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Should_be_working

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Reply with quote  #1 
I hope it's ok that I'm a relative newcomer here and have lots of questions. I am so grateful for the support.

I am finding old posts on PANDAS-AN, but nothing recent. Here is my question with background:

About 5 yrs ago (age 9), D got strep and immediately developed a peculiar, compulsive cough, like every 2 seconds she coughed. Pediatrician said there was no organic cause. It eventually went away with hypnosis. I discovered info about PANDAS but pediatrician didn't believe in its existence.

In early January 2015, D had high fever, very sore throat, and tummy ache. Pediatrician said it was viral/flu, did not culture for strep, she got better over about 10 days. In late January 2015, she abruptly became full-blown AN. In December 2014, D was a happy, eager eater, we rack our brains but cannot think of any restricting activity.

Am I grasping at straws to wonder if this is a PANDAS-AN? Does it matter, would treatment be different? Is it something to push pediatrician for--strep cultures/blood tests, and then potentially antibiotics or IVIG (which I only vaguely know about from reading on here)?
IrishUp

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Reply with quote  #2 
SBW - Ask away! It is what we are here for.

I don't think it's grasping at straws at all. If you believe there is a possibility that PANDAS/PANS is at issue, it deserves to be followed up. You report some history that seems to me raises the possibility that this is worth investigating -   preferably with a physician who has not confused "PANDAS" with "GHOSTS". So if you do pursue it, you may have to ask for a referral, or be prepared to be very persistent with your ped. But your d's sudden onset, combined with a previous bout of sudden onset compulsive behavior, really does (or should) raise some suspicion.

Why it will make a difference is that if it IS PANDAS, then anti-biotic administration will help relieve symptoms, and it can help inform preventative measures going forward. 

Nutrition maintenance and behavioral restoration will still be needed; although infection may have triggered the neurological response, it will still take some time and structure to extinguish the behaviors, in addition to whatever medical treatments are needed for the infection.

If you search for PANDAS on the forum, you should find other references, but here is an older review article from the Eating Disorders Review. You can also try printing references out to bring to your pediatrician. Maybe this will affect their beliefs - unlike ghosts, PANDAS has been documented in the clinical literature:

http://eatingdisordersreview.com/nl/nl_edr_12_5_1.html

ETA - some more references:

http://www.pandasitalia.it/pdf/Disordered%20eating%20and%20food%20restriction%20in%20children%20with%20PANDAS%20PANS%202014.pdf

http://link.springer.com/article/10.1007/s40474-014-0025-3


This is a paper describing a higher prevalence of auto-immune disorders, in patients with EDs. There is growing evidence that auto-immune dysregulation can have neurological and cognitive effects in susceptible people.

http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0104845



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IrishUp
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Reply with quote  #3 
I just spent a ridiculous amount of time typing out a reply, and hit a wrong button and LOST IT ALL! Ugh! So now I'll just let you know our dd has PANS (misdiagnosed for many years.) Whenever she is sick, her mental state deteriorates to horribly anxious, suicidal, some rage, begging to die, can't eat. But she has had this for so long that we haven't gotten her back to baseline, although she is making vast improvement, but we don't know if the improvements are from the plasmapheresis or the IV antibiotic for Lyme.

Wanted to mention that unless you go to someone that specializes in this, you'll be chasing your tail. Doctors generally know nothing about it, or they think a strep test can rule it out. That is not true at all - especially with the eating aspect of PANDAS, which is actually under PANS, and it can be caused by other infections in addition to strep, such as mycoplasma or Lyme.
Here are some links that should be helpful. Keep in mind that it's technically "PANS" that disordered eating is under. Everyone uses the term "PANDAS":

Here's a link to the Journal of Child and Adolescent Psychopharmacology, which just recently had a whole issue on PANDAS. This article is specifically about disordered eating in PANDAS patients:  http://online.liebertpub.com/doi/abs/10.1089/cap.2014.0063?journalCode=cap

This is a site for physicians treating PANDAS. If you go to the home page, you'll see a list of physicians on the left side. It's an impressive list of docs, from Stanford, Columbia, Harvard, Yale, etc. It describes PANS on this page:  https://www.pandasppn.org/ppn-pans-diagnostic-guidelines/

Stanford has a PANDAS clinic:  http://www.stanfordchildrens.org/en/service/pans-pandas/diagnosis-and-treatment?

This is a great site, and they are partnered with the National Institute of Mental Health, who has been doing all the research into this:  http://pandasnetwork.org/understandingpandaspans/about-pandaspans/whatispans/

Hope this helps!
IrishUp

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Reply with quote  #4 
Excellent resources, searching, thank you!

FWIW, sometimes if you appear to lose your post, you can click on your browser history and go back a page and recover most or all of what you wrote. Use the history search, not the back browser function.

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IrishUp
Should_be_working

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Reply with quote  #5 
Thanks, searching and Irish. Stanford's PANDAS/PANS clinic is busy until July. I'm begging my pediatrician to do the tests and would basically just like him to try antibiotics, even if it's only a slight chance that it might reduce the length of this hell. The pediatrician himself (not so well informed about FBT or AN) said he thought it looked more like OCD and that the sudden onset was unusual.
Torie

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Reply with quote  #6 

Post 7 (below) from this thread has some information:

http://www.aroundthedinnertable.org/post/emetophobia-vs-anorexia-7225068?pid=1285582857#post1285582857&gsc.tab=0

 

I think Sonshine has some good things to consider.

On the pandas/pans topic, the top researcher at the National Institute of Mental Health for PANDAS/PANS is now directing their research towards PANS induced anorexia. I think this is important research for all of us to be following. Of course full weight restoration is key, but if the onset is sudden, an infectious process could be causing it, and will need to be corrected. I've often thought about how many of you have had your kids weight restored, and they relapsed. Can't help but wonder if some infectious process wasn't causing the OCD that drives most anorexia.

I know a lot of docs aren't willing to look into it, or if they are - aren't knowledgeable in how to test or treat. (No - one round of antibiotics will not usually clear it.) My dd still tested positive for strep after being on 3 different antibiotics. Infectious doc said that isn't possible. But it certainly is with PANDAS kids. The pandas physicians network mentioned above shows that docs from the top hospitals here that HAVE researched it are on board - Harvard, Columbia, Yale, the list goes on and on. Stanford even has their own PANDAS clinic.

My dd had the sudden onset urinary frequency that is a hallmark sign for many PANDAS/PANS kids. Literally overnight. It was awful. Then came the anxiety, OCD, intrusive thoughts, insomnia and finally the eating disorder with exercise compulsion. She was misdiagnosed for too long, and it breaks my heart to think we didn't know what was really happening. Strep was a major issue for her when she was young. She rarely gets the normal symptoms for it, though.

My point is, if caught early, and helped by knowledgeable docs, some of these kids may not go through the horrible hell we have been through.

When researching, it is technically "PANS" that is associated with the anorexia and eating issues. Most people haven't heard of it, so use "PANDAS" although it doesn't encompass the anorexia part. PANDAS is more associated with tics, whereas PANS is not.

https://www.pandasppn.org/ppn-pans-diagnostic-guidelines/
http://pandasnetwork.org/understandingpandaspans/about-pandaspans/whatispans/

 

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kas_US

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Reply with quote  #7 
Are you near Irvine at all? Dr. Rossignol is a great doctor and would definitely take PANS/PANDAS seriously. I'm not sure where he stands on lyme, but I have known several people who have taken their kids that are on the autism spectrum to him, and they have made huge strides under his care.

http://www.rossignolmedicalcenter.com/

There may be other doctors that embrace "biomedical therapies" in your area if you aren't near him. Maybe you could call his office and get a recommendation. Or possibly checking around with those in the autism community for others that are knowledgeable might connect you with someone more local to you. Ask if anyone knows of a MAPS doctor.  You can read more about them here:  http://www.tacanow.org/blog/treating-autism-maps-doctors-dan-doctors/

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Weight restored/Phase II
Stcoop04

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Reply with quote  #8 
Quote:
Originally Posted by Torie

Post 7 (below) from this thread has some information:

http://www.aroundthedinnertable.org/post/emetophobia-vs-anorexia-7225068?pid=1285582857#post1285582857&gsc.tab=0

 

I think Sonshine has some good things to consider.

On the pandas/pans topic, the top researcher at the National Institute of Mental Health for PANDAS/PANS is now directing their research towards PANS induced anorexia. I think this is important research for all of us to be following. Of course full weight restoration is key, but if the onset is sudden, an infectious process could be causing it, and will need to be corrected. I've often thought about how many of you have had your kids weight restored, and they relapsed. Can't help but wonder if some infectious process wasn't causing the OCD that drives most anorexia.

I know a lot of docs aren't willing to look into it, or if they are - aren't knowledgeable in how to test or treat. (No - one round of antibiotics will not usually clear it.) My dd still tested positive for strep after being on 3 different antibiotics. Infectious doc said that isn't possible. But it certainly is with PANDAS kids. The pandas physicians network mentioned above shows that docs from the top hospitals here that HAVE researched it are on board - Harvard, Columbia, Yale, the list goes on and on. Stanford even has their own PANDAS clinic.

My dd had the sudden onset urinary frequency that is a hallmark sign for many PANDAS/PANS kids. Literally overnight. It was awful. Then came the anxiety, OCD, intrusive thoughts, insomnia and finally the eating disorder with exercise compulsion. She was misdiagnosed for too long, and it breaks my heart to think we didn't know what was really happening. Strep was a major issue for her when she was young. She rarely gets the normal symptoms for it, though.

My point is, if caught early, and helped by knowledgeable docs, some of these kids may not go through the horrible hell we have been through.

When researching, it is technically "PANS" that is associated with the anorexia and eating issues. Most people haven't heard of it, so use "PANDAS" although it doesn't encompass the anorexia part. PANDAS is more associated with tics, whereas PANS is not.

https://www.pandasppn.org/ppn-pans-diagnostic-guidelines/
http://pandasnetwork.org/understandingpandaspans/about-pandaspans/whatispans/

 

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Stcoop04

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Reply with quote  #9 
Hi there,
18 months ago our 10yr old son was diagnosed with anorexia and hospitalised. He had a ton of other sudden onset symptoms: OCD's, tics, tourettes, anxiety, low self esteem...etc. We were relieved to receive help for the ED and followed FBT as well as CBT and had 6 months off school.
from the get go we wondered whether our boy had PANS or PANDAS..I still get the 2 mixed up.
We live in NZ and I haven't found anyone with experience with diagnosis but we're trying. Done a ton of research and just out of interest, even though we've been on FEAST before and had asked about PANS with no result I thought I'd search again. And viola...up came these posts.

He's had 2 negative strep titers but these were done some time after the sudden onset.
trying now to get an autoimmune specialist to continue testing for evidence of infection.
We always felt that the AN was a subset of our son's issues.
I think this is a really useful debate and something perhaps more families could consider?
It is still very controversial but they're making inroads all of the time esp DR Susan Swedo at Stanford.



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PuddleduckNZ

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Reply with quote  #10 
I asked for TRK to investigate it for my Son but no one was remotely interested and frankly, looked at me like I was nuts.

There are a few FB groups I follow that document stories of PANS/PANDAS and treatment outcomes. P.A.N.D.A.S. Network is a good one.

We are out of the woods but I continue to follow these out of interest.


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Son 9yrs when he became unwell 2013, ED slide from April 2014, dx at 10yrs July 2014, 2 hospitalisations - dx so many times Behavioural Anorexia, EDNOS, ARFID. FBT from August 2014. Anxiety, Emetophobia. 12.5yrs old now! In recovery, gets better every day with constant vigilance, life returns.
Stcoop04

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Reply with quote  #11 
HI PuddleduckNZ and anyone else who searches under PANDAS or PANS. Im thrilled to hear you're "out of the woods' and hope that is still the case.
Two years since the anorexia diagnosis our now 12 year old son was diagnosed with PANS at the end of last year. Anorexia is one of the symptoms along with comorbidity with many other psychiatric symptoms. PANDAS stands for Paediatric Autoimmune Neuropsychiatric Disorder Associated with Strep.
If you have a prepubescent child, particularly male, with OCD's, tics, tourettes or an eating disorder, it is worth checking/ googling.
Our son still has an eating disorder, which is manageable but his diagnosis enabled autoimmune treatment that rectified his psychiatric issues.
We finally found an autoimmune neurologist at Starship who provided the diagnosis. TRK psychiatrist tagged along for "the ride". he's very conventional and not much help to us really. but hoping this may help some.
 


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PuddleduckNZ

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Reply with quote  #12 
We are still doing great, so great! Still vigilant as heck and eyes wide open but great.

WOW that is awful and amazing all at the same time, I'm so glad you got that diagnosis. I can only imagone how all that went [frown] they really made me feel like an idiot for asking about PANS/PANDAS.

Out of interest what was the treatment for this? I remember reading that it is long term antibiotics?

Either way I am super pleased to hear you found this out and things are improving XX



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Son 9yrs when he became unwell 2013, ED slide from April 2014, dx at 10yrs July 2014, 2 hospitalisations - dx so many times Behavioural Anorexia, EDNOS, ARFID. FBT from August 2014. Anxiety, Emetophobia. 12.5yrs old now! In recovery, gets better every day with constant vigilance, life returns.
Foodsupport_AUS

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Reply with quote  #13 
For those interested in reading this is an excellent summary of PANDAS from NIMH https://www.nimh.nih.gov/labs-at-nimh/research-areas/clinics-and-labs/pdnb/pandas-frequently-asked-questions.shtml#1
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D diagnosed restrictive AN June 2010 age 13.5. Weight restored July 2012. Relapse and now clawing our way back. Treatment: multiple hospitalisations and individual and family therapy.
Stcoop04

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Reply with quote  #14 
Thanks for the link Aus Food Support. Our journey to a PANS diagnosis wasn't easy. 2 years ago it was still controversial and fairly unheard of. Today is a different story as research has been accepted by worldwide medical organisations. It's thought around 1:200 kids suffer from PANS or PANDAS. The difference between the 2 names is due to evidence of infection due to strep. Infections pass through the blood brain barrier, creates T cells, inflammation and a host of psychiatric problems. One of which can be anorexia as happened to our boy. EDANZ nd Starship were amazing and we researched all we could about Maudsley treatment. It helped but an array of OCD's, tics, tourettes and anxieties crippled him. After being in touch with a neurologist and trailblazer in Australia, Dr Russell Dale from Westmead in Sydney, we were referred to an immune neurologist at Starship. So we jumped around TKR psychiatrists who had little to offer our son except anti-psychotic drugs. The neurologist diagnosed our son with PANS and as his case was severe and untreated for years ( all of those years I have been hammering on TKR's door) he was given 3 transfusions of antibodies, IVIG. On the first transfusion the tourettes disappeared. 3 months later he now attends school fulltime and is a very happy boy. He still has an eating disorder with tics associated with food, but his condition is manageable. Maudsley treatment was a real assett for us and we are so grateful to EDANZ for standing by us during our hell times.
After 2 years off school, o
ur boy just came 2nd in 50 metre back stroke in school swim sports yesterday...he was over the moon!

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