Puberty and Pandas

[Missmom]

Hi pandakid11,

 

I plan on trying to keep my ds12 on some type of abx until at least puberty maybe longer depending on if my dr. will continue to rx my son abx after puberty. He is taking 500 mg keflex once daily for prophylactic and then we bump up to augmentin. 2x daily for flair-ups. My question to some of the more experienced moms on this board is how do we know when boys hit puberty. With girls it is pretty easy they start menstrating. With boys I think it takes longer but should it be when their voice changes, or what. My son is 12 now and he is developing but it is still hard to know. I think most boys are pretty private about what is going on with their bodies especially in front of mom, at least my son is. He gets embarrassed and will not talk to me about any of it. So any advice on this would be appreciated. I asked my hubby and he does not really remember when he hit puberty, so he is no help.

 

As far as outgrowing pandas, our neuro seems to believe many children will improve greatly after puberty, maybe not cured but much improved, and I have also heard of other doctors mentioning this.

[MomWithOCDSon]

My question to some of the more experienced moms on this board is how do we know when boys hit puberty. With girls it is pretty easy they start menstrating. With boys I think it takes longer but should it be when their voice changes, or what. My son is 12 now and he is developing but it is still hard to know. I think most boys are pretty private about what is going on with their bodies especially in front of mom, at least my son is. He gets embarrassed and will not talk to me about any of it. So any advice on this would be appreciated. I asked my hubby and he does not really remember when he hit puberty, so he is no help.

 

As far as outgrowing pandas, our neuro seems to believe many children will improve greatly after puberty, maybe not cured but much improved, and I have also heard of other doctors mentioning this.

 

Hi Missmom --

 

I don't have an answer necessarily to whne puberty begins, let alone when it ends, for boys. Like your son, mine began developing at about 11-12, growing hair in the right places, bulking up muscle-wise. The physical growth and emotional maturation has continued but, even now at 15 and a half, his voice still hasn't dropped! It's not high-pitched and squeally by any means, but when his friends come over and say "Hi, Mrs. M" is a deep bass voice, it highlights how high DS's voice continues to be. So, I know he's entered puberty, but some of the major changes are still sort of delayed. Why? If anybody has any idea why all the other signs would be present, but not the voice drop, I'd love to hear it!

[MIAS_MOM]

I PM'd you a short story of improvement with my

dd's puberty.

[kos_mom]

Like Moody in the Harry Potter series, I'd advise constant vigilance. My DS's symtoms died down by the time he was 12 or 13--ten years ago--only to come back when he got strep after his freshman year in college and again after his junior year. I'd been assured that PANDAS pretty much went away by the time kids were 16 or 18 that I didn't initially even connect the dots for two months when his OCD came back his first summer home from college. DS's ENT did a T and A this sumer and told us he had noticed he is seeing more college age kids with PANDAS.

[EAMom]

PowPow - I save all my rotten tomatoes for my voodoo dolls named Roger and Harvey. None for you

 

:D :D

[EAMom]

Our LLMD said he is not picking up lyme during muscle testing. Would you do that expensive test anyways?

We are so frustrated. The bizarre thing is that he can have days where you wouldn't know he was sick. He

perked up for his grandparent visit and then started shaking at the end, so the Grandparents concluded it

was our fault somehow.

 

Test with Igenex. If you have a PPO that might cover some of the costs.

 

Or, you can start with Quest (or whatever regular Lyme test western blot is covered by your insurance), and follow up with Igenex if Quest doesn't give you a diagnosis. (If Quest is positive, no need to spend $ on Igenex.)

 

I understand Lyme can cycle/wax wane, kids feel better for a while, then worse again.

 

As far as PANDAS resolving with puberty, dd started her period in Jan. Overall doing well, not 100% though...now we have relapse after 1 week of sleepaway camp this summer. We even doubled her Azith to 500mg/day that week. "Measurment rituals" and food concerns/compulsions are have risen. So, puberty has not been a magic ticket for us. I don't think she was ill during camp, but exposed to something?? Who knows. I have heard of kids doing better when much older (20's). But, I have also heard of PANDAS persisting into adulthood.

 

Strep is not my dd's only issue (flares with viral things eg H1N1, fifth's, any viral fever), so it is more complicated for us than just not getting strep.

 

I also agree with the others that your child's constellation of symptoms (pain, neck pain, paleness, headaches) seem very tick-borne, and less straight PANDAS (OCD? tics?).

Edited August 12, 2012 by EAMom

[JAG10]

1344733895[/url]' post='144408']

 

 

As far as PANDAS resolving with puberty, dd started her period in Jan. Overall doing well, not 100% though...now we have relapse after 1 week of sleepaway camp this summer. We even doubled her Azith to 500mg/day that week. "Measurment rituals" and food concerns/compulsions are have risen. So, puberty has not been a magic ticket for us. I don't think she was ill during camp, but exposed to something?? Who knows.

 

EAMom,

Is it possible that her uptick in symptoms is a result of a naturally high anxiety circumstance? Being away from home, around many strangers, all the anxiety that comes with the social posturing of young teenage girls? Like a learned response instead of an infection based response? There have been a couple of occasions when I was fairly certain my dd12 was not sick, but in an anxiety provoking situation and I would see a symptom stick its tongue out at me. So far, I've dealt with this on our own, identifying it, naming it, calling it out and sending it packing. It is not frequent enough or severe enough (in my eyes) to warrant starting up therapy again. When you said sleep away camp, that was the first thought that popped in my head. Just a thought.

Jill

[EAMom]

1344733895[/url]' post='144408']

 

 

As far as PANDAS resolving with puberty, dd started her period in Jan. Overall doing well, not 100% though...now we have relapse after 1 week of sleepaway camp this summer. We even doubled her Azith to 500mg/day that week. "Measurment rituals" and food concerns/compulsions are have risen. So, puberty has not been a magic ticket for us. I don't think she was ill during camp, but exposed to something?? Who knows.

 

EAMom,

Is it possible that her uptick in symptoms is a result of a naturally high anxiety circumstance? Being away from home, around many strangers, all the anxiety that comes with the social posturing of young teenage girls? Like a learned response instead of an infection based response? There have been a couple of occasions when I was fairly certain my dd12 was not sick, but in an anxiety provoking situation and I would see a symptom stick its tongue out at me. So far, I've dealt with this on our own, identifying it, naming it, calling it out and sending it packing. It is not frequent enough or severe enough (in my eyes) to warrant starting up therapy again. When you said sleep away camp, that was the first thought that popped in my head. Just a thought.

Jill

 

good point...I don't think so, but maybe. She was in a cabin with a couple of good friends from school. And, when I went to pick her up the girls seemed to like her/be nice. But maybe there was some other anxiety going on? One thing that may be significant, was that she went the whole time (Sun-->Friday) without pooping. Apparently the rule was that someone had to accompany you to the bathroom. My dd didn't want someone waiting outside the bathroom for her, so she just didn't poop (yeah, how is this even possible?). She's not a fast pooper at home (I think she goes every other day?). So, maybe some kind of GI workup might be in order? some kind of food allergy? ugh

 

Her symptoms seem to be slowly decreasing (since camp--mid July) but are still there (still worse than before camp).

 

The only other sleepaway camp she had gone to was science camp in 5th grade (with school) and there were absolutely no problems with that (pooping or exacerbations).

Edited August 12, 2012 by EAMom

[JAG10]

I think anxiety can impact the bowels. I had a friend tell me her poop turned white after a tragedy in her family. Perhaps your dd's anxiety about holding her bowels so she wouldn't have to face the stage fright of someone waiting for her set her off?

 

I admire you. I've never sent my dd12 to sleepover camp. I'm sure anxiety would be high for us both.

[minimaxwell]

My DD had both lVlG's at the age of 17. Onset was around age 6. They helped her very much. however any time she gets sick/exposed symptoms come back a little. Not sure I buy into the whole puberty thing. Dr Jenike recently told me of several adult patients with sudden onset of OCD. One in particular started abx and symptoms went away completely.

[MomWithOCDSon]

Might it just have to do with the maturity/efficiency of the immune system overall, and not really be a reflection of any chronological age markers?

 

I mean, clearly, there are many adults with autoimmune disorders like lupus and Chron's, so it would follow, wouldn't it, that an adult could also develop PANDAS or PANS?

 

As for when it "clears up" or the ravages of the disorder become more manageable, I would think that this, too, would be a function of when the immune system becomes better balanced, neither immune deficient nor hyper-immune, but behaves with some consistent and reliable efficiency in the face of "invaders."

 

So, maybe some kids do enjoy a "relinquishing" of PANDAS symptoms upon puberty or shortly thereafter because what their immune systems needed was time and opportunity to mature, to self-regulate. But maybe some others won't respond in that way and they will continue to need support longer, not unlike adults prone to autoimmune disorders.

 

I think there's also something to be said for the impact that hormones have on the brain and behaviors, not to mention the pro-inflammatory effects they can also have. The onset of puberty is that point in time at which the production of adrenal androgens (estrogen for girls, testosterone for boys) begins to increase, and though it usually happens with girls earlier than boys, the ages of 10 to 13 are generally identified as the key "puberty onset" years. So even without PANDAS or PANS, our preteens' brains are being ambushed all the same, and adding an autoimmune disorder must likely be like pouring gasoline on the flames.

 

So, "on the other side" of puberty, average kids can become more reasonable, more measured and less emotional in their responses, less volatile, less likely to make questionable choices. One would think it would be the same for PANDAS/PANs kids, as well on some level, no?