Pandasmom's Blog

living with PANDAS, not the furry ones…

Hospital? January 19, 2013

Filed under: Uncategorized — pandasmom @ 6:58 pm

I don’t think there have been huge improvements in A from the steroids.  I am so frustrated and let down.  It turns out we were administering the steroids at too low of a dose (mom error in reading the label), but we have upped her dose to the true Rx and then upped it again to the max dose.  I don’t feel like we are seeing what we should be.

After another rough morning I told J that I think we should go for IVIG.  We haven’t done this in almost 3 years.  But the rest of our bag of tricks aren’t working.  J thinks that IVIG has never worked for us and that this is just our child.  I think he is just beaten down.  I think it does work but is short lived.


What will today bring? January 13, 2013

Filed under: Uncategorized — pandasmom @ 3:03 pm

It’s almost time to wake up and I am so apprehensive to see how A is doing today.  Please let the steroids and antibiotics have a positive effect!



Filed under: Uncategorized — pandasmom @ 12:29 am
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I want to document this so that I don’t question it next time we have to use steroids.  A is a very quick responder to a treatment if it is going to work.  She is also a quick responder when something goes badly.  We decided to give A steroids for the first time in about 3 years.  It was a very difficult decision because of all the side effects.  But we did decide to proceed.  Within 5 hours of getting the first dose, A had improved.  The next day she was also doing great.   J and I both felt like we got a taste of what it must be like to be in a “normal” family.

Then today we woke up to a complete disaster.  The return of all her symptoms.  It felt like getting ripped off because we had our hopes up that the change would last for a bit.  We had one really bad episode this morning and it was followed by another one this afternoon.  It is so exhausting to go through these ups and downs.  Mostly downs.  It feels so hopeless and overwhelming. 

While brainstorming why this would be happening I thought to call the ped office and see if our ped was on call.  It was our lucky day and she was on call and answered.  After explaining the situation she immediately said that A had been exposed to strep.  Since it is the weekend and A hasn’t been around anyone the ped had all of us swab ourselves for strep.  Lo and behold, C has active strep!!! 

I am delighted that we had a positive test.  But too beaten down to get our hopes up that A will return to where she was yesterday.  I hope so much to be proven wrong.  In the meantime, both girls will be on antibiotics indefinitely.  That is fine with me if we can get A to improve and stay that way.