screaming outloud and no one hears

[tired mom]

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!!!

[GatsMom]

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!!!

 

I'm so sorry. I have a teen, too, though his first exacerbation was at age 8. I think many, if not all, of us know the feeling of running your head into a wall in an attempt to get help for your child. Have you considered contacting Dr. T or Dr. K? My son is a patient of Dr. T's and while he's sometimes tough to get a hold of, he's very dedicated to these kids and you won't have to work to convince him of the impact or severity of her symptoms.

 

Gat's mom

[peglem]

I'm so sorry to hear this. Sorry I understand exactly how you feel. Sorry so many of our kids and us are going through this. But, what I think (and clearly you've not given up or you wouldn't bother asking questions here) is you'll keep screaming and eventually someone will help you...Dr. L is the only Pandas expert we've seen..and that was 2500 miles one-way for us.

 

I've got a 15 yo girl, w/ heaps of neuro problems, non verbal...nobody can really even evaluate her OCD...but history of behavioral exacerbations linked to chronically positive strep tests (not even sure we can call them infections anymore as nobody tested for strep when she was symptomatic @ age 2-5 yo). Anyway, we're currently arranging for IVIG w/ local immunologist (based on Dr.L's recommend). But, since the pediatrician has been getting more aggressive w/ antibiotics...my daughter is doing much, much better. I have no idea what "healed" would look like, but know improvement when I see it. My priority goal is to stop the aggressive, fight or flight, ragey meltdowns...those have been vastly improved the last 6 weeks, just with the increased antibiotics. This is more than any psych med has ever done for her (and we've tried a ton of those, believe me). I've no illusions that my daughter will ever be "normal", she's just lost too much to this, but she will be better, more functional than she is now.

 

So, keep going...you will get help for your daughter- try not to let these "bombs" get you too down.

The other thing is, though, with your daughter being 17, you, as a parent have limited time to be in charge of this, unless your daughter allows you to be when she turns 18, so its critical to get that relationship going with the doctor who really can and will help. (at 15 yo, I feel the clock ticking for my child, too, although, I'll probably be her legal guardian for as long as my own health/life lasts).

[tired mom]

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!!!

 

I'm so sorry. I have a teen, too, though his first exacerbation was at age 8. I think many, if not all, of us know the feeling of running your head into a wall in an attempt to get help for your child. Have you considered contacting Dr. T or Dr. K? My son is a patient of Dr. T's and while he's sometimes tough to get a hold of, he's very dedicated to these kids and you won't have to work to convince him of the impact or severity of her symptoms.

 

Gat's mom

Thanks for the understanding. My daughter's first exacerbation was at 10. I just took my son to the dentist and I was reading a mag. there and came across an article on Pandas. It said 37% of children will not have elevated aso titers. That is a large percent.

[tired mom]

I'm so sorry to hear this. Sorry I understand exactly how you feel. Sorry so many of our kids and us are going through this. But, what I think (and clearly you've not given up or you wouldn't bother asking questions here) is you'll keep screaming and eventually someone will help you...Dr. L is the only Pandas expert we've seen..and that was 2500 miles one-way for us.

 

I've got a 15 yo girl, w/ heaps of neuro problems, non verbal...nobody can really even evaluate her OCD...but history of behavioral exacerbations linked to chronically positive strep tests (not even sure we can call them infections anymore as nobody tested for strep when she was symptomatic @ age 2-5 yo). Anyway, we're currently arranging for IVIG w/ local immunologist (based on Dr.L's recommend). But, since the pediatrician has been getting more aggressive w/ antibiotics...my daughter is doing much, much better. I have no idea what "healed" would look like, but know improvement when I see it. My priority goal is to stop the aggressive, fight or flight, ragey meltdowns...those have been vastly improved the last 6 weeks, just with the increased antibiotics. This is more than any psych med has ever done for her (and we've tried a ton of those, believe me). I've no illusions that my daughter will ever be "normal", she's just lost too much to this, but she will be better, more functional than she is now.

 

So, keep going...you will get help for your daughter- try not to let these "bombs" get you too down.

The other thing is, though, with your daughter being 17, you, as a parent have limited time to be in charge of this, unless your daughter allows you to be when she turns 18, so its critical to get that relationship going with the doctor who really can and will help. (at 15 yo, I feel the clock ticking for my child, too, although, I'll probably be her legal guardian for as long as my own health/life lasts).

you r exactly right about having limited time. Thanks for your words of encouragement.

[thereishope]

Okay.........nurse practioner did interviews.........okay..........nurse practioner called with results..........and what was itemized on your bill? Nurse practioner? I'm thinking not.

 

Heavy sigh. Did they give you a diagnosis? No mentioning of antibiotics? I think I'm confused as you. Can you go more into detail what the nurse practioner said when she called?

 

It may be time to chalk this one as experience and see someone else.

[tired mom]

Okay.........nurse practioner did interviews.........okay..........nurse practioner called with results..........and what was itemized on your bill? Nurse practioner? I'm thinking not.

 

Heavy sigh. Did they give you a diagnosis? No mentioning of antibiotics? I think I'm confused as you. Can you go more into detail what the nurse practioner said when she called?

 

It may be time to chalk this one as experience and see someone else.

No I did not get a diagnosis. I had documented proof of symptoms improving on antibiotics. One was written by a psyc who said Pandas is very plausible in this case an should be looked into more. THAT WAS 4 YEARS AGO. When the nurse practioner called and said dr. n does not think it's pandas I had alot of Questions which she responded with i went over everything with the dr. Does she fit the criteria yes to a tee!! did I take all the sore throat records with me yes what stunned me the most is when she didn't seem to think rages and anxiety were connected with Pandas. As far as your question about the bill Part one is patient intake part two is evaluation and feedback (does not accept insurance) I still can not believe I never meet this Dr. nor did she call me with any type of results. I feel so depleted.

[nomoz]

Okay.........nurse practioner did interviews.........okay..........nurse practioner called with results..........and what was itemized on your bill? Nurse practioner? I'm thinking not.

 

Heavy sigh. Did they give you a diagnosis? No mentioning of antibiotics? I think I'm confused as you. Can you go more into detail what the nurse practioner said when she called?

 

It may be time to chalk this one as experience and see someone else.

No I did not get a diagnosis. I had documented proof of symptoms improving on antibiotics. One was written by a psyc who said Pandas is very plausible in this case an should be looked into more. THAT WAS 4 YEARS AGO. When the nurse practioner called and said dr. n does not think it's pandas I had alot of Questions which she responded with i went over everything with the dr. Does she fit the criteria yes to a tee!! did I take all the sore throat records with me yes what stunned me the most is when she didn't seem to think rages and anxiety were connected with Pandas. As far as your question about the bill Part one is patient intake part two is evaluation and feedback (does not accept insurance) I still can not believe I never meet this Dr. nor did she call me with any type of results. I feel so depleted.

 

It is so ridiculous for this Dr. to dismiss this case, and not look into it further. As far as your last comment, I think what she was getting at in regards to your bill was whose name appeared on it? The doctor charged you for "her" services, and yet you never even met with her, and you cannot even be sure how much info of yours she was aware of -yet she is the one charging you.

Does anyone know how to get in touch with Dr. T? I've heard many positive things about him - maybe he can help you.. (and me!)

[EAMom]

Ughhh...that sounds terrible!

 

I would say the big 3 PANDAS docs/experts that are used on this forum are Dr. Trifiletti (NJ--pediatric neurologist), Dr. Latimer (DC area--ped. neurologist), and Dr. Kovacevic (sp?) (pediatrician--Chicago). I would strongly urge you to contact 1 (or more) of these docs.

 

Dr. T: http://www.site.neurokidsr.us/Home.html Has a PANDAS only practice. Doesn't have access to IVIG/plasmapheresis (but perhaps you could get it locally per his recommendation???). Uses lots of abs to start (and pred). Great guy...posts on this forum. He is extremely interested in PANDAS and I can guarantee you will not be bumped off to a nurse practitioner. I heard her even even picked up a parent and kids at the train stop!!

 

Dr. K: uses lots of IVIG

http://www.webpediatrics.com/pandas.html

You can send him a brief e-mail and he will respond (no charge). There is a charge for a phone consult.

 

Dr. L: seems to favor plasmapheresis over IVIG. Also will try starting with abs and steroids.

Does seem pretty busy, so may be harder to get in contact with or get an appointment with her vs. Dr. T. or even Dr. K. but she would be the one to try if you want plasmapheresis. You can look over old posts. Many on this forum have seen her as well.

 

I hope this helps!

[EAMom]

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?

[memom]

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

[tired mom]

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?

The np told me to get aso titer and dnase b bloodwork. Where do you get CaM kinase ll testing done. This particular place said they did not know of a lab to have it done.

[memom]

Here is a link to the discussion about the test and how to contact Dr Cunningham to get a kit for the test.

 

 

 

http://www.latitudes.org/forums/index.php?...unningham+tests

 

Ellie

[memom]

Tired mom,

 

I just read your note on the exorcist post about the recent outburst being triggered by mycoplasma infection. Pandas relapse can be triggered by this bug. Others on this forum have had this. Augmentin will not work against Mycoplasma I don't believe but Zithromycin will. Dr. T. has some special interest in Mycoplasma as a trigger. Consider having a consult with him.

 

Ellie

[ajcire]

Unfortunately I think that the publicity that dr. got due to the "publication" does not correlate with her actual pandas experience.. at least from what I have read here.

 

That is so unfortunate... I would honestly demand to speak to the dr. herself.. if only to tell her that you made an appt to see HER. Then I would move on to a more experienced doctor.

 

My heart goes out to you for going through all that.... It's not about if the actual diagnosis for your daughter is pandas or not... it's about that should never happened the way it did.

 

 

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?

The np told me to get aso titer and dnase b bloodwork. Where do you get CaM kinase ll testing done. This particular place said they did not know of a lab to have it done.