Wednesday, December 1, 2010

Searching...

I’m currently looking for new doctors, but the search is hard since I find a lot of people saying they don’t give referrals or our HMO doesn’t allow access to outside professionals. I have calls into Stanford Bipolar Research, The Mind Institute in Davis, local private psychiatrists, NAMI and I’m even writing letters to specialists who helped with our son’s kidney reflux, begging them to refer me to someone within the system who is working with bipolar kids.

I was really upset with my last call to our doctor’s office. The nurse told me that the doctor has recommended Risperdal, that we should research it on our own and once we make a final decision to get back to them. I told her I was very disappointed because I thought such an important decision under his threatening condition would allow us to meet face to face with the doctor. In our last appointment with her, she told us that she would never put her own child on Risperdal. So it makes me mad that we can’t discuss this further before giving him this medication. I would love the opportunity to show her video of what happened (taken by my iphone during his episode) and to discuss all options available.

But the nurse said that she was sorry, that she couldn’t fit us in and that this was the best our HMO could do. She explained that due to insurance companies, we can’t get more access to our doctor. If we wanted to have more appointment followup with a psychiatrist, we would have to pay for it on the outside, but she reminded us that we would never be able to afford the cost of appointments let alone medication. Then she tells me that there are a lot of other families suffering just like us and that programs previously available to help support families and the costs for care are no longer existing due to cutbacks in the bad economy.

(insert sound of me crying over the phone)

I told her that I was feeling frustrated that these decisions were being left up to us, yet they won’t give us a diagnosis. Or even a hint as to what they think my son has. I know that I need to let go of getting a diagnosis and I have for the most part, but this conversation brought this frustration back up.

The nurse said that we didn’t need a diagnosis to treat our son since calling him “Bipolar” doesn’t change their treatment plan. I explained that I knew that was the case, but for ME, it mattered.

Let me explain why:
If a parent brought their child to the doctors for unusual symptoms and the specialists said that they think their child may have cancer and they want to do chemotherapy. The parents would want confirmation of the illness, they would want the doctors to test to see if there was cancer cells present before they would allow their child to go under such dangerous treatment.

Now, I know that bipolar illness can not be tested and proven, I accept that, but I don’t trust that our doctors are evaluating all of my son’s symptoms, yet they’re now prescribing treatment that they wouldn’t even put their own child through. It’s unsettling.

I guess if the psychiatrist looked at my son’s entire case and said that it looks like he might have bipolar disorder, instead of saying, “he’ll probably outgrow this someday, most kids do”, then I can justify the next level of treatment.

But without a close evaluation of his case, I’m left with the nagging thought... what if the medication is making him worse? Then my next thought is, what if his illness is getting worse and we are wasting time by not starting the Risperdal today.

The responsibility of this decision is weighing heavy on my heart.

* * *

Thank you everyone for all your feedback. Your positive experiences with Risperdal is encouraging. I also appreciate all of your opinions and personal stories shared on my last post, it has been very helpful to both my husband and I. Even my husband told me that after reading all of your feedback, he can see why this blog is helpful to me. Thanks!



5 comments:

  1. I understand your frustration. Charlie's new pdoc (that we really like) is not covered under our insurance. It stinks, but he is so awesome that there's no way we could go back now. Our initial visit was $300 and our med checks/follow-ups are $100. Maybe that could be an option.

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  2. Even with best doctors parents are ultimately responsible for the treatment that occurs, because they are the ones that have to life with the child, and unfortunately, changes in providers are common in our medical system. GB has had the same shrink from the beginning and he is very good about returning call quickly, as he knows I email unless it is urgent. But it comes at a price. He doesn't accept any insurance and charges $400 / hour. Last year, That added up to $2,600. Since taking her off the Risperidal, we have needed much more of his time trying to get her stabilized. I don't even want to think about what his fees will add up to this year.

    You will ultimately make the best decision you can, with the knowledge you have. {{{Hugs}}}

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  3. Oh honey. I am praying you will be able to find a doctor who will treat your son the way he needs to be treated. That's one 'good' thing about a situation like my son's--it's so visible how sick he is, so all I need to do is yell and I get what I want (though most the time all I have to do is ask.) I am praying for you and trying to wrap you in a virtual hug!!!!!

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  4. I know this will sound callous but I would not overthink it at this point. Your son is in a crisis and there are a limited number of antipsychotics. Go ahead and try the risperdal. If it's bad, don't use it again. If it works, you have your answer. No matter how much you discuss it with the doctor ultimately it is a trial and error with the meds. You just have to try them and see. And ultimately it's the parents and child's decision as to what meds they will and won't take. With the psychosis he has at that early age I'd bet money that he's probably never going to outgrow his bp. The outgrowing it is usually more related to hormone induced issues in the teen years that are mistaken for true bp (from what I have researched). Give the risperdal a try.

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  5. Meg-That's interesting about the whole "outgrowing it" thing. My doctor says that a lot, but she has never mentioned if these were teens outgrowing their behaviors. What you say makes sense.

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