screaming outloud and no one hears

[peglem]

Where do you get CaM kinase ll testing done. This particular place said they did not know of a lab to have it done.

 

I just wanted to say that I think any physician who is current on PANDAS research will know at least what this test is. Maybe that could be a litmus test for if doctors know enough to be worth your time and money- just ask if they are familiar with the Cunningham test.

[EAMom]

The CaM kinase ll is done through Dr. Madeleine Cunningham (she's a phD researcher, not an MD) at the Univ. of Oklahoma. Here is a thread on that test and contact info:

http://www.latitudes.org/forums/index.php?...art=#entry33366

 

The cost of the test is now $400 (although that is tax deductable, considered a "donation" to the univ.) since the PANDAS part of Dr. Cunningham's research isn't funded.

 

What was the rationale for running the ASO and anti-danse b ?? Just curious...if they were high was this doc going to do a turn-around and say your dd does have PANDAS after all??? Lots of PANDAS kids have low anti-dnase b / aso...mine certainly did (despite testing at the "correct time" AND having positive cultures AND PANDAS severe enough to require hopsitalization). ASo/anti-dnase b are only a small piece of the puzzle...even Dr. K. said in a recent radio intereview that he gives these tests (aso/ anti-dnase b ) very little weight in diagnosing PANDAS.

 

IMO by only recommending ASO/anti-dnase b... this doc has demonstrated a very rudimentary understanding of PANDAS and should not be calling herself a PANDAS specialist or expert.

[ajcire]

Based on what I gathered from "the book" unfortunately it is not at all surprising that this dr. would be asking for titers tests and basing things on that.

 

 

The CaM kinase ll is done through Dr. Madeleine Cunningham (she's a phD researcher, not an MD) at the Univ. of Oklahoma. Here is a thread on that test and contact info:

http://www.latitudes.org/forums/index.php?...art=#entry33366

 

The cost of the test is now $400 (although that is tax deductable, considered a "donation" to the univ.) since the PANDAS part of Dr. Cunningham's research isn't funded.

 

What was the rationale for running the ASO and anti-danse b ?? Just curious...if they were high was this doc going to do a turn-around and say your dd does have PANDAS after all??? Lots of PANDAS kids have low anti-dnase b / aso...mine certainly did (despite testing at the "correct time" AND having positive cultures AND PANDAS severe enough to require hopsitalization). ASo/anti-dnase b are only a small piece of the puzzle...even Dr. K. said in a recent radio intereview that he gives these tests (aso/ anti-dnase b ) very little weight in diagnosing PANDAS.

 

IMO by only recommending ASO/anti-dnase b... this doc has demonstrated a very rudimentary understanding of PANDAS and should not be calling herself a PANDAS specialist or expert.

[EAMom]

Where do you get CaM kinase ll testing done. This particular place said they did not know of a lab to have it done.

 

I just wanted to say that I think any physician who is current on PANDAS research will know at least what this test is. Maybe that could be a litmus test for if doctors know enough to be worth your time and money- just ask if they are familiar with the Cunningham test.

 

Wow! Great "litmus test" idea Peglem!

[tired mom]

Dear Tired Mom,

 

My heart goes out to you during this frustrating journey. Many of us on this board have walked in your shoes, hit dead ends, had false starts and dashed hopes. I am here to give you hope and resolve not to stop until you turn over every stone in the way between you and your daughters recovery. Listen to your gut. Trust your instincts. Trust the patterns of behaviors that don't fit with a diagnosis of anxiety only.

 

To answer your question, yes, there are families on this board who are just now getting treatment for their adoloscent or adult children. My daughter 17yo definate pandas with milder symptoms since early middle school (not diagnosed just wondered if what we were seeing might be outgrown with time), followed by extreme worsening after series of strep infections resulting in incapacitating OCD, inability to read or write, barely able to get through with 2 credits in her Junior year of high school. Pandas suggested at this time but given information that the best route of treatment was mental health with ssri's and CBT (eversion/response/therapy). We wasted about a year getting nowhere, when she had another strep infection at the end of her Junior year and I watched as her symptoms became even worse. At that time, I changed tacts, read every post on this board from the beginning, took notes, and mustered the courage to follow my instincts and find someone who has treated hundreds of these kids. I initially did a phone consult with only one lab test in hand (strep titers) that had been drawn almost a year earlier, and our story. The physician was more interested in our story than her ASO or Anti D Nase B, but did put us on a path of discovery that helped us to become absolutely sure about the diagnosis. Please consider doing the Cunningham test (yes, out of pocket $400.00), but really puts validity to your suspicioun of Pandas (when clearly abnormal) and is helpful for physicians in getting clarity about diagnosis.

 

When you are able to with confidence say Pandas, there are few treatment options that really help. Again, spend the afternoon, read every post and reply's on this forum.

 

Rage and anxiety absolutely are seen with some of these kids with Pandas as are things like disorganized mental processing, ADD, depression, dilated pupils, OCD, tics, choriaform movements, mental fogginess, black circles around eyes, sleep disturbances, fatigue.....

 

I also have a 20yo son that has what looks like adolescent onset starting 16yo. Primary symptoms anxiety, stomach pain, rage, mental fogginess, fatigue, depression (all sudden onset 4 years ago not responding to 5 different ssri's, two psychiatrists, two psychologists) now being treated by Dr. K. in Chicago with improvement on antibiotics (two months now) and a steroid burst. He has improved in all areas except the mental processing (better but not good yet), and anxiety (also better, not good enough yet). No real hx strep (though sister with Pandas and many strep infections) but significantly elevated titers and elevated Cam Kinase (Cunningham test).

 

Keep the faith. Find someone who will listen. Please consider Cunningham tests (takes weeks to get results, can do without Dr. order) and most of all, listen to your gut. I have seen improvement with both of my kids. Dr. T., Dr. L., Dr. K. all good choices. They get Pandas and they get that there is no one perfect presentation. These guys are still in the process of defining this disorder.

 

PM me if you need more information. At the very least, ask your Pediatrician or FP md to start her on a month trial of antibiotics, (Augmentin XR twice daily or Augmentin 875 twice daily, or Zithromax 500mg daily) while you are finding another physician for a second opinion.

 

Good luck, keep the faith,

 

Ellie

You get it You really Do. I'm crying as I'm this writing this because we all know that feeling of not knowing what to do next. How do you get Cunningham tests done. Again, Thank You.

[EAMom]

btw...if you are doing the Cunningham tests, it okay to start abs but wait on steroids since that could affect the CaM kinase ll test results.

[momto2pandas]

Unfortunately, this is not the first time I've heard this story about this doc

 

I must say, I am completely blown away that you paid $1000 and did not even get to see the doctor. That is unbelieveable! Were there any recommendations for addtional testing? CaM kinase ll? Immune work-up? Lyme?

 

Here is a basic flow chart for diagnosing PANDAS http://www.latitudes.org/forums/index.php?showtopic=6688

 

Here is a list of FAQ:

http://www.latitudes.org/forums/index.php?showtopic=6266

 

I'm curious....what was this docs (nurse's) rationale for saying your dd doesn't have PANDAS?

[mama2alex]

I'm so sorry this happened. That's just unbelievable! I agree - go straight to one of the experts (this doctor is not one of them) - Dr. Kovacevic, Dr. Trifiletti, or Dr. Latimer. Don't give up.

 

You also might consider writing the doctor a letter telling her how unhappy you are with how you were treated and the results (or lack thereof). It's possible she's not even aware of how things unfolded for you. Just because the NP told you she consulted with the doctor, doesn't make it so.

 

Also, I hope you told the person who recommended this doctor. You might also let Beth Maloney know - I believe this doctor is still on her list of PANDAS docs and I know they have a personal relationship, but maybe if she hears enough complaints, she'll take her off the list. That would save other parents the time, money and frustration in the future.

[reactive]

Recently, I was advised to take my 17 year old daughter to a "professional" who "specializes" in PANDAS. I will not mention any names, but I will say that she supposedly helped someone's son.. this was publicized recently in a book form... Got the picture?

Ok.. first appointment. Documentation 3 hours. Daughter seen alone (aunt and uncle accompanied her)- daughter is dillusional when it comes to family... but somehow her "word" was taken as gold.

DID NOT SEE DR. SAW NURSE PRACTITIONER.

Second appt. Parents only.

2 hours with NURSE PRACTITIONER. Went over same info. that was given via phone in prior appt. (Could not be in same room with daughter - she has meltdowns, so Mom was present first appt via phone)

 

Both these appointments consisted of compiling my daughter's medical history, and her exaccerbations coinciding with illness. Did my daughter have many strep infections as a child? Yes. Did she have her tonsils removed? Yes. Did she exhibit OCD symptoms on and off? Yes. Were her exacerbations stronger every time around? Yes. Did she have motor or verbal tics? Yes. Did she ever rage? Yes.

To name a few...

 

After compiling all this data, driving 3 hours, spending the nite in a hotel room because appt was rescheduled due to storm, and getting my hopes up, again, that someone with a specialty in this area would take interest in my daughter and actually want to help her, I received a phone call today, a week later, from the NURSE PRACTITIONER, who suggested prozac!!!!!!! Not sure, they say about PANDAS, but my daughter was on many meds of this sort, and only became more symptomatic.

She didn't seem to see a correlation between rages and PANDAS (?!!) and pretty much, after $1000, not once ever meeting this Dr., I am left right where I started...

 

Has anyone else had experiences similar? And, does anyone know of cases diagnosed after child is a teenager?? Any successes?

 

Please help. I am so disheartened.

Thank you!!!

OK....I guess as someone else has said maybe this will just have to be a learning experience...but WOW. Traveling three hours and not seeing the physician? I do not understand. Did you ask when you were all there where is the doc and ask why you did not get to see her? Now, I am a nurse practitioner (OBGYN) and I also noticed on Dr. T's site that he has a nurse practitioner...it may be his wife or they may be related but I'm not sure as they have the same last name. But it seems to me, in many specialty practices the NP can be used to get the history and even initial exam, ect. but then the doc still sees the patient. Now, in my practice, I am pretty independent, see my own patients, and bill for my own services. But what I do is not exactly rocket science, per se, I see uncomplicated patients and any whiff of a big problem I refer out. State laws and insurance issues dictate a lot of that. If this place did not take insurance, and depending on the laws of the state, the NP could absolutely bill for his or her services. Medicaid and Medicare give NP's provider numbers. Private insurers vary, some will credential and let the NP bill directly; and for those that don't the practice bills under the doc even though the doc did not see the patient ("incident to" services). Lesson learned, you need to know what you are paying for.

If an insurance company is involved you have more clout after the fact, in a way, to appeal your charges. With this situation, you may have to just pay...I have worked in health care for a long time so I can imagine if this were me I would be demanding to see the physician at that first encounter...I can picture how hot headed I would be if this happened to me...and I am a NP.

Oh, and by the way, Medicaid and Medicare reimburse NP's at 85% of the physician rate. Seems to me you should at least be getting a discount!

[melanie]

Hi

 

Ifyou see Dr T you will see Dr T only!!He will spend the time needed and will help !!Email him ,thats the easiest way to contact him or leave a message on his machine.He will call you back.He will listen and he will try with all he can to help.

 

Good luck

 

Melanie

[thereishope]

I'm going to refer to that $1000 tab you now need to pick up. That money needs to go to a doctor that will actually see, speak, and work with you. That just isn't right.

 

When you made the appt, you made it with the knowledge it was with the doctor, correct?

 

Do you have it in you to write up a letter stating how you were misled when you made the appt, go into detail about what happened,and mail it along with the bill to billing,the doctor, and the the institution she bills through (perhaps a hospital?)?

 

That's just too much money to say "oh, well". Maybe they will at least adjust the billing.

[reactive]

I'm going to refer to that $1000 tab you now need to pick up. That money needs to go to a doctor that will actually see, speak, and work with you. That just isn't right.

 

When you made the appt, you made it with the knowledge it was with the doctor, correct?

 

Do you have it in you to write up a letter stating how you were misled when you made the appt, go into detail about what happened,and mail it along with the bill to billing,the doctor, and the the institution she bills through (perhaps a hospital?)?

 

That's just too much money to say "oh, well". Maybe they will at least adjust the billing.

This makes me mad too. But, if this physician has her own practice, she bills though her own business. I will ask some of my peeps in the business side of my clinic how this can be challenged...if a patient does not pay their bill, they can be sent to collections...

[EAMom]

Also, I hope you told the person who recommended this doctor.

 

Absolutely! Great idea! Even if your complaint doesn't changes things, at least they've been told and eventually (if more people think to complain) the referrals will stop.

 

You might also let Beth Maloney know - I believe this doctor is still on her list of PANDAS docs and I know they have a personal relationship, but maybe if she hears enough complaints, she'll take her off the list. That would save other parents the time, money and frustration in the future.

 

I wish that it were true. Unfortunately, Beth is a pretty tough nut to crack (she herself still seems pretty fixated on "ASO is a test for PANDAS", and in her mind this doc is already a wonderful PANDAS doc, up on a pedistal, b/c she helped her son!) But heck, it's worth a try ...

[tired mom]

I'm going to refer to that $1000 tab you now need to pick up. That money needs to go to a doctor that will actually see, speak, and work with you. That just isn't right.

 

When you made the appt, you made it with the knowledge it was with the doctor, correct?

 

Do you have it in you to write up a letter stating how you were misled when you made the appt, go into detail about what happened,and mail it along with the bill to billing,the doctor, and the the institution she bills through (perhaps a hospital?)?

 

That's just too much money to say "oh, well". Maybe they will at least adjust the billing.

This makes me mad too. But, if this physician has her own practice, she bills though her own business. I will ask some of my peeps in the business side of my clinic how this can be challenged...if a patient does not pay their bill, they can be sent to collections...

stupid me paid already

[airial95]

I'd probably still write some sort of letter to the practice - it's worth noting your complaint in writing. If the NP didn't actually consult the Dr, then it will at least bring it to her attention. If they're using a billing company, I would cc them too.

 

You may also want to look into any regulatory board in the state that would investigate any fraudulent billing practices. If you were scehduled to see the Dr and paid to see the Dr, they might be interested in something like that.

 

Just a thought.