OCD and Christmas Presents

My son - for the first time since he was given SSRIs in 2010 - was able to open his Christmas presents today.  It was a good time.  The huge anxiety and OCD is beginning to lessen.

E Coli and H Pylori

E Coli and H Pylori have shown up in recent cultures. I haven't got anything to say about them except - why us?  There is also mold in my son's gut.  An anti viral has been prescribed so hopefully this little lot will soon be wiped out.  We are parasite free - one blessing.

Special Day - My son gave me a smile from the heart

We haven't been well lately.  A cough and cold has gone round and it has been quite waring and flared my son's PANDAS.  But today - something has changed.  My son gave me the biggest, best smile I have ever seen.  It was real and lit up his eyes and was sent in my direction.

So happy.

Magnesium Deficiency - Tired Parent - Epsom Salts Bath

A long while ago I got into the habit of putting a cup of epsom salts into my bath - it was suggested to me by a prominent researcher in the autism world when I went to one of his lectures and complained of how difficult things can be some times.  Long days - short nights ...  He promised it would make me feel better.  I am not sure that it does - but I do get some time to myself in warm and relaxing water and if I am short of magnesium it will be helping.

Some of our children also have magnesium deficiencies.  If they do then epsom salts in the bath can help to address this.  Of course, being as sensitive as they are - occasionally a child will find this irritating to their skin - but most children get on well with it in my experience.

Here is a site with a great deal of advice on how to use epsom salts as a powder in the bath or in other forms.

http://www.bbbautism.com/epsom_condensed_plaintext.htm

I buy the salts in 20 kg bags - it works out cheaper that way.  It is heavy so I buy it online and have it delivered.

Alkaline Foods

Sometimes we are told that our diets are too 'acidic'.  What does that mean?  How can you make it less so? Some of these ideas are not well explained.

I have found this links good - I get some things right:)  I do not understand why lemon is seen as alkaline though and not acidic.  So much to learn ...

http://www.naturalnews.com/038274_alkaline_foods_improved_health_conscious_eating.html

How bacteria talk - biofilms - TED lecture

http://www.ted.com/talks/bonnie_bassler_on_how_bacteria_communicate.html

A helpful charity for UK children with disabilities

http://www.childrentoday.org.uk/

Cunningham PANDAS Test site

http://www.moleculera.com/

Autoimmune encephalitis

http://pandasnetwork.org/wp-content/uploads/2012/12/Autoimmune-encephalitis.pdf

Vaccine warnings

http://therefusers.com/refusers-newsroom/autism-symptoms-are-identical-to-encephalomyopathy-listed-on-vaccine-package-inserts/#.UMOk3uRWzTo

Mitochondrial information and testing

http://www.courtagen.com/mito-about-disease.htm

Is folic acid fortification linked to MTHFR and autism?

http://mthfr.net/folic-acid-fortification-increase-in-mthfr-and-rise-in-autism/2012/05/11/

How to heal a leaky gut

http://cookitallergyfree.com/blog/2010/08/13-tips-on-how-to-heal-the-leaky-gut/#.UL--feRWzTo

Yeast (Candida) - how to use nystatin or diflucan

In addition to these medications there are natural products such as curcumin that you can use.

http://www.autismrecoverytreatment.com/Topic/yeast/

Help with GAPS diet - soothing and healing for the gut

http://empoweredsustenance.com/scd-and-gaps-essential-posts/

Stimulant drugs and tics

http://www.additudemag.com/adhd/article/9759.html

PANDAS and biomedical intervention - by Kurt Woeller

http://drkurtwoeller.blogspot.co.uk/2009/02/could-your-childs-behavior-be-related.html

Candida - information

http://www.gilbertssyndrome.com/candida.php

http://www.candidaplan.com/new/faq_2/faq.php?t=sq&uin=11

Progress

I am pleased to report that my son is now 30% better.  The azithromycin is slowly helping him to rid his body of whatever is making him so ill.  In addition to killing bacteria, it is also an anti-inflammatory and I think there is research into using it for Eosinophilic Gut Disease - which he has.  So somehow it is working its magic and my son is reappearing.  So happy.

I have also got the results of an OAT test from Great Plains Laboratory - and that is allowing me to know where to target with vitamins.  My son also has yeast and clostridia - and we are targeting these too.  On its own yeast can cause some serious symptoms.  I will put up a list when I get time.

CD57 - Lyme related blood test - informative article by Ginger Saveley

http://www.researchednutritionals.com/information.cfm?ID=200

Hans Christian Anderson' Quote

Just living is not enough.


One must have sunshine, freedom, and a little flower.

OATS Test - urine marker analysis

Attended an excellent seminar at the weekend.  I was so lucky that Dr William Shaw went through my son's OATS results with me.  I feel I have a good understanding of what is going on now and how to correct some of the deficiencies.  My son's doctor recommended vitamins - but now I know why and that makes me feel much happier.

Here are some lectures - including one about cholesterol - I didn't realise that it wasn't good to have a very low cholesterol level.

http://www.greatplainslaboratory.com/home/eng/recorded_webinars.asp

My son related to others today and laughed and played some ball games with them.  It made my heart sing.

My son is improving

We have travelled along a very rocky road but my son is at last making steps in the direction of health again. The Azithromycin is doing its job well, helped by 4 weeks with an additional antimicrobial and a few nutrients to help where we have found deficiencies in blood tests.

There is still a long way to go, but when my son asked how long it will take to get better and the doctor replied that he would hope to be shaking his hand in a year - it warmed my heart.  I would so love to hug my child - but he cannot tolerate anyone near to him yet - not even his mum.

IgG1, 2, 3 and 4 - recommended PANDAS diagnostic test

My son scored low on one of these so I had a quick search to see the basics of what they are - his doctor will, of course, explain more fully.  But, in the meantime, here is a quick overview:

http://www.cidpusa.org/IgG3deficiency.html

This is a little more technical:

http://ednieuw.home.xs4all.nl/IgGsubclasses/subkl4.htm

MTHFR - find a doctor and other useful information

http://www.mthfrsupport.com/

MTHFR - compound heterozygous

I keep trying to learn about this and now also have oxalates to learn about -  more about that another time.  I think I have put an article about MTHFR before - to add to it is this which is useful:

https://sites.google.com/site/drjoneskids/mthfr

Dr Jones is a real star in the States - a real leader amongst Lyme doctors.  Humble with it.

http://mthfr.net/

and this is the type of testing that is available - or a more simple test from your own doctor if they offer it should be available:

http://www.holisticheal.com/health-tests/nutrigenomic-testing/comprehensive-methylation-panel-with-methylation-pathway-analysis.html

CD57 Blood Test - Lyme

What started out as a journey to find out if my children had PANDAS has gotten ever deeper.  We have now uncovered MycoP, Lyme, Strep, Bartonella and other infections.  The results for a recent CD57 blood test have just come in.  My result is 16 and one of my son's has a level of 20 and other markers.  This site gives a good explanation of what this means:

http://www.healthcentersofamerica.com/information.cfm?id=144

New PANDAS Blood Test: Madeleine Cunningham and Rosario Trifiletti

http://www.blogtalkradio.com/radiopandas/2012/11/08/house-calls-wdr-trifiletti--pandas-test-breakthrough

Long radio discussion about PANDAS with experts Dr Trifiletti and Dr Cunningham.

IVIG - information on the different brands

http://www.ashp.org/s_ashp/docs/files/DShort_IVIGsidebysideupdatedDec07.pdf

My son's health is improving

My son is, at last, starting to get better again.  The amoxycillin from May to July improved his health by 20% and then, when it was stopped, he deteriorated back to where we began.  He is now taking azithromycin and  some vitamins - the ones blood and hair tests showed he was low in - and I am beginning to see him improve again. Happy days.

Black mold

Black mold in our houses and schools can pose a serious health risk if it develops.  This article describes a little about the problem:

http://www.essortment.com/black-mold-46777.html

and with the recent hurricane and flooding in America, this following CDC report also gives insight:

http://www.cdc.gov/mmwr/preview/mmwrhtml/rr5508a1.htm

Gunilla Gerland and her son's PANDAS interview in Sweden

http://www.aftonbladet.se/halsa/article15639967.ab

You should be able to automatically translate this into English, unless, of course, you can read Swedish.

Boston Globe PANDAS article - brilliant

Neil Swidey has written a brilliant article about PANDAS for the Boston Globe.  Knowledge is moving forwards ...

http://www.bostonglobe.com/magazine/2012/10/27/the-pandas-puzzle-can-common-infection-cause-ocd-kids/z87df6Vympu7bvPtapETLJ/story.html?s_campaign=sm_tw

Yeast - another issue

The results of a test taken back in August have now come back from the States.  We are dealing with a yeast issue on top of everything else.  So much to learn.  Here is a short article about yeast - guess I need to shop for garlic.

http://www.ei-resource.org/treatment-options/treatment-information/antifungal-treatment/

PANDAS: Triggers, Treatments and Triumph radio show

http://www.blogtalkradio.com/radiopandas/2012/10/18/triggers-treatments-and-triumph

Under Our Skin - famous Lyme documentary now available to view worldwide for free

http://articles.mercola.com/sites/articles/archive/2012/10/13/under-our-skin-documentary.aspx

An interesting blog that states the worst of PANDAS - and hope

http://sweetpeasjourneywithpandas.blogspot.co.uk/

Tired today - but have found these pages that look interesting ...

... I will read them tomorrow.

http://clinicaltrials.gov/ct2/show/NCT01281969

http://www.nimh.nih.gov/about/director/2012/from-paresis-to-pandas-and-pans.shtml

http://www.health.harvard.edu/blog/can-an-infection-suddenly-cause-ocd-201202274417

http://fullsoulahead.com/2012/10/03/child-with-pandas-taken-from-parents-via-boston-childrens-hospital/

http://childrenshospitalblog.org/one-mothers-story-how-strep-throat-attacked-my-childs-brain/

http://www.youtube.com/watch?v=9TX0ypCRT-0&feature=related

http://www.drjoneskids.com/

http://www.doctor-natasha.com/a-wonderful-story.php

http://www.neurogistics.com/index.asp

http://www.childrenshospital.org/views/april09/q_and_a.html

http://www.lymedisease.org/resources/children_pdf/CorsonPediatricLymeTalk.pdf

http://www.gordonmedical.com/unravelling-complex-chronic-illness/whole-families-with-lyme-disease/

Blog conversation with German Lyme specialist that I found ...

http://index.healthboards.com/lymedisease/308082/lyme-disease-and-diflucan/

I do not recommend this treatment.  It is here for interest only.

Constipation - we usually use psyllium husk - but his product is supposed to be better

http://www.seekinghealth.com/chia-seeds.html

Dr Trifiletti talks about the Sept 2012 California Conference on radio

http://www.blogtalkradio.com/radiopandas/2012/10/03/house-calls-with-dr-trifiletti--important-new-research

How to Make Your Own Halloween Chocolate

http://chickiepea.wordpress.com/2012/10/01/kitchen-sink-chocolate/

Details of blood tests - I do not recommend these, but they are interesting to know of

http://www.lef.org/Vitamins-Supplements/Blood-Tests/Blood-Tests.htm

My son is herxing

My son has the same symptoms on azithromycin as he had on augmentin.  He gets scared of being in a room on his own.  Through the night he calls out 'Mum, are you there?'.  When I answer he turns over and goes back to sleep - but he needs to feel secure first.  He doesn't like to use the en-suite - a room within a room seems to frighten him if he is alone.  It took only a few days for this symptom to disappear last time.  He was fully aware of it and asked 'Why do you give me medication that makes me scared?'.

As we have already had a good improvement in health on azithromycin, I am full of hope that a much better recovery is on its way.  There is nothing more that I would want to see than my son happy and fully functioning.

NIMH PANS Symptom Scale

https://word.office.live.com/wv/WordView.aspx?FBsrc=https%3A%2F%2Fwww.facebook.com%2Fdownload%2Ffile_preview.php%3Fid%3D176811249122801%26metadata&access_token=1451921825%3AAVIhRpnQ6vSFJ-r3En5N7uyyMIDZPyp_LesenqmWsaQK3A&title=PANS+Scale.doc

Description of first 50 Cases of PANDAS

http://intramural.nimh.nih.gov/pdn/PANDAS-REF2.pdf

Azithromycin - just started to take this

Following the augmentin that my son took from May to July, he improved by 20%. Slowly, since that time, he has gone back to the same level of ill health as before.

Yesterday he started on Azithromycin.  We have Lyme (big surprise) and high strep titres (over 800) in the family.   Hopefully, there will be no allergic reactions.  Azithromycin is now also a recognised treatment for Oesinophilic Gut Disease  - I am hoping that his stomach aches may also improve.

Learning the other day that IVIG has been known to cure Oesinophilic Gut Disease makes this option more appealing.  I had turned my back on it - but will research it again.

I look forward to one day having a child free of illness who can, once again, get on with enjoying his life.

PANDAS in the News

http://www.wndu.com/home/headlines/Parent-alert-Strep-infection-causes-mental-illness-171580321.html

Lyme & Autism - Charles Ray Jones on You Tube

http://www.youtube.com/watch?v=NoEsgLyN2-0

Dr Trifiletti chats about PANDAS - hour radio show 19/9/12

http://www.blogtalkradio.com/radiopandas/2012/09/20/house-calls-with-dr-trifiletti--antibioticsprobiotics

Some excellent, must-watch videos about Lyme ...

http://www.lyme.ws/lyme-induced-autism-part-i/

part 2 follows this.

Interesting and thorough Lyme Site

http://buhnerhealinglyme.com/category/co-infections/bartonella/

PANDAS on youtube

http://www.youtube.com/playlist?list=PL675CB18FD542CEDA&feature=mh_lolz

A selection of videos on you tube.

Part of healing will be eating a nutritious, anti inflammatory diet

I had a chat with a nutritionist yesterday and as well as some supplements, I need to get back to basics - so here goes to chicken broth:

http://lifefoodjourney.blogspot.co.uk/2011/11/my-chicken-broth-process-method.html

The GAPS diet is one I have roughly followed for a couple of years - this site has some great recipes that I will be making:

http://lifefoodjourney.blogspot.co.uk/p/gaps-recipes.html

Great Burrascono Lyme talk on youtube

http://www.youtube.com/watch?v=fv2HS8J58qY&feature=youtu.be

An interesting new Lyme blog site I have just found ...

http://lymeywifey.blogspot.co.uk/

Amoxicillin failure in strep throat

http://www.pediatricnews.com/views/id-consult/blog/amoxicillin-failure-in-strep-throat/bedfe23ae75bfc7dd86f8bc32c438492.html

App to help those with OCD

http://www.liveocdfree.com/
I have heard good things about this - but am not a doctor and have not looked at it myself so cannot give a personal recommendation.

Some info about Bartonella ... cat scratch or a co-infection from ticks

http://jmm.sgmjournals.org/content/51/11/915.full

Bartonella - by J Schaller

http://www.personalconsult.com/free/Checklists2012.pdf

The power of herbs - an article explaining what some may do ...

http://nutramedix.ec/pdfs/antimicrobialcompared_Bs.pdf

New European Guidelines for Tourettes

http://peer.ccsd.cnrs.fr/docs/00/68/35/00/PDF/PEER_stage2_10.1007%252Fs00787-011-0164-6.pdf

Radio interviews with Beth Maloney and Rosario Trifiletti - excellent information given

http://www.blogtalkradio.com/ppn

More on methylation

My son's test have shown up methylation issues.  This is helpful:
http://functionmedicine.com/blog/

Neuro immunological abnormalities

Was looking this up, which it is now said that my son probably has - but a bit more investigation is needed - and I came across the following:

http://www.publichealthalert.org/Articles/scottforsgren/neuroimmunology.htm

Seems that PANDAS/Lyme/Immunological issues are all connected.  Wish it were quick and easy to unravel this mix.

I think my son may need to go back onto augmentin ...

... he was on it for 2 months and got 20% better.  He is now slowly starting to change back - afraid of insects again, that sort of thing.  It was so promising a couple of weeks ago when he proudly told me he had watched a spider wrap up a fly for its dinner in web.  One of his symptoms had been that he was terrified of flies - it seems that may be returning.  A psychiatrist has just given approval for augmentin but I want to see how my son settles with the medication for his eosinophilic gut disease first.  We also need an elimination diet. This is very serious.

The good thing is that there are things that can massively improve his health that have been found by blood tests and other examinations.  It is slow going but we are getting there with a couple of good doctors helping.

2 Hours of Pandas Film to Watch - with Dr Bouboulis

http://www.kidsfirstrgmd.com/episode-guide.html

Some great info in these 2 documentaries.

August 2012 Hour long TV documentary about OCD

http://www.bbc.co.uk/iplayer/episode/b01m42rz/Growing_Children_OCD/
This may not be viewable outside the UK.

Found this French news clip about antibiotics interesting

http://www.youtube.com/watch?feature=player_embedded&v=yOno_2m_8LY

Getting Blood Tests Despite Awkward Doctors

The following is a link to a company that will enable you to get blood tests taken if you are struggling with your current doctors and worried about your health:

http://www.lef.org/BloodTest/

This is the home page

http://www.lef.org/

I have not yet tried this site - but do struggle to get blood tests done and may use it in the future.

I am not a doctor and cannot recommend this - consult with your own doctor first.

Igenex Lyme Diagnosis

My Igenex result, much to my astonishment, has just come back positive.  I have Lyme disease.  Certainly I have many symptoms.  I am not sure that getting the right help to get rid of it is going to be easy.  This link gives Dr Joseph Burrascano's Treatment Guidelines.

http://www.lymenet.org/BurrGuide200810.pdf

OCD - Glutamate

http://www.ocfoundation.org/glutamate.aspx

Interesting Pandas article in Psychology Today

http://www.psychologytoday.com/blog/attention-please/201102/evil-pandas-scourge-the-brain

Great Lyme Site

http://www.drjoneskids.com/

Report about Lyme Disease and PANDAS

https://docs.google.com/viewer?a=v&pid=sites&srcid=bGR1Yy5vcmd8bGR1Y3xneDoxYThkYzIwNGNmODFkNWQ3

Ruby's New Video - Video No 8

An update from Ruby - a teenager with PANDAS.

http://www.youtube.com/watch?v=2WDIRLe-sdI

Babesia and Bartonella

My son has a positive Bartonella result and and 'indefinite' for Babesia.  With his symptoms, I think that he most definitely has Lyme disease.  It would be nice if he could be properly treated for Babesia and Bartonella to see if improvement shows that he does indeed have Lyme.  So the results were not negative - just not quite strong enough on the Babesia front for a positive.  Sometimes, the immune system is so compromised that a postive test will never show up.

The allergy testing at Great Ormond Street has shown a very high IgE.  The average is up to 40 and his result is over 500.  I wonder what he is allergic to and if it is the Lyme underneath this hitting his immune system.  Guess, at the speed we are going, it will take months to find out.  I hope not as I want my son well again soon.

Slow progress

My son has now been on augmentin for 7 weeks - but I do not think that the dose is high enough and therefore progress is slow.  On the positive side, there is progress.  We have been into London 3 times this month and my son has undergone various examinations from a barium meal to an abdominal scan.  We do not yet know why his stomach hurts so much - but are following up the results from a stool sample that was sent away before he went onto antibiotics and that indicated possible Crohns or colitis.  The endoscope examination is still to come and not all blood results are back yet.

A sample of blood was, in addition, sent to Igenex in the States to be tested for Lyme disease and Bartonella. I could not afford for all the other co-infections to be tested for.  Those results are due this week.         I hope it is not one of these, but on the other hand it would explain a lot if any positives show up.  Testing for Lyme and its co-infections is very difficult to do though and tests sometimes give a false negative, I believe.  Lyme is often diagnosed on symptoms - a clinical diagnosis.

I wish I could afford to rent a rambling cottage by the seaside and disappear there with my family for the summer.  Some good fresh air would do us all good.

I battle on with the hope of finding a doctor who will take PANDAS and PANS seriously and give my son the proper care he needs.  A full set of blood tests would be a good start - but they  have not yet been approved by anyone here.

PANDAS in the news - Dr Bouboulis

http://www.dariennewsonline.com/health/article/Darien-doctor-gains-national-notoriety-411757.php#src=fb

Lyme Disease and Co-Infection Symptom Chart

http://www.lyme-symptoms.com/LymeCoinfectionChart.html

Paediatric Lyme Presentation

http://www.slideshare.net/dennis43/pediatric-lyme-disease

I have found several Lyme and other articles today

but haven't yet had time to read them.  I will store them here until I get a chance to browse:

http://www.ilads.org/lyme_disease/treatment_guidelines.html

http://greendragonbotanicals.com/products/lyme-protocols/lb-core-protocol.html

http://www.latitudes.org/forums/index.php?showtopic=17397

http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=6&t=14

http://www.nypost.com/p/news/local/item_OseCEXxo6axZ8Uyig17QKL/4

http://www.emaxhealth.com/1275/teen-suicide-attempts-rise-your-kid-risk

http://byronwhiteformulas.com/

http://www.survivingmold.com/diagnosis

http://onlinelibrary.wiley.com/doi/10.1002/ana.21756/pdf

OMG - Just got another bit of my own jigsaw

Just found out that steroids can really flame underlying Lyme - immunosupression from the steroid allows the bacterial infection to spread more freely in the body.  This could be what happened to my son in Sweden when he was given a high steroid dose in hospital for a nut allergy.  It would certainly explain a lot.  I am impatiently awaiting Lyme test results - they will not arrive for another couple of weeks.

http://www.truthaboutlymedisease.com/phpBB3/viewtopic.php?f=6&t=14

A frustrated Lyme poem

What the heck is Lyme doing
In my life?
I was bitten, now it bites at me.

A hideous insect, as it starts
Then gets extra legs
Bloody stupid thing

It hid on me and spat out
Filth, under my skin
And off it dropped

My life is upside down
My heart, my brain
My body is worn out

I try to think and do things
But brain fog, thick and custardy
Clouds out my thoughts

Your name I cannot remember
What day did you say that
Today is?

I could once win the 100 metres
But now I cannot even find
My shopping list

Down the aisles I buy things
Again that I have already bough
Duplicates rotting in my fridge

I had a frozen shoulder and
It went and now I have
Tennis elbow both sides

My fingers are carpally
Typing is a pain and yet
I need support groups

My heart beats out of tune
I’m not in love, no lover awaits
Just ectopic pain

I eat, oh how I eat and
My waist expands
But I am always hungry

I will get up now, sluggish
And go about the day
With tight face muscles

When I do not smile
Do not say ‘it might not happen’
For it already has

And I am congenitally conjoined
With this illness that
I share with my kids

We struggle on and add
PANDAS and nobody believes
That we are not well

It sucks, this tick illness

Joshua's story - you tube coverage

http://www.youtube.com/watch?v=i0ItLVezuQQ&feature=endscreen&NR=1

Ruby - 100 days of PANDAS - post plasmapheresis improvements

http://www.youtube.com/watch?feature=iv&annotation_id=annotation_434195&src_vid=XFNM44v7lEg&v=o__ggTephdc

Obtaining antibiotics for PANDAS children

I haven't said much about my son lately - that is because all my energy (and money - paying doctors) has gone into getting long term antibiotic treatment for him.  He has improved since he started on augmentin 5 weeks ago - I really need someone to help me with the dosage and possibly another type of antibiotic to see if that works better.  We now have a lot of long chats but they are oppositional and quite difficult.  But my son has come back to me quite a lot and also has more to do with our pets (except his cat which he had already bonded with).  Sleep is still a big issue - he finds it hard to fall asleep, but the anxiety about going into the shower alone disappeared after the first 3 weeks.  The fight to get someone to oversee my son's treatment in this country continues.  We will win.  Blood tests to test for Lyme disease have been sent off and also Great Ormond Street Hospital is testing him for gut problems.  We have gone a step forward.  The second trip to London was also a success in terms of my son coping with it.  Again, we used first class travel and taxis; expensive but necessary.  I am pleased with progress.

Alternative Mental Health - great article

http://www.alternativementalhealth.com/articles/walshMP.htm

Is soy right for our families or should we feed them something else?

http://www.livestrong.com/article/516107-long-term-side-effects-of-soy-milk/#ixzz1wnFNRM93

Low Body Temperature/Chronic Fatigue Link - long

http://davidjernigan.qondio.com/chronic-fatigue-syndrome-and-low-body-temperature

Pyrolurea is interesting ...

http://www.youtube.com/watch?v=o1OJ87eA0Lg

PANDAS and Stuttering report

https://www.aacp.com/Abstract.asp?AID=9159&issue&page=C&UID

Methylation

I am just learning about methylation and this site is interesting:

http://www.dramyyasko.com/about-us/

A video about how Lyme, its co-infections and treatment work

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

Salem Witch Trials 1692 - PANDAS 2012

Some forms of mold can flare PANDAS - with a compromised immune system, this is no surprise as children are very fragile.  When I hear that some parents are blamed for their children becoming ill, accused of causing PANDAS in their children, it reminds me of the Salem Witch Trials - over 300 years have passed since these trials where vulnerable people were blamed of witch craft as children became afflicted with what I believe could have been PANDAS.  Nothing changes.

http://en.wikipedia.org/wiki/Salem_witch_trials

Do Le Roy 12 and Lancet 12 Have Anything in Common?

I found this discussion about the Le Roy 12 (PANDAS) and Lancet 12 (Wakefield, autism) interesting.

http://vaxtruth.org/2012/01/the-leroy-twelve-and-the-lancet-twelve-pandas-and-autism-common-factors/

Is PANDAS really vaccine injury?

http://vaxtruth.org/2012/01/is-pandas-really-vaccine-injury/

Sue Swedo PANDAS Podcast

http://www.podcast-directory.co.uk/episodes/susan-swedo-m-d-clinical-clues-to-environmental-triggers-lessons-from-the-pandas-subgroup-10596705.html

A Really Interesting Lyme Blog

In case you are wondering why there is so much about Lyme here it is because some think that tick infections can harm the immune system and leave people wide open to conditions such as PANDAS as their immune system is compromised.  When funds allow - I will get my family tested.

http://lymemd.blogspot.co.uk/

Autism One Conference

The Autism One Confrence 2012 is now taking place.  There are recordings available from this page:

http://www.livestream.com/autismone

A couple of interesting reports about IVIG and antibiotics

Immunomodulatory properties of antibiotics:
http://benthamscience.com/cmp/samples/cmp%201-1/Nau.pdf


Therapeutic plasma exchange and intravenous immunoglobulin for
obsessive-compulsive disorder and tic disorders in childhood
Susan J Perlmutter, Susan F Leitman, Marjorie A Garvey, Susan Hamburger, Elad Feldman, Henrietta L Leonard,
Susan E Swedo

http://intramural.nimh.nih.gov/pdn/PANDAS-REF7.pdf

Adult PANDAS, Bare Facts by Beverly Hills Shrink

http://beverlyhillsshrink.blogspot.co.uk/2012/03/adult-pandas-bare-facts.html

PANDAS Article in Psychology Today

http://www.psychologytoday.com/blog/attention-please/201203/pandas-patients-parents-and-physicians-0

Having Your Own Medications Specially Made

I heard the other day about 'compounding your own medications'.  This is where a laboratory can make your medications for you - without all the artificial chemicals and bulkers.  This sounds great to me - some childhood medications such as calpol contain ingredients that I try to avoid - but sometimes, for instance when my children have fevers, this type of medication is very useful.  Here is an example of a laboratory that provides this type of service:

PURE COMPOUNDING PHARMACY - additive free vitamins and/or medication made to your prescription

Lyme Disease and Pandas Review

http://www.prnewswire.com/news-releases/researchers-publish-long-awaited-lyme-disease-and-pandas-review-despite-controversies-140052803.html

Nightmares

My son had a lot of screaming out nightmares last night.  I think it may be related to having a hard day and also the antibiotics.  When I took amoxycillin once I did wake up in the morning wondering where I was - it can cause some confusion.  It only lasted a few seconds with me, but then I did not take it long term.

Day 13 Antibiotics - visit to Pandas doctor in London

My son was still asleep at 11 am when we needed to leave and I hate to wake him, fearing rages.  It was so important that I did and said we had to leave in 5 minutes.  He was up dressed and at the front door in 2 minutes flat!  What?  I made the most of this and we left despite the fact that he had not had breakfast or antibiotics or nurofen (ibuprofen antiinflammatory).  Usually there are many compulsions to get through.

An uneventful drive to the station, first class tickets on the train (owch, nearly £100) - but the seats were large and my son had space away from others so it was worth it.  I was given complementary coffee and fruit cake - happy mum - I am a coffee addict.

We were running an hour early when we arrived at Paddington - so my son suggested going to the sushi bar there.  I had to nip to the toilet first - and his compulsions were set off so I was grateful for the disabled toilet - and how easy it was to get the key.  We had 3 trips back for the key and my son was embarrassed - but I explained to him that it was there for kids like him and that if staff showed their annoyance then it was their problem and perhaps they were in the wrong job or had had a bad day.  It was just the tap that my son wanted and he mostly washed his face, dipping one set of fingers in the water and then putting it onto his face - I did the turning on and off of the tap and opening and closing of the door. My son ate his favourite makki - with avocado.  He was really happy to have found it but said it didn't taste as good as it used to - we used to stop there regularly - I think his taste buds have changed.

There was an enormous queue for a taxi.  Thinking on my feet, I asked if we could jump the queue - I have seen people do that before.  The words child and hospital got us straight into a taxi - it would have disturbed my son to have waited with so many people.  My son was ok and put his seatbelt on - covering his hands with his sleeves as he did for most of the day.  As he was unable to touch the door handles, I had to help him out and avoided conversation with the driver as that would have upset my son - he thinks that people spit when they talk and that it lands on him, especially in his mouth.  This makes him spit - not wanting to spit into the street he spits onto his sleeves, which become wet and must feel very uncomfortable.

We were 30 minutes early for our appointment so walked around the block.  Down Harley Street, past Devonshire St, past Langans - which made me sad as I remembered a great evening there with friends who are no longer here.  We spotted a newsagent and my son asked for sweets.  He picked some out and I paid - taking them back to the waiting room to eat.  I was surprised that he  could eat a lolly in the waiting room where other people had been - but this was delightful - I loved to see him sat in a chair where others had previously sat, with no problem and sucking a lolly.

We were called in to our appointment and my world changed.  We have the PANS diagnosis and have dropped the Aspergers.  It was obvious to the psychiatrist that my son does not have Aspergers - my son's English teacher had also said that she did not think he had it as he was so good at, for instance, metaphors.

My son has an autoimmune problem - that was obvious to this great man and that was the diagnosis.  My son is going to be tested for Lyme, babesia and the other tic borne infections.  Thinking of him with all these parasites in his brain was nauseating.  Horrid spiral things that can drill their way through his organs and brain and cause so many problems.

Another thing of concern that I asked for help with is that my son has had no education for nearly 2.5 years.  My son was termed 'an invisible child' and the fact that he is given no education 'against his human rights'.  Things may be about to change here with this great man on our side.

My son has serious OCD - even today when things are so much calmer thanks to antibiotics.  He will need help for this and clinics will be contacted and help sought.  At last!

I was hungry on the way home and bought myself a pasty at Paddington.  My son asked for one too and we ate them on the train home.  It was a pleasure to see my son eat this type of food - unwrapped and handled openly by the girl who served us.  There was a mess on the floor - but since we had paid £100 to sit there that was too bad. My son's second lolly went in the bin as when he opened it it touched the seat and became inedible to him - guess you cannot win them all.

My son is on the way to getting better and having the services, such as a tutor, that he deserves.

Peace.

Aspergers - we miss you

My son has been undiagnosed.  He is no longer a child with Aspergers.  It is good news in a way - but sad as I will no longer belong to the warm community of 'warrior mothers' who have fought their way through for the best help for their kids.

We have, however, swapped it for a whole new set of problems.

Day 12 Antibiotics + Nurofen

We need to go on a trip tomorrow by train and so I gave my son a nurofen tablet to try to get down inflammation.  Something has worked because I have seen glimmers of my healthy son back today.  We have done a lot together - chatting (though he still accuses me of spitting at him), playing computer games (I wish I could be more enthusiastic about this but it doesn't interest me at all - quite the opposite), and designing a WWW.PANDASUK.ORG website - it went live today.  The web site needs polishing and more information - but it is a start.  My son kept drawing some wonderful pictures and then he made me remove them from the site as to him they were not good enough.  His drawings are so good that this is sad.

When my son asked if we could go into town - I knew he was back.  We have not been into town for over 2 years.  That was special.  Unfortunately it is Sunday and the shops are closed - but perhaps we will go soon.

So life is looking up.

Best day for over 2 years

It is day 11 of antibiotics and I have just had a friendly and peaceful day with my son. He is still oppositional in his speech - but there was plenty of speech.  We have discussed computer games for about 3 hours today. I cannot say that this was my favourite topic of conversation and I struggled to keep up - but it was great to see my son come alive with the enthusiasm of sharing his world with me.

My son still has the fears that developed the other day - he doesn't like to go into the shower at night on his own.  He is OK during the day, but I have to stand there at night - as I had to do night after night, day after day for a year or so in the beginning.  I do not have to turn the shower on and off for him though - that was tedious but necessary.  There is discussion about codependency with the OCD activities of Pandas - as it is an illness then it is suggested that these things need to be done, as opposed to classic OCD, whatever that may be, where you apparently should not help out.

So we are winning.

The UK is moving forward with Lyme testing

http://www.lymediseaseaction.org.uk/latest-news/meeting-with-the-hpa/

PANDAS POEM

PANDAS

They say its a post strep infection
Like Sydenham’s Chorea or Rheumatic Fever
But this time affecting the brain

They say its a post strep infection
An antibody inflamed basal ganglia
Sudden onset tics, ocd, anxiety

They say its a post strep infection
My child cannot leave his room
No school, no friends, no fun

They say its a post strep infection
So what can I do
Antibiotics, IVIG, Plasmapheresis

They say its a post strep infection
Discovered by Swedo in 1998
But my child will still not eat.

They say its a post strep infection
Impacting the whole family
Untreated may last a lifetime.

Read some interesting Lyme articles today

http://www.igenex.com/psychological_effects.htm

http://www.immed.org/infectious%20disease%20reports/InfectDiseaseReport06.11.09update/PHA_Nicolson_0709_v4.07.pdf

http://lymedisease.org/news/lymepolicywonk/lymepolicywonk-embers-monkey-study-part-3-idsa-28-day-treatment-protocol-fails-to-clear-infection.html

http://www.mdlab.com/pdf/lyme_disease_testing.pdf

Great PANDAS article - giving super overview

http://pandasnetwork.org/wp-content/uploads/2012/03/The-Pandemonium-of-PANDAS-by-Melanie-S.-Weiss-BSN-RNC-MNN.pdf

What would I do if I found a tick on my child?

1.  Remove it the recommended way - plenty of advice on the internet or from your doctor..

2.  As there is no way of telling what they carry just by looking at them I would go to Igenex.com and fill out their test order form and send them the live tick - in secure container, complete with some damp cotton wool and perhaps some grass to keep it alive and comfortable on its journey and following customs rules, whatever they may be.

3.  Go to my doctor and get a 3 week course of antibiotics for my son.

4.  Wait for tick analysis results and then take appropriate further action - be very happy if no infections present.

Ticks are not something to mess with.  They can carry more than one infection, eg Babesia, Bartonella etc.  If you or your child does get one - do see your doctor.

Antibiotics - one week in - day 7

Today has had its up and downs. The herx reaction seems to be still there causing emotional turmoil in my son. He is in control though and, whereas he got cross and threw his chair over, he did not swipe the books off the shelf or do any of the other things he used to do with PANDAS at its height.  What I do hate is the PANDAS shriek - it is really high pitched and painful to hear - and we have had a few over the last couple of days.

All in all things seem to be improving.  There was the foot tic again yesterday when my son went up onto his toes a couple of times, but that soon went.  He was eating a little less yesterday, but has picked up today.

His medication comes as individual foil wrapped tablets.  Thank goodness for that - they meet his OCD standards and he has no problems taking them.  I think that a lot of antibiotics are liquid and there would be issues with that.

We have a very important meeting with a Pandas doctor on Monday and I must start pulling together a diary of information. In fact, I must send that onwards in case we arrive late for the appointment - the doctor can spend our missed appointment time browsing my child's history.   How we will travel into London is going to be, well, quite challenging to say the least.

Did Mozart have PANDAS?

http://www.telegraph.co.uk/culture/music/3625399/I-know-what-made-Mozart-tic.html

Maybe we have two famous names on the list of PANDAS sufferers - Howard Hughes and Mozart?

For anyone interested in contributing to research - here is an awareness survey

http://www.ocfoundation.org/PANDAS/
The survey is on the right hand side and gives you this:
http://www.ocfoundation.org/uploadedFiles/MainContent/Get_Involved/PANS%20PANDAS%20Awareness%20Campaign%20Form.pdf

This is a really important article wirtten about PANDAS by Gunilla Gerland today

https://www.facebook.com/notes/gunilla-gerland/pandas-the-unknown-neuropsychiatric-diagnosis/370950609606769

Great video discussing PANDAS and Lyme

http://www.youtube.com/watch?v=XQAHwV2jMB4&feature=endscreen

Film of girl who was treated with antibiotics quickly

http://www.youtube.com/watch?v=-ZS5qIeMN9g&sns=fb

An e-book about PANDAS

I have just started reading this great book:
http://joshuasmissingpeace.com/blog/pandas-pans-and-ivig-treatment/

An interesting lyme report

http://www.ilads.org/files/ILADS_Guidelines.pdf

Day 4 - OK so far

My son called me into his room to show me what he had built on his computer game - we then spent a few minutes discussing it.  He seems calmer today.

Last night he picked a small toy up off the floor and played with it in his hand.  This is a big step forward.

A brief view of how brain inflamation has been viewed historically

http://www.nimh.nih.gov/about/director/2012/from-paresis-to-pandas-and-pans.shtml

Day 3 - part 2 Herx Reaction

My son has become a little afraid of being alone - he had this at serious levels 2 years ago and it has slowly diminished.  He was unable to save some work on his computer that he had worked really hard on and was very upset by this - so his emotions were heightened.  On the positive side, he was not as upset as he has been on previous occasions.  Also he is not as oppositional in his conversation and lets me get nearer to him.

When he was eating, he let me speak to him without throwing his food to the floor.  He put out his elbow as a barrier and carried on.

So some very good positives but one negative.

A kind person sent me this - it is very informative about what can sometimes happen:
http://www.lymediseaseblog.com/jarisch-herxheimer-reaction-lyme-disease/

AUGMENTIN - Day 3

All is calm - we haven't had a fully calm day for years.  My son is in his room whistling away and giggling like mad at a film - really nice belly laughter.  Two years ago he was too terrified to watch the tv so this is a big improvement - I had to slowly build up from cartoon DVDs made for toddlers to family films and this took over a year (and was hugely expensive).  It was about  14 months before he could watch the tv without being scared - and it is surprising how much 'toilet humour' there is on children's tv which, to someone with PANDAS, was too much to bear.

My son spits as a tick and that has been a little less today, but there is more hand blowing (each hand has to be blown the same amount, so if he blows one hand twice he has to do exactly the same to the other), but that is because he is getting nearer to more things, which is very positive.

Ah bliss.

Hikikomori

In Japan it is said that one million young men lock themselves away in their bedrooms.  Some of them block out the daylight.  Mothers leave their food outside their bedroom doors and there is an increase in domestic violence - the parents are sometimes attacked by these frustrated young people.

http://en.wikipedia.org/wiki/Hikikomori

I read a great book about this: http://www.amazon.co.uk/Shutting-Out-Sun-Generation-Departures/dp/1400077796/ref=sr_1_2?ie=UTF8&qid=1335994620&sr=8-2

The hikikomori are male.  There is another term for the females which I cannot remember but was, I think, more derogatory.

It is terrible to have a child who shuts out the sun.  Luckily my child is mostly through that now - but his sensory issues and anxiety did stop him from leaving the house for 1.5 years.

Today - progress ...

I think that things are a little better today - more communication.  My son seems to feel pain more though and has stepped on a couple of objects and reacted severely to the pain in his foot.

I have started my son on augmentin today ...

... I am really hoping that this antibiotic will make big changes quite quickly - I will keep you informed.  He is on 3 x 250/125 mg Co-Amoxiclav.

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.