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new to this....any advice welcome


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Hi all my son has suspected pandas (more than likely it is this)... Behaviour when Ill is horrendous and has been happening for over two years finally being listened to that something was not right. Attended paeds apoingtment last week and the paediatrician advised that the condition is likely to be pandas due to the extreme behaviour ocd etc. I received a letter today advising that we have been referred to a psychiatrist and that some bloods that were taken have given a result of asot level 1200 I have no idea what this means and whether this is good or bad???? My son will not be seen for three months now by the paediatrician as he said it is difficult to diagnose and there isn't much in terms of treatment and I am at my wits end.. I feel so sorry for him he cannot control his behaviour has extreme rages is violent obsesses about germs wets frequently has pains in legs and cannot sleep at night.... This all occursvwhen he is Ill...it takes him weeks to calm back down and at present he is having recurrent infections of throat ears and chest...can anybody offer any advice at all???? Sorry for the massive rant but I am so worried ....and tired!!!! Thank you in advance!

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i don't follow your post well. what I do understand is that your pedi is sending you to a WRONG dr. If your kid has infections, what can a psychiatrist do for him?

In your place, I would look for a dr in your area who beleives in PANDAS/PANS and is willing to treat with prophylactic abx. I would present NIH suggested protocol to pedi and ask for long term abx while you wait to see a PANDAS specialist.

"asot 1200" is possibly aso titers of 1200, which indicates strep infection.

look at other blood tests to do under pinned material and make a strategy -- you are probably going to be your child's only advocate.

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Did your ped give you any abx for the recurring infections? If not, I'd go back asap and ask for some right away. As pr40 said, print out the treatment protocol and show your doctor. I actually used this: http://pandasnetwork.org/treatments/antibiotics/ with my family doctor and she agreed to prescribe us abx while we waited for neurologist and ID appts (which amounted to nothing, but that's another story).

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If you have a diagnosis of PANDAS hopefully your doc gave you some antibiotics, as mentioned above. If not, go back and ask for (demand) them. In the meantime you might try ibuprofen for a few days, plus nutritional supplements like fish oil or curcumin--but don't start them all at once, otherwise you won't know what worked, what didn't.

 

Keep a daily log of everything that seems relevant--what medicine you gave him, how much he slept, how his behavior was, etc.

 

You might also ask your pediatrician to check his vitamin D levels. That's one part of the puzzle for many of these kids and is a simple test your pediatrician probably knows how to run.

 

I'd recommend a neurologist or an immunologist over a psychiatrist as your next move.

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