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Posts: 2
Reply with quote  #1 
Is anyone else from the UK (North East) and fighting for a diagnosis? I'm struggling. My daughters lips are once again cracked and splitting, she is run down, has 4 ulcers in her mouth and refusing anything nutritious as per the last 10 years! Her anxiety is through the roof, the 'beige only' diet is now down to only 3 items... potato, pancakes and bread. Help and/or support desperately needed [frown]
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Posts: 81
Reply with quote  #2 
A lot of ARFID/selective eaters are reporting really good results from this guy's therapy and/or video:

14yo D, hospitalized July 2015 after losing 20lbs, followed by a horrible week in an ED clinic. No obsessive dieting or body image issues, yet misdiagnosed with RAN until UCSD weeklong treatment program Jan 2017 updated diagnosis to ARFID. Many mistakes made along the way due to not understanding the difference between the two illnesses.

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Reply with quote  #3 
Welcome to the forum. It sounds like you have been struggling with severe selective eating for many years. You don't mention if she has seen anyone for diagnosis already, or what has already been considered, or whether she is currently under professional care. We are not doctor's here, but your D sounds very ill. Anxiety is often part and parcel of eating issues, be they due to sensory issues such as autism or due to eating disorders. 

The link from cnkinnh looks as though it could be helpful. Please tell us more. 

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.

Posts: 2
Reply with quote  #4 
Thank you for the replies...
Daughters GP is convinced she is just a picky easter even though she suffers from chronic tonsillitis and they were unable to remove her tonsils due to them struggling to stabilise her anemia. It's as if no one will take me seriously!
Her anxiety means she bites her fingers and toe nails to the point of them bleeding and becoming swollen and infected. She struggles to go to the toilet, sleeps around 12 - 14 hours if left, vomits at the prospect of having to eat anything other than her safe foods, won't attend family gatherings or parties too. I've always thought she had aspergers traits but sitting with her GP and relaying all this plus more, you would think I was speaking in unknown native tongues! 
She so badly wants to eat better and participate in normal activities that include food but her phobias don't allow her too. I'm so pleased I found this site though, i don't feel so isolated now.
Oh and thank you for the link [smile]

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Posts: 3,315
Reply with quote  #5 
I'm from the UK although from the South West rather than the North East. It definitely sounds as if your daughter is struggling with aspergers type traits and is very unwell as a result of her inability to eat a varied diet. I don't know whereabouts in the North East you are but I do know that an adult ED patient friend was able to self-refer for an assessment for Autism in Newcastle. Maybe (NO personal knowledge of these places or guarantee of the accuracy of the information) some of the places in this list could be of help?
Fiona Marcella UK

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Posts: 173
Reply with quote  #6 
Is your GP willing to make referrals ? Can you ask for referrals to a ED specialist, a psychologist and a gastroenterologist. I would ask for help with identifying ways to help with her malnutrition. The gastroenterologist would be able to rule out some physical problems such as celiac as the reason that your cannot stables her anemia. 

Will she take multivitamins or other supplements ? Are the pancakes home made? We add protein powder to pancakes and waffles. 

18 year old boy (Gluten Free/Dairy Free 2005)
 IP - March/April 2014.  ARFID.
 2015 - Gastroparisis

Posts: 6
Reply with quote  #7 
"Chronic tonsillitis" caught my eye.  Please look into PANDAS.  (Pediatric autoimmune nueropsychiatic disorders associated with strep).  If the symptoms sound familiar have her tested for strep.

Posts: 2,463
Reply with quote  #8 
Panicked mum,

Firstly welcome and let me say how sorry I am to hear about what you and your d are going through.

But on top of that, I just want to say how totally shocked I am that your GP has never made any referral to a paediatrician or to CAMHS.  I think you have been let down big time by a system of care that is supposed to ensure that every child gets the support and attention they need for optimum physical and mental health.  You have a right to kick up a fuss big time - although that might not get the best results.  However please push for a referral to specialist services of any kind.  This has gone on far too long and your d needs a lot of examinations to find out what is happening so that you can all get her the support she needs.  Your story has made me very angry but I know these cases do happen, probably more frequently than any of us realise.  Let us know how you get on.

Believe you can and you're halfway there.
Theodore Roosevelt.

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Posts: 1,364
Reply with quote  #9 
Hi panicked mum,
Welcome to the forum and glad you found it.
You have received some good info already. I am not a medic and am just throwing out ideas.

It sounds like your D and the family are putting up with a lot of suffering. 

I am also wondering the following as ideas -

1/ can you get the doctor to refer you to CAMHS as a starting point.If not can you self refer??Or get her school to refer??
2/ can you change doctor?
3/can you get a full set of bloods done and get a referral to an eating disorder clinic.
4/ can you get a referral to an endocrinologist, gastroenterologist  or similar.
5/there are injections /treatment for anaemia, can your doctor look into this for you?
6/ I feel your D would benefit from a multi disciplinary team, headed by a psychiatrist, so that meds ( if any are required) can be decided on , also a dietitian, and a therapist to help with the anxiety.
7/ I found this when I googled services in your area.
I don't live in the UK but it may be worth calling them for more advice.

Best of luck, it is great that your D wants to get better, OR IMPROVE HER LIFE, that is half the battle.

Son,DX with AN, (purging type) age 13 in October 2015 ,  (4 months immediate inpatient) ,  Now Phase  2 , making progress every day. Living life to the full like a normal teen. We are not out of the woods yet, but we can see the light at the end of the tunnel, thanks to ATDT.

Posts: 695
Reply with quote  #10 
HI panicked_mum,

Honey Badger has a great thread on how she helped her son. Here's the link.

I often research (on line or ask friends/family) resources for particular problems and just walk into the doc and ask for a referral setting out in clear terms why I want the additional expertise. Eg Hubby had IBS according to doc and nothing could be done. I found a pilot program in nearby hospital for IBS and got doc to refer hubby and at last we are getting treatment. Won't be a miracle cure but will ease the symptoms.

Your doctor failing in his duty to address you child's serious health issues; recurrent infections that cannot be treated because of severe undernourishment. It may be that he doesn't know what to do but if that is the case then he needs to refer you to someone who does. Leaving your daughter in such a state of ill health is unconscionable.

Best of luck,

Mother of 13yo son restricting but no body image issues; inpatient 6 wks Sept/Oct 2015 but lost weight! So emotionally destroyed they agreed to let him home to us. Stable but no progress. Medical hosp to kick start recovery for Feb 2016. Slowly and cautiously gaining weight at home and seeing signs of our real kid.

Swedish proverb: Love me when I least deserve it because that's when I need it most.

We are what we repeatedly do. Excellence Recovery, then, is not an act but a habit. Aristotle.

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