Registered: 1369949641 Posts: 1,738
Reply with quote #1
So here is an e-mail I sent to one of the clinicians I connect with in Aussie
s there any value of parental intuition, mother’s intuition, father’s intuition regarding early identification of an eating disorder and early identification of relapse? Has anyone ever done research to identify whether parental intuition gave an earlier diagnosis than what the medicos were able to diagnose? Kind of like that human sixth sense about one’s child? Especially a mother’s sixth & even seventh sense? We have all sorts of medical tools, instruments, guidelines, protocols etc to diagnose illness. But as humans we all have eyes, ears, sense of touch/feel/smell and that spidey sixth sense of intuition. For those with a sensory impairment the others become heightened. So are parents better at spotting the early signs of an eating disorder or is that better done by clinicians??? Are they better at spotting relapse?? Is this good thinking or just dumb Dad thinking? Here is the reply (edited slightly for anonymity)
So go with your instinct & intuition
There is absolutely no data on that—probably because it is impossible to measure. But as a parent with a good nose and eyes in the back of her head for all sorts of things, I hint we can detect things earlier than any diagnostic instrument could—it is really a matter of pattern recognition. Parents have a lot more data to go on than a health care professional who sees a kid once or twice. The way to go about it is encouraging providers to “listen to parents” instead of dismissing them as over vigilant or overprotective or whatever. Same thing spouses—XX has seasonal affective disorder and I could always tell (even before he could) when depression was starting to set in—all about pattern recognition! __________________ ED Dad
Registered: 1368575859 Posts: 1,078
Reply with quote #2
I think this is so true! I use the term "spidey sense" all the time now....and it just seems to apply so well.
__________________ D, age 17, first diagnosed March 20, 2013, RAN, at age 13 Hospitalized 3 weeks for medical stability. FBT at home since. UCSD Multi-family Intensive June 2015. We've arrived on the other side. :-)
Registered: 1284535839 Posts: 3,153
Reply with quote #3
Toothfairy, unfortunately your experience is not unusual. So many people report this. I didn't have this trouble with my D, in part because I so rarely take her to the GP. I had noticed something off for around two months, and had noticed weight loss and exercise. Still not thinking ED I pushed her to stop losing weight and to eat more - of course a pointless idea in retrospect. I still can remember the night it hit me like a freight train, realising what was wrong.
It is for all these stories that CEED in Victoria set up http://www.feedyourinstinct.com.au/ The goal of course is to encourage parents to trust their spidey sense, and to help GP's recognise what they may not be thinking about. __________________ D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
Registered: 1490093576 Posts: 11
Reply with quote #4
I have found my intuition or ED Radar definitely works well and I trust it. I now know what to look for, a slight drop in mood, or irritability or a slight hint of wanting to change the meal program. I can always sense when our D is 'off'. She also starts to become not as communicative. I can then start asking her gently 'what's happening, I'm sensing things aren't quite right?'
Currently my ED radar is on full alert! I've learned that we have to be our child's advocate, no matter what age they are, as when this ED has them their rational thoughts have flown out the window. It's important, where possible, to be present at significant meetings with health professionals as the truth is not always told by the patient or the ED is manipulating the situation. I've learned to push and push for my D and I will leave to stone unturned to get her through this.
Registered: 1268143852 Posts: 1,358
Reply with quote #5
Well absolutely a parent's gut instinct is right. I've always insisted on this. We know our child better than anyone else and we know when things most definitely 'aren't normal' and are outside even the worst that 'normal' adolescence can throw at us.
I knew my son's eating habits had become abnormal and he was losing weight. I knew he was isolating himself from his friends while increasing the amount of exercise and gym visits exponentally. I knew he was developing strange ideas about nutrition that went against anything we attempted to prove to him; even the world's most expert dietitians had got it wrong in his opinion. Yes, it did take me a few months to realise that something was seriously wrong. As the mum of a boy, you're not looking out for an eating disorder but by the time I took him to the GP, first time round, the penny had dropped with a massive and frightening clang. Yet the GP wasn't listening and my son was told to go home and eat more, come back in a couple of weeks. This repeated itself. Meanwhile I was repeating that I thought he was developing an eating disorder. And so on and so forth. TBH, at virtually every stage I was met with a medical profession that didn't 'get it' and that didn't understand the seriousness and urgency of the situation. And, as time went on, I realised that my son's life was at stake here. On this list were: our GPs, CAMHS and our local cardio unit (when my son was admitted for Bradycardia... twice). Some 7 years on, I have completely lost my trust in the medical profession and would ALWAYS go for my gut instinct over and above what they say or do. I know this probably isn't what other people should do, but the whole experience made me lose my trust and left me very, very angry. I feel strongly that if you, as a loving caring parent, sense something is seriously wrong with your child, then it probably is. __________________ Bev Mattocks, mother of 23-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.
Registered: 1396016102 Posts: 4,473
Reply with quote #6
In my experience, the "professionals" are the last to figure it out. (Well, excepting the
true experts like the marvelous Dr. Peebles, but not many people see ED experts before there is a suspicion of ED.) But even before the parents figure it out, the friends know. We need to figure out how to tap into this vast store of knowledge about adolescent well-being (their friends). As I have said here many times, we were lucky - so so SO lucky - that D's friends sounded the alarm early and persistently. What a difference it made to be able to start re-feeding within a few months of initial weight loss!!! It saves so much money, too. CAMHS (UK) and the insurance companies (US) would be wise to look into the question you pose, EdDad. It seems like sheer lunacy that they turn a blind eye to effective treatment until the equivalent of stage 4 cancer, when they then have to pay hundreds of thousands to (hopefully) get the sufferer to a somewhat better place. I have often thought that a delay of even one additional month would have resulted in my d needing IP or residential (or worse) as she went downhill so fast. But between her friends who sounded the alarm (bless them!!!) and the good folks here on the forum who held my hand and gave me good advice (bless you all, too!!!), the cost to "the system" was very minimal - perhaps comparable in dollars to a tooth extraction. Early intervention. What a concept! Thanks for raising this issue. xx -Torie __________________ " We are angels of hope, of healing, and of light. Darkness flees from us." -YP ♡
Registered: 1268143852 Posts: 1,358
Reply with quote #7
Boy oh boy, early intervention is a MUST. But, as you know, we didn't get it. And when we did get treatment my son continued to go downhill although he was never an IP because his BMI was 'too high'. He should have been an IP.
Torie, your D (and you) were so lucky that her friends alerted you to the issue. With boys it's different and by the time it became really bad, my son had completely cut himself off from his friends. The school PE staff were worried, though, at the massive change in my son and alerted the school nurse who called me in, told me what treatment was available for EDs (unlike the GP who said nothing) and told me to get a referral, which I did. It was a further 3 months before we got in front of CAMHS and only then because my son ended up in hospital with Bradycardia. The thing is, you trust the medical profession to do it right. Whatever they say must be the right thing to do and all that stuff. But since then, I haven't trusted them an inch. Quite the reverse. I can't bear going to the GP, hospital, etc because I just feel a massive anger surging inside me. I can't trust them to know what they're doing any more. Just as important, I can't trust them to CARE about what they're doing. Disinterest featured so very highly in our experience. __________________ Bev Mattocks, mother of 23-year old male DX with RAN 2009, now recovered. Joined this forum in 2010 - it was a lifesaver.