First stop, family doc....

[junkyardjean]

Well, hit the family doc today to talk about symptoms. I'm going to do a bit of a rant here, please bear with me...

 

I thought I would start with family doc as he has been my doctor for my entire life (35 years long - turns out, he doesn't really know us as well as I thought he did). I didn't want to skip him in the process due to the fact that at the end of the day, no matter who we hook up with outside of this rural area, he will be a key player in this process.

 

First, when the behavior is first brought up, "she's doing fine right now", and then "maybe she is just acting out because she has been so sick", followed by the kicker "maybe you need to alter your parenting - do you know that kids need firm consequences and consistent boundaries?" (really? I am a social services professional and work extensively with children and families with severe dysfunction and a host of clinical behaviors). Then he says "lets refer her to a child psychiatrist as she may need risperadone". He's so far in la la land, tears in my eyes start to build....

 

Second, we go through her bloodwork. He proceeds to tell me that there are no concerns - when I ask specific questions in regards to her low and high results (according to the lab ranges indicated on the actual report for children), he says "well in adults, that number is fine". I ask if it is fine for a 4 year old - he turns red and says, its probably good we're seeing the pediatrician tomorrow.

 

Then he starts to double back and say that he is out of his league in this situation and he wants to leave it to the ped. to review - he is willing to refer, consult, etc. with anyone I bring forth (we discussed Dr. K as he emailed me back and suggested a phone consult as dd's case symptoms and basic blood work were "outside the norm for classic PANDAS, but obviously something serious is up"). At least he was starting to get honest. Then he acknowledged our parenting and stated that it was weird that the behavior change was so sudden and severe. He finished by saying that he felt this was an emerging behavioral diagnosis, but he will leave it up to what the specialists have to say.

 

So, tomorrow, off to the big city to see the ped! Can't wait (said with both excitement and cynicism....) I did have a chance to speak with his nurse today to confirm for tomorrow, and she almost freaked when she heard the results of the BUN and creatinine. She just kept saying, "we need to have a plan, we need to have a plan" Not sure what that means in her world - I guess we will see what is waiting for us tomorrow!

[DeterminedMomVA]

Good luck tomorrow. I know you have the RF diagnosis, but do you also have information on PANDAS for the ped tomorrow? The following links are excellent, if you have time to print them and take them to the ped:

 

http://www.ocfoundation.org/pandas/

 

http://intramural.nimh.nih.gov/pdn/web.htm

 

http://pandasnetwork.org/wp-content/uploads/2012/02/2161-0665-2-113.pdf

 

I hope only good things are waiting for you tomorrow.

[thenmama]

Sorry if I've missed something in your previous posts that would discount this suggestion, but since it looks like your dd has a RF dx (so confirmed strep infection at some point) and has some abnormal kidney-related labs I'd probably ask the docs to rule out post-streptococcal glomerulonephritis if it hasn't already been investigated. Has your dd had any urine discoloration or blood (visible or trace in a sample) or signs of fluid retention/swelling/puffiness? Those would be additional red flags.

 

Good luck tomorrow!