February 19, 2015

learning lessons- Fragile x Guardian

She is a joy!  She is usually smiling, she says" I'm happy" twenty times a day,  she loves music, loves to dance and adores food and eating out. I am a lucky woman to be able to be be her guardian  and her friend.  She lives in a beautiful group home, her roommates are truly her family, her team of caretakers love her to death and God has blessed with good health.

My girl was born with (fragile x) syndrome and she has many, but not all of these symptoms.

  • intellectual disabilities, ranging from mild to severe
  • attention deficit and hyperactivity, particularly in young children
  • anxiety and unstable mood
  • autistic behaviors
  • sensory integration problems, such as hypersensitivity to loud noises or bright lights
  • speech delay, with expressive language more severely affected than receptive language
  • seizures (epilepsy) affect about 25% of people with Fragile X
Recently one of her doctors decided on a course of treatment for which I did not understand or agree. Although I've have a lifetimes worth of opinions I am by no means unwilling to listen to a doctor’s reasons for treatment or medication. So I called and I faxed and I got no response, no explanation. NOTHING!

When I took over her guardianship, she had doctors in place and it never dawned on me to check on their credentials. 

Why would he decide on doing xyz and then refuse to discuss it with me? So me being me, I got suspicious and did background check of the doctor.

This doctor WAS and IS without question a criminal. He has a documented history of personal use/addition to drugs in two states. There is a record of malpractice, a history of prescribing adult psychiatric meds to children, he has been cited numerous times for over medicating venerable foster children in clinical drug trials by the FDA and he’d been arrested for drunk driving and possession of cocaine (and entered into a court diversion program).

It is beyond me how he was allowed to see patients with this record. And you can bet she will never ever enter his office again. 

I am bewildered with how the lenient medical licensing boards are with doctors and it is scary to think how our most vulnerable are at risk if exposed to these horrible doctors.

I needed to do a better job reviewing her health care providers; something I have come to regret. 
Do you check the background of your physicians?


  1. That is scary, Jen. Glad you did some research. Great reminder for us to check out the our healthcare providers!


    1. I thought the group home did it,apparently they didn't either. Now we all know better.

  2. I do check the backgrounds of my doctors but then I'm an RN and am suspicious of ALL of them to say the least. I didn't know you did guardianship. How old is she? I'm glad you caught the crook before he created more problems for you

    1. She is 52. Her parents were dear friends and neighbors of Bill and when we were first married in 81.They were such a lovely older couple, like extra grandparents for my kids. Dad died two years ago and Mom last May so about a year before she passed she transferred the guardianship over to me. The thinking was it would give her time to adjust to our new relationship since as you can imagine there's a lot involved.

    2. I am so happy that she has you. Often times older parents don't have anyone to take over for them when they pass.

  3. Personally, I think most all doctors are scary. They think they are Gods and the patient is supposed to blindly trust them. They don't give the patient credit for having any intelligence at all and hate when you question them, like you don't have the right to do so.

    1. Oh Ms A, Don't I know it!
      I've found that most doctors with the exception of ones that specialize in intellectually disabled people don't like to answer questions especially about the disabled. Her dentist is wonderful. Her regular doctor once asked me when I challenged why she would treat her differently than a person who wasn't ID, she snapped and asked me "are you a doctor ?" I thought i was a legitimate question!

      My mothers generation always listened to people in authority, doctors, cops, government, priests. I have a healthy suspicion of all authority, I respect the heck out of those who earn my trust but that takes a lot. I'm like you I will always question and if I they don't want to answer I move to another doctor.

  4. Hi Jen - that is really scary ... and I sure hope Fragile X is happy in your company and care.

    I question or query if I'm not happy and if I'm unsure I don't follow-up - I move on ...

    Your situation is obvious and disgraceful ... dealing with so many of us we as patients could slot in anywhere ... I always hope they'll see me as pragmatic and not a whine, or pain the butt - but as they rarely see me ... I think my doc is pretty good, as too my dentist ... the rest I hope on ... eg the hip consultant - he's got a good reputation around town - so as I'd no idea .. that reassures me.

    Cheers and good luck to you and Fragile X - looks like safe hands are around ... Hilary

    1. My dad used to have a saying, "my money spends anywhere". I sometimes think doctors forget there's a hundred other doctors down the road happy to take new patients.

      Here in the US patients with means and insurance are sought by doctors who are hurting with all the changes made by the government to healthcare.

      I guess its rather sad sign of the times that those we trust to care for us have to be reminded that informing the patient fully is an obligation not an option.

  5. No. I don't.
    But perhaps I should.
    You have just empowered yourself, Jen. xxxx

    1. Wouldn't hurt Kim then you'd be
      empowered too!! ;)

  6. She is one lucky human being to have you as her guardian, Jen!
    How irresponsible for the 'powers that be' to have hired this fella in the first place. And good that you have stepped up to protect not only her but others.

    1. Thanks Jim,
      She's a sweet woman and I can say with all honesty I get as much as i give.
      There is SO much more to the story as you can imagine but keeping her/others safe and healthy is the important issue , the parties and personalities I'll keep private for now.

  7. WOW! Sounds like Micheal Jackson's doctor! Glad you had the sixth sense to check stuff out. Always follow your gut. Fragile X is blessed to have you looking out for her.


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