Antibiotic Prophylaxis with Azithromycin or Penicillin for Childhood-Onset Neuropsychiatric Disorders

Here is a great research paper.
http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf

I didn't know about the thyroid/vaccine link & other good information

This is a great write up of very useful facts and information
http://www.betterhealthguy.com/joomla/blog/264-physicians-round-table-2012

Levels of Strep for Adults with PANDAS

The American Journal of Psychiatry has published an article about strep implications in adults:
http://ajp.psychiatryonline.org/article.aspx?Volume=159&page=320&journalID=13

Here is a great PANS Video I found on Facebook

https://www.facebook.com/photo.php?v=3052381110569

The Way Things Are Going With Diagnosis - PITANDS, PANS and PANDAS subgroups

This is really important.  I am sure immune problems do not help and my son has various allergies - nuts and fruit (the fruit allergy was triggered when my son was taking prozac).

http://pandas.yuku.com/topic/55/PITANDS#.T5MuxrO0xIF

PANDAS CAN BE FLARED BY PROZAC, ALSO KNOWN AS FLUOXETINE!

At last, I have found a report detailing that some kids can have their PANDAS flared by prozac.  This was written 4 years before my child became very ill:

http://mbldownloads.com/0806PP_Murphy.pdf

Just Found Site Moderated by Dr Trifiletti - Full of Important Information

This is my reading for tomorrow.  Just found this site and I believe Dr T is a leading PANDAS expert.

http://pandas.yuku.com/

For the first month it seemed very difficult to find information - now I am uncovering some great sites.  Things are coming together and I am feeling hopeful for my own son.  Hopeful and empowered.

You Tube Video of Girl With Lyme - Originally Thought by Doctors to Have a Psychiatric Issue

http://www.youtube.com/watch?feature=fvwp&NR=1&v=sr4M4DBtIks
Do read the comments under this video.

A Very Positive Video of Sammy on the Today Show showing that Cure is Possible

http://www.youtube.com/watch?v=50bQtkfiHvs&feature=endscreen&NR=1

Video of a Brave Young Girl With Pandas and Trichitillomania (Hair Pulling)

When my son was on the SSRI that triggered his PANS, he did go through a stage of hair pulling.  He would grasp chunks and pull until his fingers came away covered in hair.  It was very distressing.  He seemed to feel no pain but had a compulsion to do this.

http://www.youtube.com/watch?NR=1&feature=endscreen&v=MF31gl3AdAU

Wiki explanation of trichotillomania:
http://en.wikipedia.org/wiki/Trichotillomania

Ruby 's Video No 6 - She is in Hospital Undergoing Plasmapheresis

It is one thing to read about treatments and quite another to watch them and have them explained.  I feel honored to be able to see these great videos made by a very courageous and generous young woman.

http://www.youtube.com/watch?src_vid=PfTzaqYOONc&feature=iv&annotation_id=annotation_633437&v=XFNM44v7lEg

3.5 Years In and Ruby is Considering Plasmapheresis - Video 5

Wiki description of plasmapheresis.
http://en.wikipedia.org/wiki/Plasmapheresis

Ruby, 3.5 years into PANDAS/PANS, discusses plasmapheresis with her mum.
http://www.youtube.com/watch?src_vid=2u6QU9bamtk&annotation_id=annotation_637183&feature=iv&v=PfTzaqYOONc

PANDAS, PANS and Stuttering

The symptoms of PANDAS and PANS can wax and wane and evolve.  This is video 4 of a great series that follows Ruby through her treatment and, whereas the movements are a little less, she now suffers from stuttering.  She also points out what she terms her 'moon face' (facial weight gain) and mood changes caused by the strong doses of steroids she has taken.

http://www.youtube.com/watch?src_vid=8Yv2dhJ1LtU&feature=iv&annotation_id=annotation_239920&v=2u6QU9bamtk

IVIG, Headaches, Steroids and Other Medication

I am working my way through the fantastic videos by sherristonenyc.  The next one discusses IVIG, which is a treatment for Pandas that I understand works best before puberty, but that research is now showing can also be a good treatment for teenagers.  Big decisions - it is more than popping a couple of pills.

http://www.youtube.com/watch?src_vid=bGamxv1esL0&annotation_id=annotation_904503&feature=iv&v=8Yv2dhJ1LtU

Steroid Burst - You Tube Video Explaining This

Sometimes treatment is started with a steroid burst.  All explained in video below:

http://www.youtube.com/watch?src_vid=c6EyE7KWIPA&feature=iv&annotation_id=annotation_86747&v=bGamxv1esL0

You Tube Video By Very Brave Young Lady With PANS and Her Mum

This is great as an example of motor tics  My son is not like this - his sensory system is involved and he does not like contamination from other people (eg sneezes, being touched, somebody breathing too near to him).  He gets compulsions and has more OCD than tics or choreoform movements - though he has he share of those too.  There are several different symptoms - and the second video goes through them for more clarity.

http://www.youtube.com/watch?feature=endscreen&NR=1&v=c6EyE7KWIPA

http://www.youtube.com/watch?v=DHEWfmWf4oo

It is not good to be alone through what can be, by its very nature, a very isolating condition for both sufferers and carers.

Coverage of LeRoy Tic Girls in New York Times Magazine - Long Article

http://www.nytimes.com/2012/03/11/magazine/teenage-girls-twitching-le-roy.html?pagewanted=1&_r=3

Long - but interesting article about the girls from LeRoy who suddenly went down with tics.

Just For Fun - If You Do Not Agree With Your Doctor, Take Your Lead From This Cat

http://www.youtube.com/watch?v=6utE5APd4wA

Is Schizophrenia Also Sometimes Caused by Antibodies? New UK Research Starting.

The PANDAS lead on research and recognition of mental illness caused by antibodies may help other conditions too such as more understanding of Schizophrenia.  Sometimes Schizophrenia may also be caused by antibodies attacking the brain - in which case there may be a cure for a minority.

http://www.independent.co.uk/news/science/scientists-shocked-to-find-antibiotics-alleviate-symptoms-of-schizophrenia-7469121.html

Parents With 'The Knowledge' Get Good Help For Their Kids - PANDAS in the News

Just found an interesting article - another child is saved.

http://napervillesun.suntimes.com/photos/galleries/10761378-417/mom-fights-for-pandas-diagnosis-after-sons-sudden-onset-of-ocd-symptoms.html

Kids get wrongly medicated

Antidepressants and other drugs can have serious side-effects.   The symptoms and not the cause may be treated and if the drug is a trigger - get much much worse.

http://www.cchrint.org/psychdrugdangers/

There is a good search facility on the above link.  Try checking some of the drugs that are commonly given to children - prozac, fluoxetine, risperdal, ritalin ...

PANDAS IN THE NEWS, LeRoy Schoolchildren Show Signs of Recovery

It is great to hear that three are fully recovered and six are significantly better out of the 19 who developed uncontrollable tics and twitches.

Read and watch all about it here.  The opposing views of cause and why the recovery is happening are interesting.

http://www.dailymail.co.uk/news/article-2106355/New-York-Tourettes-students-signs-recovery.html

http://edition.cnn.com/video/#/video/bestoftv/2012/02/24/exp-drew-medical-mystery-update-hln.cnn

Dr Mercola, Strep, GAPS

I have a lot of respect for Dr Mercola and the GAPS diet.  I may try to do some articles later on Kefir - I make my own - and other aspects of gut health.  For now, enjoy this article:

http://articles.mercola.com/sites/articles/archive/2012/04/16/bacteria-on-gut-flora-causes-ocd.aspx?e_cid=20120416_DNL_art_1

Dr Phil - Lyme

In case you missed or are interested, Dr Phill covered Lyme on his program on Friday.  You can find this on you tube:

http://www.youtube.com/watch?v=-SqunhDL_p4&feature=related

Steroids can worsen OCD and tics - I knew it!

I have found evidence at last that steroids can worsen OCD and tics.   The picture is building.

 Corticosteriods are an unfavorable treatment modality because they worsen OCD and tic behavior.

This is from the following web page:

http://www.childadvocate.net/PANDAS_treatment.htm

So, in addition to transition year with no proper support at school - my son had severe stomach aches and exacerbated OCD because of the steroids he was given to stop the allergic reaction to hazelnut chocolate that covered an icecream he ate at a swimming pool in Sweden.  He reacted severely to this medication.  Nobody told me there would be side-effects.

This reaction was very mild compared to that of the prozac, given the following year, but significant.  Before this downturn, my son had been getting along just fine.

Detailed Description of Pandas

Just found this and it is quite a thorough list of the problems faced by kids with Pandas.

http://webpediatrics.com/pandas.html

At last, I am beginning to make progress in my understanding of this condition.

How to begin saving my own Panda?

I have read Beth Maloney's Saving Sammy and bought her toolkit - worth every dollar:

http://www.savingsammy.net/products-and-services.php

I have spent hundreds of hours trawling the internet for information.

Amazingly, my son has given a blood sample and now all we have to do is wait.  Wait for the results and hope that something shows that can be quickly treated.

I found a list of specialists in this country (only 3 listed) and have booked an appointment with one of them. It is so frustrating this wait, especially when I read that IVIG gets better results when performed before the child becomes a teenager.  We are running out of time on that one.  Also, I want my child back at school and am fighting for a statement of special educational needs - why am I fighting?  Why don't these kids get the help they need without a fight?  Twice now a statement has been turned down.  It does not make sense.

My shoulders are broad - I will get my son better.

NIMH, Susan Swedo & Co

For anyone still wanting to know the basics of  PANDAS, PANS and PITANDs then the following link gives a huge amount of detail and background.  To me, Susan Swedo is a modern day Hans Asperger, discovering, highlighting and documenting a 'new' condition and putting the word out - thereby helping many to understand what is happening to their loved ones.  The mystery has been unraveled.

http://intramural.nimh.nih.gov/pdn/web.htm

Beth Maloney - Saving Sammy

If you have not yet read Beth Maloney's "Saving Sammy: A Mother's Fight to Cure Her Son's OCD" then I can highly recommend it.  It is very easy to read and tells of how devastating, sudden and disabling Pandas can be - and then Beth managed to save her son and generously shares the journey with us.  The Amazon link allows you to read a few pages - but do buy this book if you can.
http://www.amazon.co.uk/Saving-Sammy-Mothers-Fight-Cure/dp/030746184X/ref=sr_1_1?ie=UTF8&qid=1333830161&sr=8-1

Case Studies

There is another excellent Pandas site called PandasNetwork.org - highly recommended.  One of the sections contains some case studies.  These case studies give a brief, but very real, overview of life with a Pandas child.

http://pandasnetwork.org/impact-on-the-family-2/amily-case-histories/

Another Good Pandas Site

This site is useful for its descriptions of PANDAS.
http://www.adhd.com.au/PANDAS.htm

What is Pandas and Pans?

Busy as I am I do not have time to repeat work that has already been done by the hard work of others.  This new report is excellent at explaining:

http://ocfoundation.org/uploadedfiles/MainContent/About_OCD/PANDAS%20to%20PANS%20-%20Final%20form%20for%20Pediatrics%20%20Therapeutics%202012.pdf

and I can highly recommend the site where I found it:

http://www.ocfoundation.org/

The beginning.

Our journey started with the birth of my son in the year 2000.  A beautiful, big boy with blue eyes.  Perfect in every way.

Tragedy struck when he was just a toddler - he was savaged by a dog.  Great surgeons saved his arm, but he was never the same carefree child again.  He developed a urination problem and was thoroughly checked out at great expense by private urologists - no problem was found.  Yet my child started to spend a long time at the toilet - unable to get away because of the desire to need to urinate, even though he just been and might have stood at the toilet already for 20 minutes trying to go.

This continued until the age of 4, when he started school and was shown how to wash his hands.  A handwashing habit then developed to go with the urination habit.

At the age of 9 my son was given steroids on holiday in Sweden after eating a chocolate-covered icecream that contained nuts - he is allergic to several types of nut.  Life went a little downhill after this - he had a terrible reaction to the steroids and didn't quite know what to do with himself - jumping up and down on the spot and screaming until he fell asleep.  I think that the air hostess on the journey home would have happily given us parachutes to complete our journey - luckily she did not have any.  Following this, Panda (I will call my son Panda), developed severe stomach aches.  The stomach aches interfered with school, where followed a year of bullying (he was always badly bullied at school because of his OCD - his OCD worsened this year, transition year at school with no appropriate support it became a game for other kids to touch his hands so that he had to go and wash them).  At this time, my son was diagnosed with Aspergers which surprised many as he was great with metaphors and had good eye contact.  In fact a double diagnosis of Aspergers and High Functioning Autism was slapped on him - though I am sure you cannot be both.  My son started to beg me not to take him to school - I wish I had listened and understood.

The next decline was at the age of 10 when my son was given an SSRI.  The result was tragic.  Full blown PANS wiped out his life.  It is only now, 2 years down the line that I have been informed that, if there is an underlying antibody problem, SSRI's can make it flare and flare it certainly did.  The SSRI was not, in my view, properly monitored and my son was badly harmed by that in its own right too.  The side-effects were numerous and severe.  He developed, overnight, severe anxiety and OCD with tics and Tourettes and could no longer eat a proper meal.  It was shocking.

My son has been out of education since this time, too unwell to go to school or relate to a tutor.