PANDAS RELAPSE

[Emma]

My daughter has had PANDAS since February 2011 when she was aged 7, it took until October 2011 for her to be seen and treated by a peadiatric neurologistm, who isn't that familiar with the condition, she put her on 1000mg of Phenoxymethyl penicillin. By this time she had really severe symptoms. Within 36 hrs of starting this high dose of antibiotics she returned to normal and has remained stable until now. She developed a sniffle about a month ago and the throat clearing, humming and urge to jump returned, this has now developed into her brain telling her horrific things once more and she is very distressed, she is also having severe nosebleeds, complaining of her heart going going fast and anxiety. Unfortunately her bloods for antistreptolysin and AntiDnase went missing and are having to be repeated again, so i do not know where her titres are at. At her worst they were 1600 and at her best they have been 400. Her neurologist has gone on maternity leave and her doctor and peadiatrician have told me they just don't know how to help her, as she has developed this condition about 5 yrs too early as the UK has no reasearch or knowledge on it. My daughter is rapily getting worse in front of my eyes and i don't know how to help. My peadiatrician has attempted to contact 3 PANDAS doctors in America in an attempt to get some advice, but no one has responded. Please does anyone have any suggestions we are desperate.

[Dr. Michael Jenike]

it sounds like you need to locate a pandas expert near where you live.  there are OCD groups in the UK that may be able to help you.  

http://ocduk.org

http://www.ocdaction.org.uk

i would also talk to your pediatrician about using the same treatment that worked in the past.  i hope this is helpful.  all best wishes,

Michael Jenike, MD

[Author]

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