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My son's therapist just called and I had sent her the charts that I was using on my son. I had been trying to make sense of the ups and downs that I was seeing. He would be totally hyper one day and then the next low. Well therapist just questioned if those real high days of activity are really PANDAS, instead she is going to call dr. to consider bipolar. My heart is crushed right now. My soon to be ex is bipolar and it has been so hard for him to successfully manage it. Right now it is making PANDAS look like a fabulous diagnosis, can't I just keep that one. :lol:

 

THis probably is incoherent I'm just so sick over her even mentioning this possibilty

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Get Dr. C. test kit immediately. We did the same, because it really is important to know. We had already tried 3 meds for bipolar, and they didn't work. My son is in the PANDAS range, and abx worked immediately on him. Also got PEX, and results have been great, but needing more (PEX didn't help him with the OCD.) We're getting IVIG for him soon. Good luck.

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Wait a minute - you have a T&A scheduled for Fri. You've been struggling without abx for 3 months because of possible abx allergies. Both suggest a possibility your son has an untreated infection. You don't have the support of your pediatrician (from what I gather on your T&A post). Now you have another doctor throwing something at you this week.

 

Take a deep breath and take one step at a time. Since you've decided to do the T&A, focus on that. Discuss with your most reasonable doctor what the plan should be for post-op - is there any abx you can use? If not, are there natural products that may help (someone mentioned oil of oregano?). Do you have a way to seclude him for two weeks? You have a lot to manage in the coming weeks. Put any other diagnosis or treatment plan on the back burner. Get thru the T&A and give it 4 weeks to see how things play out. Then see what's left and make a plan from there. You're asking yourself to deal with too much at once. One day, one step toward good physical and mental health, at a time.

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Also . . . .

 

From what I understand about true bipolar, the cycles are not anywhere near as rapid as we see with our PANDAS kids (as you described, one day he's up, the next day he's down). Frankly, that "rapid cycling" is what's convinced our psych that similar behaviors by our DS are NOT indicative of bipolar because they are just too moment-to-moment.

 

Bi-polar, my butt! :angry:

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I think if you search "warts" on this board, there was a thread about the other uses for Oil of Oregano, i.e. I believe it can be used as an antibiotic and for stomach issues.

 

I agree with all this...but I think the oil of oregano was for treating a wart!
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When my dd10 was 7, we took her to the Amen Clinic in VA. I was convinced she fit Dr. Amen's description of over-focused ADHD. Not sure if any of you are familiar with Daniel Amen, he's been on PBS recently. Anyway, he does these SPECT scans and has done tens of thousands of them. He breaks ADHD into 6 types, mainly hyper, mainly inattentive, mixed, mixed w/OCD (over-focused), and something he calls "Ring of Fire" ADHD which is akin to bipolar.

 

So, dd has the SPECT scan and it comes out her whole brain is overactive- Ring of Fire. But my daughter doesn't rage, not even a little bit (yes, I'm grateful.) She holds grudges and is irritable and hyper-focused, but no temper/anger/raging issues. So her "cycling" basically went from hyper, gitty/silly/goofy to irritable/little grouchy.

 

It's (not so) funny, but I took her to Amen because I wanted some objective measurement and not just a psychiatrist's interpretation of how she behaved in the office or how they interpreted our observations of her behavior. I always doubted the "Ring of Fire" AKA mood disorder-nos AKA we think she's bipolar but she doesn't quite fit that dx. She tried so many different meds, in so many combination; it was what I call Symptomology Whack-A-Mole and it failed.

 

I'm surprised MOST PANDAS kids are dx bipolar! Many more of the children's stories I've read here fit Ring of Fire much closer that my dd does. Looking back, it's so much clearer. Does bipolar really result in cognitive decline, handwriting deterioration, behavioral regression, urination holding, bed wetting, dilated pupils, livedo reticulitis and loss of reading, writing and math skills? How can the medical community be so willing to open up rare adult diagnosis like bipolar, yet so easily dismiss pandas??

 

My dd10 had ivig 3 1/2 weeks ago and is off ALL PSYCH MEDS for the first time in over 4 1/2 years!! I'm not going to beat myself up that it took us so long to figure this out, but I thank God everyday those psych meds did not cause irreversible brain damage and that PANDAS is swelling, increased volume, not brain damage and that it can be treated effectively.

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Thank you for all the feedback. I really needed that support tonight.

 

LLM- Your post is what makes this board so amazing. For some reason I am still surprised and awed by posts such as yours that show the wonderful caring and support this board provides. Yes, we are the ones that have the T&A on Friday, So you are right I need to focus there on getting him through that and moving on safely from that. I am going to call the ENT tomorrow regarding what abx he can safely take following the T&A.

 

Also my son's specialist who dx the PANDAS is a pretty no nonsense woman so I guess I will call her too. I had planned to anyway when school was over in order to get off all his meds since I feel we are attacking symptoms (tics, ADHD, anxiety) but not cause and I don't know what effect the psych meds could be having on him and his behavior.

 

I appreciate hearing aobut all your kids too and their stories because it gives me perspective. Having lived with a dh with bipolar for 13 years I guess there is always that fear in the back of my mind for my kids... long before PANDAS even so boy did the therapist know how to push my buttons. It is good to hear that really PANDAS can be mistaken and so I need to not let my own anxiety take hold.

 

Boy, this disorder sure keeps us parents on our toes. :angry:

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oil of oregano is great for bacteria. It tastes awful but it works.

 

I think if you search "warts" on this board, there was a thread about the other uses for Oil of Oregano, i.e. I believe it can be used as an antibiotic and for stomach issues.

 

I agree with all this...but I think the oil of oregano was for treating a wart!

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This stuff is good to hear, I have been told by dd9 docs. that they think there is co-morbidity (sp?) the ocd/ anxiety piece, and then another severe mood disorder. it is crushing to hear that and to have your thoughts go from pandas to a lifelong struggle.

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I think it is also important to remember, these problems are on a spectrum, not yes or no. PMS is on the mood disorder/bipolar spectrum (gentlemen, try to control the urge to knock that softball out of the park) If your "ocd tendency" results in you being a workaholic or avid reader that person is viewed much differently than a kleptomaniac.

 

My biggest issue w/psychiatry is you can back yourself into many diagnosis if you look hard enough.

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This stuff is good to hear, I have been told by dd9 docs. that they think there is co-morbidity (sp?) the ocd/ anxiety piece, and then another severe mood disorder. it is crushing to hear that and to have your thoughts go from pandas to a lifelong struggle.

This was my thought exactly...PANDAS with an expectation of out growing it to a lifelong sentence of bipolar. Hard thought to adjust to. Hopefully PANDAS will be the extent of it for our kids.

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JAG10! How right you are! I love that word, "spectrum"! The word -- and the concept -- are important beyond any brief explanation!

 

Of course, I don't have a tidy answer. (If I did, my kid would be healthy, I'd be rich, and there would be no such online forum as this one!)

 

However, I feel confident saying that lots of illnesses deemed to be "bipolar disorder" or "ADHD" or "OCD," etc., etc., etc.... MAY VERY WELL BE CLUSTERS OF SYMPTOMS RESULTING FROM ORGANIC DISEASE (quite likely post-infectious autoimmune disease!) NOT YET FULLY SCIENTIFICALLY UNDERSTOOD....

 

My own child went for three years with a mistaken diagnosis of "bipolar disorder," before he was diagnosed with "PANDAS." Frankly, both terms may be clumsy and inadequate labels for myriad mysterious disease processes going on in our kids. When patients are used to serve diagnostic labels, instead of the other way around, what you get is politics, not science -- and not medicine -- and not healing.... In a few generations, the terms "bipolar disorder" and "PANDAS" may well be obsolete, and seem every bit as ridiculous as the label of "witch" for some unusual or brain-sick person who happened to live in Salem, MA, before the American Revolution.

 

"Bipolar disorder" is a label for a cluster of symptoms without an identifiable organic cause. This does not mean that there IS no organic cause, it just means we don't yet know what it is (or what THEY are -- probably multiple factors!). It might even turn out someday that the conditions we now call "bipolar disorder" and "PANDAS" overlap....

 

What matters most is not which diagnosis our children get, but whether it's even remotely correct -- and whether it can help us help our kids! Knowledge is painful, but also powerful!...

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