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I am in dire straights. My kids have been cycling since Jan. starting with a sore throat, fever...get a neg culture, leads to croup and an increase in symptoms.....OCD anxiety anger rage ....etc.

 

This is the 5th time since Jan. we have changed abx several times......the problem I am having is when I call Dr. B office the push me off. I called Wed. Left message. Thurs. left message. Friday they are closed. Called again today and they told me to wait until my appt on the 31st

 

Suggestions?

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I am in dire straights. My kids have been cycling since Jan. starting with a sore throat, fever...get a neg culture, leads to croup and an increase in symptoms.....OCD anxiety anger rage ....etc.

 

This is the 5th time since Jan. we have changed abx several times......the problem I am having is when I call Dr. B office the push me off. I called Wed. Left message. Thurs. left message. Friday they are closed. Called again today and they told me to wait until my appt on the 31st

 

Suggestions?

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Yes. Call and tell them that you have to speak with someone right away - they do have options to speak with a nurse, I believe NP. You will have to pay the 125.00 for 15 minutes but that person can teleconference with you faster than trying to schedule Dr. B. Also, try emailing the nurse line and telling them that your kids are sick and and that it cannot wait until your appt. w/Dr. B.

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Yes. Call and tell them that you have to speak with someone right away - they do have options to speak with a nurse, I believe NP. You will have to pay the 125.00 for 15 minutes but that person can teleconference with you faster than trying to schedule Dr. B. Also, try emailing the nurse line and telling them that your kids are sick and and that it cannot wait until your appt. w/Dr. B.

 

 

When I email the nurse they tell me to call. They would not give me a consult with the PA. The PA is the one who told me to wait until Tues. I don't find this acceptable. Am I over reacting?

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I cannot say of you are over reacting. What I have done since the start, knowing that Dr. B is terribly busy, is schedule phone consults ever 4 weeks. I keep in touch pretty consistently that way and yes, it gets expensive and we are thrashed financially d/t PANDAS, but it is worth it. It gives me comfort knowing that we are penciled in regularly. Are you anywhere near them? I would also consider call ing daily to see if there are any cancellations and going in person. That way your kiddo can be examined as well. Do you have a ped involved in the infection part of it all? If there is cycling infection, perhaps you can get some answers there?

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You are not overreacting. Patients (or their parents) shouldn't have to pay for phone calls in between scheduled appointments to get a response from their doctor and when they're sick they really should have access to either a sick visit or a phone appointment with the doctor, and they should definitely get a call back from the doctor to help when problems arise. Being terribly busy is no excuse for not properly caring for one's patients. I don't know how many times I've heard the excuse, "They're so or too busy because they're trying to see as many kids as they can." But getting kids through the door, diagnosed, and started on treatment isn't good enough, or fair, if they can't provide adequate ongoing care. That's a sign that they shouldn't be taking on any more. When they don't have time to fully meet their existing patients' needs, then they're seeing too many patients. I think it is especially problematic when they also don't respond to their patients' primary care docs either (we have a problem with that, as well, and our PANDAS doc, or staff, has totally ------ up my kid's ordered treatment and I can't even get them to fix it, which should take five minutes and months later I'm still making calls and nothing's getting done...). Think about it: would you take your child to a general ped or other care provider that was so inaccessible?

 

It appears to me that this is, or is now becoming, a serious problem in the PANDAS community. PANDAS families are desperate for help, so we're often forced to just take what we can get and because the docs are treating our kids we cut them a lot more slack than we would otherwise. Even if the doctors have the best intentions, they're not properly caring for their patients when they practice like this-- and it's unprofessional. If they can't handle their current patient load and/or the demand for new patient appointments they need to bring in a partner or hire more or more competent/better able or trained support staff to help them meet the needs of all of the practice's patients. I would also like to see them coordinate with primary care docs and other specialists and provide treatment plans for their patients that could be followed by their docs at home when a crisis arises.

Edited by thenmama
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I had to walk away from the above-mentioned practice because I could not get the response I needed. I ultimately found an out-of-the way doc that has been very responsive. There are other docs out there beyond the "name-brand" ones.

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You are not overreacting. Patients (or their parents) shouldn't have to pay for phone calls in between scheduled appointments to get a response from their doctor and when they're sick they really should have access to either a sick visit or a phone appointment with the doctor, and they should definitely get a call back from the doctor to help when problems arise. Being terribly busy is no excuse for not properly caring for one's patients. I don't know how many times I've heard the excuse, "They're so or too busy because they're trying to see as many kids as they can." But getting kids through the door, diagnosed, and started on treatment isn't good enough, or fair, if they can't provide adequate ongoing care. That's a sign that they shouldn't be taking on any more. When they don't have time to fully meet their existing patients' needs, then they're seeing too many patients. I think it is especially problematic when they also don't respond to their patients' primary care docs either (we have a problem with that, as well, and our PANDAS doc, or staff, has totally ------ up my kid's ordered treatment and I can't even get them to fix it, which should take five minutes and months later I'm still making calls and nothing's getting done...). Think about it: would you take your child to a general ped or other care provider that was so inaccessible?

 

It appears to me that this is, or is now becoming, a serious problem in the PANDAS community. PANDAS families are desperate for help, so we're often forced to just take what we can get and because the docs are treating our kids we cut them a lot more slack than we would otherwise. Even if the doctors have the best intentions, they're not properly caring for their patients when they practice like this-- and it's unprofessional. If they can't handle their current patient load and/or the demand for new patient appointments they need to bring in a partner or hire more or more competent/better able or trained support staff to help them meet the needs of all of the practice's patients. I would also like to see them coordinate with primary care docs and other specialists and provide treatment plans for their patients that could be followed by their docs at home when a crisis arises.

I agree...

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There are 3 prongs to service-related industry; price, expertise and availability. For PANS, I would add proximity which could feed into price/cost. You will always have to compromise on at least one prong.

 

Let's say you want a facelift. You want the best plastic surgeon, you will pay top dollar and be on a long waiting list; 2 prong compromise. I have read parents complain about getting in touch with every single one of the most frequently used docs mentioned here; drs B, T, K and L. Availability is a compromised prong for all of them based on the "my child's behavior has changed, something is up" scenario. That is a very frequent occurrence and likely perceived as more of an emergency to the parents than the doctors. Now, my child is in the ER and about to be admitted to the psych ward will likely get a prompt return call from all of them, but it sounds like there is a disconnect between what constitutes an emergency between the parents and these specialists; all of them.

 

There are doctors that offer "concierge" care for a price where you are provided a private phone number or email with a guarenteed response within 24 hours. I have not heard of that being offered by any of those 4 doctors, though they might want to consider it. Dr. O'Hara has a system where she will promptly respond to emails but bills her regular hourly rate ($500/hr or 1/4 hr minimum) to read, chart, and respond. They all make it clear that the service they provide cannot substitute the need for a primary pediatric doctor. So this gets tricky for parents when their children are reacting behaviorally to viruses or bacterial infections; common occurring illness in childhood with uncommon reactions.

 

 

It boils down to a supply and demand issue that is only likely to get worse in health care. Let's face it, we all want an expert PANS doc that takes our insurance and is dependably available whenever we have a question or concern. I don't think that realistically exists. And if it does, don't post about it or you will lose your availability prong!

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This problem - and it is a huge problem - also exists in the lyme world. Find someone who offers relief and the line quickly winds around 4 city blocks, with very sick people trying to get appointments 6 months from now, regardless of cost.

 

Jennifer - totally understand your frustrations and while I do get what everyone has said, I still empathize with your situation.

 

There are so few doctors and so many sick kids. What's needed is a greater acceptance of PANS and more concrete treatment protocols - backed by organizations with clout among clinicians. When the IOCDF comes out in support of PANS and antibiotics treatments, going head to head with the AAP in news articles, or devotes web space and research money to the cause, that's huge. When Pandas Resource Network gets Connecticut congressmen to sponsor legislation that could lead to insurance coverage for IVIG - huge. When Pandas Network organizes a west coast symposium - again, huge advances.

 

It's really easy to feel like we're at the mercy of a handful of doctors and you have to accept these limitations because it's all we've got. But in the 4 years I've been at this, the list of treating doctors has grown significantly (there was only one name tossed around when I first came here). The IOCDF, AutismOne and now ILADS conferences have all had Pandas presentations and even entire tracks on the subject. Newspaper coverage - local, regional - even the Wall Street Journal and Discovery Magazine - none of this existed a few years ago. It's the parents who have shifted the landscape - either personally or through their work with organizations.

 

So if this topic gets you p.o.'d, pick your favorite non-profit and support them - either financially or with volunteer time or with your input - tell them what you want them to do. Be willing to help make it happen. The IOCDF is asking for research suggestions - email them your ideas. By making PANS more accepted, by expanding the list of treatment options to include antibiotics, IVIG, ERP therapy but also integrative health and testing (of genetics, methylation, neurotransmitters, thyroid etc), we can broaden the base of doctors willing to treat this. Change happens when the parents push for it.

 

I do think the doctors need to be aware of the growing gap between patient needs and their ability to meet those needs. Not acceptable. And I don't want to hijack the thread and take away from Jennifer's frustrations. But we also need to develop more options. It's outrageous that a mom from Canada needs to get a passport to get help for her kid or that a family already financially strapped needs to pay for a response to an email. On the other hand, I get why this happens. I think at least part of the answer is to recruit more docs and support the organizations that are making things happen.

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I wanted to add a small piece of practical advice. If you have an expert on board, but with limited availability, what might be most helpful for the here and now is to find a local doc who may not have expertise, but is agreeable. So maybe, based on what you've been reading or advised by someone who has already been through this for years, you think an abx change might do the trick.... A local doc who is agreeable can hold you over in between specialist visits. A DAN doc or ASD sympathetic doc can be helpful in this way. I wouldn't expect them to get you IVIG covered by your insurance but if you can find someone local for abx, labs and maybe prednisone once in awhile, you have custom-made a team that is manageable for the situation as it is at the moment.

 

 

That worked for us. Also Kath's suggestion about a monthly standing appt if you are not on his current schedule for treatment is a good idea if it's in your budget. We are likely stopping IVIG treatments and I plan on implementing that strategy.

 

I don't mean to sound callous; I guess practicality can read that way. These problems are becoming more and more systemic in health care even with widely accepted diagnosis. Many are scared beyond belief how the Affordable HealthCare Act will impact our children. One day at a time is all we've got. When you go on 7/31, you should be thinking about and discuss with him how you will make it to your next appointment if a, b, or c happens in between.

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