I'm dad to a once bubbly, challenging, into everything daughter who has had the worst 12 months anyone should have to suffer.
Preaching to the converted here I know so just wanted to say be strong to all the parents (I'm not pc so please fill in any currently appropriate 'other carer' job title). To the sufferers, especially the children, (and yes my baby may be 18 but she is still my child so will always fall into that category!) please bare with us old folk who grew up talking to our friends, watching telly 'live' and had to actually write a letter to our pen pals to fill them in on today's gossip. We are from a World where policemen, teachers and DOCTORS were the learned people who we simply did not challenge.
It has taken me the best part of 9 months to support my daughter properly as I could not process the possibility that the scientists may be wrong (actually they are still to learn about her condition but maybe don't know it just yet!).
Not sure how common our family life experience is to the rest of you, but it has been THE most stress I have ever had to cope with, I think mainly because my daughter's condition does not fit nicely into a labelling box. We argue about toilet paper for goodness sake....regularly!!
I cried today in public (and feel myself welling up now to be honest) as a 52 year old man. Never felt better as we have a dart board on the wall and our surgeon is throwing some darts at something to rather than more tests "by exclusion". [I rang the surgeon two weeks ago with a thought to ask him to cancel a planned laparoscopy but bottled it at the last moment. He actually apologised to my daughter today for "having to put her through" some old medicine to get to where we are now, a place of looking forward and working a plan.
Waffle waffle so much to say and ran out of words! What I think I wanted to say is...
TRUST THE ONES YOU LOVE, even when you want to yell at them!
You know each other better than any qualified professional. Don't be rude, but do be firm when you have something to say.
Most of our medical professionals are under stupid amounts of pressure to tick their boxes, If you are firm, they will listen and it is important to get to someone on board with this new science we are all experiencing!
GOOD LUCK, off for a lie down!
Written by
mickyd2406
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Hi Micky, I am so glad your daughter has you to advocate for her. So many women are ignored or dismissed by doctors, and it isn't just male doctors; in addition to medical uncertainty, and lack of medical education in some conditions, we also have a lot of misogyny too. Keep up the good work!
Hello Micky. I know some of where you're coming from. Stay strong and keep pushing for what's best for your daughter. I found taking one day at a time helped me cope. Looking at the journey ahead made it so big in my mind I felt I wouldn't cope.
You are stronger than you realize. Best wishes to your daughter, yourself and your family.
It is a bizarre feeling, but knowing that others are going through similar does help! Our other child is Asbergers (and through his diagnosis it is pretty sure I am too!) so I need logic and solutions which in this sphere are never really there so I am learning fast, even at my ripe old age!
My daughter has Aspergers too so I understand this condition well. Does your daughter have Eds? The reason why I'm asking is, I'm in the medical profession so when I look up things I look at research papers particularly and it appears that there are scientists who are studying a possible link between EDS and autism as we speak. Some of the symptoms a person with autism may have, such as muscle weaknesses, hypersensory ability, and a few other symptoms appear in both conditions. The problem with EDS is the lack of clear information on the internet for us and the lack of knowledge in regards to some doctors.
You're doing a great job. It is hard at times but I can tell by what you've already said you have a good head on your shoulders. Talking it out can help ease the pressure on you.
yep, so my daughter has hEDS and "probably" Mast Cell Activation Syndrome (MCAS). She has been vomiting for a year now and has lost 6 stone in weight! There may be a rumination syndrome diagnosis thrown in for good measure, which suggests to me some neuro pathway stuff going on.
Interestingly my son had to change school through severe bullying and he threw up for about three months, we assumed anxiety based. He is 14 and occasionally throws up for no "reason". He also suffers from "IBS-like" stuff.
To my mind this is new science and people are naturally "lazy" and draw the easiest conclusions to their own life experience (eg. the Gastro wards looking tilty headed at her saying eating disorder etc) , we make things "fit" what we think we know! My daughter is now under Dr Siddiqi who talks a lot of sense (or is it just what I want to hear, who knows?), but he has told my wife and I to forget anything we think we know through the process. We must start afresh and build Morgan's individual set of 'data'.
Very interested to hear the possible link between autism and EDS though.
Thank you. With a good doctor and with working through what works and what doesn't she'll improve. There's no rule book with this condition. Everyone is so different.
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Seeking a Diagnosis (Cont...)
Local medics or NHS assuming EDS is only a MH condition
Great Ormond Street
Diagnosis?
Uk private health insurance - worth it or not?