PANDAS or generalized anxiety

[peglem]

Yes, I think it is working. My daughter went into exacerbation mid-September. (she was on a really screwy zith regimen at that time- 250mg/day for 5 days and 7days off) Finally, at the end of Nov. did the rifampin/aug. combo, then the higher dosage of zith...and by the end of Dec. she's doing much better.

[reneegavin]

UGH!! I just got off the phone with my dd's psychiatrist. I asked him if he was familiar with PANDAS, and he said that he was very familiar with it. He said however, that my dd's symptoms did not fit the PANDA profile. He said from her history, she just doesn't fit. She doesn't have too many OCD tendencies. It's more anxiety and now minor tics. I reallly don't know what to do at this point. He is a highly recommended psychiatrist and apparently treats many kids with PANDAS.

[smartyjones]

i'm not trying to convince you that it is pandas - just to not be swayed from your path if you think it is or feel you need to discover more.

 

my son's "official" pysch diagnosis is "anxiety - not otherwise specified". we found out it was pandas rather quickly b/c of an astute behavioral therapist. we've been to a few in the psych profession and i have to say i am very dismayed and frustrated with them.

 

my son does not display 'typical' OCD - he doesn't really do repetitive things or have complicated webs of thoughts - it may be that he is only 5 and that type of thing would come out later - he more presents with obnoxious behaviors and cognitive inflexibility.

 

there are so many stories of what drs. 'in the know' have told people. we didn't see Harvey Singer at JHU but were basically told by his asst. that he'd probably refer us back to the psych. the colleague that referred us to him, spoke of pandas as "a pet project" of his for the past many years and really thought he'd be able to help us.

 

it is extremely frustrating but i'd say most important to follow your instincts and don't be swayed.

[reneegavin]

Well, I just canceled the dr. appt for the swab, figuring I would jsut wait until she went back to her allergist. When I called to see if they could move up her appt., they told me they don't do swabs there! I'm going to wait for the results of the thyroid panel, then wait and see what happens. I will ask the allergist what he thinks also.

[KeithandElizabeth]

I would recommend a phone consult with Dr. K. He seems very knowledgeable about anxiety and its relation to PANDAS. We are making our appointment today.

 

Elizabeth

[reneegavin]

How do you get in touch with him, and where is he located?? The thing that's making me think it might not be PANDAS is the fact that when she had a bad sore throat a few years ago, we had her swabbed and the test came back negative.

[peglem]

UGH!! I just got off the phone with my dd's psychiatrist. I asked him if he was familiar with PANDAS, and he said that he was very familiar with it. He said however, that my dd's symptoms did not fit the PANDA profile. He said from her history, she just doesn't fit. She doesn't have too many OCD tendencies. It's more anxiety and now minor tics. I reallly don't know what to do at this point. He is a highly recommended psychiatrist and apparently treats many kids with PANDAS.

I think the key here is what's the source of the anxiety? My daughter is nonverbal and uncommunicative for the most part, but has high anxiety. We can't read her mind (mostly), but if we watch closely, we frequently find the anxiety arises out of a need to do something or avoid something, that she either can't do or can't avoid. It never makes sense that she NEEDS to do these things or NEEDS to avoid them. What I'm suggesting is that the anxiety may be due to obsessions or compulsions that your child is unable to describe or explain to you.

[KeithandElizabeth]

I would not decide against PANDAS based on the throat swab. Many children with PANDAS have negative throat swabs and even negative ASO titers. You can email Dr. K from his website webpediatrics.com and he will respond back to you to let you know if he thinks your child may have PANDAS. If you want to consult with him, you can contact his office and set up a 1 hour phone consult for $350.

 

Elizabeth

[dut]

hello

 

I agree with peglem....it could be driven by ocd...below is a good link to look at, if you haven't seen it already. It's a previous discussion on the forum about OCD signs in kids

 

http://www.latitudes.org/forums/index.php?showtopic=6153

[reneegavin]

Well, my dd had her bloodwork..will wait for the results. She locked herself in the bathroom at the doc's, then backed into a corner, refusing to let themdraw blood.. Hubby had to hold her down! She dreads the throat swab worse than bloodwork! I'll wait on this before I pursue anything else. I e-mailed Dr. K. How does he diagnose without seeing the patient??

[amy s]

Well, my dd had her bloodwork..will wait for the results. She locked herself in the bathroom at the doc's, then backed into a corner, refusing to let themdraw blood.. Hubby had to hold her down! She dreads the throat swab worse than bloodwork! I'll wait on this before I pursue anything else. I e-mailed Dr. K. How does he diagnose without seeing the patient??

 

I recommend that first you send him an email after reading his entire site. He will respond back to you, usually very promptly. Make your email a thorough history of your child's symtpoms and medical history. The email and telephone consult I did with Dr. K ended up being very helpful to us and to help our pediatrician here make decisions. Good luck to your family.