Could my son's other problems be related to his Erb's Palsy?
Posted: Sat Dec 07, 2013 8:25 am
Hi everyone, I'm Kathy and I live in the UK with my hisbamd and our 3 children. Our oldest is 18 and has a right soded Erb's Palsy.
A bit about the birth. My sister gave birth to her son (due after mine) a couple of weeks before me and had to have an emergency section as her pelvis wasn't wide enough for normal delivery. My midwife suspected the same for me and as I went overdue I was given sizing scans and from them and how overdue I was getting (at that point 43 weeks gestation) I was booked in for an elective section. When I came into hospital though the doctor said I was a teenager and should "fire one out" and I was sent home to wait. At 45 weeks my waters broke and I went into a very slow labour. I failed to progress and was given oxytocin but the labour lasted 18.5 hours, with a five hour second stage. Midwife asked doc to give me an emergency section and I was refused again. We then had a shoulder dystocia and he had the cord round his neck. I was very ill afterwards and awoke the next morning to seven doctors around his cot muttering about cerebral palsy. This however wasn't the diagnosis and the lead doctor just said "Your son has an Erb's Palsy" and walked away. A week later I was told that he would recover totally if it was left alone, but my dad and I had done some reading and knew he needed to see a specialist. We saw Simon Kay at St James' in Leeds and Chris had (by then 3 months old) immediate surgery to release scar tissue from the nerves. At 2 years old and five years old he had subscap releases. He was discharged when he was ten.
At the age of 3 Chris had a terrible fall from a slide at nursery and the next day started having ataxic seizures. That first day he had 17. A CAT scan didn't show any signs of recent injury and so the paediatricians said the fall was not the cause (we've always believed it was). He went on epilepsy meds and then at five and a half was removed slowly from them with no further seizures.
However, from being young, Chris has had tremors in both hands, which have got worse over the years and while they are worse when trying to draw etc (intention tremors) are not gone when he is not, if that makes sense. It is effecting his capabilities college and career wise as he is very artistic. He really wanted to be a tattooist but obviously can't. So he is studying photography and loving it. His pictures are nearly always a little wonky because of his arm and his tremors aren't helping but he has a real talent.
He also gets neurological pain in his legs for no reason and some tightness but not cramping.
A friend who works in the NHS mentioned in passing that Erb's Palsy came under the umbrella of cerebral palsy on some information she read and it got me thinking about any link and also wondering if anyone else's child has gone on to have these issues?
He is waiting for a neurology referral and we are toying with the idea of going back to Simon Kay but haven't so far as it is not specifically a hand surgery issue (which is his field) despite him being the leading expert in this country on Erb's Palsy. However his current GP is very dismissive saying if Chris really wanted to draw he would "relax a bit" and get on with it and saying his leg pain is "probably just growing pains" despite it making him stumble in agony. He gave him ibuprofen and sent him packing.
So we are changing GPs and that is taking a while, so we thought we would ask around and get some viewpoints from others with an Erb's Palsy in the meantime.
Thanks for reading, we'd really appreciate any of your thoughts on this!
A bit about the birth. My sister gave birth to her son (due after mine) a couple of weeks before me and had to have an emergency section as her pelvis wasn't wide enough for normal delivery. My midwife suspected the same for me and as I went overdue I was given sizing scans and from them and how overdue I was getting (at that point 43 weeks gestation) I was booked in for an elective section. When I came into hospital though the doctor said I was a teenager and should "fire one out" and I was sent home to wait. At 45 weeks my waters broke and I went into a very slow labour. I failed to progress and was given oxytocin but the labour lasted 18.5 hours, with a five hour second stage. Midwife asked doc to give me an emergency section and I was refused again. We then had a shoulder dystocia and he had the cord round his neck. I was very ill afterwards and awoke the next morning to seven doctors around his cot muttering about cerebral palsy. This however wasn't the diagnosis and the lead doctor just said "Your son has an Erb's Palsy" and walked away. A week later I was told that he would recover totally if it was left alone, but my dad and I had done some reading and knew he needed to see a specialist. We saw Simon Kay at St James' in Leeds and Chris had (by then 3 months old) immediate surgery to release scar tissue from the nerves. At 2 years old and five years old he had subscap releases. He was discharged when he was ten.
At the age of 3 Chris had a terrible fall from a slide at nursery and the next day started having ataxic seizures. That first day he had 17. A CAT scan didn't show any signs of recent injury and so the paediatricians said the fall was not the cause (we've always believed it was). He went on epilepsy meds and then at five and a half was removed slowly from them with no further seizures.
However, from being young, Chris has had tremors in both hands, which have got worse over the years and while they are worse when trying to draw etc (intention tremors) are not gone when he is not, if that makes sense. It is effecting his capabilities college and career wise as he is very artistic. He really wanted to be a tattooist but obviously can't. So he is studying photography and loving it. His pictures are nearly always a little wonky because of his arm and his tremors aren't helping but he has a real talent.
He also gets neurological pain in his legs for no reason and some tightness but not cramping.
A friend who works in the NHS mentioned in passing that Erb's Palsy came under the umbrella of cerebral palsy on some information she read and it got me thinking about any link and also wondering if anyone else's child has gone on to have these issues?
He is waiting for a neurology referral and we are toying with the idea of going back to Simon Kay but haven't so far as it is not specifically a hand surgery issue (which is his field) despite him being the leading expert in this country on Erb's Palsy. However his current GP is very dismissive saying if Chris really wanted to draw he would "relax a bit" and get on with it and saying his leg pain is "probably just growing pains" despite it making him stumble in agony. He gave him ibuprofen and sent him packing.
So we are changing GPs and that is taking a while, so we thought we would ask around and get some viewpoints from others with an Erb's Palsy in the meantime.
Thanks for reading, we'd really appreciate any of your thoughts on this!
My days of writing and holding a pen and drawing are gone. But then again stop trying Never 
He doing a Great Job!!! and so are you trying to help your son, There is nothing like Tenacity it sure beats depression