Prader Willi Syndrome

Discussion in 'General Parenting' started by lizzie09, Oct 10, 2008.

  1. lizzie09

    lizzie09 lizzie

    Any one with experience of a young adult with Prader Willi Syndrome?

    I am just new to this forum

    Thank you
  2. busywend

    busywend Well-Known Member Staff Member

    Welcome Lizzie! No experience here, but I do believe we have one or two members that have this diagnosis. I am not sure how often they check in though.

    Maybe one of our members will remember who it was and email them for you.
  3. Fran

    Fran Former desparate mom

    Hello and welcome lizzie.
    Could you please do a signature profile? It helps us keep everyone straight.
    The instructions are in the forum "faq". There is also a list of the lingo we use.
    I have little experience but there was a teen who was in a Special Education program with my difficult child that had that diagnosis. He had a one on one aide to stay with him. Sorry, wish I could be of more help.
    How old is your child?
    What symptoms are you seeing?

    Hope we can help in some way. You aren't alone. We have all dealt with our own strange combinations of diagnosis'.
  4. susiestar

    susiestar Roll With It

    Welcome! Sorry you had to find us, and that you have to deal with this. I only know a basic description - that the person with this never feels full, actually always feels hungry.

    This sounds like a difficult disorder to deal with. I am so sorry.

  5. lizzie09

    lizzie09 lizzie

    Thank you all for kind words.
    I have had a go at the signature so hope you get an idea about me.
    Ds 1 PWS is 22 and in the last 4 yrs has developed behavioural issues that have a psychiatric twist. I could not get any help for this as doctors said it was not psychiatric but behavioural connected to syndrome.
    We have been lucky that food was never a major problem but I must say these episodes of behaviour are daunting.
    They first happened when he left school in 2005 and for three mts we had odd difficult behaviour. It was new to us so we worked through it and after a year of looking for a suitable day placement he was offered a place to start the following Sep one year after leaving school. As soon as the placement was sorted the odd behavior started again so we felt it was related to stress. Once again the phase lasted 12 to 14 mth during which I was suddenly taken ill and needed a hysterectomy. This sort of brought things to a head as a respite place was offered as I was not at home.
    Once again last year for 3mths we had a similar episode and at the moment I am very uptight as I suspect another is beginning.
    It seems there is a cycle format to these episodes that occur once a year and last approx 3mths.
    Overall this poor boy is fine but when he acts odd like I have said he loses credibility/ I fell he has no control over this but cannot help blaming him when I am up the walls!!! There has never been any medication offered or advised but have recently got Xanax from GP to have handy
    His siblings are youngerr though now young men and all our lives can be very disrupted when this happens.
    |Thank you for reading this.
  6. BestICan

    BestICan This community rocks.

    Hi, and welcome. I'm sorry you're having troubles with your difficult child.

    A long time ago, I actually had a summer job at a Pittsburgh, PA center that had a Prader-Willi clinic. So I do have some level of familiarity with the syndrome, but sadly no practical advice for you.

    The only thought I have is that you may want to contact this clinic for Prader-Willi specific advice. When I was working there it was called The Rehab Center, but I don't think it's got the same name now. Maybe you've heard of it?

    If you haven't, let me know and I'll be happy to track down the name.


  7. Marguerite

    Marguerite Active Member

    I was thinking the same - while we can help here, I do think you need to get some highly specific advice directly relevant to PWS.

    A classmate of difficult child 3's (former classmate, at the moment) is PWS and about 12. Currently in placement because his mother (who I think has been absolutely brilliant, a saint and eternally vigilant) finally couldn't cope because his problems escalated to such an extreme level to the point of doing harm to himself as a result of his obsession with eating ANYTHING plus his mother's (necessary) tight controls. It's not satisfactory for this boy at the moment, they are sedating him in order to cope. We saw him at a dinner (ironically enough) and I was horrified to see how bombed out he was; his mother wasn't happy with it either. But she was a bundle of nerves from the long-term stress she's been through.

    He's my only personal experience with PWS; yes, there are other behavioural issues loosely connected to the PWS which, being more general, could be worked on here. But you might find that what your son is doing, while not technically psychiatric, might still be more familiar to someone specialising in PWS.

    But hey, grab whatever help you can find, wherever you find it. Pick our brains by all means. A book we swear by is "The Explosive Child" by Ross Greene. There are other really good books, people here will share their experiences. I know he's no longer a child but I find that book helps with a wider range of interactions than perhaps was originally expected. If you go over to Parent Emeritus you might find some good information over there, too.

    I suggest you keep a diary (if you haven't already been doing so) because it could help you find a pattern to his behaviour. A diary can sometimes help you see this sooner than you would otherwise. I used to count on the doctor to keep a good enough record - they don't.

    Anyhow, welcome.

  8. lizzie09

    lizzie09 lizzie

    Thanks Marg

    Please get that name if you can and email if poss would be handy as I am in Ireland
    There was a great paediatric service here for PWS until 18yrs old although syndrome is rare enoiugh here but at adult level noone is interested and | cant get info from anyone on these issues despite website.The medicines used to modify serious behaviours are heavy stuff and to be avoided if at all possible.
    Thank you for your interest
    My life is good except when this starts about once a year so I suppose I am not too bad overall...very very sorry for the poor lad though
  9. Marguerite

    Marguerite Active Member

    Lizzie, it was Jen (BestICan) who had the possible name of a clinic, not me. You had me worried - I thought I had accidentally promised something I couldn't deliver!

    A thought, though - can you argue with your government, under equal opportunities, human rights or whatever legislation, that your son has a right to appropriate medical attention?

    Here in Australia we can access pediatric services until aged 25, at which point the person is referred to a psychiatrist who often as not, will authorise the pediatrician to continue treatment. We're just about at that point with difficult child 1, so we're still learning that one ourselves.

    But the human rights/anti-discrimination angle has opened doors for us which were otherwise firmly shut.

  10. lizzie09

    lizzie09 lizzie

    Sorry BESTICAN

    It is you who might have the clinics name ...anytime you get a chance it would be appreicated.
    You are all very helpful...I realise its quite an unusual situation and no matter how prepared I try to be it hits again like a bolt out of the blue. Its also hard to separate the child you know from the behaviour he exhibits at this time
  11. susiestar

    susiestar Roll With It

    I don't have specific info to help, but I strongly suggest keeping a daily journal of his behaviors and symptoms. Many times our kids have more than one problem. It may be that seasonal anxiety is triggering his problems, or that there is mood cycling, which would be a different problem.

    I don't mean to scare you, just that if you keep a journal, you might see something else going on - and THAT might open some doors to help. Many of us have only gotten the right help after weeks/months/years of journalling to see moods, behaviors, problems, positive things.


  12. totoro

    totoro Mom? What's a GFG?

    I recently spent a few hours in San Francisco talking with a Mom in a park whose son had a severe case of Prader Willi Syndrome. He had to be in full placement for him to receive the help he needed. She had him on the weekends. He was 12 I believe.
    I agree with Susie though about journaling. This young man that I met had so much else going on that contributed to his eating and the severity of it.
    He was diagnosis'd with co-morbid- Autism and severe Anxiety with Obsessive Compulsive Disorder (OCD) components.
    He needed medications to help with his anxiety and to help him even start to function with the thoughts of less eating.
    This young man would never live on his own due to the severity of his low functioning Autism and the inability to control his Prader Willi Syndrome at all. He was powerless over it. But the Mom told me that with his placement and the medications for Anxiety he was doing SO much better than he had ever done in the past.

    Keep searching and journal, write down anything that may be triggering these episodes, seasons, stress, schedules, situations... anything.
    For most of our kids with issues there may never be a cure but there is always help and hope.
  13. lizzie09

    lizzie09 lizzie

    Thank you SusiStar and ToToRo for your input.
    I will write down everything. Up until now I have been observing carefully and cannot see any trigger..I did first think it was seasonal as it happpend twice during our unusually warm and sunny summers but then again it happened in the Autumn (your Fall) As its a yearly occurrence would it be cyclical do you think? How the heck does these things take on patterns?
    It is the only really debilitating thing in the syndrome as hes fine around food but puts on weight easily
  14. susiestar

    susiestar Roll With It

    In children with bipolar they often cycle rapidly, sometimes several times a day. But it is my understanding that adults with bipolar can cycle on a yearly basis - go throuhg certain moods during certain times of the year, or every X-many months. I am NOT saying your child is bipolar, just that this is something to think about. SO many of our kids actually have more than one problem, it makes it worthwhile to keep a journal. (Heck, for my migraines I kept a journal for 18 months for a research study. It really helped identify my triggers and how to avoid them. So it is not just bipolar that gets help from journalling - it is almost every disorde!)
  15. lizzie09

    lizzie09 lizzie

    Thanks again susistar..nothing would shock me at this stage. I would just be relieved if I knew or someone else knew what was going on and how to help us all.
    Isnt it daft that no professional person has a clue here and there seems no service for disability and psychiatric disorders together, You see the normal mental health service does not want to deal with disability so we are left with whatever doctor sees clients in day services and this is usually someone retired who is doing this as a parttime money spinner and is not well versed with up to date medicine

    Its lovely that so many of you have replied so kindly.

    I am interested in hearing of any medicine that might be used in PWS as a lot of things dont work well either........many thanks again x
  16. BestICan

    BestICan This community rocks.

  17. lizzie09

    lizzie09 lizzie

    Thanks so much Jen. Never no what I might find out now.
    Really appreciate that x
  18. totoro

    totoro Mom? What's a GFG?

    Don't know if this is a better option?

    Prader-Willi Syndrome Association (UK)
    125A London Rd
    Derby Intl DE1 2QQ
    Phone #: 01 -332- 365676
  19. totoro

    totoro Mom? What's a GFG?

    Just a question? If he is fine around foods, what makes you think it could be Prader Willi Syndrome? This is a definition I found:
    What is Prader-Willi syndrome?

    Prader-Willi syndrome is a complex genetic condition that affects many parts of the body. In infancy, this condition is characterized by weak muscle tone (hypotonia), feeding difficulties, poor growth, and delayed development. Beginning in childhood, affected individuals develop an insatiable appetite and chronic overeating (hyperphagia). As a result, most experience rapid weight gain leading to obesity. People with Prader-Willi syndrome typically have mental retardation or learning disabilities and behavioral problems. Many people with this disorder also have distinctive facial features and short stature. The genitals in both males and females are underdeveloped, and most affected individuals are unable to conceive children (infertile). Additionally, some people with Prader-Willi syndrome have unusually fair skin and light-colored hair.

    I am not doubting you, but the insatiable appetite is one of the hallmarks of this syndrome...
    You might be dealing with something else altogether? Just a thought.
  20. lizzie09

    lizzie09 lizzie

    Yes Totoro I am sad to say it is PWS as his chromosomes indicated initially and he had all the floppy tone and feeding difficukties in infancy,
    He is careful around food and wouldnt eat half as much as his brothers but his tone and metabolism mean he will put on weight easily.
    I see risperidal as one of the medications you are involved with. Did you find that there was weight gain with this medication and what did you think of the positive effects it might have had. It is listed as suitable for mood disturbance in PWS too.