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.