Excellent article on severe PANS case/Stanford Clinic

[PowPow]

http://www.mercurynews.com/health/ci_25600426/misdiagnosed-bipolar-one-girls-struggle-through-psych-wards

 

 

 

[nicklemama]

Really good article. Now, if Stanford would expand their clinic. I wonder if they also treat PANS and not just strep triggered illness?

[MomWithOCDSon]

Really good article. Now, if Stanford would expand their clinic. I wonder if they also treat PANS and not just strep triggered illness?

When I clicked on the link above, first I got a weird greeting card site, and then what I got was a video link that popped up in the middle of the greeting card site with a story called "Hope for Tessa." It must be related to the story you've referenced because it walked through the original bi-polar dx of a teen named Tessa, and then how doctors at Stanford diagnosed her with PANS and treated her successfully. I got no written article, though. Weird.

 

And Nicklemama, in the video, they specifically reference PANS, and Dr. Franken? (female physician at Stanford) noted, in her own interview, that PANS was not fully understood at present and carries with it a broad definition, and that they think a number of medical issues may be behind what were formally understood to be strictly psychiatric disorders.

[PowPow]

I get the article when I click it, even from a different computer, I am able to read the article. The video is part of it, though.

Sorry you can't read it.

Dr Frankovich is the rheumatologist mentioned.

Edited April 22, 2014 by powpow

[qannie47]

Thanks Powpow. I just sent it to several people, including school and brother who's son was dx bi-polar about a year ago. He is not very open to everything I have been trying to share with him, so maybe this article, which speaks to bi-polar, will open his mind....

[MaryAW]

Great article! I am so sick of people saying this illness is "controversial." I wish I had a video of my daughter. she had an allergic reaction and went absolutely crazy. I gave her a dose of Zyrtec and within an hour, she was about 80 - 90% back to normal. I wish I had videotaped it to show to the skeptics. It was fascinating! So quick, and yet such an example of her immune system causing this mental reaction, and the allergy medicine quickly relieving her.

[CJsMom]

DS was misdiagnosed with bi-polar disorder in 2009. He was "treated" by a child psychiatrist and after many prescription drug trials his condition did not improve at all. What we had was a drugged out son from 9-11years old. He was sttill raging, suicidal/homocidal, unable to function at school, extreme tics, OCD, etc. Through what I believe to be divine intervention, a stroke of luck and being in the right place at the right time, I met Dr Kiki Chang at Stanford. After a short conversation he asked me if CJ (ds) had experienced a sudden and abrupt onset of tics and OCD. When I told home he had, following an extreme case of the H1N1 virus, Dr Chang told me to call the PANS Clinic immediately. Very shortly after this CJ was being seen by Drs. Chang and Frankovich, who later dx'd him w/ PANS. He has been a patient for 19 months. Unfortunately, CJ has not improved drastically. He still has flares when he has a bacterial infection or severe allergies. This time of year is especially difficult for him. I highly recommend the PANS clinic and Drs Chang and Frankovoch.

[PowPow]

cjsmom,

What tx is your son getting, may I ask? I am sorry he is not much better.

My daughter was in the same place symptom wise and now at 16 and 5 1/2 years post onset - after pex 2x, lots of ivig, steroids , cellcept, other meds and rituximab , she is doing so much better. The appropriate (PANS/AE) tx did not start until 2011, really and did not get consistent and aggressive until 2013. So it has taken a long, long time. Her doctors say 18-24 months for major improvement once tx starts.

She is not treated at Stanford (we are on the opposite coast).

Hang in there.

[BradsMom]

Hi I am a new member but not new to PANDAS. Our son is now 17, turned psychotic on 11/9/05, and has never been the same since. The most aggressive treatment he had was 5 IVIG infusions in 2007. It took more than a year but I estimate he improved by about 50%, only to regress every year, particularly in the Spring (allergy season). I started to second guess myself and listened to psychiatrists, drugging him up for 8 years and turning him into a walking zombie. None of the 30+ psych meds help. Not until the NE Pandas conference did I realize my gut was right all along - it really is autoimmune! He has become physically aggressive, anorexic, won't shower or bathe, has wild chorea/tics, and brain fog so thick he can't make a decision to save his life. We are desperate! Good news is, we go to Georgetown next week for Rituximab infusion. Is there a forum/resource for severe cases, like ours? He went from PANDAS to PANS to autoimmune encephalitis and looks like he is dying right in front of our eyes....

[PowPow]

Aealliance. Org

 

My daughter had rituximab last month.

I am so glad you have gotten this arranged. Our daughters' were treated at georgetown, but we did not get this far then.

Now, Duke provides excellent , thorough and successful care.

My older daughter is 16- sick since 2008.

Dont lose hope. She was incredibly severe. (Psychosis & more)

Tonight she is at a dance with friends and goes to school!

Autoimmune tx has been a miracle for her.

She also has spiraled every spring since onset.

If you want to talk more, feel free to pm me. Sounds like our kids are similar. I am in Virginia.

Edited May 3, 2014 by powpow

[EAMom]

CJsMom and Bradsmom,

 

You might consider getting an evaluation at Hillpark with Amy Smith or Dr. Schweig. I just wonder if your son might have an un diagnosed tick borne infection. LPCH is great (we go there) but is not Lyme savy (our good friend who isn't PANS but had fatigue, pain, brain fog) went undiagnosed there for well over year until the parents finally went to a LLMD (had babesia, Lyme, erilichia, mycoplasma). LPCH (not the PANS clinic per se) were giving her a diagnosis of "post viral chronic fatigue syndrome" (which really has NO medical treatment)..and LPCH balked at any Lyme/tick testing despite lots of camping (the child was 13-14 at the time, the same docs insisted on HIV and pregnancy testing.

 

Amy Smith NP (at the recent Northern Ca PANDAS conference) said that 30% of their patients turn out to be CDC positive for Lyme. I would imagine even more are positive yet don't meet the strict CDC criteria.

 

I believe Bartonella is one Lyme co-infection that is known to cause rages...

 

Also if IVIG doesn't "stick" that makes me think Lyme (or another latent infection)

Edited May 4, 2014 by eamom

[searching_for_help]

Since I'm not very savvy on how to do things, is there a way to move CJsmom and Bradsmoms post to a different thread? I think more people would see their posts and offer advice if it were separate from the Stanford article.

 

Bradsmom and cjsmom - would you please post the things your son's have been tested for, such as bacteria, viruses, yeast, H.pylori, clostridia, deficiencies, etc.? We might be able to be of more help if we know what's already been ruled out.

 

And please tell your sons to hang in there. This is not their fault, and I know they suffer horribly. Our daughter has had 10 horrible years, but she is finally starting to improve some, not due to therapy or psych drugs, but due to treating her mulitiple physical issues. (Yeah, with immune dysfunction you can get LOTS of issues...) We personally are dealing with viruses (she's on an antiviral), mycoplasma (she's on Doxy), results showing immune system dysfunction, treating clostridia, yeast, and just finished treating H. Pylori. (This all started with strep...) Also, it looks likely that we might be treating for Lyme, but we'll see where she is after all this treatment she's currently on. IVIG did not help our dd, although has been helpful for many on here.

 

Don't give up, the parents on here are amazing, and can help guide you. You just need a doc willing to try some things.