Parents of children diagnosed with PANDAS

Hello L, there is a growing PANDAS community of parents in the UK now. May I ask how you got youe child diagnosed. It's very hard sometimes for doctors to commit to the belief of PANDAS though it's more indisputable. Hope you are managing Ok. I have a 16 year old with it.

My 3.5 year old son is in the process of being tested/diagnosed with PANDAS. Emotional meltdowns uncharacteristic to him began in late Sept,and then anxiety and OCD began in early Oct. Then Oct 16 he awoke with leg pain so bad he said he couldn't walk/get out of bed and my pediatrician sent us to the emergency room. After much testing, they suggested it was Transient Synovitis--meaning hip inflammation that can occur after a virus and is apparently quite common in young kids. But my pedi is not convinced and drawing links to PANDAS. I agree that he seems to have MANY of the characteristics...but to my knowledge, he has not been sick (we had blood drawn yesterday to test for strep antibodies), AND, perhaps more importantly...after he shared with me some of his worries about some things happening at preschool--including a little boy who was wrestling with him very rough the day before we went to the emergency room--all the OCD stuff stopped. Like completely stopped. So...to me, this speaks more of rough play and  anxiety issues and the meltdowns seem somewhat normal 3.5 year old behavior. I obviously want him to get the help he needs...but I also feel like I'm being dragged down a rabbit hole of tests and procedures that may be unnecessary. If the OCD stuff has stopped (and he has no tics)--then is it a problem? Is it even PANDAS? This is all completely new to me, and online research only seems to turn up nightmare scenarios...the emotional meltdowns definitely started overnight, but I have LOTS of friends with kids this age who describe the same thing. I'm thankful to have a pediatrican who is aware of PANS/PANDAS, but also don't want to be falsely filed under this subset. Does the OCD stuff go away on its own? I know 3YO usually don't have OCD (his is involving germ phobia and handwashing...but these were also emphasized at school which he jsut started the month before.) He is a very bright, sensitive kid who is WAY to aware of things and in my mind, this wouldn't be out of character for him (though the meltdowns are a new thing...but so is 3. 5 years old!)

Just to say thank-you and how much reassurance I have just had in reading all the experiences of folks on here, although wishing none of the kids and parents ever had to go through this horrible illness. Our 8 year-old daughter had what looked like a nervous breakdown just before the Easter Hols this year. GP ruled out diabetes and UTI and then left us to work out what to do with a terrified child who couldn't eat any small pieces of food as everything looked like insects to her, thought creatures would come and get her through mirrors, and was bravely trying to fight off compulsions she couldn't for the life of her work out why she had. 'My body is daring me to do x, but I don't want to' was her explanation.

A friend who is a Pschyatrist for Adults came to see us and suggested it might be PANDAS which she had attended a course on over a year ago, so we did some internet research and one lady's description of her daughter's PANDAS matched my girl's symptoms exactly. GP did a throat culture but negative. Symptoms hadn't lessened so next GP sent us straight to Paed Assessment Unit at local hospital who did a blood test and discovered a cut on her back which wouldn't heal had active Strep infection and Strep antibodies were through the roof in the bloods. Once on antibiotics her symptoms improved a lot but the tics and anxiety have never really gone away. 

We were referred to Child & Family Psychiatry who have prescribed bio-melatonin to help her get to sleep, which has been such a blessing to us and her general health, and are looking into Aspergers as she had some issues prior to the PANDAS outbreak. Psychiatrist had seen 3 other kids with PANDAS, and said 2 had Spectrum issues, and one definately didn't. SHe suggested that possibly my daughter's neural brain-wiring might be atypical which might have left her less resilliant to the PANDAS effects than a more neuro-normal child.

School are doing their best but she is terribly anxious and gets very worried about being shut in school and not getting home if she needs, and when she gets ill with anything she worries that the PANDAS is coming back, which is what we worry too. At the moment she has started waking in the night the last 3 nights to go to the loo, and is very emotional and tired and not keen to go back to sleep once up (3-5am). I am keeping a close eye...All the best to all of you out there coping with children who have gone through or are going through similar. It's so hard as PANDAS is invisible,and hard to explain to people around. A broken leg you know what to do and how to react and how to help but this is way harder...xxx

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 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.

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

Hello l haven, are you in the UK, if so there are 2 fb groups Pandas Pans UK and PANDAS support UK there are hundred of parents on both.x if you're in the US, there are several groups.x

Hi there I'm struggling for a diagnosis and PANDAS seems so much like my son he is 7 are you now

Getting help xx

Hi everyone just a quick catch up as I haven't posted on here for a whils. My DD is now 12yrs old and still suffering but with varying lengths of time between "episodes". 

Our Paediatrician has been amazingly supportive of all symptoms including ASD issues as well as psychosis etc. He referred us to Manchester Childrens Hospital Immunology department. Unfortunately they don't appear to beleive in PANDAS. So I have asked our paediatrician for a second referral to someone that actually believes that PANDAS actually exists. So we are both searching desperately for anyone who as least shown an interest in PANDAS looking through medical papers written recently etc but there is very little in the UK.

I think I have found a link to Birmingham Hospital and I have emailed them but very little else appears to be out there in the UK sadly.

Does anyone have any suggestions of someone to see in the UK?

Thanks again sending healing hugs to you all