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  • pandas-cover-cropped.pngYour Child Has Changed; Should You Consider PANDAS?

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susieq22

Do symptoms change after puberty?

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My DD (almost 13) started menses about 6 months ago. Her PANDAS symptoms had been pretty mild and manageable until a few weeks ago- mostly anxiety/OCD which is worse at night. Her OCD consists of intrusive thoughts as the obsession, and telling me (mom) as the compulsion. She can't go to sleep until she has purged her brain of all of the bad thoughts and I assure her that everything is OK and she doesn't need to worry. Within the past few weeks, those intrusive thoughts have gotten much worse- more disturbing to her and more intense and frequent. Bedtime is a nightmare!

 

The strange part is that since puberty, her tics have become almost non-existent. Before puberty, she cycled through all sorts of tics. Before puberty, when PANDAS was bad, the main symptoms were tics, anxiety, and intrusive thoughts, but she never seemed depressed. In fact, when tics were bad, her seemed almost giddy she was so happy (high Dopamine?). Now, after puberty, the tics are gone, but along with the OCD that I described above, she seems depressed. Maybe it's because the intrusive thoughts are more disturbing and she often talks about how guilty she feels about the thoughts. She never mentioned guilt before.

 

She's had PANDAS since she was 5 (maybe before). Treatment has included antibiotics and IVIG one year ago. She seemed to get worse for many months after the IVIG, then slowly got better, though I'm not sure if she got better than she would have gotten without it.

 

Anyone else experience a big change in how symptoms present after puberty? I've read all the thread I could find about puberty, but mostly people were discussing whether symptoms would go away or not.

 

Thank you!

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In our DS's case yes, they changed after puberty. Actually, the nature/presentation of the OCD was almost constantly morphing and, for the most part, seemed to take on almost an "allergy-like" over-representation of whatever age-appropriate issues you might see in a kid without PANDAS or OCD.

 

For instance, prior to puberty, the OCD was almost entirely contamination oriented: potty concerns. After puberty, the obsessive thoughts like your daughters became much more prominent and led to a lot of rebellious arguments over what was or wasn't fair, what was or wasn't "appropriate" or "the right thing to do," etc. It really was a massive exaggeration of what you hear from your friends about their kids who are the same age, but not struggling with this disorder. Those kids are also generally rebellious in some way and struggling for independence, being good, being liked, etc. For our DS at the time, it was just all that "on crack," if you will. <_<

 

I imagine the depression is akin to that, as well, to some extent. I can remember, as a teenage girl, and I imagine most women can recall, feeling quite depressed at times over things that went down at school, with my sibling, etc., though I wasn't then nor have I ever since been diagnosed with clinical depression. It's just part of growing up, I suppose. But for a PANDAs kid who's already contending with other issues, I wouldn't be surprised to see the standard teenage angst reach epic proportions, reflect an exaggerated level. That's not to say it isn't real or something to keep your eye on and address so that it doesn't become a prevailing, long-lived issue.

 

Sorry you're still contending with this, but given your experience, I'm sure you guys will get through it. All the best!

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I am an adult female. I was never diagnosed with any mental illness as a child, as my parents addressed any psychological issues as solely behavioral problems to be disciplined. That being said, I suffered from very severe OCD symptoms that (I suspect) **might have been a result of PANDAS. [As this was never diagnosed nor treated, it is purely personal seculation based on the symptomology and relative  timeline of exposure to streptococcus- I also share other speculations as to possible causes for the disorder, though mostly suspect the former.] I can say that for myself; the OCD began to dissipate very significantly after puberty and continued to do so over the years.  I have no significant nor any life debilitating symptoms remaining of OCD whatsoever.  The most debilitating and severe period of OCD that I had was between the ages of about (I think) 7-12. However, the habitual thought patterns that I had developed in my brain during that time (mind you with no counseling/medication or understanding of it as a disorder whatsoever) did take a significant amount of years to fully recover; therein many behaviors still remained. I say this because I do believe that it is highly possible that the neurophysiological OCD had in fact been mostly if not wholly eradicated during the pubescent period in which I would had been experiencing many hormonal and chemical changes in the brain possibly countering or overwhelming some others. (Again- this is much personal speculation.) Nonetheless, because OCD is what it is, I find it impossible to consider these behaviors would disappear at the same time. Gradually they did go away. I imagine then on came bigger problems of being a teenager and every little bit by bit the tics and compulsions and obsessions did dissipate. I was VERY secretive of rituals (tapping/counting/hoarding/maaany others) and did them in a way not to be seen. Because of this and that whatever my parents might had known was never pronounced to me as a "mental disorder", I credit my ignorance to having an actual illness in a way to having had allowed me to recover; as there was no stigma or added obsession (i was highly obsessed with everything) that I was handicapped with a psychological ailment. In a way, the denial around me helped. This is NOT to diminish that as a whole, however I suffered far more severely because of it. But it is worth noting i think that sometimes less attention may help with recovery. Overall of course, a child needs their mother so much, and for one with ocd- they really need their mom. I love my parents who did just as they felt best, but during that time (that to this day I remember SO well as being so truly horrifying for me), I didn't have that. I was so extremely confused, shameful, scared, and exhausted. And so incredibly isolated. I am so grateful pediatric illnessness like these are finally recognized and kids now can have amazing mothers like you who are on their side of the struggle with them rather than at the other end of it.  No child should have to feel so shamed, scared, and alone. Illness, treatments, recoveries  and even regressions are just as any other  experiences and trials of life. They are part of each individuals journey into becoming the person they are meant to be. And children are (be them healthy/disabled/'normal'..whatever) absolutely beautiful and perfect every step of the way. This is what I wish my mother would had said to me. So i could have understood that I'm not my illness, but my strength to battle this is part of what makes me so incredible and builds my character into the fantastic person I am to become.  (Of course- this and also 'lets see a psychiatrist and get treatment'), but all the same ;)  
Sorry about the tangent! I came about writing this commenr ( now... memoir) in searching this subject in Google just now out of random curiosity while reflecting upon my past. When I saw your q,  I felt I just had to respond with hope because my google search q was: "my pandas ocd gone after puberty".  When I read this, I was so inspired by you and what you are doing for your child. Asking these questions, treating her, and being in the fight along side with her. I joined just so I could write this to you to thank you for what you are doing for her and to send the hope to u both that it absolutely goes away. I can only imagine how exhausting and challenging it could be for a parent. But can also know first hand how horrible it is to have the illness, and to go it alone as a kid is beyond awful. So that's it, really.  BLESS you mom for taking care of your girl and it absolutely does get better, as I feel that indeed post pubescence changed everything. So yes- hope is there and she WILL recover. I had a fantastic  time by high school being ocd free (mind you tendencies there but I feel this is a bit of personal brain wiring and takes lots of time and work . It was NOT like it was before puberty). Keep being the AMAZING kick   mom you are. I'm so SO happy she has you.  Just needed to respond. :)
[[**As a side note: in respect to the other comment made by a parent in which i felt some ocd kids might be getting stigmatized by the illness and certain behaviors are being either dismissed or over addressed as psych symptoms when in fact they are either one of 2 things: an unrelated call for help or personal struggle environmentally that isn't to do with ocd, or otherwise just a very healthy response to stresses of puberty. I wanted to throw out the fact that nearly every  pubescent child/young adult/teen are often incomprehensibly 'nuts by nature' too! Please consider it's a crazy time for them (thier brains, bodies, self identy, sense of life..) and the healthiest girl during puberty can be a total weirdo obsessive anxious nightmare of a kid too :) I wouldnt had wanted my parents to say to me it was the 'ocd' every time I acted out (either by way of empathizing/diminishing/ reprimanding or whatever) and I could be horrid at times. I fear it would had kept the obsession for me longer and I would had never believed I would be rid of it. . Maybe i would had even used it as an excuse to get away with bad behavior which would had also drawn self identity to ocd and inhibited recovery .  A BIG part of breaking this very strong mental lock is to forget it whenever possible. And it is VERY hard to do, but a beautiful thing when it happens. And each instance builds into healing. Sometimes it is rare and fleeting. Sometimes it is  overwhelmed by something else negative (like even some nutty teen drama being created). I would just hate a reminder if it wasn't on my brain already. So i say, if they are being teen brats and it is not 100% textbook symptomatic of OCD, then dont call them out on having a psychological illness, call them out for being brats! (Just my opinion)]].
Good luck to you and your amazing kid. You're really a hero to me. Truly. Much love.

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I'm a little late but have to respond because our symptoms change meant that we - who were experienced with PANDAS - completely missed the "after puberty relapse" for 2 years.  Our son was diagnosed in 2010 or 11 at age 11.  We, the parents found this and worked to show and educate his pediatrician about PANDAS.  The symptoms at 11 years old were obvious - vocal and facial tics, tapping and counting, repetitive phrases and eventually only those phrases.  But he was a happy ticcer.  CBT did nothing as they said he was not anxious or depressed, but he had to do things his brain told him to do.  We had this thing "licked" after a year of high dose abx.  

Flash forward to Spring and summer 2016 - my kid after sophomore year of college - top 5 school, national athlete - suddenly is so anxious he can't interact with high school students at a summer camp.  He feels everyone is "putting him down" or "out to get him".  Every interaction is stressful and eventually he would not leave the house.   His personality changed 100%. He alternated between despair and optimism but often felt completely apathetic. He begged for help, kept saying "something is wrong - this is not normal"  but to us the signs were invisible - no tics, no repetitions, nothing you could see.  He talked to a counselor (no value).  We never, ever thought PANDAS.  There was no similarity to his previous diagnosis.  However, his mental anguish was horrible and waxed and waned over the next two years until finally last June, after a case of strep that went untreated because he did not have a fever and was refused a swap test,  he completely fell apart with intrusive thoughts and irrational behavior.  Suddenly his dad said "this is completely irrational - it must be PANDAS"  The ASo titers came back at 932, Cunningham Panel (now existed) was 3/5 positive.

I'm telling you we had not forgotten about PANDAS but the second time looked so completely different we, who were looking, completely missed it.  We're on it now but feel like he has suffered two extra years and we hope we are not too late.

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Beenthere --

How interesting, the change in presentations!  In our cases (both mine and my DS's), it's gone in the exact opposite direction!  I was totally classically asymptomatic for strep as a kid, as was my DS:  no fever, no sore throat, and no positive swab.  But behavioral symptoms abounded for both of us, and strep titers for my DS were extremely high when finally tested (mine were never tested since no one had a clue about PANDAs when I was growing up).

Now, as an adult, I get classic strep (high fever, horrid swollen throat), and though my DS has yet to "catch" strep in his fresh adult years, he's no longer behaviorally responsive to exposure to strep.  I will, however, thanks to your story, keep a careful look-out as maybe his behaviors will be very different, too, should it come his way again.  :-(

That said, I'm CERTAIN you guys will get this under control again, and please don't beat yourself up about the time that it went unrealized.  You can't know what you don't know and no one else knows, but now you're not only correcting course, but you're helping others be aware and potentially do the same. Lots of light coming your way as your DS heals...hopefully for the last time! 

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Around 14 years of age my ds stopped having tics and instead started presenting with delusional/psychosis type symptoms and more intrusive thoughts. It's been a nightmare.

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