My son and P.A.N.D.A.S.

Creating Awareness Irish Times article, 15/4/2014  >>Read Shannonside radio interview >>Listen Irish Times article, 14/10/2014  >>Read

We have recently been faced with our son’s rare auto-immune disorder, PANDAS. Here’s our story, please read it to help us create awareness. Thank you!

The Magic Antibiotic

We finally made our move to the West, something I had longed for, for many years. I wanted to get away from the rat race of the bustling big city, for my young children to be able to go outside and play with their friends. I wanted them to experience a simple childhood of fresh air and jumping in puddles, making mud pies and cycling their bikes, something similar to what my hubby and I were lucky enough to have. And I wanted to be close to my family for support along the way.

What is PANDAS? PANDAS stands for Paediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections.In layman’s terms, think of the military term “friendly fire,” a euphemism for “Oops, we hurt our own troops.” When a person has an infection, the antibodies produced in our system are supposed to fight the infection. In PANDAS, however, the antibodies seem to attack the cells in the basal ganglia of the brain, causing abnormal movements and other neuropsychiatric symptoms. Simply put, it’s Rheumatic Fever of the Brain.PANDAS first appears in childhood from age 3 to puberty. In addition to OCD or tics, children may have some or all of the following symptoms: Sudden unexplainable rages, involuntary or uncontrollable crying Personality changes ADHD that is new or dramatically worse. Anorexia (fear of choking, or fear of throwing-up) Nervous system disorders such as tics or other rapid, jerky movements Age inappropriate behaviours (such as bedtime fears/rituals, loss of impulse control) Separation anxiety Sensitivity to clothing, noise, light, taste Noticeable decrease in handwriting or math skills Frequent urination (especially when the child has an active infection)

But before we could breathe in the smell of a turf-fuelled fire, or jump in the many puddles the wet West has to offer, we encountered PANDAS. Although the term has only become part of our vocabulary over the past few months – we have actually been living with it for 17 months.

Our new life had begun, our daughter started Junior Infants and settled in immediately, our son joined the local preschool… but within a few weeks started a strange kind of blinking. I didn’t think much of it but brought him to the doctor who gave him eye drops and sent us on our way. The blinking continued as did the battle with the eye drops but we persevered. Almost a month later Ethan was watching TV, having a snack and he started rolling his eyes and clenching his fingers into his hands at the same time. It was a jerky kind of motion and scary to watch. I panicked! What the hell was going on with my son? Was he having a seizure, did he have a tumour – I shouted at him to stop but he didn’t, he couldn’t. I brought him to the GP, he was referred to A&E in Sligo. His eye rolling warranted him being admitted to hospital for what turned out to be a 4 night stay and included an ambulance ride to Crumlin for an EEG. After many tests and a clear EEG, the threat of Epilepsy was ruled out and Ethan was discharged. One of the nurses said “you must be so relieved”, I didn’t feel relieved, of course I was glad that everything was clear but we were none the wiser as to what was going on. And so we went home with our eye rolling, finger clenching and ‘arm-winged’ little boy.

The eye rolling got worse and more regular, thankfully Ethan didn’t appear too concerned but it was very hard to watch. This wasn’t normal behaviour. Our next appointment with the Paediatrician wouldn’t be for two months, we were in limbo – a place I have since come to know well. December drew near and our thoughts turned to Christmas and the distraction that it brings. Mid December our little man was feeling under the weather with the usual coughs and colds little people get so I took him to the GP again. She prescribed an antibiotic. This is the one I now call the Magic antibiotic!! The eye rolling and other tics – just stopped, just like that. We couldn’t believe it, we were delighted and relieved and thought that it was the end of it.

A bright New Year

Unfortunately not, the New Year came and the tics returned. A visit to the Paediatrician didn’t bring any answers. We were told to ignore it and not to speak to Ethan about it, “hopefully just a transient tic”. I mentioned our magic antibiotic, note was taken and we were again sent on our way. This went on, another GP trip, another antibiotic and tics stopped… but again sadly returned. In March, Ethan was prescribed another antibiotic, his third in almost as many months. Unfortunately, this didn’t have the same immediate impact but his tic symptoms slowly became less and disappeared. By April the eye roll was back, the other tics could go unnoticed in a 3 year old but the eye roll couldn’t be missed or brushed off by anyone. Listening to our story, a couple of friends mentioned strep.

Strep? I couldn’t understand the connection, it didn’t make sense… but I heard stories of kids who displayed ‘funny’ behaviours after having a strep infection. As far as we were aware Ethan had never had a strep infection. He certainly was never diagnosed with one. I had no idea how one was related to the other but I went to the GP and begged her to do a strep test. The results came back clear or so we were told.

Summer came, a glorious summer and a rarity in Ireland. We spent our days outside at the beach or lake, going on walks and having picnics. Ethan was in good form showing little signs of tics (or the tears/tantrums which accompany them). Everyone was smiling, our troubles faded away and we relaxed.

Back to reality with a bang

September came round all too soon; it was back to reality, back to the daily routine and unfortunately as the weeks went on, back to the tics for Ethan. Starting slowly and subtly and eventually escalating into the worst that we had encountered. Ethan’s movements became alarming. He began doing a full body bend/tummy crunch which was so overpowering that we had to accompany him on the stairs in case he fell.  Now aged 4, we had to revert to giving him a plastic sippy cup for his drinks as he appeared to be unable to control these body movements while drinking and continually spilled. The preschool said that it was affecting him in school i.e. walking and joining in with activities was continually hampered by these movements.

And with these tics came extreme fears, tears and tantrums. Ethan never talked about it in the past but this time he was very distressed, particularly at bedtime when he found it hard to get to sleep, which was not surprising considering the amount of bending, crunching and clenching he was doing. One evening my hubby had to take him outside with a flashlight and show him that the house was made of bricks. He was scared to sleep, I had said in passing earlier in the day that it was a timber framed house! It got to the stage that I was afraid to have a conversation with him in case I said the wrong thing. We were walking on egg shells. He was very upset and told us he wanted “things to go back to normal” and he needed us to ‘help make him better’. He felt “itchy all over” and was afraid, with lots of irrational fears. This was the most distressing point for us. My hubby and I could only watch and try to console our little boy who begged us to help him.  As a parent that is very hard to take and the tears set in for us too with the reality of his condition. Ethan often had pains in his leg, continually tic’d – face grimacing, clenching his fingers and toes, a wide eyed look, licking his hands, putting his hands in mouth, chewing on his sleeves, pushing his tongue around his mouth. He was very fidgety, weepy, day dreamy, thirsty, itchy, uncomfortable in his skin, irritable and irrational.

During the height of this flare up I brought him to the GP again. Sitting in the waiting room, I saw people watch my son with a look… the kind you can’t help making when you see something that makes you feel uncomfortable or scared. Inside I was screaming, don’t look at him like that – he’s normal! In the doctor’s surgery, I felt distraught; I could barely hold back tears. I needed help for my son and I couldn’t seem to get it from the place I expected. He asked me what I wanted him to do. I, at the very least, wanted this noted on file. I had separately made an appointment for a Neurologist in Crumlin and the appointment was coming up in January, another New Year was on its way and we seemed to be going backwards. I again asked about sore throats causing movements in kids, he was very flippant but checked Ethan’s throat anyway. He said it looked a bit ‘hairy’ but not a concern. He prescribed antibiotics which I was not to administer unless he got worse. I left the clinic, crossed the road and filled the prescription. Ethan’s tics gradually and slowly improved but did not disappear.

Our Introduction to PANDAS and some hope

A couple of days later in early December we received another appointment date for Ethan in Sligo hospital. Without much hope we attended the appointment to find a new full time paediatrician. She actually listened to our story, she watched some video of Ethan’s movements and then she asked if we’d ever heard of PANDAS. PANDAS requires a clinical diagnosis, unfortunately there’s no one test that can confirm it. A high strep titre, although not absolutely necessary, helps with the diagnosis. But that test was done already – he didn’t have strep?! It turned out that the test was never carried out in May and here we were still desperately looking for answers 7 months later! She carried out the ASO blood test which came back positive (elevated) and so the pieces started to fall into place. I felt like we’d met our guardian angel, at last if Ethan was diagnosed we could go about making him better – right? I went home ordered some books and read as much information as I could find about PANDAS. After everything I read I was sure that her suggestion was accurate, they were describing Ethan.

Next up was the Neurologist appointment, he concluded that Ethan was “presenting a convincing argument for a PANDAS diagnosis” and he would recommend treatment with antibiotics and steroids. Yippee, At last some progress and a treatment plan. There was hope. We went home from Dublin happy.

Hope fading

Ethan saw our guardian angel again in February. For me so much was pinned on this appointment. I could tell that Ethan was on his way to another flare up. He still hadn’t received any treatment and the timing of this appointment was crucial. My heart was in my mouth as we took our place in the waiting room. I studied the notes I had compiled, I’d made call after call, eventually answered… more often than not by a disgruntled secretary, to get Ethan’s complete medical history, I also compiled a summary of Ethan’s condition to date, a table of each antibiotic he had ever been on and information on how to treat PANDAS. The longer we waited I thought my heart would actually explode out of my body. And then, there right in front of my eyes Ethan started his body bends again. Besides finger clenching and toe curling we had two months tic free.

And the reality hit… while the Paediatrician had heard of PANDAS, sadly she wasn’t going to be our guardian angel. She is happy to treat based on advice from the Neurologist but from what I can gather to date, no contact had been made between the two. She prescribed two weeks antibiotics which he has completed. The flare up came as expected with all the same movements but this time round, with the help of the antibiotics, we have a happy smiling boy – no tears and even better, no fears.

But for how long? Because here we are two months later in limbo again… making unanswered phone calls and sending unanswered letters.

The rain has been falling here for months, it’s constant, all day every day, and it pretty much hasn’t stopped since Ethan’s flare up in November. It is dark and dreary and there isn’t much light. The weather kind of personifies how we’re feeling. I am consumed by PANDAS, I am tired, I feel helpless and frankly hopeless at the moment. I have no interest in anything, even PANDAS sometimes. As I type this I am not even looking at my son but I know he continues to finger clench, bend and stomach crunch and I know this because I can hear him grunt with the effort. It’s upsetting.

A success story Sammy’s mother wouldn’t give up on her son until she got a PANDAS diagnosis. He is completely cured, he graduated from college and set up his own business.

Who can help? Who can this blog help?

When your child has a rare (or rarely diagnosed) condition, it’s very isolating, it’s very hard to get help, to get someone to take you on, to really try to understand, to brave treating it. You start to doubt yourself.

I understand that it’s not a widely understood condition, definitely not in Ireland, and there are no official guidelines on how to treat it. But there is information out there, albeit mostly in America. There are doctors treating this condition successfully, with simple antibiotics, on a daily basis. Some kids have been completely cured! And the key is, as with most illnesses, TREAT EARLY! With each flare up comes a worsening of symptoms, digging deeper into my son’s brain.

So, I’m here to try to create awareness. Who knows maybe there is someone in Ireland who has been through it successfully? Or maybe this blog will help other parents who are bamboozled by their healthy child’s sudden onset of tics or OCD. I’ve already met a few Irish mums online who have been faced with this condition, all anxiously looking for help, advice and support – some for years. Hopefully by putting this out there, we can get together, support each other and create awareness.

Feel free to email me at pandasireland@gmail.com. I’ve also set up a facebook support group where PANDAS families can compare stories and share advice. If interested,  go to PANDAS IRELAND to join.

Update 08/08/2014

Things have progressed quickly since I wrote this blog, unfortunately not with Ethan’s treatment. After visiting a PANDAS specialist in the US and asking him to come to Dublin to present here, I now find myself arranging a PANDAS Awareness Conference which will take place on 22nd October 2014, in The Convention Centre, Dublin with neurologists and PANDAS specialists from the US. If you’d like to attend this conference or donate to help make it happen, please go to www.pandasireland.ie

Update 09/10/2015 – Pandas/Pans Awareness Day

The Conference was a huge success but the battle continues! The awareness drive continues. We have two doctors in Ireland who believe and are willing to treat at a basic level. Our son has improved greatly but we still have to fight. We don’t know what the future holds.