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New eBook: Your Child Has Changed; Should You Consider PANDAS?


Have you seen the ACN Latitudes PANDAS eBookOur helpful book is a 37-page primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need. Learn more

 






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It's been awhile, so I thought I would update


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#1 qannie47

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Posted 20 April 2017 - 11:13 PM

Months ago I shared that food allergy treatment was our final piece to the puzzle in getting rid of symptoms that seemed to have no explanation.  It seems to have held as well.  Last October though, my perfectly healthy 100% free Pandas child of many months  flared from a tetanus immunization shot.  A flare could not have been further from my mind, and I did not even recognize it right away.  We started ABX (an increase from his prophylactic dose) without any great results.  I started advil 2x a day and that did the trick.  For the most part he has been back to 100% again with very minimal wax/waning.  He came down with a cold 5 days ago and sure enough....there were the symptoms...I was smart enough to start the advil 2x a day and this approach seems to have nipped it in the bud and also prevented further escalation of symptoms.  I still believe that the October flare still has a little hold on him.  An off day/half day here and there.  Thinking that those dam antibodies will just need some time to completely leave his brain....Otherwise he is in good shape and holding.  


Born 12/2005  Age 3, Scarlet fever>no fever, throat pain, only headache/neck pain/rash.  Chronic idiopathic joint pain in knee started after Scarlet fever (never made the connection).  + RLS.  4/2012 > 1st overnight onset of Panda symptoms  after first round of abx>diag possible sydenhams Chorea after 2nd post strep test>6wks (3 rounds of abx)  to clear strep>then 100% remission after neg strep test. (3 year joint pain/RLS went away & has never returned)  >diagnosed Pandas Dr. K 6/2012>100% symptom free for 3 months.   10/2012 lost tooth/strep exposure? Overnight appearance of symptoms, mild compared to 1st episode, rate it a 6 on severity scale>abx 2 weeks>100% remission for 2 1/2 months. 1/2013 Pandas overnight onset of symptoms again>no strep but Tonsillitis for 6 weeks>6wks of abx>cleared then went into 2 week stomach flu (not symptomatic with flu)>ER for dehydration> recovered>immediate relapse of Panda symptoms>rate episode 6>20 days of abx w/only 70% improvement. 6/2013 IVIG>within days 100% remission>aprox 12 weeks symptom free. 9/2013 Strep/stomach flu exposure>3 days later, 6pm sudden relapse of symptoms explosion, rate it 10 severity> 3 week episode>new symptoms include high rage, rapid cycling> abx full strength 500 2x day>day 9 some diminishing of symptoms for last 2 1/2 days.>10/16/2013 fingers crossed  MRI/EEG/aso/anti dnase B all normal. waiting for lp results:11/2013 LP REVEALED 2 WELL DEFINED O BANDS: INDICATIVE OF AUTOIMMUNE DISORDER


#2 eamom

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Posted 23 April 2017 - 12:35 PM

Was it a tetanus only shot (don't think that's available in the US) or the Tdap?

Many PANDAS parents (at least the ones I've encountered in FB groups)  have stopped vaccinating b/c the risk of vaccination (in a child with PANDAS/autoimmune dz)  outweighs potential benefits.  

There is a teen in one of the FB groups (who was previously stable PANDAS) who has been having ongoing (months) severe issues (meaning hospitalizations, seizure like activity) after  tdap and meningitis vaccines.

Also, don't forget that you can draw titers to prove immunity (that's what we did for tetanus) if there were prior vaccines. That said, it's hard to say that even if the titers were low, that vaccination would be a good idea for our kids.

I'm glad he's doing better now. It's hard when there are ongoing insults to the immune system (vaccines, then illness, also allergies this time of year).

 






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