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Medication compliance
  • My daughter has an ASD diagnosis, but reading up on PDA she certainly fits this profile. She also has Ehlers Danlos Syndrome. As a result, she has huge digestive issues and has fallen to 3rd percentile for weight. She refuses most of her meds and it takes me hours to get her to take them, plus her supplement drinks. Now her paediatrician has given me an ultimatum - either she gains weight by end of month or goes into inpatient for 2 weeks where "they'll make her take her meds/drinks". I tried to explain about PDA but doc was not listening. She says "we get all sorts of kids here" and implied I was a bad mom "letting things slide".
    So, I'm here, desperate, looking for any advice. I have a lot of the same traits as my daughter, both PDA and digestive issue wise. My dad force fed me as a kid and it made things worse. Plus, she cannot function without me, I know hospital would break her completely. She is already suicidal a lot of the time - though I think that's mainly extreme mood swings.
    Are there any strategies that might help? Obviously I've tried all the usual star charts etc which are pointless. Has anyone been in a similar situation? I feel so lost and helpless.
  • Holly59
    Posts: 2,586

    My daughter has an ASD diagnosis, but reading up on PDA she certainly fits this profile. She also has Ehlers Danlos Syndrome. As a result, she has huge digestive issues and has fallen to 3rd percentile for weight. She refuses most of her meds and it takes me hours to get her to take them, plus her supplement drinks. Now her paediatrician has given me an ultimatum - either she gains weight by end of month or goes into inpatient for 2 weeks where "they'll make her take her meds/drinks". I tried to explain about PDA but doc was not listening. She says "we get all sorts of kids here" and implied I was a bad mom "letting things slide".
    So, I'm here, desperate, looking for any advice. I have a lot of the same traits as my daughter, both PDA and digestive issue wise. My dad force fed me as a kid and it made things worse. Plus, she cannot function without me, I know hospital would break her completely. She is already suicidal a lot of the time - though I think that's mainly extreme mood swings.
    Are there any strategies that might help? Obviously I've tried all the usual star charts etc which are pointless. Has anyone been in a similar situation? I feel so lost and helpless.



    Hi,
    I am so sorry to hear of your situation. Your Consultants attitude is appaling . You are an amazing Mum to cope with your Heath and your daughters issues.

    http://www.pdasociety.org.uk/resources/awareness-matters-booklet

    Can I suggest you print out a copy of this guide and show it to your Consultant explaining the issues of PDA.

    If your daughter has PDA she could also have ADD , ADHD as well . Has she been checked for Dyslexia or Dyspraxia ?

    http://network.autism.org.uk/sites/default/files/ckfinder/files/Eating issues Dr gould.pdf

    My 19 year old son has just been diagnosed with Hypermobility and we are going for an appointment so for Marfan Syndrome . I also am going to ask about ED Syndrome, there may be a possibility he has that.

    Have you tried using PDA Stratagies . Giving her the choice of how to take these meds, put her in control.

    My youngest son is an extremly picky eater. To be honest now I let him eat where and when he wants . As long as he eats something, he has an extremly limited diet that's fine by me. He normally eats at the computer desk. I have know some parents on this site let their children eat in bed, sensory tents .

    When we go to a restaurant I tell the waiter he has Food Allergies, it's must easier than explaining PDA and picky eaters on the Autism Spectrum.

    http://www.pdasociety.org.uk/resources/books

    The second , third and fourth books on here are excellent . There's a lot of reading but well worth it.

    http://hypermobility.org/

    PlanetAutism is the EDS expert on here , I am sure she will offer advice as to your situation.

    I presume you are in America ?

    There is an American PDA Society .

    http://www.pdasociety.org.uk/resources/external-links/blogsandfacebookgroups

    Lots of blogs to look through as well.

    http://www.autism.org.uk/about/health/eating.aspx

    https://dragonriko.wordpress.com/2016/04/29/pda-and-healthy-eating/

    https://dragonriko.wordpress.com/2016/04/29/pda-and-healthy-eating/

    If you want my opinion find another Consultant who " listens" .

    Forget star charts , they don't work. Reduce the anxiety and things will slowly improve. Don't forget what works one day won't work the next . Choose your battles carefully .

    If you can get video evidence , start a diary , start PDA Stratagies and make a note of what happens .

    https://www.ehlers-danlos.org/patient-support/your-child-and-eds/gastro-problems-in-children/

    Why can't the Consultant Peg feed her , , one it will take the Demand situation away , two it will help her get into a regular routine with the bowel situation and her meds / supplements can be given this way .

    It's easier than nasogastric feeding, I have done both and once you learn peg feeding it's so much easier than NGT .

    http://www.autism.org.uk/about/what-is/pda.aspx

    Hope this gives you a little help.

    Pat xx
  • Holly59
    Posts: 2,586
    https://en.m.wikipedia.org/wiki/Percutaneous_endoscopic_gastrostomy

    For anyone who has not heard of peg feeding , it's a tube inserted direct into the stomach. My mum had one fitted.

    Can be used short term as required.

    Pat xx
  • Hi, thanks for all that info! Although TBH I've already read every one of the links already
  • Ugh, wrote a really long post but it's vanished. Does that happen often with this site? Kept showing it was saving but maybe not? Boo!
    Long story short:
    Doc says no tubes unless tried inpatient first
  • Damn, that one vanished too. Will write lots of short replies in case that helps.
  • Holly59
    Posts: 2,586

    Hi, thanks for all that info! Although TBH I've already read every one of the links already



    Could you ask for a second opinion ?

    Is your daughter been seen at a local or regional hospital .
  • Once I become interested in something, I read every research paper, book & blog I can get my hands on
  • So, first EDS (you've 2 'experts' now!) then ASD, now PDA.
  • No choice which doc she sees. Her brother sees one who is expert on ASD but not taking new patients.
  • Her previous one moved cities. And was useless. Hopefully this one just trying to scare us. Gave no target weight.
  • Says, no tubes unless try inpatient hell first.
  • My own autistic/PDA traits make it very hard for me to stand up to doctors. Would rather hide under a blanket!
  • And yes, they eat in bed, on sofa, wherever and whatever. Now I'm offering choice on timing & order of meds. Hopefully that'll help.
  • Holly59
    Posts: 2,586
    Phew what a list.

    How about putting your views in writing , send it recorded delivery or deliver by hand . Can you get an Autism Advocate or another family member to go with you and together express your views.
    It seems such an appaling method to " help" a child. Look at the effect it's had on you.

    I had an appendix which nearly ruptured and I know how dire I felt . I can't even start to imagine how she feels.

    How frustrating your sons doctor is taking on no more new patients.

    Pat xx
  • Holly59
    Posts: 2,586
    http://www.positiveautismsupportandtraining.co.uk/training-dates-and-booking-info

    There is another training date for NI planed by this Company in March. No dates as yet. Perhaps you could email them .

    The PDA Society are also planning a Training Day this year. I went to the Glasgow event and it was brilliant .

    You will certainly benefit learning about different approaches and Stratagies from the PDA Trustees who have had years of " hands on " experience . Apologies to Trustees I don't mean this in an offensive way !!!!!!

    There was a lovely mix of people , parents, carers,grandparents , teachers all sharing experiences. I learnt more in one day than all the books I had read.

    They also supplied an excellent information PDF which you could share with family, teachers, Consultants, GPs etc . I have shared with tutors at my youngest sons College and others and they have all found it really informative.

    Hope you can get to one of these events .

    Pat xx

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