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.
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.
Hi Jules
I wondered if you could suggest a doctor in UK?
My 15 year old started this summer with characteristic behaviours and I would like to get her some help.
Thanks
Clair
Hello All,
I wanted to introduce myself. Looking for battle buddies in this fight. My 3 1/2 year old was diagnosed with PANDAS this year by an allergist/natural doctor. I suspect we have been dealing with it since last summer at least. His allergist doesn't like to use antibiotics, but olive leaf extract and supplements weren't helping enough. I found a local pediatrician who believes in and treats PANDAS. He did a rectal swab and it was positve. Still positive after a month on antibiotics. Just switched his antibiotic. In this current flare we are experiencing an increase in ADHD symptoms, clinginess, crying, huge fits and a constant demand for food. Even stealing food from the kitchen that hes allergic too. He has a list a mile long that he needs to avoid but he never steals food unless hes in a flare. I spoke at length yesterday to the nurse of a pandas specialist in our state. We may be able to get him in but it will be a wait. We just cannot get this under control. And its difficult to address any of the other issues until the pandas is being properly treated.
The nurse told me there are only 8 specialists for this in the entire United States! No wonder I feel alone in this. Such a struggle~
Hi to everyboby really with children suspected with PANDAS. I would like to introduce myself. My name is Nicole and I am a registered nurse from New Zealand.
I believe for the fast fourty years I have been suffering from undiagnosed PANDAS. The reason I would like to say hello is because I can give/share some perspective from an adults point of view of living with the disease if it helps. I clearly remember the hell I put my parents through, it actually ripped our family apart sadly. I am going to raise what I believe has been going on with my GP next week and why.
I do however have a clear diagnosis of OCD which started at age 7. Due to a lack of understanding in the feild of neuropsychiarty in New Zealand this is where they stopped investigating my problems.
I however have been repeatedly telling them that I have never believed my behavorial/emotional/concentration problems have ever been soley phychiatric and that they are secondary to a bigger neurolodgical picture going on.
Until now nobody has looked at all my sympoms and joined the dots.
The biggest problem I have encountered is that once I thought that once I got the OCD under control I would be fine. This is far from the truth.
I have found that although this illness has never affected my IQ or memory I continue to have concentration problems. The impact of this has meant I am no longer able to work because I dont seem to be able to go fast enough even though I understand what it is I am doing.
I can only but say that due to having a high IQ i naturally landed in a high stress job/career which caused continually flare ups of the symptoms.
My recommendation sadly would be, going on my own experience that if your child still is suffering from PANDAS as a teenager do not encourage them to go into a high stress career. It may be a nightmare for them.
I am now off to buy some yogart as i have been told this is really good for the inflammatin in my brain.
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.
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
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.
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
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
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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
Hi Judith
Which antibiotics is your child taking?
She's on 250 mg penicillin twice a day for past month
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.
Hi I have just watched a programme on channel five and a parent who travelled to settle to see the world's best doctor in treating panda. He said that the boy had to have his tonsils out and then have plasma treatment and that should stop the antibodies reproducing in the body which causes the psychological effects and ticks etc. I hope this information helps someone. It is worth a shot.
Read my post on the thread the programme was on channel five tonight at 9pm
Hi Tiffany, unfortunately I don't have the channel so didn't see tonight's programme. I know the family featured and am pretty sure they went to New Jersey for assessment and treatment. The mother in this documentary is a member of a few pandas groups on Facebook which might be worth joining, then you could get feedback directly along with feedback from other parents dealing with pandas children.
Hope this helps,
Thanks, Karen
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
Hello My son was just recently in February diagnosed with PANDAS he was put on Autism Spectrum , development delayed, ADHD, Oppositional defiant, mood disorder was his diagnosis. He was diagnosed these at 5 but started getting the ADHD and sensory processing and Speech delay at 3 and they tried both adrenal and ritalin and he went crazy on both and needed to be taken off then he was referred to child psychiatrist who tried, Gunfacin had to be taken off after 2 weeks horrible reaction, Prozac again taken off two after after horrible reaction, Focalin and eventually risperidal. He started at .25mg of risperidal and up until February 2015 he was on 3 mg. I always thought it made him worse but neurologist and Psychiatrist kept increasing dosage even in-home therapist noticed right away how much worse he got after his afternoon dose. So in Nov 2014 we bought a new house and overnight Jake changed he regressed 100% backwards, going to bathroom in pants, not knowing how to feed himself, stopped talking, wouldn't look in our eyes or at us, was in another world. Aggressive, destructive, tantrums, running back and forth , banging on walls, counters anything he could bang on. His team of doctors all said it was not part of the autism it was medical and did about $100K worth of medical testing on him which included
MRI ( had to go under for that) the neurologist said every bloodworm under the sun (I guess strep test is not included in that category)
Seizure overnight
tier 2 genetic testing $10,000
So at overnight for seizure test my friend that worked at hospital which I will not name but we live in Boston so I am sure you can guess by the lack of checking for PANDAS. My friend came into room and said Jake is clinical not autistic don't leave this hospital without a blood strep titer test, I was like why and she said I will explain later but promise me you will order one, so the team of docs/neurologists were making their rounds and said we didn't find any seizure activity which is good and bad, bad that we can't figure your son out he is a very hard case and good because he has no seizure activity that's when the lead near doc said to order tier 2 genetic testing I said OK and before they got up to leave I said oh before we leave today I want a blood ASO strep test done on Jake. They all turned looked at me funny and said why I said because I want one and I am the parent and if I want one he will get one. They said OK. 3 hours later after we were suppose to be discharged three hours prior his blood is drawn. Two nights later on a Friday night the nurse from the seizure floor called me and said your neurologist wanted me to call you with Jake's Strep blood results and I said OK and she said can I ask you have you ever heard of PANDAS and I said no not really just bits and pieces here and there well she said I highly recommend you look into it your son's titer is 800 which is off the charts. So basically we get to see best doctor ( there was only one way this was done and it was done in 3 days because neurologist, psychiatrist and Pedi all said they have treated PANDAS before and he definitely does not have it. So I see best doc for PANDAS he is a pedi so knows how to treat with antibiotics plus works with best rheumatologist in NE. So he only accepts PANDAS patients by a phone call from someone very powerful in the pandas world and a two hour screening before you can even step through the door. He only has 40 PANDAS patients and wants to keep it that way because so many parents whose kids are autistic think their kids have PANDAS and they don't he looked at Jake and within 5 minutes said 100% PANDAS and you have the medical proof to back it up. He has 98% of the symptoms and a rash on his bum, How long has he had rash I said since about 3 and half when everything started and it was non symptomatic rectal strep. So we start treatment. But here is where I need your help my son had to be weaned off risperidal huge part of him not getting better he has been off for 12 weeks but can detox up to a year. Anyone have any PANDAS kids that had to detox a NON FDA approved antipsychotic for children which has slowed the treatment process and what was your experience? He is talking, re-training himself to go to the bathroom getting better about every two weeks but the detoxing is really slowing up the treatment anyone else going through this please help me understand I am not alone. Thanks!
Amie
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!