tag:blogger.com,1999:blog-6939318729068383326.post1536533963293300631..comments2024-03-02T09:06:00.217+00:00Comments on Musings of a 21st Century Stay At Home Mum: Undiagnosed Children's Awareness DayTwinsplustwohttp://www.blogger.com/profile/14647701493165196509noreply@blogger.comBlogger29125tag:blogger.com,1999:blog-6939318729068383326.post-36965472751616042922014-05-06T07:54:01.729+01:002014-05-06T07:54:01.729+01:00Sadly local is often "first" even more s...Sadly local is often "first" even more so with GP commissioning :(Twinsplustwohttps://www.blogger.com/profile/14647701493165196509noreply@blogger.comtag:blogger.com,1999:blog-6939318729068383326.post-7985019022264959202014-05-05T23:10:25.266+01:002014-05-05T23:10:25.266+01:00That's just ridiculous, I can't understand...That's just ridiculous, I can't understand how they are even able to do that! Surely a speciality team outranks local?<br />LM has diagnosis letters from different departments/specialities giving her different variations of 'hypermobility' and giving completely different advice as to how to treat her. The LEA's Inclusion team wouldn't do anything to help her in school until we had the HEDS dx so that's the one I'm sticking with!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6939318729068383326.post-32604422245955534382014-05-04T21:51:17.392+01:002014-05-04T21:51:17.392+01:00Thanks Jaime :) Thanks Jaime :) Twinsplustwohttps://www.blogger.com/profile/14647701493165196509noreply@blogger.comtag:blogger.com,1999:blog-6939318729068383326.post-15777161042470687012014-05-04T21:45:28.146+01:002014-05-04T21:45:28.146+01:00what a really super post my lovely and in fairness...what a really super post my lovely and in fairness if you had not shared i would have no idea about this.<br /><br />thanks for linking up with #PoLoCoJaime Oliverhttp://theoliversmadhouse.co.uk/noreply@blogger.comtag:blogger.com,1999:blog-6939318729068383326.post-46801462078134319602014-05-04T10:03:16.464+01:002014-05-04T10:03:16.464+01:00Yes there is a to of ignorance about EDS, that is ...Yes there is a to of ignorance about EDS, that is the "umbrella condition" GOSH believe we have which is causing so many problems, but local have very fixed (incorrect) ideas about EDS so have written to everyone stating we don't have it and it shouldn't be in anyone's notes!!!Twinsplustwohttps://www.blogger.com/profile/14647701493165196509noreply@blogger.comtag:blogger.com,1999:blog-6939318729068383326.post-58232695899438795372014-05-03T23:10:12.094+01:002014-05-03T23:10:12.094+01:00It isn't always even that the condition itself...It isn't always even that the condition itself is unknown, sometimes its purely that the medical professional you are seeing doesn't know about it. My daughter suffered for years crying at night in pain. She was exhausted all the time purely because she hurt. Our GP knew nothing and refused to refer us on to someone who might, he just dismissed everything. It wasn't until I spoke to a friend of a friend that things fell into place. I then had to fight tooth and nail for referrals to the right people. She was finally diagnosed with Ehlers-Danlos Syndrome-Hypermobility Type at GOSH.<br /><br />I can't believe that you couldn't have access to your son's results! My other daughter who is 13, has an hereditary type of high cholesterol(from me) and has lots of blood tests, there have never been any issues with me accessing the results #pocoloAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-6939318729068383326.post-7076190473658080732014-05-02T16:38:57.718+01:002014-05-02T16:38:57.718+01:00A nice read. I am nodding while reading this in ag...A nice read. I am nodding while reading this in agreement. I really thought that everything has a name already being it the 21st century. I am wrong. This post is an eye opener. Thanks for sharing your thoughts. They are thought provoking. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-6939318729068383326.post-42149598487001008682014-04-29T14:49:16.838+01:002014-04-29T14:49:16.838+01:00great post, thank so much for sharing xgreat post, thank so much for sharing xTigerlilly Quinnhttps://www.blogger.com/profile/13801149308851133886noreply@blogger.comtag:blogger.com,1999:blog-6939318729068383326.post-92093749881880976412014-04-28T15:46:51.956+01:002014-04-28T15:46:51.956+01:00Thankyou for the fantastic post this is very inspi...Thankyou for the fantastic post this is very inspiring xAnonymoushttps://www.blogger.com/profile/15511738712487629088noreply@blogger.comtag:blogger.com,1999:blog-6939318729068383326.post-55276888983071260312014-04-28T13:25:58.040+01:002014-04-28T13:25:58.040+01:00I think more are surviving wih complex problems me...I think more are surviving wih complex problems medical science have yet to understand, but I think medical specialities are very guilty of tunnel vision and poor communication between themselves, sometines unaware someone has wider issues. The loss of real family GPs also plays a part. The NHS has become very much crisis management rather than the holistic care which would undoubtedly help with understanding and diagnosing complex conditions. Twinsplustwohttps://www.blogger.com/profile/14647701493165196509noreply@blogger.comtag:blogger.com,1999:blog-6939318729068383326.post-12005909630676698762014-04-28T13:17:02.845+01:002014-04-28T13:17:02.845+01:00This is very interesting post. Do you think our do...This is very interesting post. Do you think our doctors are failing us? Sometimes I wonder if this is the case... or is it us who suppose to look further and search for answers...Agata Pokutyckahttps://www.blogger.com/profile/16771885577683189168noreply@blogger.comtag:blogger.com,1999:blog-6939318729068383326.post-57871585266373710052014-04-28T06:11:38.154+01:002014-04-28T06:11:38.154+01:00Great post and thanks for sharing this dayGreat post and thanks for sharing this dayKizzyhttps://www.blogger.com/profile/14935216607315750765noreply@blogger.comtag:blogger.com,1999:blog-6939318729068383326.post-70038658020716198292014-04-27T18:22:04.613+01:002014-04-27T18:22:04.613+01:00A great post that helps t shed light on people liv...A great post that helps t shed light on people living with undiagnosed illnesses, and it is ridiculous that you aren't able to get your son's blood test results! especially as he is not legally an adult until 18. xwild & grizzlyhttps://www.blogger.com/profile/11757659970211623428noreply@blogger.comtag:blogger.com,1999:blog-6939318729068383326.post-17020755468156606492014-04-26T22:05:09.803+01:002014-04-26T22:05:09.803+01:00It must be hard not having answers to what is wron...It must be hard not having answers to what is wrong with your child. If you have a diagnosis you have something to work to for treatment xHijacked by Twinshttps://www.blogger.com/profile/11178277774364275100noreply@blogger.comtag:blogger.com,1999:blog-6939318729068383326.post-64752758259816332392014-04-26T16:34:19.963+01:002014-04-26T16:34:19.963+01:00I quite agree there are times it can be complex, b...I quite agree there are times it can be complex, but then again my eldest is 18 in 3 months time and I can't see she will grow more responsible overnight! I have to trust her, and trust my relationship with her. I do think Drs should be able to over-rule with under 18s in situations such as you describe though, and also have friends with children whose special needs mean they are certainly not ready to be responsible for their own medical care at 18, and this can cause complications too. Like all areas of life there are some very grey areas contained within it aren't there!Anonymoushttps://www.blogger.com/profile/11580191273349590067noreply@blogger.comtag:blogger.com,1999:blog-6939318729068383326.post-58786306216633259572014-04-26T14:48:09.879+01:002014-04-26T14:48:09.879+01:00Great post, i definitely agrees with everyone that...Great post, i definitely agrees with everyone that children are children until they are 18 xOh So Ameliahttps://www.blogger.com/profile/07072803274528772954noreply@blogger.comtag:blogger.com,1999:blog-6939318729068383326.post-19488934437415835532014-04-26T13:54:20.636+01:002014-04-26T13:54:20.636+01:00It is surprising that so many conditions are undia...It is surprising that so many conditions are undiagnosed, but then doctors are only human and just do not know everything yet!Karahttps://www.blogger.com/profile/04913596958120846642noreply@blogger.comtag:blogger.com,1999:blog-6939318729068383326.post-22632298665931717852014-04-25T22:39:14.205+01:002014-04-25T22:39:14.205+01:00A great post, i agree too xxxxxA great post, i agree too xxxxxKeri-Annehttps://www.blogger.com/profile/01241528728749755821noreply@blogger.comtag:blogger.com,1999:blog-6939318729068383326.post-39639487401623546042014-04-25T22:32:16.459+01:002014-04-25T22:32:16.459+01:00Spot on - like others have said, children are chil...Spot on - like others have said, children are children until 18!xRebecca Smithhttps://www.blogger.com/profile/10194593085065334069noreply@blogger.comtag:blogger.com,1999:blog-6939318729068383326.post-10238049588640025252014-04-25T22:21:41.448+01:002014-04-25T22:21:41.448+01:00I never knew there was a day for it. I'm actua...I never knew there was a day for it. I'm actually quite happy with all the support we've had so far despite our son being undiagnosed, but then I think the kind of pushy parent helps with that. I still remember how much was taken away when they decided that it wasn't autism though.Pinkoddyhttp://thesensoryseeker.comnoreply@blogger.comtag:blogger.com,1999:blog-6939318729068383326.post-15603974890434660772014-04-25T22:09:26.457+01:002014-04-25T22:09:26.457+01:00great post, and I agree to, children are children ...great post, and I agree to, children are children until they're 18 xAnonymoushttps://www.blogger.com/profile/06309815229103285726noreply@blogger.comtag:blogger.com,1999:blog-6939318729068383326.post-26626157885172437622014-04-25T21:27:36.943+01:002014-04-25T21:27:36.943+01:00Thank you for following the links :) Thing is - wi...Thank you for following the links :) Thing is - with older teens, I see your point, but it assumes they will be sensible and proactive about their medical care. if your child has a life threatening heart condition and they don't bother to collect their results, or involve you then it can be rather tricky....Twinsplustwohttps://www.blogger.com/profile/14647701493165196509noreply@blogger.comtag:blogger.com,1999:blog-6939318729068383326.post-29671761733314283622014-04-25T21:23:21.047+01:002014-04-25T21:23:21.047+01:00The welcome to holland essay and the video are bot...The welcome to holland essay and the video are both amazing and moving. It must be so difficult, but as you say the reward is your lovely children. I am not sure I completely agree re the age medical thing- I do think there are good reasons why older teens need privacy in their medical treatment at times, but there should be flexibility within that allowing parents full involvement where the child needs/consents.Anonymoushttps://www.blogger.com/profile/11580191273349590067noreply@blogger.comtag:blogger.com,1999:blog-6939318729068383326.post-44392785710839287982014-04-25T21:09:50.559+01:002014-04-25T21:09:50.559+01:00I agree, children need to be children whatever oth...I agree, children need to be children whatever other problems they have to face.Jennyhttp://treadingonlego.comnoreply@blogger.comtag:blogger.com,1999:blog-6939318729068383326.post-32196513541721373092014-04-25T20:59:33.239+01:002014-04-25T20:59:33.239+01:00Oh I so agree with you on this - in my eyes, they&...Oh I so agree with you on this - in my eyes, they're still children up to the age of at least 18. Even further if they're not mature. Every child is an individual and they should be allowed to have fun and not responsibility pushed onto them. Loved the video, was fab xStephs Two Girlshttps://www.blogger.com/profile/09592292485187553690noreply@blogger.com