Monday, 4 June 2012

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.

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