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This may just be a shot in the dark or me grasping at straws as we wait for our appt. in Plano and my daughter continues daily rages and tearing our house down, but.....it seems like there are a LOT of PANDAS kids my dd's age. She just turned 11. I know that there are kids of all ages affected by this, and I have 3 other children that are positive for Lyme, and I suspect PANDAS in at least 2 of them. BUT.....DD11 is by far the most severely affected. And I guess I am just wondering if any of you have found that to be the case (or perhaps I am truly just desperate, which is a possibility). In my daughter's class of 12 kids, 3 of them were severely affected with SOMETHING. Turns out 2 of us definitely have PANDAS/Lyme/Other stuff, and the other hasn't been tested. Her mother thinks that she has Asperger's.

And so many people that I have found online also have kids the same age. Can't be that 10 or 11 is when it hits, because all of us that I know have had issues for a while. Wondering if kids in that age group got certain lots of vaccines, something...... Hmmmm......

 

And on a side note, DD currently seems bright-eyed and happy a lot of the time, but can easily fly into a rage when she has to do something that requires executive functioning skills....like homework or completing a chore. Or if something is unexpected. Like yesterday, her sister cleaned her room because it was an absolute disaster, and she came unglued and destroyed our bedroom door by beating it with a heavy ride-on toy. If I just let her play all day and don't change anything, she is happy as a clam right now. Very immature, sometimes manic, but happy. At this point, her school is telling me that she is going to fail 5th grade if things continue this way. Not because she is failing the work, but because she isn't completing it in class, can't get any of it done at home and is missing days here and there due to not being able to get going or having a rage before school and not being able to get herself back together, etc.

 

Maybe we can all fall asleep until our appt. a week from tomorrow. :o)

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In my daughter's class of 12 kids, 3 of them were severely affected with SOMETHING. Turns out 2 of us definitely have PANDAS/Lyme/Other stuff, and the other hasn't been tested. Her mother thinks that she has Asperger's.

And so many people that I have found online also have kids the same age. Can't be that 10 or 11 is when it hits, because all of us that I know have had issues for a while. Wondering if kids in that age group got certain lots of vaccines, something...... Hmmmm......

 

 

Wondering if there is a lot of undiagnosed Lyme/coinfections in your community contributing to this?

 

Your dd's class is very small btw.

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My suspicion is its been going on longer than you realize. The younger you are, the more acceptable these PaNS behaviors are and are still considered within the range of development. By 10 or 11, they aren't so normal and become obvious. Also, they are probably worse from lack of treatment and their chronic nature. My DS was 5 when this started abruptly with raging but the reality is, in hindsight, it started at 3 and wax and waned until poop hit the fan at 5, after a flumist.

 

The raging is from interrupted OCD or trying to get her to do something she's having irrational thoughts about but is not able to tell you about. In the worst of it, my son was fine watching tv or playing video games and not be interrupted by dinner, school, bedtime, etc....that's when the raging anger started in.

 

He's 9 now. Schools going well but the residual behaviors are more noticeable now that he's older and I expect that line will become smaller and smaller as he gets older IF we can't get this completely under control.

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Mine too - she is 10 and literally fell off the cliff this January on her birthday to be exact. Has been out of school over two months. It was in the works for a while but she literally exploded on her 10th birthday.

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Your daughter sounds very much like mine did before beginning treatment.

 

DD11 was socially immature. She got along well with children at least 3 years younger. She could only understand more mature behaviour if she could read about it in a book (on how to handle anger, sadness etc). She did not seem to pick up social cues by watching others, or even by role playing with dolls/toys. Not that her eventual understanding made any difference to her reactions. She understood completely how to react to a situation, but could not respond correctly under stress. Her piano teacher had to give up lessons because she would hit herself and rage if she played notes incorrectly (practice was a disaster too, I sat beside her for every one to help her out - 3 years worth, there was so much crying). If she could memorize the finger movements on the keys, she was good, but with pieces longer than 2 pages this became too difficult.

 

Executive function was non-existant and rages would occur with any unexpected transition or frustration. She needed prompting for everything. I had to either dress her, or stand in her room and say "put on your shirt, put on your pants" etc., or she would become distracted and head for a book. I had to brush her teeth because trying to brush while looking in the mirror was too confusing. She had a total lack of concentration. I had to sit with her every night with homework to redirect her attention. I had to teach her every new math concept at school because she couldn't pay attention long enough to learn it from the teacher. She was removed from class to write tests (with an EA to refocus her on the test if needed) because the other kids were so distracting. She was super sensitive to sound/movement.

 

Usually she was happy to play in her own little world of dolls and books (she didn't really read them though, just skipped around and read bits here and there. Pictures were always good), and would do so for hours. She could become totally lost in TV or computer if I let her (but I didn't - 1 hr/day is it). If nothing was required of her, life was great. In fact, I may have left her to it, thinking she was just a quirky, immature child if she had not eventually developed pain/physical symptoms.

 

After 1.5 years of lyme/bart/babesia treatment she really is a different child. She works calmly through frustration, she doesn't rage, she concentrates through all homework (even with noise or other distractions). She makes her bed, picks out clothes and gets dressed by herself. She keeps an eye on the clock in the morning, takes her supplements at the right time (and reminds me if I am running late with them), eats breakfast, and gets herself out the door for the school bus. Mornings used to be a horrible scramble of jamming her in clothes and screaming, but now it is a beautiful thing! She sits down and does her homework when she gets home. She sets the table without being asked, and volunteers to help in the kitchen.

 

She is still has some motor/vocal ticcing that flares with protocol changes, but seems to accept it as a part of life. I often wonder what would have become of her if we had not sought treatment and had instead gone the ritalin route. Of course, we still have a ways to go, as she is still on multiple abx treatment, but I now know the sweet girl that was hidden behind all the confusion and pain.

 

There have been two children in her classes thoughout the years that have been expelled for rages (requiring police assistance). Both had dx of tourettes with OCD. DD11 was always sad about these incidents, because she said, other than the raging, the children were nice. You have to wonder if it was really PANS...

Edited by rowingmom
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Oh, my heart aches for our kids. So many people don't get it. And even though I get it, I am often at a loss as to how to handle the behaviors. I know that my girl is in agony at times.

 

Yes, our issues started much earlier. She was quirky when she was younger, had huge separation anxiety and what I sometimes thought might be OCD, but she was just so stinkin' smart and loving--I just thought quirky went with that. Most of the people I have know who had kids with issues that were the same age....their issues started between 3 and 5 as well. It's just....odd. But maybe it's just the same thing as when you are pregnant and all of the sudden the whole world seems to be pregnant, too, because you are so focused on your case....

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My daughter fell off the cliff at age 10 also. My guess is that the combination of pre-existing immune disfunction (diagnosed yet as such or not), and the changing hormones associated with the onset of puberty is the game changer. I don't know this to be factually true, it's a hunch.

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Our daughter's motor/vocal tics started at 7 years. During August of that year she had her MMR booster, TDap booster, got bitten by an insect and reacted with a large rash. Her physical lyme/bartonella symptoms started 4 months after she turned 10. Shortly after that I noticed the buds on her chest starting to enlarge.

Edited by rowingmom
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Our daughter's motor/vocal tics started at 7 years. During August of that year she had her MMR booster, TDap booster, got bitten by an insect and reacted with a large rash. Her physical lyme/bartonella symptoms started 4 months after she turned 10. Shortly after that I noticed the buds on her chest starting to enlarge.

 

 

My DD10 has buds on her chest enlarging now. What is that a symptom of?

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My suspicion is its been going on longer than you realize. The younger you are, the more acceptable these PaNS behaviors are and are still considered within the range of development. By 10 or 11, they aren't so normal and become obvious. Also, they are probably worse from lack of treatment and their chronic nature.

 

Agreed! I think there is a lot more not-sudden-onset PANDAS/Pitands than people realize. Low grade symtpoms start when they are toddlers, so easily written off as a phase or quirkiness....then symtpoms slowly ramp up and become more chronic.

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Our daughter's motor/vocal tics started at 7 years. During August of that year she had her MMR booster, TDap booster, got bitten by an insect and reacted with a large rash. Her physical lyme/bartonella symptoms started 4 months after she turned 10. Shortly after that I noticed the buds on her chest starting to enlarge.

 

 

My DD10 has buds on her chest enlarging now. What is that a symptom of?

 

Puberty!!! :) That's normal!

 

But it certainly makes sense that the hormones associated with puberty could cause changes in the immune system, such that it might cause lyme/bartnella to come out of an inactive/dormant phase. ??? wild theory

Edited by EAMom
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Our daughter's motor/vocal tics started at 7 years. During August of that year she had her MMR booster, TDap booster, got bitten by an insect and reacted with a large rash. Her physical lyme/bartonella symptoms started 4 months after she turned 10. Shortly after that I noticed the buds on her chest starting to enlarge.

 

 

My DD10 has buds on her chest enlarging now. What is that a symptom of?

 

Pubic hair, growing breasts and even starting menstrual cycles around the age of 11 is no longer uncommon.

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Our daughter's motor/vocal tics started at 7 years. During August of that year she had her MMR booster, TDap booster, got bitten by an insect and reacted with a large rash. Her physical lyme/bartonella symptoms started 4 months after she turned 10. Shortly after that I noticed the buds on her chest starting to enlarge.

 

 

My DD10 has buds on her chest enlarging now. What is that a symptom of?

 

Puberty!

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