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Medical Complications in Children and Adolescents with Feeding and Eating Disorders

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  1. Kendall Buczynski

    My 34yr. Old daughter has been dealing with this monster over 1/2 her life. She is on disability and doesn’t work. She lives at home. Been hospitalized over 3 dozen times. She is currently waiting for a bed again in Walden Behavioral care. Getting so 😩 weary.

  2. Cher

    Kendall, I understand completely and I grieve for both of us. I am right there with you. My daughter is also 34. Seems like thousands of hospitalizations, feeding tubes, pressure sores, skin grafts and now the doctor wants to resection her stomach due to the gastroparesis. I want to give up, but instead I just try to hang on for one more day.

  3. Jacqui Mann

    Very good and comprehensive talk.
    Watched as I am keen to understand the impact of AN on daughter.
    She was 11(prepubertal), recognised quickly but services failed to respond and treat. Sadly deterioration was fast and she needed admit to Paeds initially age 12. Fortunately paeds pushed in-patient admission to ED unit, she complied well with agressive tment and 7 months later we were delighted to help her reintegrate into her school and life age 13.Age 14she had Dexa scan, Pelvic U/S, dexa 2 yrs behind age, and U/S underdeveloped.
    She was given high dose oestrogen and some supplements. I did wonder about her having autistic traits then but no one else mentioned it
    She was well for 4 years, never started periods. She had one follow up for repeat Dexa and Pelvic U/S at 18. Both much the same.
    Unfortunately the transition to Uni, resulted in growing anxiety, anorexia returned and alas though she reached out for treatment there was none, 1yr wait list resulted in severe ill health,critical weight loss, collapses and grand mal fit with trips to A&E, acute admission to ED Unit needed but no adult bed. Nightmare times. Was more convinced there were autistic elements to her, not being able to process changes, feelings, but as parent of 20yr old conversations with me were avoided.
    She was driven to complete her interrupted degree, and eventually we got outpatient sessions in her Uni city but it took anther 2 years to restore her weight to the low end of normal (and going Vegan).
    She suffered mildOCDs anxiety and depression all through her Masters programme, but succeeded retaining her weight, she was on supplements but no hormones.
    The point of saying this is there has never been physical follow up. At 25 she is amenorrhoeic other than pill induced. As she started work as a speech and language therapist the anxiety worsened, but she struggled on, she noticed how well she got on with her autistic patients. So again weve talked about some her characteristics, and behaviours and autism and maybe its a contributory factor. Personally I think it might be a basis of her whole story.
    I really think long term follow up should be offered, no-one ever checked her heart, or brain, even when she fitted.
    I was terrified when she took up running and ran her 1st half marathon during her masters but, it helped her cope. Starting work as SLT had been challenging.The move to a new flat and then Covid isolation threw her into depression, tho she soldiered on. But eventually she had to take timeout from work as her GP medicated her (which made her feel ill) Then I tragically I also discovered sh’d not had a smear, or ever been intimate with a man as any touching of her genitals hurt, so she’d avoided having relationships. I encouraged her to ask GP for a gynae review, a dexa scan revealed osteoporosis, no U/S scan, but HRT, pesseries and dilation exercises prescribed. No one wants to pick up referral for her osteroporosis. Its a fine line one treads as mum, a tricky balance of care. neither of us want her to be defined by her illness, yet it has shaped her, and affects the way she gets through life.
    It appals me there was little interest in the Autistic elements throughout her time, again here we are 14 years on from her poor mental health treatment as child and threre was no capacity to help her when ill recently. But on one occasion she was unsafe and assessed and thought exibit autistic behaviours and referred. She is now on a 2yr waiting list! Fortunately she has reflected more on Autism, and in doing so is making sense of herself with positive benefit (reglardless of assessment and diagnosis). Physically I still dont know how much subtle influence ED after effects impact on her physically. Mentally she has seriously rubbish memory, sometimes notice cogniticve function off, she struggled learning to drive as spacial awareness poor. Proper holistic follow up should be given to these Ed sufferers, given the impact it has on the body. Other co-morbidities need to be adressed to maximise recovery. If a person has had ED, then there should be a lower threshold for support. As a mum it breaks my heart to have seen her let down at every stage and so hard as a (recently retired Nurse consultant in paediatrics, and also one time NHS commissioner) to witness such failings. I am only grateful that we have been able to keep mum daughter communications going, more or less. But it hurts(sometimes can make me angry) there are so many consequences that better care may have avoided or at least minimised. She will have challenges in her life to overcome, due to impact of the ED, compounded by service unavailability. If she’d had early treatment, identification of autism, follow up monitoring, access to good top up care, I think she’d be in a better place today. I do worry for her future health.
    As a high proportion of girls with Anorexia have autisitic traits that needs proper identification in them to adapt treatment, long term advice and support.
    I think they need follow up care like our childhood oncology patients do.
    I think ED doctors and charities should also be researching long term impacts and formulating an aftercare criteria some clinical advice that other consultants, GPs can find and act on.
    Having had such a lengthy time following developments particularly re:anorexia. I get frustrated at how slowly things move, ive seen and read great stuff like yours, but know it doesnt hit mainstream services, so as well as being under resourced they just arent practicing up to date care outside the big centres. I love what SLAM does, but none of what they practice is practiced in provinces.
    Sorry to rant, enjoyed your talk, thank you, but it got me back to a zone I avoid, its pointless to revisit something i cant change.

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