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When Fred was 3 he started complaining of pains in his left leg, at first we thought he\u2019d pulled a muscle. He was a typical 3-year-old boy running and jumping off everything. He kept complaining, sometimes of pain in his left knee, and sometimes he had a limp.\u00a0 We had several trips to the doctors, drop-in and Alder Hey. After about 3 months of being mis-diagnosed with a hip infection, irritable hip, he was diagnosed with Perthes Disease.<\/p>\n
We were told it was so severe he would need an operation straight away as his movement was so bad. They put us on the waiting list at Alder Hey and told us to come back in 6 weeks for his pre-op. His pain went from bad to worse very quickly. He didn\u2019t sleep, sometimes he couldn\u2019t put his left foot down with the pain. After a few trips to Alder Hey we were given strong meds to give him at home, but these would just knock him out. Although he needed the pain relief, it was horrendous to see him like this.<\/p>\n
We went for his pre-op to be told they didn\u2019t want to do the operation on someone so young so, for then, after a second opinion at Alder Hey we were told we just had to see what happens. We were heartbroken not knowing what was going to happen, what we could do or how long this would go on for. Dr Perry has been amazing and with us every step of the way. The support from him has got us through. Dr Perry monitored him closely and Fred has never had an intervention.<\/p>\n
It had a huge impact on our lives in the early days, we had to totally change the way we lived our lives, we were limited to what we could do and where we could go. Simple things like going for a walk, to parties, who we visit, where we go, how much travelling etc. We had to consider how much walking was involved. There were very few parties he could go to as they were normally soft play, football, or trampoline parks.<\/p>\n
We had always been an active family and this had changed in terms of us being active together. We couldn\u2019t just go to the beach for a walk with the dog. Fred could walk but not for any length of time as his leg would get sore. Generally, we used a pram, but he hated going in it. He would as long as we explained to people about his hip and why he was in a pram. His dad would put him on his shoulders but the position of his hip when he’s been on his dad\u2019s shoulders meant his hip would stiffen really quickly and get sore.<\/p>\n
For his dad and I it was just heartbreaking seeing your baby in so much pain. It’s the pain that affected us the most. Knowing as parents your child is screaming in pain and there’s nothing you can do to help. You feel it in the pit of your stomach. It wasn\u2019t going to beat us, and we’d do everything in our power to help him and we have.<\/p>\n
We are so lucky to have support from our amazing family & friends and Lily has always been the best big sister anyone could ask for.<\/p>\n
Looking back now I think people just didn\u2019t understand, it’s a rare disease and the other problem was on good days Fred looked like there was nothing wrong and he could do anything any other child could, but it was the fallout afterwards that his body couldn\u2019t cope with, and he would suffer terribly if he did too much. People didn\u2019t see the bad side though. Very few people have.<\/p>\n
We only shared positive pictures on social media and hid away with the curtains closed when he had a bad day until he\u2019d recovered. We would try to shelter him from people seeing him. We certainly didn\u2019t show how bad it got so I suppose it’s hard for people to understand without seeing it.<\/p>\n
Fred is now 10 and doing amazingly well. His hip has 95% regrown on his last X-ray (August 2022) it’s the perfect shape and size and fits perfectly into the socket of the joint. He’s recently started playing for a new football team, Woolton Lille, Liverpool<\/p>\n
(a sport a few years back he wasn’t allowed to even play) they have welcomed him with open arms and we’re so grateful he can now play at the level he does. Fred plays at least four times a week, runs cross country for the school and he is literally making up for lost time!<\/p>\n
To the naked eye it\u2019s hard to tell which side he has Perthes and that\u2019s down to hours of physio, massage, stretching and exercises. We\u2019ve worked as a team since day one. I\u2019ve done his daily exercises, soft tissue release, massage and physio. His dad has worked on his strength with training, teaching him to ride a bike (something he\u2019d never been able to do in case he fell on his hip) he now goes on over 20km bike rides with his dad without complaining of any pain.\u00a0<\/p>\n
The only other thing I’d like to say is Fred himself is amazing. He doesn\u2019t let anything hold him back. He doesn’t suffer any pain at all now but still stretches daily and before he does any form of exercise.<\/p>\n
We hope Fred shows other Perthes Warriors out there that there’s light at the end of that very dark tunnel when you’re first diagnosed.<\/p>\n
We’re so ridiculously proud of him with how he’s dealt with it and we\u2019ll always be grateful to our amazing family, friends\u00a0and Dr Perry whom have got us through<\/p>\n
Fred’s our hero, our Perthes Warrior.<\/p>\n
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When Fred was 3 he started complaining of pains in his left leg, at first we thought he\u2019d pulled a muscle. He was a typical 3-year-old boy running and jumping off everything. He kept complaining, sometimes of pain in his left knee, and sometimes he had a limp.\u00a0 We had several trips to the doctors, […]<\/p>\n","protected":false},"author":2,"featured_media":6337,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_bbp_topic_count":0,"_bbp_reply_count":0,"_bbp_total_topic_count":0,"_bbp_total_reply_count":0,"_bbp_voice_count":0,"_bbp_anonymous_reply_count":0,"_bbp_topic_count_hidden":0,"_bbp_reply_count_hidden":0,"_bbp_forum_subforum_count":0,"_et_pb_use_builder":"on","_et_pb_old_content":"
Archie Andrew is now 21 months old, he was late being diagnosed with DDH in his left hip at 18 months old. <\/span>This is Archie's DDH treatment story:<\/span><\/em><\/p> When Archie was born he passed all checks including the hip checks. All appointments with his health visitor went amazingly and was continuing to show no signs of any hip issues.\u00a0<\/span><\/p> Archie began showing signs when he started to walk between 12-13 months old. The sign that stood out most to me was that Archie walked flat-footed on his right foot but tiptoed on his left. I contacted his GP and after a long wait, I received an appointment at the hospital for him to have an x-ray. The x-ray showed Archie\u2019s left hip was not where it should be and it was then in December 2020 he was diagnosed with DDH.\u00a0<\/span><\/p> Following his diagnosis I did my research about DDH because I had never heard of it before and that was when I came across the STEPS charity. I was unaware of how many children do suffer from hip conditions and how many different hip conditions there are and how late some are diagnosed and I think it\u2019s very important that we raise awareness for all types of hip conditions and the vital signs to look out for to enable children to get the medical help they need to prevent any further issues for them later in life.\u00a0<\/span><\/p> In December 2020 when Archie was diagnosed, I was informed on the day that Archie would require surgery to alter his hip. If Archie didn\u2019t have the surgery he would be in a lot of pain and discomfort as he gets older and could potentially develop further issues. I was also informed he would be having metal work in his hip meaning that 1 year later he would require another operation to have the metal work removed. I was also told that he would be in cast for 3 months.\u00a0 His first cast would be a spica cast for 6 weeks followed by a broomstick cast for a further 6 weeks.\u00a0<\/span><\/p> Archie was booked in for his operation on February 18th 2021. It was a very stressful time as with covid Archie was having to have covid tests before going for x rays and before his operation to be certain his operation could go ahead.\u00a0<\/span><\/p> In the run-up to Archie\u2019s operation I also joined the steps charity support page on Facebook which was incredible, I received so much support from other parents going through the same or similar situations as I was with their child\/ children. I was given so much advice on how to prepare for the hospital stay and when we would get back home.\u00a0<\/span><\/p> On the day of Archie\u2019s operation we arrived at stoke hospital for 7:30 am and he went to theatre for 9am. His operation lasted a long 5 and a half hours BUT there was some really good news, it turned out Archie didn\u2019t need any metal work which was originally the plan for him! He returned to the ward very sleepy and had an epidural to help control any pain.\u00a0<\/span><\/p> In total Archie was in hospital for 4 nights, 2 of those were very hard on Archie as he experienced a lot of muscle spasms when trying to sleep which was very upsetting for him as it was causing him some discomfort and disturbing his sleep.\u00a0<\/span><\/p> The day we returned home the hospital gave us the transport to get back, Archie was in his spica cast which meant he couldn\u2019t sit in the car seat. I purchased Archie a big bean bag in the run-up to his operation which came in very useful as it enabled him to sit up as much as possible but most importantly to be comfortable.\u00a0<\/span><\/p> Originally Archie was put down for a spica chair to be loaned to him, however, the spica chairs that were tried for him just wasn\u2019t the right ones for him.\u00a0<\/span><\/p> Throughout the first 6 weeks in his spica cast Archie was his happy usual self and adapted very quickly to the cast to the point in the final two weeks he was almost army crawling on the floor in it!\u00a0<\/span><\/p> The first 6 weeks went by so Archie was back at the hospital to have his spica cast taken off in April 2021 to have his Broomstick cast put on. This meant Archie had to go under anaesthetic to have it changed as x rays needed to be carried out too. This took 2 hours and then Archie was back on the ward. When the anaesthetic wore off Archie was extremely happy to be able to sit up properly on his own in his new cast. Later that day when Archie had drank and ate we were allowed back home only this meant Archie could go in his car seat as his consultant said it was safe to do so so Archie was one very happy boy as he loves being in the car!\u00a0<\/span><\/p> When we arrived back home again Archie adapted very quickly to his new cast, Archie was able to be just that little bit more mobile on his own in his broomstick cast so he was crawling around the best he could in no time and after only a couple of weeks Archie was even standing up!\u00a0<\/span><\/p>