Can cerebral palsy be mistakenly diagnosed?

[oncewasawarrior]

About 2 years ago when my son was 4 I took him to the doctors. He wobbled and fell over all the time, ran with a very peculiar lopsided gait when he got tired (often turning “sideways” and leading with his stronger side), his hamstrings and tendons on one leg were tight and general muscle strength was low. I showed the doc a video of him running and he referred him straight away. The specialist we saw reviewed my notes and watched him, and diagnosed very mild cerebral palsy. DS was a VLBW (very low birth weight) baby, as my uterine artery failed when I was pregnant. Whilst pregnant I was told to prepare for lots of possible outcomes, including learning delay and cerebral palsy. DS was born tiny but went to the 50th centile in 6 months and has stayed there for weight and height ever since. He’s also bright so until this diagnosis we thought we’d been very lucky.

DS was sent for physio as his main problem was right side weakness. It was also recommended that he play lots of sport. We’ve been doing the exercises (daily) and lots of sport (at least an hour a day) for nearly 2 years now, and TBH I think perhaps a mistake has been made. DS is fine. He’s a good football player now (junior team), a reasonable tennis player and completes junior parkrun every week coming bang in the middle of what’s expected for his age group. He doesn’t get tired anymore and absolutely no one who sees him now can see any problem. When I mention the diagnosis to people as he belts past they look at me like I’m mad.

My question is: could a mistake have been made? I think the doctor looked at wobbly DS and the fact that everyone assumed he would have problems after birth, and jumped to an easy conclusion, helped by the fact that my health insurance paid for everything so I wasn’t taking up NHS resources. I think DS could just have been a bit slower developing coordination and strength possibly caused by his VLBW status but the exercises and the sport have obviously worked really well. I feel a complete fraud having this diagnosis on his record and in fact think this could have a negative impact on him. His startled PE teacher had to come and have a bizarre chat to me as it showed up on his school record.

My question is- is it possible a mistake was made? Should I go and get him re-assessed? I’m obviously planning on keeping a close eye on him and maintaining all the exercise. (In fact, all the obsessive taking him to do sport has meant that in a family of sedentary readers we now have a sports mad child!) I just think it’ll cause issues later on if he has to keep declaring it on forms etc. Finally, am I deluding myself and could problems come again later on in life?

Mistakes can be made, but it sounds like your DS had clinical symptoms of CP (lurching to one side and weakness), you had a convincing cause of his CP (uterine artery failure) and he had clinical signs of CP (tight hamstrings and low muscle strength on one side). The fact that it was diagnosed as mild CP is relevant, because it explains why your efforts to overcome it have been successful. The fact that you have given him great therapy doesn't stop his condition being so, it just means that you've taken it seriously and worked hard! If you stopped, you'd find that his hamstrings would stiffen, his muscles would weaken and he'd start lurching to one side again.

In short, his CP is there, you've got it under control, but it doesn't go away. It isn't doing any harm on that piece of paper. What harm can it do?

lougle thanks for your measured and well thought out response. If I'm honest it's not what I wanted to hear but deep down I know you're probably correct. I suppose I was hoping that we could just forget all about it and DS would be fine going forward.
It's just it needs to be declared on every form we complete for holiday clubs and sports courses and school admissions and it's frustrating as it isn't impacting him at all (except negatively when it causes people to make assumptions about what he can do.) I have to have endless phone calls explaining that he won't need support to participate in school swimming!

I plan to carry on getting him out and about exercising. I'll not mention it again in school and to friends and family and see if we can just quietly remember it's a "thing" but not make it a "thing" IYSWIM....
On the positive side, DS's genetic inheritance is that of two quietly tea drinking sloths, so this has forced us as a family into getting out and about. We now all have bikes and do park runs together and understand the offside rule and are members of a tennis club. DH and I lost 4 stone between us since the diagnosis.... We'll keep on running...,

I don't know really I am no expert but DS was diagnosed with dyspraxia, and had developmental delays that can occasionally be similar to mild cerebral palsy (some experts say that dyspraxia is a form of cerebral palsy). This includes late sitting up/walking/very late talking, late potty training, low muscle tone, hypermobility in some joints, stiffness in other joints, difficulty with balance, coordination, etc.

He is now 10 and is a good runner, plays football and cricket, can swim, learned to ride a bike relatively easily, has excellent balance, good hand-eye coordination. But we did work hard on it as you did, we used a balance board a lot, took him to loads of swimming lessons, encouraged him to walk a lot and to do competitive sport, and of course he had lots of speech therapy (he was diagnosed also with verbal dyspraxia).

People (including his teachers) now tell me that they see absolutely no difference between him and other children his age. He came off the SEN list at school in year 3.

I do think that in some cases, not all obviously, in a case of mild developmental issues, children's brains learn to compensate for the area that may be damaged, and their bodies learn to adapt.

All the exercises will have helped. He sounds like he is doing amazingly.

Twofishfingers That's interesting... DS was late walking, talking and potty training was a nightmare. He also had some speech therapy as he was a delayed talker, although this was later blamed on his glue ear.

I do know that SOMETHING wasn't quite right with him but I suppose my hope is that it won't trouble him too much as he goes into adulthood. He's such a delight with the enthusiasm he shows for sport, even when he's not great at it or it was challenging... what I'm thinking is that we just need to continue with exercising all his muscles including the brain!

I have CP and I have been known to support parents of newly diagnosed kids (mostly online). Two of the kids I know of were misdiagnosed with CP but in both cases it was actually a case that they turned out to have more severe, degenerative conditions. I don't know of anyone who turned out to have nothing.

It sounds like your son is doing great thanks to all the physio etc you do. And it might be worth going back to the medics for assessment just to see if there's anything else or different you could be doing to help (I am surprised you aren't under a yearly consultant check or similar; I was until I hit my mid teens).

It does make me very uncomfortable hear you suggest not telling people. I get that people make assumptions when they hear the diagnosis, I experience that too but he needs to know that he has CP, what it is and what it means. It's a part of him and that shouldn't be hidden.

Thehatofdoom
Thank you- very insightful. We did have a check a year ago- message was "carry on doing what you're doing". In fact it was something the consultant said that got me thinking about misdiagnosis as he was startled at the lack of any symptoms... He wasn't the same doc we saw first and did question me about the initial diagnosis process. We're (overdue) another one one now, but have been having 6 monthly physio sessions via my healthcare to learn new techniques

I'm not ashamed of the CP- however I'm a bit embarrassed when people look at him and you can tell that they don't believe me! It makes me feel like a bit of a drama queen and I worry that in school and clubs it's taking resource and head space away from children who need more support.

Same as Doom. I've heard of misdiagnoses but only when the real problem is something worse. Clearly that's not the case w your son.

I used to fence (the sport not the thing in the garden) with a woman who has mild spina bifida. She totally widened my "picture" of what spina bifida was. So yes, people have pre conceptions but these can easily be changed.