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.

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54 Responses to My son and P.A.N.D.A.S.

  1. Mary Cafferky says:

    Thank god that Ethan has such a strong, courageous and eloquent Mum who will stop at nothing to help to get treatment for him. It breaks my heart that we can not make it better for both you and Ethan but someone out there can and will, in the meantime we will do what we can to help on a practical level, just ask. Love ye all to bits x

    • KC bloggs says:

      Ye already do enough with pick ups and drop offs and babysitting while we take Ethan to appointments!! I made a good move 😉 I can’t imagine going through this in Dublin with no family around us. Mammys are great and Dads too xxx

  2. cynthia bell says:

    Claire told me to read this to help prompt awareness, which is odviously working as far from America to England. My Heart goes out to you all .I will remember you all in my Prayers.KEEP STRONG xx

  3. Theresa Coucill says:

    Its a beautiful piece of writing and heart does go out to you and your family. Whatever I find i will send on. Good luck x

  4. Tara Ryan says:

    Karen, I can’t imagine what you have been going through – hope you get some answers that will help Ethan soon. Good luck Tara

  5. Ian says:

    Karen our 12 year old daughter developed rapid Onset OCD last year with all the associate distressing behaviours. We think it is PANDAS but the group helping listen without acting. We are unsure how to proceed. She has a history of recurrent flare ups but this one has lasted the longest and has been the most severe……how do we get people to listen

    • KC bloggs says:

      Hi Ian,

      I’m very sorry to hear about your daughter. Are you based in Australia? I have copied some contacts from http://www.bethalisonmaloney.com that might be able to help you….

      Jacques Duff, PhD
      Psychologist
      Behavioural Neurotherapy Clinic
      2/314 Manningham Rd
      Doncaster Victoria 3108
      Phone Number:
      (03) 9848 9100
      Fax: (03) 9848 9300

      http://www.adhd.com.au/PANDAS.htm

      Richard Stuckey, MD
      Border Medical Clinic
      15/122 Griffith St.
      Coolangatta, QLD
      4225
      Australia
      Phone Number:
      61 7 55 364396 or 61 7 55 354396
      Fax: 61 7 55 364045

      Steven Mouratidis, ND
      Naturopath
      Allergy Elimination Clinic
      3 Denmark Street
      Kew Victoria
      3101
      Australia
      steven@allergyelimination.com.au
      Phone: 03-9855-2249
      Fax: 03-9855-0090
      http://www.AllergyElimination.com.au/

      I’ll see if I can track down any support groups. I will email you directly. Thanks for reading my blog and getting in touch.
      Karen

      • Ian says:

        Thanks Karen
        We continue to be unsure how to act. Our team will continue to work on making sure our daughter gets to her goal weight and she is so close. We feel the fear of puking is the reason she has not yet reached her goal weight. She often gets really stressed and getting her to school is an ongoing problem. We feel we go round in circles not getting anywhere and today we had to branch out and get more support. My wife has a bout of antibiotics to give her but why would this work 8 months down the track…..what do you think.

      • KC bloggs says:

        Hi Ian, I’m certainly a novice when it comes to PANDAS, only introduced to it in December, so unfortunately I can’t offer you advice. However, I put the word out there on your behalf and got the name of recommended doctor that you should look into, Dr Robyn Cosford. I’m sorry that I can’t be of great help. We’re feeling our way in the dark with this new diagnosis ourselves. You can only go by how your daughter has reacted to antibiotics in the past. In our case we have seen good results for our son. There are lots of support groups out there particularly on Facebook and there is a PANDAS/PITAND/PANS INTERNATIONAL one where you may meet other people from your area who can help. I hope things get better for you and your daughter. I hope the same for us and our son. The only thing I can think of to do(besides gain as much knowledge as I can) is to try and raise awareness.

      • Ian Alexander says:

        Thanks Karen

        I am unsure how to use facebook properly but I will learn soon. We are finding our way as well and have had no firm diagnosis of PANDAS but all evidence we have observed leads to it. There is little understanding or recognition by the professionals over her is Australia and so we are viewed as ignorant which is really frustrating. Our research views CBT as the path to improvement but the team working with our daughter are reluctant to go down this path. We have also read antibiotics can help but we are reluctant to give them

        Ian Alexander
        Head of Biology; House Tutor
        +61 3 9213 2315
        Ian.Alexander@haileybury.vic.edu.au
        http://www.haileybury.vic.edu.au

  6. Hello Karen
    I’ve just moved back to Ireland & coincidentally specialise in treating PANDAS & ASD using homeopathy. I’d be very happy to have a chat with you over Skype about it if you are interested.
    http://www.alanfreestone.com

  7. rachelmoses says:

    Sounds eerily similar- we recently went through a terrible few months when our daughter (previously a relatively normal, precocious kid) very suddenly became severely insomiac and had a sudden onset of severe psychiatric symptoms and anxiety, defiance, separation anxiety, violent rage attacks, temper fits- we sought help from dr who sent us to a local child shrink who immediately wrote prescriptions for sleeping pills and wanted to put her on other hard drugs- I was not onboard with this idea and felt strongly that she was “ill” with something though i didnt knwo what. They told me there was no known biological cause for this type of behavior. After a couple months of unreal hell in our house, when i started floundering around looking ANYWHERE i could for help, and got onto the idea she might have Lyme or some other infection, i sought help from a local lyme specialist chiropracter – and he mentioned this possible pandas differential and suggested the ASO test for strep- which picked it up, after going to a new pediatrician in a larger town we finally got this PANDAs answer. There was immediate and so much improvement for her after a few weeks of regular old amox antibiotics, we are all fairly confident that was it. it hasnt been very long so I am still nervous that we may see some recurrence, and not 100 % convinces lyme is not also a factor since we live in a lyme endemic area with high exposure to deer ticks. Anyway, now we have to deal with lingering trauma from the fact that this went on for months untreated, but at least we are on the mend… its so sad to hear that this is so widely not known about and horrifying to realize that others who arent so skeptical of medicine are right now going down the path we were being sent on- towards completely wrong psychiatric misdiagnosis and strong psychoactive medications which will do nothing to help a bacterial infection. none of the dr, psychiatrist or psychotherapist locally who charge big bucks (500 bucks for 15 minutes! dont these folks have an obligation to stay up to date on info about relevant diseases?) to supposedly help people knew anything about this disorder. The pediatrician in the larger town said she had seen it just “a handful of times”. there is some debate as to wether it is a particular type of child who is susceptible, or wether its a particular strain of strep that is responsible, as some towns have seen PANDAS “outbreaks” in school populations. i am telling everyone i know about this but- how else can we raise awareness?

  8. rachelmoses says:

    We are very new to this as well- she became ill on Thanksgiving (end of Nov) and we didnt figure out what was going on /get appropriate testing/treatment until February.

  9. rachelmoses says:

    also, you might want to add sudden onset severe insomnia into your list of most common symptoms. , as the figures ive seen show 85% of PANDAS kids have this one too.

    • KC bloggs says:

      Thanks Rachel, I know all about the insomnia too! Was up with my little boy from 4am the other morning. Ireland is small so maybe easier to raise awareness. This blog has been viewed about 5500 times and in 47 different countries. We are still no better off but hopefully that will come with people continually talking about this and sharing their stories. If my son had been diagnosed earlier I really believe he would be on the mend. Instead we are seeing that the antibiotics are slower to take effect. Following on from this blog, I was asked to do an interview on a local radio station – it’s very long but hopefully it’s making some inroads to awareness in Ireland (and anywhere else!!). Here it is: http://media.shannonside.ie/mediamanager/embed/player/podcasts/15/item/20045

  10. Carolyn Flynn says:

    Karen, an eleoquent and touching account. I am thinking of you & Joe, I hope that you get all the help and support needed for Ethan.

  11. Suellen says:

    I know that they are all in the United States, but there is an appendix of experienced PANDAS doctors in the back of Beth Allison Maloney’s (author of “Saving Sammy”) newer book “Childhood Interrupted – The Complete Guide to PANDAS and PANS”. Perhaps Ethan’s doctors would be willing to consult with them? Or maybe even just take a look at the interviews that these doctors provided? Great viewpoints & treatment info from them. My daughter’s Neuropsychologist actually borrowed the whole book from me 🙂 She said that because it is a somewhat controversial diagnosis, that it is even difficult for medical professionals to get information on it sometimes! thanks for your blog, and for trying to raise awareness. All the best to you & Ethan.

    • KC bloggs says:

      Thanks Suellen, I actually brought the book to my Paed appointment. I had photocopied the Appendix with all the advice from the doctors so gave her that. I’m doing my best to raise awareness of this in Ireland. After I wrote the blog, a local radio station called me for an interview and the national newspaper are running the story soon so I’m hoping that will help too. Now… if only someone could make my son better… and we could go back to LBP (life before PANDAS!) – that would be nice!

  12. MP says:

    I don’t have children, I’m just passing by….it’s so annoying to hear that it’s hard to get attention from doctors sometimes. One thing you might try is seeking care somewhere else in Europe, like France, Italy or Switzerland…it’s not too far and healthcare systems are different in every country, for example I know that in some countries in Europe you can see a consultant privately without being referred by a GP. The only thing would be finding the name of a specialist – it looks like you have done a lot of research online so this may be a new lead?
    Best of luck to you and Ethan, x

    • KC bloggs says:

      Thank you for your kind message MP. Yes indeed we have looked outside of Ireland and will be attending a PANDAS specialist in the states. I have, however, been in touch with one Irish family who have had a hard fought but successful outcome to their PANDAS journey in Ireland. So that gives us hope too. Thanks for getting in touch, Karen 🙂

  13. KC bloggs says:

    Hi all, Just wanted to give you a quick update…

    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 http://www.pandasireland.ie

    Thanks a mil, Karen

  14. Sarah says:

    Karen you’re a legend – go Ethan! x

  15. ldee says:

    It sounds like I wrote this blog myself. Please can you give me an update on your son today? We have very little support in Canada.

    • KC bloggs says:

      Hi Idee, I hope things are going well for you. I only saw your comment now – a few months too late. Life takes over as I’m sure you know!!! Things here have been up and down as is the nature of this horrible disorder. I live in hope and fear. There is little support here but sometimes all you need is one doctor. Feel free to email me at pandasireland@gmail.com, I’m happy to share our story with you. Thanks, Karen

  16. Ema says:

    Karen I hope Ethan has is okay, I’m panic stricken with my 6yr old son I’m sure he’s a pandas victim, I’m in the UK and really not coping. Please give me an update on your trip to USA I may follow please help x

    • KC bloggs says:

      Hi Ema, I’m sorry I didn’t see your update until now. I’m also sorry to hear about your son. I understand completely the panic and fear you are faced with. We are three years into this now and many times still feel the same way. It’s a battle and it’s exhausting. As a diagnosis that is not always accepted by all doctors, it makes life even harder. There is hope of course and I speak to many families from the UK who are getting help. If you like, please email me at pandasireland@gmail.com and I will put you in touch with them. Thanks for getting in touch, Karen

  17. FP says:

    I’m sorry for my terrible english…My daughter has recently been a diagnosis for Pandas. In this moment she makings injections of Benzatilpenicillina, as reumatic fever’s terapy…but the danger are another agents like virus,also.

    • KC bloggs says:

      Sorry to hear about your daughter FP. It’s a very scary and confusing diagnosis especially as so few doctors know about it and treat it. It sounds like you are doing well with treatment though. I hope all goes well for you and your family. Best wishes, Karen

  18. Hi Karen. I’ve just come across your blog while doing research on PANDAS. I suspect my son (7) has it. I’m actually quite experienced in digging up information on little known conditions, unfortunately. Sam was diagnosed in late 2012 with 22Q 11.2 distal deletion syndrome. The most common syndrome after Downs, but one that few people, including medical professionals, are aware of. Now I’m facing another possible rarity. Sigh. My father actually came across information about PANDAS last year when we were dealing with what we now suspect was a PANDAS episode following a strep infection. Twelve months later and we are back there again. I also suspect that it began much earlier – 2011/12. This time I know more and my gut is telling me this is no coincidence. He ticks all the clinical diagnosis criteria. I live in Australia.

  19. I have just started receiving these messages after a while. Your messages resonate with us down here in Australia. Our daughter is now 13 and has a diagnosis of PANDAS from a NZ doctor via our holistic GP here in Melbourne. The treatment is long term antibiotics/probiotics and other associated supplements. She does not respond to psychological help and is currently saying she is starting to feel like she is relapsing. We have put up with this for over 2 years now and it just never seems to go away. There have been days where things improve but it is still always there. I feel sad a lot of the time for my daughter and what she is going through as well as for the energy we have to invest in pushing on regardless. We hope and pray that the relapse is short lived and not as bad as those we have had in the past.

  20. Emma says:

    I desperately hope Ethan is doing well and you as parents too I’m in a scary dark lonely place.

    My son ( 6)was poorly typical temp virus sore throat November 2014. A few weeks later he started with a school panic refuseing to go without reason we just put down to tiredness was actually seperation anxiety i now realise. Then around 4weeks later he started a repetitive vocal tic a hum like 1 per minute. As his parents we just gave each other a strange look talk laterv this went on for two weeks then I asked him not to do it, he replied he didn’t know he was. Febuary he was a little under weather started with a sore throat and temp he made the hum breath vocal tic 50 per minute constant for a four hour journey home. It was late when we returned home i was struggling to cope I took him straight to the Gp triage nurse next morning and gave antibiotics for severe tonsilitis, and within the first dose say 10 to 15 miins the tic reduced back to 1 per min. Got me thinking how did this antibiotic have so much impact.
    My son has since 2 episodes of tonsillitis I pursued a strep test that tested positive since then he has started to loose all natural coordination head flicks when running repetitive toe bending his hands move on there own, he hides this from us and has never mentioned it. It happens in his sleep temper tantrums, aggression, total behaviour change from quiet and sensible to loud and manic, episodes of panic cannot understand instructions or keep attention have dropped swimming, can’t fall to sleep worries. We are in England UK we waited until July to get a paediatric appointment who I think suspected / ruled out ; tourettes, Wilson’s disease or sydenhams chorea. He had a ASO blood test cames back normal except slightly low white cells. Told not draw attention to tics I’m going out my mind with worry we see the paediatrician again in october I’m just left alone to watch him suffer in his own skin he asks me to cut his fingers off because of itching.

  21. FP says:

    As my daughter said a diagnosis of Pandas, but for now seems under control with injections Benzatilpenicillina. We live in Italy and here are three great centers who diagnose and treat this syndrome. My daughter is followed to the University Hospital in Rome, by a forward-looking and open-minded doctor who must have really seen a lot of cases. The story of my daughter traced in part to Ethan, with the appearance of eye tics and a great separation anxiety, with the sending by the pediatrician by an ophthalmologist who gave me the input of strptococco. The immediate cure with antibiotics and anti-inflammatory solved in about a month the problem completely, and since then my daughter has never stopped taking antibiotics. It ‘was hard fighting against the beliefs and culture of the poor pediatrician who treated the subject with enough, but I never gave up.
    I always thought that if the long-term care with antibiotics failed, would try the treatment with IVG, at the cost of having to beg in the street. You are nearby K, do not give …
    I apologize again for my horrible EnglishIt ‘was hard fighting against the beliefs and culture of the poor pediatrician who treated the subject with enough, but I never gave up. I always thought that if the long-term care with antibiotics failed, would try the treatment with IVG, at the cost of having to beg in the street. I’m sorry again for my horrible English…

  22. FP says:

    Item 1 of 1 (Display the citation in PubMed)
    1.
    Hum Vaccin Immunother. 2015 Aug 12:0. [Epub ahead of print]
    The usefulness of immunotherapy in paediatric neurodegenerative disorders: A systematic review of literature data.
    Vitaliti G1, Tabatabaie O, Matin N, Ledda C, Pavone P, Lubrano R, Falsaperla R.
    Author information:
     1a Acute and Emergency Paediatric and General Paediatric Operative Unit, Policlinico-Vittorio Emanuele Hospital, University of Catania , Italy.
    Abstract
    Immunotherapeutic strategies to treat neurodegenerative disorders have inspired the scientific community. The aim of our review is to address the translational aspects of neuroimmunology to describe the efficacy of immunotherapy in the treatment of pediatric neurodegenerative disorders. In the studies we analysed IVIG were found to be efficient in the treatment of post-streptococcal neurodegenerative disorders, even if in PANDAS, plasma-exchange (PE) showed a higher efficiency. IVIG were also successfully used in ADEM and Guillan-Barré syndrome. In Sydenham Chorea the use of methylprednisolone was found in most cases as efficient as IVIG, while in Tourette’s Syndrome, Colecoxib was successfully used in one patient. Paediatric Multiple Sclerosis seems to respond better to immunosuppressant agents (Mitoxantrone, Cyclophosphamide, Natalizumab), as well as Neuromyelitis optica (Rituximab, Mycofenolate). The importance of this review relies in the attempt to draw standardized guidelines for immunotherapy in pediatric neurodegeneratve disorders.
    PMID: 26266339 [PubMed – as supplied by publisher]

  23. Barbara says:

    Hi Karen, Thank you for sharing this. I hope Ethan continues to do well. We have a 7 year old girl who has had a sudden onset of eye rolling, been admitted to Tallaght hospital, all tests clear apart from a spike in her EEG so we are now waiting for an MRI & full eye exam. It’s really tough watching her go through all that. Doctors best guess is viral but I can’t find any other info, hence the google searches for anything that might help! Wishing you & Ethan & co all the luck in the world x

    • KC bloggs says:

      Hi Barbara, I hope your daughter is ok and it’s just a once off. If symptoms continue, there’s no harm in asking docs to test for strep too using ASO and Anti-DNaseB blood tests. Not many doctors know about or accept PANDAS yet so it’s still a bit of a struggle getting help for this condition. Luckily we’ve met a couple of great doctors along the way and Ethan is doing ok for now. There is no quick fix. Although, research suggests that if PANDAS is caught early and treated quickly with antibiotics, there is a better chance of full recovery. If you ever need to get in touch, you can email me at pandasireland@gmail.com and I’ll be happy to respond and help in any way I can. Good luck with your daughter. Karen x

  24. MomInVirginia says:

    You r not alone. I’m in the United States. First noticed eye blinking and head rolling in October 2014. diagnosed with pandas in April 2015. Has had a few times of antibiotics. Going to the Doctor his week to get this diagnosis on paper because it is causing him behavior issues at school and they won’t help unless I have that diagnosis stated. Wish me luck.

  25. Dana says:

    Are you from Kansas City? If so I would love to talk with you. My son is 15 was diagnosed with pandas at age 11.

    • KC bloggs says:

      Hi Dana, I’m not from Kansas City, I’m from Ireland 😊 My initials are KC! There are lots of Facebook groups you can join with people from KC and all over the world. Let me know if you want a link. Thanks, Karen

  26. Lyndsy says:

    My 6 year old son has PANDA’s. After a terrifying year & finally getting a diagnosis we had his tonsils removed. He was previously ticcing & raging daily with antibiotics providing a few weeks relief only for symptoms to return shortly afterwards. After his tonsils were removed he has been a completely happy normal child. I highly recommend this procedure for PANDAs children. Strep hides in the tonsils & can return shortly after a course of antibiotics. Without the tonsils the antibiotics seem to kill the strep completely. He will not flare again now until further contact with strep which hopefully will be cured in a few weeks of antibiotics.

    • KC bloggs says:

      Thanks for your comment Lyndsy. It’s great that the tonsillectomy worked for your son. The feedback I get from parents whose children who’ve had it done is varying. For some, it can send them into a huge flare that is hard to return from. In others, it seems to help. We haven’t done it yet, we would find it hard to get an ENT to consider as of course our sons tonsils look perfect!!

  27. Michelle flagel says:

    My son had strep throat 4 weeks ago. Since then he has had a frightening change of personality. Severe anxiety over eating from a frear of choking or throwing up. Also says his tummy hurts frequently. He becomes hysterical in the morning saying he is going to die he cannot breathe along with crying and screaming and saying he is going to throw up. Has severly limited his foods that he will attempt to eat and will only eat if he’s being distracted. My husband and I have spent every minute trying to keep him calm and keep him fed and hydrated in the last 4 weeks. 2 days ago we saw an infectious disease Dr who is passionate about helping kids with PANDAS. Even said he wants to start a PANDAS clinic when he retires. Started my son on antibiotics got an ASO blood test. We are praying and hoping the antibiotics will help his symptoms because they are debilitating and he is supposed to start kindergarten tomorrow. Thanks for you story. I have been searching the internet for answers.

    • KC bloggs says:

      Hi Michelle, thanks for your message. I’ve worked hard here gaining support of doctors. Antibiotics have been key for him. He is on then full time. The neurologist even commented lately that his face is more expressive than ever before. It’s been 4 years now, we’ve been getting some form of help for 2 of those years and in the last 9 months he is doing well most of the time. We don’t take anything for granted as we hear of lots of children who relapse or become immune to the antibiotics but are certainly enjoying the good times when they come. I hope your son improves on the antibiotics. Great to have a passionate doctor who believes! If the first antibiotic doesn’t work, don’t worry. Different ones work better for different children. Best wishes, Karen x

  28. Kim Edwards says:

    Hi.. I’m from Australia, and found your blog really helpful… I’ve just been told my son more then likely has this by his phsycologist …where to start?….help……please

    • KC bloggs says:

      Hi Kim, Sorry to hear about you son. Just to let you know our son is doing really well now on daily antibiotics. There’s a support group in Australia. I’ll get the details and come back to you xx Karen

    • Ian says:

      Hi Kim

      I live in Melbourne and our daughter is almost 2 years past her last major flare. We still have some issues but we ar also in a pretty good place at present. We are more than happy to offer support if you wish in terms of how we dealt with this horrible condition
      Ian

    • KC bloggs says:

      Hi Kim, I spoke to a parent in Australia and believe you found the Australian support group. That’s great. I hope they are able to offer you support and advice to get the best help for your son. You are welcome to join the Irish group also at https://www.facebook.com/groups/PANDASIreland
      Thanks, Karen

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