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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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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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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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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. 13.5yrs 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. 13.5yrs 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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EC_Mom

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Reply with quote  #15 
Casebeth, welcome to this forum. It is truly an amazing place for caregivers of loved ones with ED. 

I suspect that my d's RAN (anorexia) was triggered by PANS, but back then no one we knew believed in it or believed it would make a difference in treatment, and in the end we just had to do the same stuff as everyone else--refeed, with all the attendant tantrums, violence and misery. Now my d is pretty much normal. I would not have believed it possible.

Your gs needs to be medically evaluated for acute malnutrition. The most important tests include orthostatic blood pressure.

I'm not clear what the psych consult was for, was it for ED or for anxiety? What you report about body checks, tantrums arund eating, and exercise compulsion sound a lot like ED. We can't diagnose here, however, because we aren't physicians. 

If it's ED, you will need to be compassionate and firm about feeding. It's rough but there is plenty of hope!! I suggest you start your own thread here to get people's input. 

Keep asking, you are a wonderful grandparent!
Stcoop04

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Reply with quote  #16 
Hi casebeth16 ,
what a clever and determined grandmother you are to have found this site and to have found out about PANDAS and PANS.
Your story resonated so strongly as it is similar to my own with our son.
I've written a little here in the past about PANDAS as i thought it was important for some to follow the breadcrumbs..
I won't go into my son's story in depth but our struggle to find out what was different about him took years and many visits to psychiatrists....he had enuresis for years and oddly when the sudden onset occured, it stopped. 
Events culminated for us when at 10 he came last in a cross country running race. It absolutely decimated him, and it wasn't due to a lack of fitness and more about lack of self esteem (another long story). So he decided he was fat and unfit and decided to exercise. This rapidly became an obsession...even sleep took a back seat to exercise.. He lost weight quickly started refusing to eat and suddenly the dam broke. he became delirious at times, refused to leave the house then the OCD's and tourettes.
After a harrowing period of sheer hell over Xmas, when everyone and every service was on holiday, we finally were extended an arm by EDANZ (we live in New Zealand). With their guidance we found a specialist doctor in our country's biggest city and within an hour our boy was being admitted to hospital with anorexia.
We learnt a great deal about refeeding, the Maudsley method and family based principles, which helped a great deal.
Our son effectively had almost 2 years off school following that time. We realised the eating disorder was one symptom of a greater profile and after the wonders of google I found out about PANS/PANDAS and a parent support group in Australia on facebook. They really changed our lives with information and contacts so I recommend if you haven't done so already find a PANDAS group in your country.
Our son had IVIG treatments late last year and our worlds turned around. He 's 13 now, a bright and cheeky young man who drives us to distraction at times but his OCD's and tics don't dominate his life anymore.
to answer your queries now as we have found it:- 
1. if not already done so: contact a QUALIFIED PANDAS PRACTICIONER
if you're in USA the facebook site PANDAS PARENTS will provide you with so much information (it can be overwhelming at first).
PANDAS NETWORK is another site that provides a list of practitioners in USA as well as a diagnostics trail.
2. The EATING DISORDER SYMPTOMS come first. this is serious as children with rapidly dropping BMI caneffect their internal organs. 
our son's heart was showing deteriorating signs ( it can creep up incredibly quickly)/ dehydration is another presing concern.
so attend to that immediately. CBT is no use while a child is in the throws of an eating disorder (my opinion)....and CBT is another tool, not a be all and end all.
3. UNLESS A PSYCHIATRIST HAS EXPERIENCE WITH PANS? PANDAS KIDS they don't know more than you! We learnt that the hard way in believing so many doubters until we found a paediatric immune neurologist who had dealt with kids like our son before. She gave him an MRI scan ( which may be an option to discount anything more serious), lumbar puncture and a 2 hour physical exam before confirming a diagnosis of PANS and probable PANDAS.
anything by Dr Susan Swedo, Dr Russell Dale and Dr Greene is leading edge.
4. TRUST YOUR INSTINCTS
you'll get a fell for what treatments work for your grandson and when.
Im so pleased that the antibiotics have worked thus far. Not sure what impact they may have had with the eating disorder and in which case see 1.
5. EVERY CHILD IS DIFFERENT

Many eating disorder proponents will find it odd that we may champion antibiotics...? If so I invite them to investigate PANDAS...too much to say.

Its important to recognise any eating disorder as a serious condition. In a way, the why is a secondary response.

I truly hope something in here helps or provides support.
You're welcome to contact me anytime or help if you require any other referrals. 
as we say here...kia kaha...stay stong and with love...arohanui.


 
  


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melstevUK

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Reply with quote  #17 
Casebeth,

firstly - you need a name for the forum, rather than an email address.  You will need to change this. I am sure one of the moderators will help out soon.

Right now, you need to do all you can to alleviate your grandson's anxiety, explain to him that he needs to eat because he has to grow and he needs food to give him energy.  Try and stay calm while he displays all these behaviours and just ensure that he eats and gets the required nutrition so that his food needs are met.

You could encourage him to do deep breathing exercises to counter his anxiety - you and his mum and he could all do this together, so that you are modeling a way to calm himself down.  (Evidenty deep breathing has an effect on the vagus nerve and helps counter anxiety).  You have to reassure him that he is not fat and that the little boy at school was being cruel.  It is also worth explaining that other people are often cruel or mean when they are unhappy - so perhaps that boy was envious of him in some way.  Try and get him to see that the problem was with the other child, who was not being nice, and that it has nothing to do with his weight or how he looks.  

The try and establish a calm routine around eating, which makes him feel safe.  You have checked for PANDAs and it is negative - so don't worry about that right now.  Just keep him eating, because the lack of nutrition can quickly spiral into full blown anorexia, even at his young age and you have to try and prevent this immediately.

This all seems to have been triggered by an extreme anxiety response.  Perhaps you can help him with skills, so that he can feel ok around being at school.  

While you wait for appointments - try and stay calm, appear confident, and reassure him that you love him, you will look after him, but that he needs to understand that eating is necessary and enjoyable.

Does he have favourite foods or dishes that you can tempt him with?  Can you take him out for favourite foods, even if only ice cream?  The important thing is to interrupt this extreme fear of eating and get it put back onto an enjoyable, necessary and normal activity.





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Torie

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Reply with quote  #18 
It sounds like you are really a fab grandma.  He is so lucky to have you.  I'm really glad to hear that you were able to arrest the weight loss so quickly - three cheers for that!!!

Quote:
Originally Posted by casebeth16@gmail.com
This boy looks at the sugar and fat in things.  


I'm not sure if you mean that literally, but he shouldn't be reading the nutritional information.  If he asks, you might tell him something like, "I don't talk about ingredients."

Hang in there.  xx

-Torie

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