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Time has been quickly ticking by!

 

We are still doing the hydrotherapy treatments with ND, and that seems to be helping - DD4 has had several infections that have caused increase in symptoms, but they are now only lasting 2-5 days, instead of the 3 weeks. Only the sensory issues seem to hang tight - after dealing with some very aggressive rages, we are closer to baseline than we have been since November 2011.

 

We had our phone consult with Dr. K, and he gave me some bloodwork and echocardiogram to request here to help confirm whether her sickness in November was actually RF, or serum sickness (he is thinking more serum sickness). He then went on to say that she is now dealing with PANDAS that is being triggered by any immune activation. From her records, he thinks her first flare was just after the age of 3 (we had her in walk-in clinic due to increase in urination after a strep infection - of course, no UTI found)

 

Now, next steps to get Dr's here to get on board. Dr. K was wonderful, full of information, and was the first medical personnel to make real sense of her symptoms. We will get the labs done and send results to him to see where we go next...

 

Two days later, we had to see the ped that has been carrying her case in the city(and who is not a PANDAS believer and keeps telling me about parenting strategies). I swallowed everything I had to play nice - smiling, nodding, saying thank you for the parenting tips kind of stuff. I feel like I was definitely dancing the dance to get what we needed (echocardiogram in particular). It's unfortunate that he is not willing to open his mind up as he seems to be very smart and a good doc in other aspects - when I broached the subject of her behavior being linked to immune activation, his response was "I have never seen that in my career. You have probably been doing a lot of internet reading - those are extremes and laymen can be dangerous in trying to diagnose with internet information". Right then, my smile came on my face, nodding - picking my battles. Our family doc will be the one who will need my energy.

 

We are definitely living day to day, and I try not to drown in all of the unknowns. She is my child, and the only option is to keep putting one foot in front of the other.

 

Sending warm fuzzies of support to everyone here :)

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