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tu4four

She has PANDAS, but perhaps out current issues really are more asperger's?

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I have 't been on in a long time. I have four children, one severely affected PANDAS kid and two others who wax and wane to different, but frequently manageable, degrees and another who I often wonder about.

 

My most severelt affected daughter just turned 13. We have see a great dr in Colorado..., .she seemed a little better for a little while, but not nearly complete. Her OCD appears to be gone and has been for a couple of years. But she is seriously oppositional and irritable. She spent four solid years on psych meds--no e of which maintained a good place for her. She had her to tonsillectomy three years ago which set off another bout of intense separation anxiety, but that eventually resolved. About two years ago, she started flat-out lying to us. She has not been very obedient for the past few years, but at this time, she just became super-defiant....as in----I'm not going to pick up my clothes and you can't make me! Or running from me, calling me an idiot, a loser, etc.

 

We had given her an iPod for Christmas a couple of years ago at Christmas (with disabled Internet). However, last year she somehow got on her sister's iPod and went to several porn sites. I thi I it started innocently but then one thing popped up and then another. She followed the trail. At Christmas this year, she got hold of my computer that did not yet have our filter on it. She stayed up all night on chat sites, teen dating sites, etc. she lied about he fact that she had the computer. She spent the next day calling her sister a b****, being generally hateful and trying to get back on those sites whenever she could. I have no idea what all she did. But e did find that she had long chats on two or three occasions with two or three different guys. A couple of them were beyond highly suggestive. One of them was trying very hard to get him to send her nude pics or pics of body parts, and while I have no proof, I think whorl ably did. He asked her to do several sexual things to herself, which she told him that she did. She mentioned to him at least three times that they could run away together. She told him her siblings' ages and sent pictures of them. It was a big deal. I reacted wrongly and exploded. She knew it was a big, big deal. We told her again all about the sex trafficking industry. It was huge.

 

Her psych insisted we put her on a higher dose and different med to keep her safe. Although I am not sure if more psych med makes them think differently, I agreed because I didn't have a better idea. So she has been on more meds, and sometimes she's okay, and sometimes she's horrible--doesn't seem consistent with more med. this weekend we had family friends over--my dqughter's BFF has her own iPhone and iPad. I knew this was a bad idea. The friend is only allowed to be on Pinterest. I should not have allowed my daughter to even sit with her friend and look at it, but I did. By the end if the weekend, I got a report from the friend's mom that my daughter had created a Pinterest account--which is a big no-no (creating an account). Later, I got a report that my daughter has a tumblr acct. my daughter lied about having it. She had created a Facebook account two years ago that I told her she could not have, but I did not delete it because I felt like at least if she got computer access, I knew how to get to this--otherwise she might create an alias. I checked her facebook account last nigth, and she had been on and had, through fb, searched for all kinds of things including sex and porn photos. AND she knew enough to search for those things iin a way that was visible to "only me".

 

So....I know that she has some medical issues. BUT.....what do I do with this and things like it? I cannot trust her in a room next to me. I can not trust her whatsoever. She REFuSES to obey. This is with me by her side almost ALL the TIME since we homeschool.

 

I guess I am asking if this seems to be a symptom which I can of change or bad behavior. I have my own opinion, but.... She is not raging like she used to. She does not respond to discipline. This has been going on for a long time but just continues to get worse as she gets older. She just turned 13 on Friday.

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I wish I had an answer. Mine just turned 13 as well, and has autism, but it is affected by PANDAS and autism very differently. I wish I had better advice or any real advice.

 

Have you three been to family counseling? She sounds very angry, but I have no idea from what or if I am even right.

 

If it is medical, I suppose the overwhelming interest in sex and porn could be an expression of OCD. The anger could be a psycho/medcial symptom of PANDAS.

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You treated bartonella right? Unexplained anger sounds like bart.

 

Treating bart and babesia got rid of DD13's defiance, OCD (though it was not at a high level to begin with), ADHD and Asperger's tendencies.

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We did treat bartonella, but maybe not long enough. I am going to go back and look at what we used and how she was behaving then.

 

Does the complete disregard of any rules go with Bart, too?

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We have not had any bloodwork done recently. Things sort of ground to a halt with the second neuro doing an EEG (normal) and tons of bloodwork. He said she looked like asperger's to him, which I have always fought. But we are kind of at the end of the road here.

 

My husband is working two jobs to pay off our bills. we traveled to Colorado several times to see a doctor whom I love. We saw two out-of -town immunologists, two neurologists, two llmds, a couple of chiropractors, a functional medicine doctor, several psychiatrists, several thrapists, including occupational therapy twice had lumbar puncture, MRI, EEG, tons of bloodwork, evaluations by our school district and a separate developmental specialist.....not to mention all the money that we have spent on medicine and supplements. Like everybody else. Insurance wouldn't pay for IVIG, of course. I have used every essential oil that I can think of, not to mention an oil that I rarely mention. I would do it all again to help her. But I just don't see anything really making a difference. Maybe on top of PANDAS and lyme and babesia and bartonella and viruses and parasites.....she simply is an asperger's kid. She is so very smart. I just wanted her to have an easier time of it. I wanted to have a close relationship with her and not have every day bring more chaos, more insults, not be constantly reigning in over-the top disobedience.

 

She has had some decent time, but not a ton. She is not raging anymore or running away, and that's good. We homeschool, and we have her in several positive activities. We see a new family therapist on Thursday (never done family therapy before).

 

Do you think this is just it? And if so, how do we manage her when she is 18, has no filter, and chooses to go somewhere with someone from the Internet? We can't keep her off the Internet her whole life.

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On top of everything, she has puberty thrown in the mix now. I wasn't a PANS kid, but for me, age 12-16 was rough, even for my mom to deal with me. Especially with the fixations you mentioned, it sounds like maybe the hormones are playing a part?

Maybe as she gets older, that aspect will level out some. I hope so, anyway...

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It sounds like your dd is super smart. She has to be to try to figure out how to get around all of these rules. I don't have an answer for you as to if this is related to any illness, but to me it definitely sounds like she is bored. She is looking for attention and is doing everything she can to test your patience. This is her game. She is always trying to stay one step ahead of you with all of this rebellious behavior. It sounds like all of the obvious pandas/pans behaviors have diminished. Before when she had all the obvious symptoms I am sure she was also seeking your attention but in a different way (rages, etc). I think she is being selfish and doesn't want you focusing any of your attention on any of your other children and their medical needs because that would require your time and attention away from her. My suggestion is maybe try to find something for her to do that would take up a lot of time and keep her out of trouble. I am thinking a sport of some sort where she would be with a coach and/or a team. My son (14 almost 15) loves golf. He spends hours on the golf course playing and practicing. You could get her a phone but only one like a flip phone that does not have access to Internet. Not saying golf is the answer, but maybe basketball or snow skiing. Something that would wear her out physically during the day and keep her busy around many positive influences. I would also give her something like melatonin at night so she can rest comfortably. She needs a good base of friends who she can rely on to do normal teenage activities like going to a movie, or hanging out listening to music. She is headed down a very bad road right now and she needs to know that this is not fun and games. She could be hurt or killed or put her family in danger. I understand you homeschool and so that is limiting on interactions but has she shown any interest in any type of activities at all. Things like gymnastics or cheer or church groups or softball or swim. Anything to motivate her to be her best. I am sorry to interfere, but I sense your desperation and I would be worried sick if I were you.

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I think it's lyme and/or coinfections. I don't think you need all the various testing done. If your LLMD will treat, do it. My son was diagnosed with lyme and a couple coinfections two years ago, after two years of not getting well with PANS treatment, including IVIG twice. So for two years he's been treated and doing well. Last month it was time for bloodwork. We saw his doc two weeks ago. His ehrlichia titers, which have never gone down, had a four fold increase, which indicates active infection, and his C4a went from normal to 6000. In two years of abx, we have not eliminated ehrlichia. This stuff just doesn't go away easily.

 

I don't see Aspergers behaviors in what you've described above. I wouldn't chance betting the behaviors you are seeing are all teen hormones and defiance. My son would call us idiot and stupid and stomp around slamming doors and be angry. He was 5,6,7,8. At 11, he does not do this anymore.

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