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Have decided to go see Dr. Murphy


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So, after gathering all of the information I could find and putting together a four page documentation of episodes my dd10 has been through with her anxiety and OCD (the last two in which she was treated for strep), I finally got our pediatrician on our side and thinking that this is a case of PANDAS. Which is great except she has no idea how to treat and our efforts to locate someone (more or less locally) have not gone all that well. However, she did decide to keep her on antibiotics for the time being and we are going to retest her ASO titer next week (it was at 2000 on February 1st when she was sick and it was all starting up again). AND now her psychiatrist (who has been prescribing Zoloft and Ritalin for anxiety and ADHD) is conceding that this might be a case of PANDAS. Of course, he wants to up her Zoloft to close to double and start a new round of CBT. Uggh.

 

She is doing much better on the antibiotics and off of the Ritalin. I am afraid to do anything about the Zoloft without some expert consultation.

 

So, after researching doctors my husband and I decided to schedule a consultation with Dr. Murphy even though it means travel for us (she is in Florida and we live in Texas). So, we are scheduled to go out there at the beginning of May and I am hoping for a plan. My pediatrician has said she will work with a recommended treatment plan, she just doesn't want to wade in without knowing what she is doing.

 

So, in the course of all of this my mother, who had rheumatic fever as a child and has been treated long term 2x as an adult with a year long course of antibiotics for infections and elevated titers, started also doing a lot of reading on PANDAS etc... She has had problems with inflammatory osteoarthritis since she was 28, but most recently has been having more problems in the past year (she is now 68). She started to wonder if she wasn't having a problem with strep reactive arthritis. So, she convinces her doctor to test her ASO titer and sure enough, it comes back at 400! So, now she is on Omnicef also. Hmmm....

 

I am thinking that if there is some sort of genetic susceptibility to strep and autoimmune issues, my family must have it.

 

Now I am thinking I should have dd7 and my titers checked. Dd7 has been treated twice in the last year for strep and has been having a lot of behavioral problems (meltdowns and tantrums at home, but not at school), but no OCD or tics. Still, she was really bad when dd10 was sick about a month ago. My husband and I chalked it up to needing more attention, but now I am wondering. She has also been diagnosed with ADHD, but isn't taking any medication for it.

 

This is exhausting! Wow. How do you guys keep sane?

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I hope you get the answers you need from Dr. Murphy. I think you should get both of your kids checked for strep whenever one of them has symptoms. I think a positive swab trumps titers for strep evidence!

Now I am thinking I should have dd7 and my titers checked. Dd7 has been treated twice in the last year for strep and has been having a lot of behavioral problems (meltdowns and tantrums at home, but not at school), but no OCD or tics. Still, she was really bad when dd10 was sick about a month ago. My husband and I chalked it up to needing more attention, but now I am wondering. She has also been diagnosed with ADHD, but isn't taking any medication for

See here: http://www.latitudes.org/forums/index.php?showtopic=12786 how many people saw meltdowns and tantrums as the 1st symptoms.

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I hope things go well with Dr. Murphy, she's local for us since we're in the Tampa Bay area. We take our son to her, and also see another Dr. that works with her, Dr. Troufexis (who my son ADORES). Dr. Troufexis was very impressive at our first appointment with her, she had every detail of my son's history down (even how long he was breastfed!!) and was very knowledgable, she's worked with Murphy for years.

 

If you ever have to see one of her associates for any reason, I would request Troufexis.

 

As for the genetic link, I've always suspected that. I had chronic strep as a child (although no recollection of any major behavior issues other than the typical pre-teen I hate my parents drama :P ) and I also have ankylosig spondylitis - which is a genetic form of autoimmune inflammatory arthritis.

 

Our pediatrician suspects a genetic factor as well, and has actually just done full genetic screening on my son, and two other of his patients (I'm fairly certain one other is a PANDAS kid too.) He wanted to see what it showed up, and if there were any consistencies between the kids he was testing. Sort of like his own mini-research projet. He was of the mind set that maybe we'd find some sort of connection, or clue that would help identify treatment. We just found out last night that the results came back, so as soon as I schedule the follw up, I'll be sure to post any interesting developments here.

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