I’m not sure any of us was quite ready for it, but my daughter shared some knowledge with us at breakfast-time today.
My six-year-old boy was just pulling his pants up after visiting the toilet. We’d been treated to the sound of him weeing for an unfeasibly long time after he'd left the door wide open in a “Were you born in a barn?” kind of way, before he padded back into the lounge and announced his willy was “sticking out like it had a bone sinking into it”.
This was the opportunity his sister seemed to have been waiting for. She was all about the willy facts: ““Oh, yes, that’s quite normal,” she told her brother, in a sage-like voice. “Boys get that, you know, especially when they’re teenagers.”
My boy looked startled, and a little impressed that his big sister seemed to know what had been going on in teeny todger territory. And she was ultra keen to expand upon her knowledge of his expansion (obviously having paid very close attention in her recent Personal, Social and Health Education lessons).
“Yes, you’ll find that you’ll be making seeds for the eggs and you’ll have sperm come out of your willy in your bed at night.”
I nearly choked on my cornflakes. My boy looked down at his pants frontage with amazement.
I baled. “Time for school, everyone! Quick, quick, no time to talk, we’ll be late!”
This is a post I sent to PWSA UK recently.Don't know if you've seen it, but I hope you make use of their medic alert info:sheet,just in case your girl has to go into hospital in the future.XX
Hi folks.I know I don't comment often on this page, or get to conferences these days, but I need to give carers of teens and adults with PWS a heads-up about an experience my family had in hospital recently.
My girl was asked to go to hospital as a result of a blood test.Can we get there within the hour? Yes-gosh, must be a bit of an emergency we thought.This is the day before Good Friday, April 2nd. I'd taken a urine sample to the GP because it was dark brown. Then she went yellow. VERY yellow. Got into hospital and the questions were "have you vomited?" and "have you got any pain?"and "has she had a temperature?". As you can imagine ,we tried to explain to not one,two,or three subsequent docs that those diagnostic criteria will not be useful ,as the patient has PWS. My daughter had IV antibiotics ,but they didn't operate till 17th April. Just before the op: a nurse asked us to save a urine sample to test for pregnancy......Yes, you read that correctly.The trolley they sent to the ward was too high for her to get on.It would have been a french farce if it hadn't been so distressing . An hour into the op: the surgeon phoned the ward needing to speak to us urgently....The endoscopy wasn't enough to get through all the built-up muck backed up behind a gallstone in her bile duct.They asked to do a laporoscopy at the same time."Of course, do whatever you have to" we said.Panic over. On ICU later,we were denied admission for a while"because the doctor was with her"-just the time,you might think, that we needed to be there.We did ask if they had a policy regarding vulnerable adults and they looked a little nonplussed. After a few hours we asked if our daughter could have her regular prescribed medicines for neurological pain and those for psychosis and were told nobody was allowed to have anything by mouth as they might vomit.Having explained comprehensively why this was unlikely, the same reason was given.I'm afraid to say I lost the plot at this point and said "you're not listening are you?",rather loudly.We were treated like visiting distant relations rather than hands-on parent-carers with 24 years of experience. We see social services (adult L.D.team) and Learning disability hospital liaison together on monday . Our girl will still have to go back here to have her gall bladder removed .I've downloaded the PWSA(USA) medical emergency info: and put them into her notes for next time. You know your child best .You have all the experience living with PWS that the medics don't have.Please be aware that this may occur when your child becomes an adult, and nobody in the hospital has heard of PWS. Even if you are there, it can be an uphill struggle to be treated like someone they should liaise with ,rather than an anxious parent . Having seen the face of the surgeon when I said that people with PWS can be very prone to necrosis, and the amount of brown gunge that drained out of my child in the 2 days since the operation, I'm in no doubt that sepsis /peritonitis was a real possibility. I know that's a long story, but I hope it it makes everyone else aware of what can happen when diagnoses are not straightforward.
I’m not sure any of us was quite ready for it, but my daughter shared some knowledge with us at breakfast-time today.
"Pants frontage" hahahahaha.
ReplyDeleteBath nights are about to get a whole lot more interesting, me thinks.
ReplyDeleteThis is a post I sent to PWSA UK recently.Don't know if you've seen it, but I hope you make use of their medic alert info:sheet,just in case your girl has to go into hospital in the future.XX
ReplyDeleteHi folks.I know I don't comment often on this page, or get to conferences these days, but I need to give carers of teens and adults with PWS a heads-up about an experience my family had in hospital recently.
My girl was asked to go to hospital as a result of a blood test.Can we get there within the hour? Yes-gosh, must be a bit of an emergency we thought.This is the day before Good Friday, April 2nd.
I'd taken a urine sample to the GP because it was dark brown.
Then she went yellow. VERY yellow.
Got into hospital and the questions were "have you vomited?" and "have you got any pain?"and "has she had a temperature?".
As you can imagine ,we tried to explain to not one,two,or three subsequent docs that those diagnostic criteria will not be useful ,as the patient has PWS.
My daughter had IV antibiotics ,but they didn't operate till 17th April.
Just before the op: a nurse asked us to save a urine sample to test for pregnancy......Yes, you read that correctly.The trolley they sent to the ward was too high for her to get on.It would have been a french farce if it hadn't been so distressing .
An hour into the op: the surgeon phoned the ward needing to speak to us urgently....The endoscopy wasn't enough to get through all the built-up muck backed up behind a gallstone in her bile duct.They asked to do a laporoscopy at the same time."Of course, do whatever you have to" we said.Panic over.
On ICU later,we were denied admission for a while"because the doctor was with her"-just the time,you might think, that we needed to be there.We did ask if they had a policy regarding vulnerable adults and they looked a little nonplussed.
After a few hours we asked if our daughter could have her regular prescribed medicines for neurological pain and those for psychosis and were told nobody was allowed to have anything by mouth as they might vomit.Having explained comprehensively why this was unlikely, the same reason was given.I'm afraid to say I lost the plot at this point and said "you're not listening are you?",rather loudly.We were treated like visiting distant relations rather than hands-on parent-carers with 24 years of experience.
We see social services (adult L.D.team) and Learning disability hospital liaison together on monday .
Our girl will still have to go back here to have her gall bladder removed .I've downloaded the PWSA(USA) medical emergency info: and put them into her notes for next time.
You know your child best .You have all the experience living with PWS that the medics don't have.Please be aware that this may occur when your child becomes an adult, and nobody in the hospital has heard of PWS.
Even if you are there, it can be an uphill struggle to be treated like someone they should liaise with ,rather than an anxious parent .
Having seen the face of the surgeon when I said that people with PWS can be very prone to necrosis, and the amount of brown gunge that drained out of my child in the 2 days since the operation, I'm in no doubt that sepsis /peritonitis was a real possibility.
I know that's a long story, but I hope it it makes everyone else aware of what can happen when diagnoses are not straightforward.