Wednesday 9 October 2013

A very different and personal blog post today...

..spreading awareness of a disorder called P.A.N.D.A.S  Paediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal also known as/similar to P.A.N.S - Pediatric Acute-onset Neuropsychiatric Syndrome

Today, 9th October in the USA is National P.A.N.D.A.S/P.A.N.S Awareness Day in many states.  For months, US parents and caregivers who currently have or have had a child/children affected by this disorder have been lobbying their local representatives to get this day of awareness recognised.  So far at least 22 States have been successful in getting the 9th Oct declared as P.A.N.D.A.S/P.A.N.S Awareness Day. 

This is the hardest post I have ever written. Because with each word I type it brings back every.single.memory of what we as a family went through 2 years ago in the USA.  For us the devastating effects of this disorder only lasted 6 weeks from start to finish, we were lucky...very lucky.  Many families go through this for years, sometimes it's months or years before they even get a diagnosis, but with further research and awareness we are all hoping that children can be diagnosed quicker and therefore lessen the degree in which their brain has been affected and has to heal from it.

So what is it and why am I talking about it?  Well truth be told I should have been talking about it a long time ago and I should be more active in helping the cause as this has affected us personally. But  information here in Australia is scarce and awareness may not be anywhere near as big as in the States.  So that's why today we are dedicating our blog post to P.A.N.D.A.S Awareness and telling our story.

We moved to the USA in November 2010.  Sasha was 6.5 years old and was starting in the middle of Grade 2; she went to a typical all American School starting in January 2011.  She had always loved school but something was different here, she didn't seem to enjoy going and had huge separation anxiety issues, something we had never seen her have before...ever!  Of course we had just moved from the other side of the world leaving all our friends and everything she was familiar with, and she had skipped half of the year too so we put it down to the stress of the move and schooling being very different.  It continued for the following few months, lessening slightly, but she never seemed truly happy there.  It baffled us, but as we were not entirely happy with the school system anyway we made the huge decision to home school her from August that year for the rest of our time in the USA.  We pulled her from school just before her 7th birthday in May and went to the UK for 6 weeks for summer.  In the run up to all this happening we had noticed that she was washing her hands a little bit more than usual and also that she was going to the toilet far more than usual, again we honestly thought nothing of it at the time (more noticeable in hindsight) and again put it all down to stress.  Other than these things she was her normal, polite, creative, happy little self.

During the first 3 weeks in the UK we had all noticed the constant hand washing and my mum and I immediately thought she must have a touch of OCD, why?...we had no idea, but again we put it down to the move and the fact that she was now in the UK and maybe this whole move and holiday were a bit much for her.  Obviously looking back we should have known it was something crazy as our Sasha is the most adaptable level headed little girl we know.  But it is all very hard to put a very blurred two and two together when you really have no idea if it really is two and two that you are looking at.
Into the 4th week of our trip, one morning she woke up grumpy and frustrated.  Totally unlike her but again we thought it may be due to late nights, no routine, different surroundings etc.  There was always an excuse that we could think of, had we have been back in Australia and hadn't had all these extra, 'abnormal' things going on we may not have kept assuming it was other things..who knows.  After breakfast that day I asked her to write a thank you note to someone, something she does every time she receives a gift.  She refused point blank. With the straightest look on her face she said I am not saying thank you anymore because I no longer believe in the word.  Of course I was furious and tried to make her see sense but she just dug her feet in more.  I had never seen her like this, at all.  She, like any other child, can have her moments but nothing so calculated and totally absurd.  I continued to try to make sense of it but she just kept repeating over and over that she no longer believed in the word thank you, soon she began adding sorry and other words to her new vocabulary, or lack of.  I had never seen such bizarre behaviour and told her off and sent her to her room, she went off and sat there refusing to change her mind.  

This was the start of 6 long weeks of insanely odd behaviour.  She started to believe that if she sneezed, her germs would kill everyone in the house...she was hysterical.  She began scrubbing her hands like they were covered in poison. The more we tried to calm her the more aggressive and unruly she became.  It was scary.  The next behaviour that entered the scenario were the rages, they were fierce.  She was totally overtaken by them and there was no calming her.  She would tell me that she didn't love me anymore and at this point I knew deep down something awful was going on, but we all still just kept thinking it would change and that for some strange reason she was just playing up. What helped us come to that conclusion is there were times where she was almost her normal self, and anyone from the outside looking in would have thought she was just an average, albeit not so chatty, 7 yr old. But to those closest to her we could all see it.  The child we knew, went to sleep a week ago and woke up the next morning as a different person.

From here on out for 5 weeks I researched day and night trying to find what the heck might have been going on.  I originally thought it had to be OCD and/or behavioural issues, caused by something that we had not realised.  I even ordered children's books on OCD and had successfully managed to get Sasha to concentrate on them a little to see if that would help.  It kept her attention but nothing changed.  I had already happened upon a small article on P.A.N.D.A.S but for many reasons dismissed it initially.  The articles I had seen had said straight up that the child would have a sore throat, due to the strep.  And she hadn't been sick at all.  Poppy had but at the time we would never have connected the two.

For the rest of our time in the UK we had to walk on egg shells with her, it was awful. We know now that she had no control over what she was saying or doing, but back then we still all thought she must just be being naughty, and it's something we all feel deeply, deeply sad about, we blamed her and I will never forgive myself for it.  Col had already flown back to the USA so I dreaded the flight back on my own with Poppy Mae and this child who I no longer understood.  Luckily she was not too bad on the way back, by now I had pretty much learnt not to ask her anything or try and make any kind of emotional conversations as she just couldn't handle it. So we were pretty silent for the 7 hour flight home.

A sample of her writing 2 months prior to onset

Samples of her writing during the exacerbation
As soon as we were back in America the behaviours got worse and worse. Her writing was so poor we could barely understand it and she stopped drawing all together.  She began to show an immense dislike to me and often expressed her thoughts of wanting to hurt me, or throw me down the stairs.  We were lucky that she never mentioned her little sister in any rages.  She seemed to have no aggression towards her and for that we were grateful.  But there came a point where Col was thinking he and Poppy would move out for a bit to be safe, as the family was crumbling around us.  You could never quite tell what she was going to do.  After being home for 4 days (we are now 3 weeks into the exacerbation) we got her in at the doctors, I mentioned P.A.N.D.A.S to the doctor and although she hadn't heard of it, as pure luck would have it her colleague had read an article about it the week prior.  They did a strep rapid test - negative -  and blood tests to show for strep titers, (often the culture can be negative but the strep shows in their blood). They agreed to start her on anti-biotics straight away as a precaution and waited for the blood results.  The titers also came back negative but the doctor agreed for us to stay on the a/b's for 14 days to see if it helped.  But they immediately ruled out a P.A.N.D.A.S diagnosis due to no strep. 

What followed from here were a series of issues that each brought more mystery to the case.  She was referred to the Neurology dept at our local hospital the great Hershey Medical Centre.  The main specialist straight away ruled out P.A.N.D.A.S. and refused to get into conversation about it.  She ordered MRI's as they thought it could be a brain tumour that was causing her change of personality.  It was clear.  They did loads of blood tests testing for umpteen diseases - all clear.  She said what she was seeing isn't typical and because no infection or disorder/disease could be found it had to be a psych issue and referred us to the psychiatric team.  I also privately took her to a psychologist too to see if they could shed light on it. The psychologist immediately ruled out any psych issues and said if it's not P.A.N.D.A.S I have no idea what it is.  It felt like we were going round in circles. 

The psych team at Hershey saw her once and were very blunt about things, they said I can't see how this is a psychiatric issue, she doesn't show the typical symptoms and the sudden onset was unusual.  They were so impressed with her knowledge and mind that the doctor said this girl is going places, I expect to see her in government when she is older.  They wanted to see her again the following week, but basically said they think it was indeed P.A.N.D.A.S.  A day or so later I went into her room to check on her like we do every night and she was having a seizure.  I thought it was a fever fit as she has had them before and although I thought she had out grown them I took her temperature and it was very high.  I rang the hospital and she was immediately admitted for more tests.  The same neurologist went to town on her, they agreed that it could be a fever fit but they said it was highly unusual for 7 year olds to still be having fever fits, and with everything that had gone on they had to check it all again.

This is what 2 weeks of 'we don't know what's wrong with you' hospital notes look like.

She had more blood taken, urine samples, CT scans, throat cultures, and a spinal tap and saw about 10 different doctors over the course of the next 2 weeks.  The spinal tap was awful and she didn't recover properly, it left her with a spinal headache.  In other words a severe migraine-grade headache that, every time she moved even the smallest bit she would vomit and scream in pain.  They told me to give her ibuprofen every 5-6 hours and after 2 days with no change she was admitted again so they could administer IV caffeine (the best cure for spinal headache) and IV fluids as at this stage she hadn't eaten or drank at all, it would just come back up. She was taken off the a/b's but had at this point had at least 10 or so days worth, and was kept on the ibuprofen until she was completely over the headache, about another 3 days.  During this hospital stay we had begun to notice a small change in her, it was only slight, but it was there, a glimmer of her old self, she was more interested in things, she was being nicer to me and she just looked a bit more relaxed than she had been.  We didn't want to get our hopes up, but I remember ringing my mum and saying I think something's changing!

A few days later just before her second psych appointment she woke up and she was literally back to normal!  As hard as it is to believe it was literally like that.  A gradual change in the 3 or so days running up to it and then suddenly it was all gone almost as quickly as it had arrived.  We still took her to the psych appointment where the doctor was totally amazed to see the dramatic change.  She asked her all the same personal questions as before and all the answers were now different.

Q- Do you love your Mummy?  Previous answer NO! Now - Yes of course I do why wouldn't I?
Q- Do you enjoy being at home? Previous answer NO! Now - Yes I love it.
Q- Do you want to hurt Mummy? Previous answer Yes! Now - No I would never.  And she ran and gave me a hug.  Something she hadn't done for weeks. 
At that point the doctor smiled and said yup she sure is fixed, I didn't fix her but I am sure as hell glad something did.

The conclusion from the psychiatric side of the house was that it was P.A.N.D.A.S although no-one could explain the lack of strep in her system.  (We now know that it can be caused by many and varied bugs, and sometimes just when the child has been exposed through contact with someone else, so they might not even have any symptoms themselves). This is now known as P.A.N.S  As for the neurologist, she never concluded that it was P.A.N.D.A.S but that it was  - an inflammatory brain response to an undiagnosed and undetected bug - so basically P.A.N.S.  She believes she was cured through three simple things, the fact that I got on to it immediately and never gave up, that our doctor was good enough to prescribe anti-biotics as a precaution and that they were prescribed so quickly after it started and lastly the reaction to the spinal tap.  Ibuprofen has been proven to reduce brain inflammation and so in Sasha's case the spinal tap was a horrific but necessary blessing in disguise.

I will not go in to heaps of detail about the illness or treatments here as it is a very, very complex issue with many variables and vast treatment options, and I am no expert.  Remember we caught it early and so were very lucky that two simple treatments fixed her and fixed her quickly. 

But as a quick explanation as to why it occurs, in the case of strep for example, your body produces antibodies to attack the strep but instead of getting to work on the strep itself (as they do on most people) in P.A.N.D.A.S cases the anti bodies attack your brain instead.

I will share some links at the bottom of the page so anyone interested can look up far more detailed information, but for now as a basic outline here are the key criteria symptoms associated with P.A.N.S.  (It is very similar to P.A.N.D.A.S)

I have highlighted Sasha's symptoms.

PANS is a clinical diagnosis. The following is the ”working criteria” as listed in Dr.Swedo’s paper on PANS:
  1. Abrupt, dramatic onset of obsessive-compulsive disorder or severely restricted food intake.
  2. Concurrent presence of additional neuropsychiatric symptoms, with similarly severe and acute onset, from at least two of the following seven categories:
    Emotional lability and/or depression
    Irritability, aggression and/or severely oppositional behaviors
    Behavioral (developmental) regression
    Deterioration in school performance
    Sensory or motor abnormalities
    Somatic signs and symptoms, including sleep disturbances, enuresis or urinary frequency
  3. Symptoms are not better explained by a known neurologic or medical disorder, such as Sydenham chorea, systemic lupus erythematosus, Tourette disorder or others.
As hard as this has been to write, I am so glad Col encouraged me to do it.  If this helps just one family, be it now or in a years time when a reader see's a child or family going through this living hell, maybe they will help them out of the nightmare they will find themselves in, by recalling the information I have shared. 
Back when this disorder was almost unheard of, there was a boy called Sammy.  He had PANDAS but no one knew it, his mum tried tirelessly to help her son who was becoming so bad he could barely walk across a room due to his uncontrollable OCD and tics.  I won't go into any more of their story here, it's theirs to tell, but without Sammy and his mum's tireless efforts spreading the word we may never have had such a swift outcome for our Sasha.  So with thanks to them and all the other families who have shared their knowledge and stories ...this is me adding my teeny tiny piece to the puzzle.



  1. Wow, Kate and Col, what an amazing though distressing story. I had no idea Sasha was so unwell, and the level of anxiety for you all. I agree, a worried mother is indeed a good researcher, and very often the medical world would rather fob you off rather than help you out.
    Glad she is well, and I hope will never have to go through that again! Karen

    1. Thanks Karen, we also hope that this doesn't happen again, and likewise we hope that in sharing our story it will help some other parents in the future who have to go through this as well.

      Cheers, Col

  2. Thank you for sharing your story. Awareness is such a powerful weapon.

    1. Thanks Jacqui, sharing the story and researching the facts is so much easier given the resources available on the web, I'm amazed at how much Kate has been able to learn from researching the illness over the last two years.

      Cheers, Col

  3. What an excellent account of your experience. My son went through a very similar experience, and it really helps to connect with families that understand the horror of watching your child slip away from you.

    1. Thanks for sharing DawnMarie - it is true that only those who have been the experience can really understand. Hopefully your son, like our Sasha, never has to go through it again.

      Cheers, Col

  4. Thank you for your story - I believe my daughter (8) is ill with PANS. She shows severe anxiety, severely restricted food intake, OCD behavior - washing her hands to the point of bleeding, depression, separation anxiety, emotional lability, severe oppositional defiant behavior, and some regression (temper tantrums). Her pediatrician is thankfully well educated and mentioned this disorder and is doing blood tests for strep. The rapid throat came back negative. We haven't yet been put on anti-biotics, but I am hoping Monday the results will come back and the pediatrician will prescribe. Your story is echoing my life... and I am beside myself. Thank you for telling your story... it helps to know we aren't alone.

    1. Hi Anonymous. Thanks for your comment, I am so sorry to hear that you are going through this. If your daughters results come back negative for strep titers, please urge them to try the anti biotics anyway. Our daughter never showed any strep anywhere, we will never know what caused her PANS. Which country are you in? And were your daughters symptoms sudden onset? How long has she been like this? The quicker you get onto it the quicker and easier it (generally) is for her brain to heal. You are doing all the right things, well done, you are her voice...keep fighting. Please let me know how she goes.
      Kate x

  5. Thank you for writing this! My son is still recovering. He is 9 and we live in the US.

    1. Hi Carolyn, thanks for your comment. I am sorry to hear your son has PANDAS/PANS but am glad to hear he is recovering. I acknowledge we were very lucky to have had a relatively speedy resolution to our first exacerbation, and can only wish others may have that too. I wish you all the best for your sons recovery. As I am sure you are aware, there are many more support networks and groups in the US for you to find help and it makes such a difference to be able to chat with other PANDAS parents. Thanks again and good luck. x

  6. This is truly moving Kate and Col. Had no idea Sasha was this ill, how scary it must've been at the time. I'm so thankful you post s post on facebook regarding this as I know of a friend of a friends' son who is quite ill/different for his age. He is about 8-9 and fits with most of the symptoms you have listed for the PANDA's. His family are very concerned about him, especially with a young brother aged 2, who he directs his aggression towards. I felt for his family as they have visited numerous psychologists, doctors, counselors, etc over the years with no answers or treatments that has worked for him. Since I saw him I was just like you Kate, I researched whenever I could in my free time, thinking surely there must be something out there. Maybe someones missed some condition that is not well known. It breaks my heart both personally and as a student nurse to see/hear of individuals who don't have any answers as to why they are sick. I am so thankful and pleased that you managed to get to the bottom of Sashas' condition and hope the same may happen for this boy's family. All the best, Georgie :) xx

  7. Hi Kate and Col. I just stumbled accross your blog and read your pandas story with interest.We are in Southeast QLD and have been through a similair experience with our 10 year old daughter. She was undiagnosed for almost 3 years until we came across the PANDAS diagnosis. Your story brought back a few memories of those dark times. Now treated however, she is doing much better. I have recently started a support site for Aussie parents to share their knowledge of treatments and diagnosis, I wonder if you may be interested in taking a look? I hope things are going well for your daughter now. Regards, James.