“But I think experiencing these thing as an adult is different than being a child and having so much chaos envelope them at once.”

i think this is the key point where the public and even families are completely mislead about such conditions. i know exactly what it’s like to experience this as a child – because these are conditions with an onset IN childhood. autism, for instance (which i have), can ONLY be diagnosed if you showed at least i believe 2 symptoms before the age of either 2 or 3, forget which. this was the case with me – i demonstrated several symptoms in toddler stages. i have vivid memories of the ocd taking hold of me at the very least by the time i was 6 years old. i was diagnosed with TS when i was 7. the adhd was always there, as was the bipolar disorder, but no one bothered to diagnose them, nor the autism, until i finally went to the dr two years ago with my own conclusions and research and asked to be seen by him and a psychologist – after a year and a half, without me influencing them really, it was conclusive that yes i had these other related / overlapping conditions. but they were always there. i may be 26 now, but all of this began when i was a baby.

speaking as someone living with these conditions, as someone with dozens of friends with these conditions, the unanimous consensus is that the general public seems to have this notion that these are childhood disorders one grows out of. there are almost no books written for adults with tourette’s, for instance – i can think of just one. autism, likewise. adhd, same situation. ocd lately has become ‘trendy’ because of people like justin timberlake and david beckham coming out saying they have it, and therefore there is a bit more awareness coming about, but it’s still widely misunderstood and when i try to explain even half my compulsions, people usually stare at me in horror because it’s a shock to their system. they’ve got used to the idea of hand-washing and checking things ten times over, they make jokes about it, they talk about their own ocd (which 99% of the time isn’t ocd at all) and trivialise it. and yet at the same time, they somehow treat it all TOO seriously, because their jokes are a way of making light of something that ultimately frightens them…and the true answer is to look to people like me, all the others i know, all the others i don’t know. we’re the ones who have lived through it all and are now finally old enough to express these things properly. it was terribly upsetting and frustrating being a child and unable to explain exactly what was going on with me. people have only ever understood so much. beyond a certain point, i may as well be speaking klingon to them.

when i was diagnosed, the drs told my parents not to bother looking into it or talking to me about it really – we received no true information when i was 7. i spent years dealing with abuse from other children, without being able to defend myself because i didn’t make the connection that it was the TS, etc. i kept the term ‘tourette’s’ close to my chest like a dirty secret i only revealed to one friend. i was ashamed, without knowing why. i was nicknamed ‘psycho woman’ when i was 11-14, because of my ocd and emotional outbursts. i was told off and separated from the rest of my class nearly every day, in school, because of my inability to sit still or stop talking. i’ve been called rude all my life for interrupting people before they’re finished speaking, and cold because of my autism leaving me unable to make ‘small talk’, and self-absorbed because when i do open up, i speak in long monologues – therefore, i prefer writing.

when i was 14 i went on medication. i tried haldol for about a week and it gave me hallucinations, made me delirious and narcoleptic, and these days i know it has the potential to leave you permanently damaged or kill you. i know someone who had this reaction to it after just two weeks – he has been left with neuroleptic malignant syndrome. i was then on some other drug that gave me such gruesome violent nightmares, i’ll spare you the details but they will never leave me. i was then put on sertroline/zoloft, which seemed to work for a while, but my brain responded with a negative feedback loop, which meant i had to keep upping the dosage until i was on 250mg a day, and i was only 15. it actually made me schizophrenic – i have since read that if you have something like bipolar disorder, you should absolutely never be put on an SSRI because you have the potential for psychosis and this will only exacerbate/trigger this. i was schizophrenic for about a year – i quite genuinely believed i was a nameless invader inside someone else’s body. i thus cut myself off from everyone i knew for a long time, convinced i didn’t know them, had never lived in my old home (i had moved overseas from america to england at 16). friends told me i was scaring them, my parents were terrified for me. thankfully i was studying psychology at college (i was 17 by this point) and had to do a paper on schizophrenia and how you could induce it with, guess what, SSRIs. i was self-aware enough to make the connection and take myself off the drugs. the dr disappeared and didn’t bother to respond when we told him what happened. now he’s running some fancy study on parkinson’s in NE America. i had actually missed my periods for half a year because of this drug, and read in the side effects that the drug could have left me permanently infertile, that it caused anxiety, depression, etc. all the things it’s meant to combat!

i went to a year of cbt for the ocd, then reached a point where they couldn’t do more for me. i just finished another year of therapy with a more holistic psychologist who was amazing, but still reached a wall in the end. she helped me to understand myself much better and i’m so grateful for her help, but really, there is no treatment for someone like me – and i’m really not that rare.

my conditions are quite severe – i tic twice a second, i injure myself regularly as a result – i have self-harmed because of the mood swings, i nearly screwed up my degree because i couldn’t sleep for 5 weeks as a result of severe ocd dwellings about death – i could go on and on and on. i have been dealing with it all my life. as someone i just spoke to today put it, ‘i cannot imagine life without it.’ as dark as it can be, this is me. this is who i am. that’s all there is to it. i have been this person for 26 years, nearly 27, and frankly, as much as sometimes i will find myself wishing to God i could make it stop, if even just through death…28 days out of a month i genuinely feel i would not give it up. i would not be this person without it.

as for the link between creativity / IQ and these conditions – the IQ bit isn’t set in stone mainly because there can also often be learning disabilities involved with these conditions, but it seems people who don’t have the learning disability side of things do tend to score more highly in IQ. the creativity…that’s everywhere. a good book to read is ‘madness explained’ by richard p. bentall – it’s actually about schizophrenia and bipolar disorder, but they’re related. another is ‘add: a different perception’ by thomas hartmann, who has add himself. they both put a positive spin on things, saying we should be looking at these things another way, and that it really isn’t all bad, that we NEED these things in order to progress as a society, and if you were to eradicate it all from the gene pool we would seriously stagnate into a world of robots. furthermore, ALL people have at least one symptom of such things. EVERYONE is at least mildly neurotic or psychotic – and psychotic does not mean crazy, btw, it’s a specific technical term that could even apply to people who are fervently religious. it’s not really as scary as people think it is.

okay this message got much longer than i predicted! but one last thing – have you checked out the main parent site for this blog, yet? http://www.conditionalpublications.com – be sure to click the ‘check mates’ link. what we are is an independent publishing house for writers with nervous disorders, and we’re releasing our first book on 11 may. it’s called ‘check mates’ and it’s a collection of fiction, poetry and artwork about / inspired by ocd, by 17 people with the condition themselves – adults, in fact, apart from two writers who are 17, but still, they’re not children. it’s the first book of its kind and it’s being put out because ocd needs to be presented to the public in an honest way – all the horror and fascination of it needs to be seen, understood. i think it’s going to succeed, and we’ll build from there.

V

Thanks for listening.

Can you please provide me with the info on high IQ’s, creativity, etc with
dopamine/seratonin ‘problems’? I would love to read it. It has surfaced more than once the discussion that a lot of PANDAS kids are labelled “gifted” but none of us can really figure out what is causing it. Perhaps that can give some insight.

But, I also think it is the strain of strep is very important. There are clusters of kids with PANDAS in certain regions. For them, one caanot think that they are geneticcaly susceptible. Then there’s other factors that can play a role such as the age the child was first exposed to it and the status of the immune system at time of infection.

Like it was pointed out earlier…the research for that just isn’t there.

In reference to brain damgae. I agree, poor choice in words. Actually, I have heard that the inflammation probably does not cause irreversible damage. But, this may depend on age of first onset and how long a person hgoes udiagnosed. Again, we just don’t know.

Can you please provide me with the info on high IQ’s, creativity, etc with
dopamine/seratonin ‘problems’? I would love to read it. It has surfaced more than once the discussion that a lot of PANDAS kids are labelled “gifted” but none of us can really figure out what is causing it. Perhaps that can give some insight.

And I fully understand your last statement. This experience, no matter how hellish it has been, has changed me. Some for the worse, but a lot for the better. Granted, I wish it was not at the expense of what my son went through, but it has made me a better person in many ways. Some of the things these young kids go through is just very bad. I have seen many kids in which they don’t improve with meds, therapy, etc. They are trapped. Those kids deserve to have a functioning life again. You say it is “you”. I understand that.But I think experiencing these thing as an adult is different than being a child and having so much chaos envelope them at once.

Thanks for listening.

i am immensely happy for you that your child found relief through this interesting form of treatment – and definitely SSRIs do absolutely nothing to alleviate these problems. i think it’s a crime that it’s not more publicised.

as an adult of 26, with tourette’s, ocd, adhd, autism and bipolar disorder myself, i have to say, though, i disagree with the notion that it’s brain damage. every scientific study done on the matter, over several decades, has shown that exceptionally high levels of intelligence, ingenuity and creativity go hand in hand with nervous / psychotic disorders – basically, these dopamine/seratonin ‘problems’ are what spark genius and high art. it has also been shown, time and time again, through various treatments of these conditions, that removing the symptoms actually flattens the personality.

as i say, there could very well be a difference between gaining symptoms of such disorders, and having the full genetic disorders that include certain personality types. i have numerous friends with such disorders, these days, and we’re all very similar types of people, in ways that go much deeper than just the tics or habits, etc.

i’m not alone in this view, nor am i supported unanimously…but really, if they found a ‘cure’ i wouldn’t take it, because it would change me so much, i don’t feel it would be ‘me’ anymore – and i really like being me, as hard as it can be sometimes 🙂

I agree the answers are not fully there yet. The research is slim. There was a diagnostic test being developed and lost funding. There are only 3 or 4 docs that are considered experts.

All I know is my son went through a very bad time At 5 years old he went through 3 strep triggered PANDAS exacerbations. He went from being “normal” (I don’t like using that word, but I think it paints a picture) to instantly have fear of germs, dirt, contamination fears. He became agorophobic. He wouldn’t eat for days. He had so many OCD rituals and tendencies I lose count. He had to spin when he passed his sister’s room and couldn’t get dressed by himself. He wanted to die. He had OCD, ADD, ODD, extreme separation anxiety, sensory defensiveness, meltdowns lasting for 2+ hours. All because of a strep infection. May I add, he did not have a sore throat or fever. Yet his strep test came back +.

Now, he is well. I thank God every day for that and I pray that for health and happiness every night.

Often, PANDAS kids do also turn to natural supplements, organic food, and parents have an overall respect for the body.

The list of disorders that actually surface with PANDAS isn’t very known nor do people realize what these kids will be labelled as if the autoimmune disorder isn’t identified.

At one point or another, PANDAS parnets are told their child may have clinical OCD, TS, bipolar, Asperger’s, even possible schizophrenia. The treatment varies greatly if it is actually that disorder or PANDAS.

For more info on PANDAS, please viist http://www.pandasnetwork.org.