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L Haven L Haven

Parents of children diagnosed with PANDAS

I am the parent of an 11 year old diagnosed with PANDAS. I'd like to correspond with other parents whose children share this diagnosis; perhaps we can share information, experiences, and hope.

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  • jules8484 jules8484

    Hello L Haven,

    We have a PANDAS/PITANDS daughter who has just turned 7. At present we cannot find the right medical care for her and it is becoming a nightmare.

    At the moment she is off school again, we have tic symptoms, sleeping problems, regression, tears and tantrums, to name but a few issues. She has just had a throat swab for strep, but we think it is viral this time. Our ped. will only treat with SSRIs which we have refused. Have you looked into long term antibiotics and IVIG for your child, and what symptoms do you see? We are feeling very alone with this condition, and are fighting with doctors for help.

    I would not wish this on any child, but it was very nice to find another parent who we can relate to. Hope that your little one is well.

    Regards Julie and Steve

    • amiejake amiejake jules8484

      Hi am a mother with a child with PANDAS who is currently the worst patient our PANDAS doc has seen from the how long it took to diagnos ( 3-4 years ) and all the psych meds he was on. What I can tell you we see the BEST doctor and our son is geting better but it will take yeras because of how long he was sick and the detoxing off antibiotics. my advice is to NEVER allow them to give you any psych meds. Psych meds make PANDAS worse and are the worst possible think you can give to a PANDAS kid it does the complete opposite it makes them worse no matter if it's a stimulant, SSRI, Anxiety med, Anti-psychotic NO psych meds. You need to find a pedi that will put your child on long term antibiotoics. Mild ones at a high dose and ALEVE ( Yes ALEVE) 2 times a day to take down the inflamation sourounding the frontal globe of their brain were the infection is. That's it NO IVGI it's expensive and if it does work it only works for a short period of time, same thing with steriods only works for a short period of time they are bandaids and IVGI is a very expensive bandaid. It's pediatric so remeber antibiotics until at least 18 years of age or sooner some outgrown before 18. I myself have had to wean and am detoxing my son of the most dangerous anti-psychotic out there and he is 100% better off then on so whatever you do NO psych meds. You need to do research find a good pedi that bellieves in PANDAS and will put your child on the right treatment plan. My doctor ONLY take 100% PANDAS cases and has a 100% cure rate so trust me I have done my research and I have seen the results. But along with treatment once you get the right treatment (unless is diagnosed right away which was not our case our son has been sick for many years and very developmentally behind) you will need the best providers in your home all week, skills trainers, respite, in-home therapy. It's not just finding the correct treatment and doctor it's also finding the correct team. We have therapist at hour house from 3 different agencies that follow the same behavior plan 6 days a week! it's a TON of work and only because doctors won't do a simple strep test or Lyme test. They send off to menatl health providers that's why all these kids are sick and in residential homes my heart breaks becasue once they are there is no going back. Good luck and I hope I shed some light for I have been through a huge journey that I still live everyday and will for years but I truly beleive there is a light at the end of the tunnel. And remeberback to school all those illness makes the nehaviors and aggressions worse. My son is going to doctor today HUGE increase in behaviors/aggressions and our entire family is sick. good luckit's a long journey first start is finding the right doctor most are psych doctors who beleive in still treating childrens with psych meds, you can also have your pedi order the cummingham panel if they are willing. any doctor can order it for a patient. First test on PANDAS not 100% yet but pretty close. Good luck!

    • Gogigigirl Gogigigirl amiejake

      Could you poasibly share what psych meds? Before our daughter was diagnosed she has been put on serious psych meds and I am hoping to get her off them. We see a PANDAS specialist tomorrow and am sacred because we know nothing about this disease

    • amiejake amiejake Gogigigirl

      Our son was put on stimulants, SSRI's, anti- psychotic and gunfacin ( not sure what class this is) he has responded horrible to each and everyone he was taken off immediately all of them within 2 weeks that how bad he responded. They kept him on antipsychotic for 3 years started at dose .25mg up to eventually 3 mg a day ( highest dose a child can take) it took 6 months to wean him, $25K in home damages and he beat us up/ bite us and attacked us 24/7 during those 6 months. He is still detoxing it is the worst class of meds and takes 9 months to over a year to detox. But he is 98% better off all psych meds. The only one at this point I would even comtemplate him trying ( while going through treatment) is a benzo like a small dose of adivan to help with anxiety and OCD while we are working on getting his high strep titers down. But that's it I have only just decided this if it comes to it because he is suffering so much but I would NEVER another psych medication anywhere near him.

      Good luck I have seen first hand what these meds do to PANDAS kids and the weaning processes is even worse! Be careful they treat kids as Guinea pigs with dangerous psych meds.

  • Loobs Loobs

    my little boy has been diagnosed with tourettes syndrome, i suspect it may be PANDAS but am finding it impossible to speak with any medical professional who even knows what it is!!

    has anybody had any joy getting their child treated in the UK?

    any help or advice would be most welcome.

    Lou

    • katie61793 katie61793 Loobs

      Hi there

      I know you posted over a year ago but just came across your post whilst on a google search for PANDAS support or consultants in the U.K. Did you find anybody in the U.K.?

      My 4 year old has been showing symptoms but we are just being told it's tics and I don't think it is so trying to find someone who speaclises in PANDAS.

      Thanks

  • jules8484 jules8484

    Lou,

    I have sent you a pm, we also have a PANDAS child. I would very much like to get in contact as we are at last being treated with some positive results.

    Jules

    • ebony45145 ebony45145 jules8484

      Hello my name is Ebony suber my friends son was diagnosed with pandas and she would like to know any information on how to treat this. You said you had postive results? can you plz email me back or call 8162949830 and share exactly how you are going about treatment for your child.

    • Mandz1 Mandz1 jules8484

      Hi Jules

      Just reading through this thread in another desperate attempt to find out some info about treatment for Pandas in the UK. I noted from your comment that you had seen some positive results? I would be very grateful if you would get in touch regarding any success/suggestions you may have. Many thanks.

    • tina4564 tina4564 Mandz1

      Hi Mandz just to let you know that i have a 10yr old with PANDAS and we have had some success using long term antibiotics with reductions in both sore throats and hearing voices etc

      hope this helps

    • Mandz1 Mandz1 tina4564

      Thank you Tina

      Our 11 year old son has had symptoms for almost a year. We have been referred to a paediatrician but GP didn't seem to know much about Pandas. Our child ticks just about all the boxes on the symptoms list. Extreme anxiety, emetophobia, etc... just hoping we find a progressive doc who will give the go- ahead for antibiotics. Pleased to hear you've seen improvements.

    • HsMum2015 HsMum2015 Mandz1

      Hi Mandz1,

      Sorry to hear everyone else's stories on this nasty syndrome...Our poor kids, and poor us. It is a horrible thing to have and to support people through.

      Our 8 year-old came down with a Pandas episode last Easter. She had all the symptoms, anxiety, obsessions, compulsions, food phobias, didn't want to leave me, couldn't sleep as scared, physical tic movements and was doing other movements in evens numbers. Poor soul was able to say she had no idea why her body was telling her to do such odd things and I was terrifed she was going to hurt herslf.

      Thankfully we have a friend who is a pychiatrist, although not a paediatric one, and when my daughter had what looked like a nervous breakdown after two nervy, slightly anxious days we called her as well as the GP. She asked us to get the GP to rule out UTI and Diabetes, then had a think and a couple of days later suggested PANDAS as she had bee on a course on this a year ago. It was such a blessing she had as we were able to get access to internet info to pass on to GPs and to say a Psychiatrist had suggested Pandas and eventually got an emergancy referral to Paed Dept at Hospital who did bloods and prescribed antibiotics and eventually to Psychiatry Dept who prescribed Bio-melatonin which is helping my daughter get off to sleep. We went everywhere armed with internet printouts to pass on to medical staff as my friend had warned us most folk hadn't heard of it.

      My friend says GPs don't get training in PANDAS as it's still a bit controversial and when they see the odd behaviour the kids normally get referred to the Psychiatry Dept who then arrange tests and prescibe. This is scary though as the waiting list for Psych is so long and antibiotics early seem to really help. I guess GPs don't then get much feedback from Psyc but would be ace if they did so they could share with their colleagues and be aware it existed to catch it sooner.

      My wee girl is slowly improving. I give her turmeric in food (in low doses at first so she got used to the taste & be prepared for some spitting out!), along with garlic and chilli, as natural antibiotics, (and sneak it into her hot choc with ginger and cinnamon!),& take her to the Dr as soon as possible if she seems to need antibiotics. We made bedtime heaps earlier as sleep is a great healer for the immune system, and with the help of melatonin during the week she sleeps so much better.

      She was off school a lot between Easter and Summer on the psychiatrist's advice, as PANDAS is such a massive hit to the immmune system they need heaps of time to recover, and returned to a reduced programme of 3 mornings (Mon, Wed & Fri) around mid June. Following Summer she has been able to go back full-time to school, with support. She has been diagnosed with an Anxiety Disorder, and possibly Spectrum issues, which are being investigated. Psychiatrist says she has seem 3 other kids with PANDAS symptoms, 2 with Spectrum issues and one without, and speculates maybe untypical brain-wiring makes our kids a bit more vulnerable to being hit hard by their own antibodies to STREP.

      School have been superb but it is hard being a parent of a kid who is off for mental health reasons, where it's not immediately obvious anything is wrong, whereas if it was a broken leg or flu the symptoms are immmediately visable. The psychiatrist was brilliant with me on this and gave me 'permission' to take my daughter out and about on the days she was off school so she wouldn't get too used to peace and silence and the noise of school wouldn't be too much. I was feeling I needed to keep her at home, resting, all the time. School have organised a place to escape to for calming down time on my and the Psychs request and she has a pass she shows to her class teacher when she need this, they have a 'Nuture Room' she has small group time in, and the kids in her class know she has been illl and just gets a bit anxious at times because of it. She also has a best buddy in her class who has stuck by her wiiith support from us adults around and who has been amazingly accepting of tics and anxiety.

      I have to keep reminding myself on the bad days that my daughter has had what equals a brain injury so any progress is great, and to take each day as it comes. If she is feeling unwell she stays off school so her immune system stays strong enough to fight off other Strep attacks. We have lazy weekends and go at her pace. Also we need to look after ourselves as it takes so much energy to manouvre us and the kids through the days' hurdles.

      Hope some, if any of this is helpful...Please let me know how things are going with you...I hope you're getting the support you need...xxx

    • tulamamina tulamamina HsMum2015

      hi, i have 7 and 1/2  years doter and she started to show some symptoms this september that fit pandas, we got no support in school and her enxsaety was so bed  we started home schooling but she is regressing in speach, wrighting, maths.... i talked to gp she said is school nurs teritory as is educational nature even do she is developing ocds  more and more. bin looking for doctors who have heard of pandas but no luck and then i found your replay. could you please share with me name of  pediatrition  who was so much help to you and your  little girl? you can privet messige me  it would mean so much. thank you

      Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • judeva judeva jules8484

      I found your post today and was wondering if you can tell me a little about the treatment your child got for PANDAS.

      My daughter has many of the symptoms and the consultant feels she has PANDAS but I have been waiting 7 weeks for blood results. She is on antibiotics with no results. She has not been able to attend school since December. I'm feeling so frustrated and heartbroken to see how she has changed overnight.

      Any advice would be really appreciated

      Judith

    • Mandz1 Mandz1 judeva

      We tried Penicillin for 10 days (actually made things worse)... within 48 hours after changing to Augmentin, we noticed improvements. Might be worth discussing this with your child's doctor.

    • elena27017 elena27017 jules8484

      Hi Jules, I know the thread is over a year old. I hope you have found the right treatment by now and your child has fully recovered or at least improved. I have a six and a half years old girls with horrible symptoms of pandas and we are really struggling to get a diagnosis. We live in London and the gp does not even seem to know what I am talking about. I would like to know how you managed to get a diagnosis. Thank you so much for your help. We are desperate and hopeless at the moment and our daughter and the whole family is suffering.

      Elena

  • fifide fifide

    This is what I was trying to post;

    Hi,

    We have been struggling with this for almost a year now. It would be a big help to be able to correspond with other parents of kids with PANDAS. DS4 has just started prophylactic penicillin but otherwise no-one seems to be able to suggest much in the way of help.

    DS had overnight onset of tics, separation anxiety, regressive behaviours and funny worries. He also had a proven strep infection.

    Does anyone know who actually knows anything about this condition in the UK? It seems that the Drs we have encountered don't agree with the PANDAS theories.

    Fi

    • pandas mom pandas mom fifide

      GOOD LUCK TO YOU! I AM GOING THRU THE SAME THING WITH MY 5 YR OLD SON IN THE USA. NO ONE REALLY HAS ANY TRUE HELPFUL ANSWERS FOR US. SCHOOL HAS BEEN AWFUL 

      (EVEN IF I GET HIM TO GO WHICH IS RARE) .....ITS THE ANXIETY THAT IS THE HARDEST PART OF THIS

    • ron87703 ron87703 fifide

      I am a mental health professional and a lot of the children I work with have had episodes with strep in the past and present - one thing that I have observed is when the children find themselves in a current or up coming event they become very stress - a common defense mechanism used by many is called Somatization: in which they are able to manifest emotional anxiety into physcial symptoms - a simple and easy intervention I have used and had some great success is a weekly planner - this may seem odd, but children including adults handle stressful situations if they have more structure in their lives - however, some things cannot be planned for and when this happens it will cause stress, i.e., acident, loss of life, illness etc... but by using a weekly planner, it can decrease stress and anxiety - try it you may be surprised?

    • lilly64 lilly64 pandas mom

      Hi There - I am in the USA too and went through this with the school system two years ago.  At first, the school was awful too, but then I got the principal involved and she was wonderful!!!  She accommodated every need my daughter had - set up at-home tutoring, did all of the district paper work for us and continued to monitor my daughter's progress.  This principal was one of a kind, I will tell you!  And it was her last year at the school; she retired.  Now we are in another school since we moved, and my daughter - like I said - has had some issues with the anxiety side of PANDAS, but not the incessent twitching that she did a few years ago.  In addition, she has been very sick the past several months with pneumonia and relapse of it as well as chronic asthma and lung issues.  I have cc'd the principal of this school on every email that I sent to her teachers, updating them.  Not once - never - did this principal message me back.  Not only that, but apparently she just sent the messages to the social worker.  We did not need a social worker this time around; my daughter was just really sick.  The anxiety was a side bar and was not what was keeping her from school.  I told the social worker as much and to back off.

      I know all too well about how these schools operate by wanting to put a five year old - imagine! - into a truancy status!!  I went head to head with the district and told them to back off back then as well.  They were definitely bordering on illegal behavior.

      So, I feel for you on that front, but don't sit back and let them treat you like that.  Make some noise; you are the parent - never to be overruled!

      Peace.... smile

    • lilly64 lilly64 ron87703

      I totally agree with you on structure and it does make a huge difference.  However, I do not believe in over structure either.  Some parents are SO planned that there is not one minute of a day that their child is just relaxing, hanging out.  As my mother has said her entire life:  Everything in moderation.  The moderation philosophy can be applied to every single aspect of life.

      Again, a calendar/planner is a great way for kids to know what is coming up and even help schedule events.  And I am glad that I read this today from you because I actually find myself overwhelmed so much of the time trying to do it all at once - even with my daughter.  So, because of reading your message today, I will sit with her today and we will fill out our planner for the rest of the summer....

      Lastly, I have a great example of how badly my daughter wants structure.  We bought her a guinea pig a couple of months ago.  We have all of the proper things for it and she researched beyond belief for a 9 year old on how to care for it.  However, we now find that she is a bit overwhelmed on when to do what - i.e., feeding, cleaning, etc.  So as of last night, my husband and I spoke with her about making a schedule for her.  She was thrilled about planning, and we are doing that today as well.

      Your comments and suggestions are invaluable lessons on how to schedule life, and also how to deal with distractions that were not planned.  Thank you very much!!

  • Harvey's Mum Harvey's Mum

    My son was told by a paediatric Consultant that he probably has PANDAS in March this year. He is 5.

    He started grunting/throat clearing, eye scrunching, nose stretching and shoulder shrugging about June last year. He had a very traumatic time last Easter so we initially put it down to that though we were worried and confused for him.

    He has a high riding epiglotis which had to be investigated regarding the grunting but after that was dismissed as a cause, at last we were referred to a pediatrician in Derriford hospital in Plymouth. She listened to the symptoms even though my son was not displaying them at the time. She asked him to stand up and do some hand eye co-ordination tests and then asked him to hold his arms out in front and lift the hands up (wrists at 120degrees approx) and his fingers were flickering which is a sign of chorea (pronounced like Korea). This along with the tics and grunting and speedy onset led her to suggest he might have PANDAS. She has 3 other children under her care with the contition. 1 has had a recurrance, 2 have not. She said to take him to the GP immediately if a throat infection was suspected and get a course of penicillin.

    Last week, we all went down with colds/sore throats and right on cue, Harvey's tics worsened even though he says he doesn't have a sore throat. I got some penicillin from an out of hours doctor on Good Friday and today, he is more or less tic free. I put a call in to the consultant to discuss this with her but haven't heard back yet. I am still unsure if this is what my son has as we went away for the weekend and he was extremely excited so maybe it was that. Frankly, I am just so relieved it isn't likely to be tourettes and that he seems to have a recognised condition with a treatment.

    I would love to connect with any mums in a similar situation.

    • helen61387 helen61387 Harvey's Mum

      Hi, my son is now 15, struggling since age 5 with tics, seen several paediatricians,behavioural therapist and neurologist who did tell us that our sons condition was probably due to a throat infection and to ignore it, really had no help at all and have had a very difficult time often along the years, my son, however has learned to cope with his condition and is a very kind person whom I am very proud of but he is still having to ' cope' as are we. I haven't spoken to anyone else with a child in a similar situation and would love to hear from you, have just found this site so if you get this message please get in touch,kind regards, Helen ,U.K. 

    • traerich traerich helen61387

      Hi, I just managed to get back into the site after re-registering after being locked out. I am happy to talk to you. I'm not sure PANDAS, PANS or PITANDS would relate now as they are all paediatric conditions. If your son is 15, it may be something else. In my seeking out of answers, I came accross things relating to increasing magnesium and other minerals into diets to aid parts of the brain thought to trigger tics. This is one example that although based on a much younger child, may just provide a spark of something to help your son. http://www.foodsmatter.com/environment_chemical_sensitivity/chemical_sensitivity_general/articles/tics_chemicals_diet.html

      My son is 11 and has just started secondary school. He is coping ok but stress seems to bring on a bout of short-lived tics and keeping things like homework well structured seem to ease them considerably. Kind regards, Tracey.

    • GMT111 GMT111 helen61387

      I don't know whether you've had any success yet Helen but you could join pandas pans uk on Facebook, there are over 300 parents with children with PANDAS/PANS. What you're describing certainly sounds like it.

  • Loobs Loobs

    it is such a relief to hear that there is a UK doctor who is actually diagnosing PANDAS. our experience so far is that nobody knows enough about the condition to make a diagnosis. the paediatrician we seen just said it is all classic tourettes and that although there is a link between strep and movement disorders there is no evidence to back it up? we have been lucky to have a supportive GP who has prescribed us 250mg per day of penicillin which is keeping our sons tics to a minimum, prior to that his body was jerking all over the place. 3 days into the penicillin things turned around completely.

    we are waiting to see a neurologist at yorkhill hospital in glasgow so hopefully they will be able to help. we were contemplating taking him to the US as I have been emailing a doctor over there who is a PANDAS expert. i have also been keeping in touch with other PANDAS mums in the states who have been a fantastic support. if you need more information i would recommend you google \"pandasnetwork\". Diana Pohlman runs the site, her son has PANDAS, he has had IVIG and is doing great.

    please all keep in touch, we need to make people aware of this condition, there must be kids all over the place being diagnosed as having tourettes syndrome when its actually PANDAS.

    Lou

  • may51 may51

    Hi

    i would love to be in contact with other parents who are sadly going through the same experiences as ourselves. Our now 6yrold son was diagnosed with PANDAS when he was 3. He had sudden onset severe compex motor tics and OCD(which he still has). Our GP sent him to a paed as she was concerned it was epilepsy. Numerous blood tests were taken and PANDAS diagnosed. We have been on the 250mg Penicillin since that time and there has been an improvement. We have seen a neurologist once and had a MRI done, just to rule out anything else. Our son is settled at school but has great difficulty with handwriting although his reading is good. He still has to wear a nappy at night and still manages to wet the bed every night. He has frequent joint pains. We are now concerned that he is displaying ADHD behaviour which is a new and worrying sympton.

    We feel very alone, often misunderstood even within the medical profession and fearful of the future. We are reluctant to start any other medication as we are worried about the side effects.

    We are more than prepared to travel anywhere to meet the right Dr who could help and advise us. Does anyone out there have any suggestions? sad

    • judith03815 judith03815 may51

      I have an undiagnosed PANDAS boy. I started him on Omega-3 at around age 6 just for general health and I had also read about possible protective effects on brain. An unexpected effect that we observed was major improvement in bedwetting that he was still suffering at the time possibly as a result of the PANDAs. I searched for scientific data on it's use and found very little but as side-effects are minimal it may be worth a go if you are still stuggling.

  • fran25 fran25

    Hi,

    We also suspect our son has PANDAS. We live in Ireland but would travel to UK to meet a doctor who is a PANDAS expert. Would it be possible to get contact details for PANDAS doctors in the UK.

    Thank You,

    Fran 25

  • Loobs Loobs

    Hi Fran 25

    Sorry, we never did get in touch with any PANDAS doctors in the UK. My son took penicillin for almost a year on and off and I thought that was keeping the tics away. However they seemed to just naturally wax and wean. My son had a diagnosis of Tourettes although I was convinced it was PANDAS due to the sudden onset of the complex tics.

    I hope somebody else can contact you with some doctors. I didn't really have much joy with this particular site.

    If there is anything else I can advise you about then please get in touch.

    Best of Luck

  • fran25 fran25

    Lou,

    Thanks for your reply. Right now, we still think we are dealing with PANDAS, so would you know of any other UK sites that might be of use to us. Hope you and your son are coping ok. Its not easy when something like this hits your family.

    Regards,

    Frances

  • L Haven L Haven

    Hi Frances,

    I'm sorry, I don't know any doctors in the UK. I wish I could help.

    Like you, zaccybee, we did the antibiotics (daily 500 mg penicillin), and I don't know if it helped. We also did IVIG with no results. Our boy is now 13; we've been "in the trenches" so to speak, for 7 years: MRIs, neuropsych testing, 2 hospitalizations, and more types of medication than I can remember. We were told that the average age of onset was 6 years of age. Literally the day of his 6th birthday, PANDAS symptoms emerged full-blown.

    I can offer this hope: We were also told that there is a subset of PANDAS kids who symptoms remit at age 13. When he was little, 13 seemed light-years away. Our boy is now 13. And his symptoms remitted the day before his 13th birthday.

    Best wishes to all of you,

    Lena

  • fran25 fran25

    Lena,

    Thanks for replying. I would love to talk to you privately and also to anyone else going through a similar situation, Very worried at the moment. If you are willing to talk, please reply and I will send you my private e-mail address.

    Thanks,

    Frances

  • Loobs Loobs

    Hi Frances

    I would be more than willing to chat with you privately if I can help. My son has never been diagnosed with PANDAS so Lena may be able to offer you more information than me. I got a wealth of information from a tics and tourettes forum in america. the parents on that site spent hours giving me advice and information and it was an absolute life saver for me.

    I will send you a pm with my email address and we can chat some more if you want. I understand what you are going through just now.

  • fran25 fran25

    Thanks Lou. My e-mail address is xxx. Please send me a mail and I will get back to you Lena, if you read this too and you would be willing to talk, please e-mail me privately too.

    Thanks,

    Frances

  • Emis Moderator Emis Moderator

    Hi all,

    We do not publish private email addresses on the site and the Private Messaging facility will be put live very soon.

    In the meantime I will email Lou and Lena separately with Frances' email address.

    Alan (aka Emis Moderator)

  • Philipa Philipa

    Hi!

    I have a five year old daughter just diagnosed with PANDAS - please can you help us. We need your advice on what should be done to prevent her having the horiffic symptons we have just dealt with for the last three weeks until the antibiotics slowly seemed to return her to normal. Thank you Philipa

  • Harvey's Mum Harvey's Mum

    I just thought I would post an update as I have had a few alerts regarding new posts since I wrote this.

    My son is 8 now and we seem to be in a wax & wane situation regarding the severity of his tics. The Paediatric Consultant we had at Derriford left and went to Exeter hospital (I think) and a new one took over. Thankfully the new consultant is also going down the same route as his predecessor.

    If you type p.a.n.d.a.s. syndrome into google ( full stops inc.), a whole lot of new research comes up

    including a recent white paper (type in 'p.a.n.d.a.s. syndrome white paper) by Dr Swedo 15/02/12. There is also a site that I have used called pandasnetwork.org.

    It is compelling reading suggesting that even peripheral contact with a strep b infection say in a classroom or social setting can trigger P.A.N.D.A.S. kids symptoms.

    My son has never had a positive throat swab and the updated research doesn't say that a daily on-going penicillin dose is as effective as I was led to believe 3 years ago.

    It is positive for us all that at least research is being done and that Dr''s presumably can't go on

    disregarding the condition affecting our kids. The information is invaluable for printing off and handing to Teachers, cub/beaver leaders and Dr's because it explains why our kids are the way they are sometimes.

    Our new consultant said that if my son is aware of any differences, or is teased, he just has to say, ' oh, that's just a tic I have sometimes, it's just part of who I am' which is a good way of putting it into perspective. He also put in writing to my G.P. & school that my son has no more chance of stopping the grunts, blinks & twists than he could a sneeze.

    One thing I have noticed as a parent is that computer games, wii games etc.. and tiredness all greatly increase the severity of the tics and they increase at the end of the day when I believe fatigue sets in.

    Like most parents on here, I am hoping that at around 13, the symptoms will disappear. I have hope because I found out that my cousins son had the same symptoms which disappeared as he grew up. A child of a cousin is a pretty tenuous relationship to imply a genetic link, however it was never diagnosed in this child and the similarities are very striking. Ask around within your family to see if you also have a tenuous link.

    We have learned to cope, live with and ignore the symptoms as advised by our consultant. There was a much larger increase in Jan 2012 including regression where our 7 year old went back to baby programmes, poor writing and a total inability to imagine or be inspired to think about anything not there in front of him. The worst symptoms lasted approx. 2 weeks and as school noticed, we referred once again to the consultant. The tics gradually reduced but still haven't totally gone. Stress seems to trigger increases too inc. new school year, holidays, xmas and all the excitement and the lead up to birthdays.

    1st diagnosis of this condition is very hard and scary, but as parents, we have to try and deal the hand we are dealt and I promise, it does get easier. It also means that we celebrate the good days and times and tolerate the bad as best we can. I am sorry if I can't answer your questions, but I am just a mum who's son has some weird condition that not many have heard of. We do cope as I am sure all parents of kids with P.a.n.d.a..s will learn to do as best they can.

    I don't want to patronise, but at least it isn't life threatening and there are kids certainly a lot worse of than ours. Please keep strong and don't take no for an answer if someone is trying to palm you off.

    Kindest regards to all of you.

    Tracey

    • pandas mom pandas mom Harvey's Mum

      HI

      i have a 5 year old son who was stricken with w PANDAS . i am unable to find the text that says  that even peripheral contact with a strep b infection say in a classroom or social setting can trigger P.A.N.D.A.S. kids symptoms. can you help me ? my son has gone back to school with great difficulty and i am wondering that eventhough he is on a prophylactic antibiotic after being diagnosed with post strep reactive arthritis he was exposed to the virus at school whci has worsened his condition with anxiety tremendously. any guidance would help!

      thanks!

       

    • traerich traerich pandas mom

      Hi Pandas mom. 

      The White paper is all about how the term pandas could be changed to pans or pitands due to the lack of strep positive results. It suggests that a list of symptoms that previously had to include strep exposure (pandas) was still a condition without the strep as its v difficult to get a positive strep swab. Try typing "pandas not always from strep" I saw http://www.childmind.org/en/posts/articles/2013-4-23-pandas-pans-about-acute-onset-ocd came up which had some info on it. I hope you are able to find help on your journey to answers. 

      I printed off info and took it to his teacher, and every year when his teacher changed, I did it again. His consultant said if anyone noticed or asked about it, he should say "I have pandas, sometimes it makes me do funny things I can't stop. It's just who I am." He also said each tic is like trying to stop a sneeze, virtually impossible! That is what I told the grown ups. Both those phrases helped us cope as We had something to say that explained things brilliantly. People aren't usually cruel, just curious and telling them something simple usually gets them on side. 

      To try and give you some hope, My son is now 10. He has hardly any symptoms associated with pandas and hasn't for a year or so. I keep an eye on him but as he has grown the frequency and severity have lessened. He had a pretty tough 3 years from 5-8 and i despaired at times, but it all seems to have settled now. (Fingers crossed). He has in fact just passed his 11+ and won a place at the best school for miles around as a result. He coped brilliantly through the whole process. We are very proud of him and all he has achieved despite a really rough ride at times. I really hope your situation resolves like ours and at the hardest times you can see a chink of light at the end of the tunnel. It does get better. X 

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