My special lil boy is scheduled for surgery on the 18th, to correct a hydrocele testis. Don't know if you have heard of it, but it is basically a sac of fluid around his right testicle. Sometimes when the testes drop from the abdomen the channel remains open and the fluid flows between his testicle and abdomen, so they have to surgically close the hole. It is a short outpatient surgery.
Anyway, Thursday was his pre-op check. As part of the talk, they ask if he has other health problems or areas of concern. Of course I have concerns, I have had concerns since he was about 6 weeks old.
So I went over all the things I have told my GP about many times, the little things I mentioned to the Health Visitor, the things I was told were nothing. At about 6 weeks, we noticed his head tilted to the left, the right side of his neck seemed stiff. As the months went by we noticed he leaned to the left when he was sat reclined in his seat or swing. When he was learning to sit up, he had trouble because he leaned and fell over. His whole right side seemed stiffer than the left. I told all these concerns to my GP, and they said it was nothing, every child goes at their own rate. When I expressed concern to the HV that he was already left handed at 8-months, she said it ran in families, and was normal since I have a left handed child already. But I read it was rare to show a preference before one year old, so I didn't quite believe her.
As he got older we noticed more... he holds his right hand clenched in a fist, has always been left handed, doesnt use his right hand much at all... when he crawled, he did a funny one-legged crawl... when he learned to walk he walks awkward, swinging his left arm but keeping the right curled up at his side. He walks more on his tippy toes on his right foot, I can tell a difference by how his right shoe is always scuffed, but the left is fine... I went over all the little things my GP has said are nothing.
I even mentioned that I was concerned about mild cerebral palsy, which my GP had said it wasn't, but I had looked it up, and it seemed to fit all those little things. I think deep down I didn't push it further with the GP because I was afraid to find out.
So we discussed and she listened, finally I was taken seriously. She asked if I would mind waiting a minute while she went and checked something, and when she came back she said she had gotten us an unofficial visit with the head paediatric consultant, who she said is the best of the best. We were so lucky he had a few minutes to spare, under the guise that we were checking to make sure he was fit for surgery.
He examined my little guy as thouroghly as the unoffical 10 minutes would allow, and said I was right to be concerned. He thinks it is mostly likely congenital hemiplegia. In case you need an explanation, congenital hemiplegia is the most common form of cerebral palsy in children born at term, and perinatal stroke is the number one cause. The prevalence of congenital hemiplegia is estimated to be about 1 in 1000 live births. It usually affects the right side, and two thirds of those diagnosed are boys.
They are writing to my GP so I can have an official referral, we need to have him tested officially, he needs an MRI and everything. We found out as we left that the nurse caring for us has a son with motor difficulties, so she recognised some of the concerns I had and knew they were valid. She said if the consultant had been busy, she would have phoned my GP herself, she couldn't let us walk out of there without doing something. She is a true heroine, I am so grateful the NHS still has people like her.
I am half relieved that I was finally validated, and half shocked by the reality that there is really something wrong with my baby. I want to cry, but I need to be strong. I remind myself nothing has changed, but now he will be able to get the help he needs. Its so tough.
So I went over all the things I have told my GP about many times, the little things I mentioned to the Health Visitor, the things I was told were nothing. At about 6 weeks, we noticed his head tilted to the left, the right side of his neck seemed stiff. As the months went by we noticed he leaned to the left when he was sat reclined in his seat or swing. When he was learning to sit up, he had trouble because he leaned and fell over. His whole right side seemed stiffer than the left. I told all these concerns to my GP, and they said it was nothing, every child goes at their own rate. When I expressed concern to the HV that he was already left handed at 8-months, she said it ran in families, and was normal since I have a left handed child already. But I read it was rare to show a preference before one year old, so I didn't quite believe her.
As he got older we noticed more... he holds his right hand clenched in a fist, has always been left handed, doesnt use his right hand much at all... when he crawled, he did a funny one-legged crawl... when he learned to walk he walks awkward, swinging his left arm but keeping the right curled up at his side. He walks more on his tippy toes on his right foot, I can tell a difference by how his right shoe is always scuffed, but the left is fine... I went over all the little things my GP has said are nothing.
I even mentioned that I was concerned about mild cerebral palsy, which my GP had said it wasn't, but I had looked it up, and it seemed to fit all those little things. I think deep down I didn't push it further with the GP because I was afraid to find out.
So we discussed and she listened, finally I was taken seriously. She asked if I would mind waiting a minute while she went and checked something, and when she came back she said she had gotten us an unofficial visit with the head paediatric consultant, who she said is the best of the best. We were so lucky he had a few minutes to spare, under the guise that we were checking to make sure he was fit for surgery.
He examined my little guy as thouroghly as the unoffical 10 minutes would allow, and said I was right to be concerned. He thinks it is mostly likely congenital hemiplegia. In case you need an explanation, congenital hemiplegia is the most common form of cerebral palsy in children born at term, and perinatal stroke is the number one cause. The prevalence of congenital hemiplegia is estimated to be about 1 in 1000 live births. It usually affects the right side, and two thirds of those diagnosed are boys.
They are writing to my GP so I can have an official referral, we need to have him tested officially, he needs an MRI and everything. We found out as we left that the nurse caring for us has a son with motor difficulties, so she recognised some of the concerns I had and knew they were valid. She said if the consultant had been busy, she would have phoned my GP herself, she couldn't let us walk out of there without doing something. She is a true heroine, I am so grateful the NHS still has people like her.
I am half relieved that I was finally validated, and half shocked by the reality that there is really something wrong with my baby. I want to cry, but I need to be strong. I remind myself nothing has changed, but now he will be able to get the help he needs. Its so tough.
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