24 comments posted · 56 followers · following 0

9 years ago @ Amummyslife NZ - Specialist Appointment... · 1 reply · +1 points

Just watched that vlog. What a scary man! Look at his body language! Armes crossed. And what an examination! He starts with reproaches about the crutch and sling. He lets Celine walk no more than 11 steps. He moves her legs for 35 seconds without looking at her. Doesn’t bother to look at her leg muscles, not to mention her feet (what about the possible ganglion on her left foot?) He didn’t know how old she is, that means he didn’t prepare the examination propely. After 6 minutes he tries to say good bye. The next appointment is, unbelievable, Easter! Sorry, but this is no way to deal with the fate of a little girl. He did not in any way try to understand Celine’s needs or habits. She shouldn’t use her crutches, but not jump or run? Everything she wants to do is jumping and running! Patricia, I think it is very wise to keep her using the sling and crutches. If it is for 80% of the time it is anyway near to what the doctor mitt have meant.

9 years ago @ Amummyslife NZ - Thankful Thursday - Th... · 0 replies · +1 points

We had planned a proper launch of this campaign, but unfortunately some of us had pretty hard times recently. So no smooth start of the fan page, however, now there it is! I do hope sincerely that now somebody over there in New Zeland takes the lead. We cannot possibly do this from here in Europe, it needs a fundraising account, links and knowledge.
So all Facebook friends of Patricia, all followers of this blog, please consider your role here. You are many, and if many give much will be the result.

9 years ago @ Amummyslife NZ - Regarding Thursday\'s ... · 0 replies · +1 points

Well, obviously your followers reacted by starting fundraising campaign:

9 years ago @ Amummyslife NZ - A novel idea · 0 replies · +1 points

Thank you for these thoughts. Congratulation with your creativeness! As far as I know there are no toys representing children with disabilities available here in Germany. I heart abot a wheelchair Barbie but this has never been sold outside the USA they say. Here, a while ago Playmobil (popular here in Germany) sold a wheelchair figure but they don't produce them any longer. And mind, I looked in the toy shop today and realised that there was no doll with glasses - all perfect bodies. My daughter would clearly love to have a puppet to identify with. And other children? Why not, it were a good way to get them in touch with the concept of diability and differences. Plush or movable: I don't know. My daughter loves both, plush are her animals, and movable the humans. Go and give it a try! Get in touch with parents with kids with special needs, there are many face book groups - maybe you can make some toys to order, for handicapped kids to identify with?

9 years ago @ Amummyslife NZ - School Photo · 0 replies · +1 points

Yes, grown up she looks! There is indeed a relation between Perthes and maturity: According to the abstract of a PhD thesis Perthes girls undergoing long term conservative treatment (thus wheelchair, crutches, non weight bearing braces, for more than a year) are more intelligent (and attractive). The PhD thesis is trying to establish whether this is caused by the treatment (kids get more attention, are more self reflective, are forced to do more intellectual than physical activity), or just the other way round: Kids with more intelligence have insight into the necessity of the treatment.

9 years ago @ Amummyslife NZ - Why I do daily vlogs · 1 reply · +1 points

Thank you very much again. As far as I can see you are the only Perthes mother world wide who does this extensive reporting about the daily life with this disturbing disease. This is an invaluable resource for all Perthes parents, and children alike, especially girls because they are a minority group. Being a Perthes mother myself I share your approach not to make the disease central; my daughter is a child in the first place and not a patient. And yet, as you say in the end titles of your vlogs, it is important to inform about Perthes. I know members of our German Perthes Girls Facebook page (Morbus Perthes bei Mädchen) keep following and are always a bit diappointed when there is no Celine feature... We do have all a very high respect for your openness, the more as most of us here are more reluctant to present our situation. In my case it is a contractual issue, my employer doesn't allow me to be active in social media other than verbal, and I know at least two fellow patient's parents who aren't allowed to disclose details that might trace back the doctors: Medical confidentialty is not a one way street.... So please keep up the good work for the sake of the little patients and their parents all around the world!

9 years ago @ Amummyslife NZ - About Celine\'s Foot · 1 reply · +1 points

It is an interesting learning moment for Celine’s European fellow patients to see that you have summer when it is winter here. Your vlogs are so important for us all. We parents can make a point: “Do your exercises as Celine does”, “Wear your sling as Celine does” and the like; the children are keen to see her in action, because she is so active and spirited most of the time and so proficient with her crutches, that is an incentive. So any visual illustrating how to cope with Perthes in everyday life is always more than welcome.

10 years ago @ Amummyslife NZ - Thankful Thursday - Ba... · 0 replies · +1 points

I am thankful for your Q&A vlogs as well as for your Snyder Sling design. It should now be called the Swanepoel Sling indeed! I want to give a feedback from our latest orthopedic appointment. My daughter walked in according to the one shoe one sock one sling two crutches scheme we are applying for quite a while now (she is wearing the sling permanently and puts her foot into it when she is going to walk more than a few steps). The doctor didn’t seem to be amused because this wasn’t following his prescription. He inquired about the sling and appreciated the design as opposed to that 1950ies design he knows from the literature. Following the x-ray and his examination of her hip he considered a positive effect, her range of motion and her pain status is much better than he should have expected from the x-ray images. Obviously, the sling has a modest traction effect; the weight of the leg pulls the ball of the hip joint and reduces the pressure. Additionally, as there is no muscle action of the affected leg needed it reduces spasms considerably. As a result he encouraged the use of the sling as much as possible, it were the best thing we can do. I just wanted to share this, maybe to encourage Celine to use her sling more often.
All the best

10 years ago @ Amummyslife NZ - Question and Answer Vl... · 0 replies · +1 points

I am now trying to keep my daughter off her right leg. She didn’t accept that. I have now introduced the bare right foot scheme. I actually threw away one of her right shoes while she was looking. And this works! Now she walks with her leg up but keeps complaining it were too exhausting. Drama queen? My elder daughter walked all day on her crutches when she had a broken leg some years ago. So now I will try the Snyder sling. Thank you for the tutorial. Yet I wonder if and how Celine is using her sling, and if so, how you convinced her? What distances can she walk, how much time can she spend walking? How to sit down with it? Have you considered a wheelchair?

10 years ago @ Amummyslife NZ - Question and Answer Vl... · 0 replies · +1 points

Our doctor who diagnosed Perthes prescribed crutches and allowed 500 crutchless steps a day. My daughter is almost 7 but cannot count to 500 yet. He referred us to the leading German specialist in Frankfurt. She recommended supervised neglect, no running or jumping and crutches only when pain occurs. Come back in 4 months and see whether surgery might be an option.