.. I will take your advice and if she gets worse i will take her back in. I will try to get her down to the hydro pool for some activity thanks for telling me! well we have an appointment tommorow and hes going to see if the "rom" is getting better or worse. It is so good to read up all about this disease on your site as it dosent make me feel alone.

Well thank you very much for your advice..

Dolina

[Julie]

Hi Donna

Thanks for the information regarding Biophosphonate. Have done a literature review on Perthes (how to go from ignorance to expert in a week!) & saw it pop up. Will go back & have another look.

Matthew had his first visit to the specialist today. It is early days so will be some time before we know the extent of the damage. Matthew is relatively pain free at the moment so it was recommended that he continue with current activities minus soccer, little athletics, running and jumping. He is also to crank up his swimming. He currently swims one day per week, so will replace other high impact activities with swimming, up to 3 days per week. He can also continue to ride his pushbike which is great news for this active little boy! More x-rays in three months.

Dolina it is interesting to read of Azlina's condition. We have received similar advice to you regarding treatment. Matthew is 5.

Gemma, hope Declan can avoid surgery.

Hope to be able to keep in touch regarding progress & support.

Julie

[mrsdolinas]

Hi Everyone!!!!!! Julie, Sorry to hear about your son matthew.. Crutches must be so hard on him at the moment. My daughter azlina is very active too, and now she cries cus i have to put her in a pram all the time and wheel her around. Update, Well today we had another appointment with our orthapaedic specialist and he checked her range of movement and apparently it is excellent!! I was shocked, he said she had improved dramatically and he thinks that she might not have perthes disease after all.. But.. azlina will have another xray in 6 weeks time to see if the dent in the femur is still there and whether it has healed or worsend, (That dent is what diagnosed her with perthes) He said she might have a condition called irratable hip syndrome. Well we have to see in 6 weeks time. But im still cautious it could all flare up again. Well i hope all of you have had some good news lately and im sending you all some good luck... Take care for now

[tara]

Hello,
I'm new to this forum. My son was diagnosed with legg perthes in jan. Sean's 7. He's been limping since oct. We are struggling with alot of pain. We went to orthopedic whom rec pt. for range of motion excersises. We faithfully did this he's getting more pain by the day I've had him back and forth to any dr. that will see us and pt. He 1st was given cruches,a week later wheelchair,for school the pain was so severe we went to boston childrens emergency room on friday to find out its in both hips. We are giving motrin 3x a day. He is really struggling. Sean was born with some stomache issues. Vomiting alot etc. he had surgery on his intestines. Has there been any relationship between absorption issues and perthes??Could there be a connection??Any help out ther would be great . Tara :

[Donna Brown]

Hi Tara

As far as I know, there is no proven link between perthes and anything else, but then there is still so much that is unknown about perthes, such as they know that it starts with an interruption to the blood supply, but not what causes that to happen.

I recommend that you look at one of the online support groups listed on the main site - there are two that are really good Legg Perthes Support group which has members with children of all ages and Information-Perthes that has some parents of children 8+, but mostly aims at the younger kids and non-surgical options wherever possible. You can join both as there are many members that you will find on both of them.

Do you use heatpacks and hot baths or showers? That can really help with relaxing the muscles. As for physiotherapy, you may be better off looking at hydrotherapy if you can find it, as that means no weightbearing on the pelvis and may mean less pain.

Donna