Now Who, What...and Where? and how much will this cost?

[simplyshine]

Having spent 18 months with out getting any significant help for my 10-yr-old son who continues to display severe to mild Pandas symptoms, I am completely frustrated and "done" with our Kaiser doctor. She brought up the possibility of Pandas at our first visit, however, just as quickly ran as fast away from it as she could. We've tried to deal with the symptoms to some degree, like trying stimulant meds and talking to a therapist. I have to admit that I haven't been willing to go through all the steps she's suggested, such as seeing a psychiatrist and sensory therapist, checking blood for things like high copper. It all just seems ridiculous to me to jump through all these hoops, but perhaps that's why she isn't willing to diagnose Pandas, since we haven't ruled all her other ideas out. Nevertheless, I don't believe she will help us move forward and my son's severe episodes are getting worse and harder to live with. Our family is suffering. We aren't getting much sleep, and my four kids no longer like each other much -- all because of our one child who is sick, very sick.

 

So my question is this, if you have a doctor who won't help with a pandas diagnosis, then what are the steps to take next? I don't know where to start. We are in Denver, so I'm hoping someone out there knows of a doctor who has experience with Pandas instead of looking at me like an over-emotional, internet-diagnosing crazed mom. If so, does Kaiser ever refer outside their docs? Do I ask for that? Can I? Also, what can our family expect to spend if we have to go outside of our insurance? Should we expect that this will be a real financial strain? We are willing to do whatever it takes...I just wondered how to break it to my husband:)

 

I've reached that point I'm sure some of you can relate to...when the disbelieving doctors no longer have a hold on me. I'm done, finished, and moving on.

[jan251]

check your message box

[HopeinHIM]

Having spent 18 months with out getting any significant help for my 10-yr-old son who continues to display severe to mild Pandas symptoms, I am completely frustrated and "done" with our Kaiser doctor. She brought up the possibility of Pandas at our first visit, however, just as quickly ran as fast away from it as she could. We've tried to deal with the symptoms to some degree, like trying stimulant meds and talking to a therapist. I have to admit that I haven't been willing to go through all the steps she's suggested, such as seeing a psychiatrist and sensory therapist, checking blood for things like high copper. It all just seems ridiculous to me to jump through all these hoops, but perhaps that's why she isn't willing to diagnose Pandas, since we haven't ruled all her other ideas out. Nevertheless, I don't believe she will help us move forward and my son's severe episodes are getting worse and harder to live with. Our family is suffering. We aren't getting much sleep, and my four kids no longer like each other much -- all because of our one child who is sick, very sick.

 

So my question is this, if you have a doctor who won't help with a pandas diagnosis, then what are the steps to take next? I don't know where to start. We are in Denver, so I'm hoping someone out there knows of a doctor who has experience with Pandas instead of looking at me like an over-emotional, internet-diagnosing crazed mom. If so, does Kaiser ever refer outside their docs? Do I ask for that? Can I? Also, what can our family expect to spend if we have to go outside of our insurance? Should we expect that this will be a real financial strain? We are willing to do whatever it takes...I just wondered how to break it to my husband:)

 

I've reached that point I'm sure some of you can relate to...when the disbelieving doctors no longer have a hold on me. I'm done, finished, and moving on.

I am so sorry for the pain! We all can relate. We sold our home and now live in a rental because I am now homeschooling and we are spending big $ on out of pocket docs. You will find that most (not all ) PANS doc do not participate in insurance. Once they start really researching your child and find the actual infection or infections that are causing his issues then different docs may need to be seen. In our case we moved from a PANS friendly neurologist (out of network) to a Lymes specialist and naturopath. Both Out of network! Expect to pay. The supplement's that many of us are on are expensive but all of this is necessary of you expect the child to heal. Many of us see a few specialists at a time because no one doctor knows it all. It's a complicated puzzle to solve. Most of the blood work (not all) however IS covered so that's good news!!!

[nicklemama]

_{My pediatrician was of no help. I took DS to a PANS specialist out of state and paid out of pocket. We found someone in state to help but is not an expert. She doesn't take insurance either. Its all been worth it. My son is doing very well. We had an HMO when this all started. We dumped the HMO when the next insurance election came around. Still, many PANS docs don't take insurance. I can submit the bill after I pay upfront and get 60% back after I meet the deductible. Everyone wants a doc that takes insurance. My husband finally came to the realization that it wasn't happening. I could not get prescriptions covered under the HMO but they are all covered now that I have BCBS. All the lab work is also covered under BCBS. If you can switch out of an HMO, that's my advice.}

[qannie47]

"She brought up the possibility of Pandas at our first visit, however, just as quickly ran as fast away from it as she could. , I don't believe she will help us move forward..."

 

Diagnosing Pans, Pandas is quite different from treating it...

 

"I've reached that point I'm sure some of you can relate to...when the disbelieving doctors no longer have a hold on me. I'm done, finished, and moving on."

 

It sounds like your doc believes in Pandas...however may be stuck on a "one way " approach to treating...

follow your gut.

[pr40]

here is a bit different take: you may want to get on their Point of Service kind of plan so that Kaiser would cover some part of your expenses and get yourself on a waiting list for a PANDAS/PANS dr in your area.

But while you wait, your current dr may not be totally useless. Checking for excess copper is, well, one of the possible things that is causing or exacerbating your kid's problems. With PANDAS kids, it is usually more than one thing.

Or, at any rate, over time your local dr may be convinced that your kid has pandas. I would also show her NIH advice for local drs.

I think that you should make an effort since nothing beats having a local dr. It's simpler and cheaper and you need both when you have PANDAS/Pans kid.

Edited October 28, 2014 by pr40