Thursday, March 8, 2012


          We have begun the myriad of doctor's appointments for Freya's PWS.  Three days in San Francisco for a total of 2 hours in doctor appointments; long enough for them to tell us it will be 5 months before she can begin the growth hormone treatment.  I could go into the details of why we have to wait (approval from insurance) and what hurdles need to be jumped (the necessity of a sleep study) in order for this very effective treatment to happen.  But honestly, that is not why I am writing this blog.  I am writing this blog because I am frustrated and confused.  I feel humbled and overwhelmed navigating these twists and turns of the bureaucracy of Western Medicine.  Many parents I am in contact with already have their babies on GH.  They are in physical and occupational therapy. They also travel from far and wide to see a special doctor in Florida.  Should we be doing more?   Should I have thrown a fit when the Regional Center said it would be a month before she could be evaluated for her therapies?  Should I have demanded they get her on the GH faster?  What can I do?
     There is part of me that believes, with our sincere devotion and dedication to our daughter and her needs, we can successfully handle her syndrome.  On these days I feel hopeful.  But the evidence is there.  Growth hormones have a strong, positive affect on people with PW. And the doctors, who agree it is the best treatment, can do no better than 5 months.  So today I feel stuck; and confused, worried that I am missing something or not fighting hard enough.  Today I question my ability in being a successful advocate for Freya.
     But I remind myself Freya is only 4 months old.  Once she begins GH treatment she will be getting a shot every night.  And, we found out, she will most likely have to wear a mask when she sleeps.  For now she is a healthy, happy, albeit small and weak, baby.  But she is improving and growing at her pace.  She has even begun to laugh.  Perhaps it is a blessing that she will not be whisked too quickly into a world of needles and machines.


  1. I am sure you are all doing all you can for Freya, and everything will happen the best possible way. Keep up the great work! -Kris

  2. Anne, I can relate to you in so many ways - I could have easily written this myself! You are not alone on this journey. Please feel free to contact me any time. Perhaps we can meet some day.


  3. Kris, thank you so much for your support! Lisa, we will meet some day and I look forward to it. :-)

  4. Anne,
    it's so hard to have such decisions affected by something like insurance. I remember the first week of Nino's hospitalization: every day he had to have a procedure, with anesthesia, and he couldn't eat (he dropped 7 pounds in the first 2 weeks of his illness). Step by step, day by day, they did ONE procedure. I begged them to do them all at once. ONE anesthesia, not THREE.
    But no. Insurance required diagnostics be done in a step wise fashion. I could either attempt to sign on for the $20,000 worth of surgery fees myself (something which the hospital was NOT enthusiastic about), or wait three days and allow Blue Shield to dictate the way it would be done, with two extra anesthesia administrations and Nino dropping weight dizzyingly.

    I had to trust the doctors, something that I just couldn't do, especially because the doctors at the Children's Hospital in Oakland just wouldn't talk to me openly. (Which is the main reason why we switched to UCSF where our lead Doctor Goldsby communicates freely, clearly and is oh! so nice)

    I'm surprised to read though that it will take 5 months before Freya can receive her treatment. Have you talked to the insurance company? Blue Shield has a dedicated section for children with long term illnesses - does yours? It sounds like it would be to the benefit of the insurance company that your daughter be treated earlier rather than later. Maybe they need to be reminded...

    I have found that, even with a great structure like UCSF, I need to be an aggressive advocate for my child's treatment.
    Sometimes this means I ask very hard questions.
    Sometimes I share uncomfortable feelings.
    I watch what they do.
    And I tell them what I notice.
    When it matters, I tell them what Nino will and will not do.
    I don't argue with them. I'm polite and respectful. I do believe that they seek the best for my child, just as I do, but I believe that my opinion is just as important as theirs.
    They know his disease.
    I know my child.

    If you feel that Freya will benefit from delaying her treatment, she will. If you think that she needs treatment earlier, bring Odin into the fray.

    My heart goes out to you Anne. I know how hard it is not to know how things will go, but I believe that you will find the solutions you need.

    With love and support,

  5. Thank-you Anne, for sharing all of this with us. I hope that the writing is giving you relief in some way. Please know that we, the moms, are out here listening, feeling your overwhelm, frustration, pain, worry, and also the joy of your baby girl Freya. This journey is never a breeze, some of us just have it a little easier.

    After reading Ann's post, I just want to let you both know that I am here. That so many moms are here, sharing it with you, lifting some burden if humanly possible, by taking you and your babies, and families, into our hearts. If you feel lost, or uncertain, just think of us, this phalanx of moms who care about you and will back you up in any way, and in any decision you make. We're here.

  6. Hello Anne,
    Unfortunately, fighting against insurance is never an easy task.

    But it's not because an insurance decides something that you cannot appeal. You can follow these tips to appeal a deny :

    Also, the PWSA can help you appeal an insurance deny :

    You will learn that denies are very frequent when it comes to a rare disease :(

    Take care of Freya and yourself