So I’ve been a bit quiet lately. That’s because I’ve been really busy dealing with the latest addition to our household – PANDAS. Some of you Autism mums reading this are now saying, “oh no” and wincing. Others won’t have a clue what on earth I’m talking about. The unenlightened are probably thinking of something that looks like this:
Aww, how cute. If only it were that soft, cuddly little Panda that had come to live in our house. Yeah, I know they’ve got really sharp teeth and an insanely strong jaw, and can be dangerous. Although some days, I think that would have to be easier to deal with than what we’re going through right now.
PANDAS stands for Paediatric Autoimmune Neuropsychiatric Disorders, commonly Associated with Streptococcus. These days it is being recognised that Strep is not the only viral activity that can trigger a flare, so that’s where PANS comes in to the picture – Pediatric Acute-onset Neuropsychiatric Syndrome. I’m assuming it’s PANDAS in our house this time – last time I’m pretty sure it was PANS as it was associated with a herpes flare (cold sores). Rather than a cute, fluffly bear, it looks more like this: That’s on a good day. Seriously.
AJ, my soon to be six-year-old son, has strep in his gut. We know this because he has had stool tests done which have identified strep, along with Clostridia and several unfriendly colonies of yeast (despite treating for them). There are times when the strep creates inflammation in my boy’s brain, leading to all sorts of nasty side effects. If you’d like to read more about what PANDAS or PANS is and how it can manifest itself, start here: http://pandasnetwork.org/ or here: http://www.regardingcaroline.com/pandas1.html
I’d like to share with you what it looks like in our household.
It started off with a recurrence of his throat tic. It sounds like AJ’s clearing his throat – that sort of hawking and snorting noise to get the gunk up. Charming, I know. He can do it five or six times in a row, three to ten times an hour. All day long. Sometimes he does it in his sleep. We’ve become so used to it that we don’t even ‘hear’ it anymore. Unless we’re brave enough to be out in public, then the strange looks we get from others sort of remind us.
Sleep becomes an issue. Well, it’s always been an issue, but we’d been on a pretty good run really – AJ had been getting to sleep as early as 11pm, and waking up around 8:30am – sheer bliss. Now, he is once again going to sleep anywhere from midnight to 1am, and waking anywhere from 3am to 9:30am. He does not nap, even when he’s only had three or four hours of sleep. Naturally, he’s extra cranky because he’s tired. And so am I.
Eating has always been optional for AJ, but when he’s going through a PANS flare it goes from one extreme to the other. We’ll have a day where he simply won’t eat. I can tempt him with all sorts of food (remembering that he usually only eats four foods at the best of times unless I’m happy to feed him lollies and biscuits) and he may condescend to eat a mouthful or two. He’ll be existing for three or four days on what seems like air, and then he will all of a sudden start eating. And when I say eating, I mean devouring. He will rip into bread – there will literally be pieces of bread flying around as he’s pulling it apart and shoving it into his mouth. It’s like watching a wild, starving animal eating. His sisters have to hide their food as he will rip it off their plates, and out of their hands even as they are taking a bite.
His need to shred paper becomes insane. Shredding is an activity that normally helps him to regulate himself – to calm down, be centred and feel more in control of himself. He gets joy of out looking at pages in cooking magazines (ironically enough) and carefully pulling the page out, before moving onto the next one. When he’s in the grip of a PANS episode, there is nothing calming about it. It is totally obsessive and he NEEDS to shred, and shred, and shred. We go through mountains of magazines (thank goodness for kind souls who pass their old magazines onto us), as well as Supermarket catalogues and newspapers. Our house looks like we’ve been throwing confetti everywhere – and as soon as you clean it up, he shreds more.
He’s once again become more sensitive to his surroundings. Where previously noise wouldn’t be an issue, now it is. New environments, which we’ve worked so hard to help him with, are torture chambers. Transitions require more preparation and more time. Which makes taking him to the School Readiness sessions a 1.5 hour grueling event. He currently can’t cope with the short transition times, the noise of the other children, the sensory overload from the plastic covered foam mats in the sensory room. His hyperactivity is back and he cannot sit in a chair and concentrate on anything for very long.
His speech, which had been blossoming over the last couple of months, is regressing. We are still getting words, but they are not regular anymore, there are far less of them and it’s only one at a time, not the two to four we had been getting. His communication is once again limited to pulling us to where he wants us to be, and having to guess what he’s after. He is very rarely even pointing now.
Then there’s the behavioural issues. I am covered in bruises and have sore fingers and a throbbing rib cage. When he wants something, he pulls at my little finger – hard. If the answer is no, I have to steady myself in preparation for the onslaught. He will throw his entire weight into me, kicking and hitting me, headbutting me, spitting on me and occasionally biting my clothes. He is throwing objects and slamming doors. If I say a wrong word or sing a song that he doesn’t want me to sing while I’m changing his nappy, he kicks me with full force. He is an enraged maniac who has no concept of what he is doing – his eyes are wild and panicky, his arms and legs waving madly. He will scream, yell or spit and continue to launch himself at me until he runs out of steam.
Thankfully this time, he is not attacking his little brother. Last time we went through this, I would have to physically restrain AJ, and scream at his little brother to “Run!!!” and hide, or AJ would throw himself on top of his brother and punch him. He would walk past and shove him, or snatch toys away from him and then break them. He’s also not self-harming this time. He used to slam his head repeatedly into the floor, or scratch or pinch himself. I’m very grateful we don’t have that to deal with right now, and pray that it won’t happen again.
For those of you who have been blessed NOT to have the PANDAS or PANS monster visit your house, you may be wondering how we cope with all this. Truthfully – not very well. We batten down the hatches, secure the physical belongings and try to minimise stress on AJ as much as possible. I have found it very hard to deal with the huge regression that has taken place in less than two weeks – I knew it would be coming, but that doesn’t make it any easier. My own health issues have now hit hard again due to the lack of sleep and constant stress – adrenal fatigue, cortisol burnout and subsequent thyroid struggles are all making it very difficult to get through the day without collapsing. I’m also finding myself quite short-tempered and irritable most of the day.
Treating PANDAS is not an easy matter, nor is it cheap. We are using natural treatments as much as possible as they are not only cheaper, but gentler on AJ’s already ravaged immune system and gut. The difficulty is that most of the treatments taste disgusting, so I can only get a couple into him. We’re about to see a naturopath for the first time, and once we can afford it, will be seeing a new homeopath. Other than that, we hang on tight, and pray. And while we do, we remind ourselves constantly that inside this little raging monster, is a sweet boy who will come back to us one day. Hopefully soon.