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fobbed off for too long!
im a newbie so no one will no what my poor little girl has been through! she is only nine months old but has been through a lot.
when she was born i noticed quickly that she held her breath for long periods of time sometimes even prompting us to rub her chest in order for her to start breathing again. despite mentioning it to health visitors community midwives and doctors all said that she would grow out of it. at three months old she stopped breathing in the night, thankfully i was alerted by a matress sensor that i had bought before she was born. she needed prompting to breath again. and after taking her to a&e we were kept in over night where she was monitored. during the night her oxygen dropped to 80% and her heartrate was not far behind. i could find no nurses anywhere on the ward and after a horrific 15minutes her obs got back to normal! the doctor refused to believe me and took her off the machine and put her on an apnea monitor instead, which would alarm if no movement was detected after 20 seconds. we were discharged the next day without so much as an explanation to why she had stopped breathing. nearly 5months down the line she stopped again during the night...twice. and in the days that followed had several episodes in her pushchair during the day. my gp had a 2week waiting list and my locla walk in centre put the phone down on me refusing to see her so all that was left was a&e. thankfully they saw the problem and we were referred to a consultant, who reffered us for a sleep study.
she had the study last night and again she went on an apnea monitor which was set to 10seconds as well as another monitor a microphone and cameras around the room! she fell asleep at 10pm and by 2am the apnea monitor had alarmed 34 times. the nurse came in as altered the setting so it would go off after 20seconds of no movement thankfully we got some sleep after that! i cannot believe this has gone on so long and never again is a doctor going to tell me something isn't wrong! we go back on the 30th of june for the sleep study results, too long really!!
any support or advice would be amazing right now, this condition is ruining our lives!!
when she was born i noticed quickly that she held her breath for long periods of time sometimes even prompting us to rub her chest in order for her to start breathing again. despite mentioning it to health visitors community midwives and doctors all said that she would grow out of it. at three months old she stopped breathing in the night, thankfully i was alerted by a matress sensor that i had bought before she was born. she needed prompting to breath again. and after taking her to a&e we were kept in over night where she was monitored. during the night her oxygen dropped to 80% and her heartrate was not far behind. i could find no nurses anywhere on the ward and after a horrific 15minutes her obs got back to normal! the doctor refused to believe me and took her off the machine and put her on an apnea monitor instead, which would alarm if no movement was detected after 20 seconds. we were discharged the next day without so much as an explanation to why she had stopped breathing. nearly 5months down the line she stopped again during the night...twice. and in the days that followed had several episodes in her pushchair during the day. my gp had a 2week waiting list and my locla walk in centre put the phone down on me refusing to see her so all that was left was a&e. thankfully they saw the problem and we were referred to a consultant, who reffered us for a sleep study.
she had the study last night and again she went on an apnea monitor which was set to 10seconds as well as another monitor a microphone and cameras around the room! she fell asleep at 10pm and by 2am the apnea monitor had alarmed 34 times. the nurse came in as altered the setting so it would go off after 20seconds of no movement thankfully we got some sleep after that! i cannot believe this has gone on so long and never again is a doctor going to tell me something isn't wrong! we go back on the 30th of june for the sleep study results, too long really!!
any support or advice would be amazing right now, this condition is ruining our lives!!
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Replies
I am glad that she is now getting a sleep study and it must feel like such a long wait until you get the results.
I am glad you got the sensor mat for her, it has probably helped save her life.
A friend of mine, her son was also stooping breathing, but they found out, after his mum fought hard to get him seen and her believed, that it was his andnoids(sp).
He got an operation to get them removed, and I think he got his tonsils out too. Now he is fine, and he had his operation about 2 months ago.
Keep us updated.
Not sure if all regions are the same but locally our NHS complaints department is refered to as PALS. Stands for something to do with patient liason. My mum used to work for NHS and she swears by them after having a bit of shoddy treatment herself. Once she'd made her complaint official it shoved a rocket up their bum a bit because they had to cover themselves for a complaint investigation. She also told me before that they can't refuse to refer you, but they can put you at the back of a long list. If they say they can't do anything you want in future and don't have a good reason insist on it and register a complaint.
Well done on persisting. I find it can be really daunting when NHS officals tell you your wrong when it comes to your own child even though you know you're right. We've just had Mia at a speech assesment yesertday even though I was told it was pointless as she isn't old enough to know something is wrong with her speech. Half hour later we are told we'll get another appointment because she does need to go back.
No one will ever know your kids better then you. You keep at them. Hope things get better soon. Big hugs to you both. You're very brave. x
I wonder what the outcome of this was ... did anyone get any news? What a terrible thing to happen.