Behavor worsening, looking for advice...

[chloe5763]

Hi there!

Our daughter is now 7 and has been on zithromax for about 2 years now, 250 mg 1x/day. This is per Dr. T who we visited back when we first noticed her tic and behavior issues. For most of this time she has been relatively stable but lately is melting down over nothing and having the scary thoughts again. Now, we have just built and moved into a new house and went on a big family vacation...both good things but still things that

changed the "normal" routines which can be stressful. I know we should get bloodwork done again but we had a hard time getting in to see Dr. T as he is very busy....are there any other really good PANDAS Dr.'s in the CT/NY/NJ area (we are in CT). I worry that we may be undertreating her for the PANDAS but I also worry that maybe it's NOT and that she might actually have some other issues that we are not pursuing since we believe it to be caused by the PANDAS. I am torn between thinking that she can't help it when she will completely lose it and start slamming doors, screaming, hitting and being verbally abusive to us and her little sister and thinking that she can control it and is just trying to control us....We try to be consistant and give her one warning about taking away a privilege and if she continues we take it away. But, lately she is losing a lot of things which she hasn't over the past say 6 months....I guess I am just looking for some advice on what the next step should be.....she definitely needs the abx to be OK, we have tried to skip a day here or there and she goes downhill FAST....so does that difinitiely mean PANDAS? I am just so worried that we should be looking for something else but we did 2 rounds of blood work for Dr. T and nothing really jumped out at him. She has always had dark circles under her eyes which get worse from time to time and yesterday after being fine all day, had a huge meltdown just before dinner and then fell asleep for around an hour at 6pm. When she woke up she was fine and appoligized for her behavior.....I took away a major privilege and I guess I am feeling guilty since I just don't know in my heart if she has control over it.......very sad situation all around......

 

Thanks for any suggestions you may have, Kathy

[rowingmom]

I have found during the last couple of years that a gut feeling is something you need to explore, if only to relieve your mind. Go to a LLMD and get some proper testing for lyme/coinfections. Especially for bartonella, if raging/emotional lability is a problem that hasn't been resolved with PANDAS treatment. Bartonella treatment requires higher doses and concentrations of abx. We also saw dark eye circles, they have improved greatly, along with everything else during treatment.

 

It has taken two years of lyme/bartonella treatment, but after weaning off abx on April 15 we have not yet seen a relapse (knocking on wood). In fact we see continual improvement and are at a new low life-time base-line for her PANS symptoms. Her frustration/raging is non-existant and she has had a huge leap in executive function.

 

We tried removing combo abx 6 months into treatment and saw a gradual relapse starting within a couple of weeks. Before lyme/bartonella came on our radar, treatment for strep would resolve her symptoms, but they would return within 2 days of discontinuation.

 

We will continue charting and using lyme/bartonella herbal, methylation, and detox protocols.

[smartyjones]

so sorry to hear you are experiencing an exacerbation after healthy times. unfortunately, i know how heartbreaking that is.

first, i am a firm believer in the infectious root of much. we found multiple infections for my ds -- after having clear strep ties, high titers, active positive strep culture, 100% remission on the right abx -- it just didn't last, so we went looking for other infections, and found plenty.

i am also a firm believer in the need for coping skills and plans.

 

when i read your post, i am reminded one of ds's last exacerbations in fall of 2011. (age 7 at that time) i discussed this much and got much helpful advice from many here, specifically dcmom. perhaps you could try to search my posts or hers from that time. this was not initially onset, nor worst exacerbation. it was after 3 years after onset, we had some good plans in place, but still needed good strategies to add.

 

i wondered if you are holding your daughter to previous expectations. i'm not talking about relaxing expectations, but more of tightening the boundaries of expectations. we found this helpful for my son when in exacerbation -- kind of giving him a small corral which to operate in. in this way, we weren't so frustrated with him breaking rules, etc while we got our ducks in a row. and we still had expectations rather than just giving in even if they weren't the normal expectations.

 

i'm not really explaining it well -- perhaps this analogy can help -- my kids went to montessori preschool. often, montessori is seen as just allowing the kids free choice to do whatever they want. it's not that at all -- it's actually quite restricted. the kids are allowed free will among a set group of choices. traditional school is more like reigning in kids to rules in a broad environment, montessori is allowing choices in a restricted environment.

 

perhaps if you think she can't control it - try to give her something to control - such as going to the basement and yelling and throwing things after the one warning, rather than the one warning to stop. maybe you could devise some things that make sense for you that would make you not feel so bad and questioning things and she would not be digging herself into further holes and getting into worse patterns.

 

we also added a problem solving model at this time that when he would get upset, we would suggest problem solving. we then worked through the 6 steps with/for him. it was actually beautifully based on baseball (good psychs suggestion). his only job was to 'stay at the plate' - remain wtih us for it. most of the time, for him, he wasn't freaking out for no reason -- there was a reason, it just wasn't apparent to anyone but him. when we got to it, 99% of the time, it was reasonable -- it was his reaction that wasn't. when we found solutions, he could usually roll with it.

 

good luck.

[airial95]

smartyjones mentions something that has worked well for us with our PANDAS dd. She is also 7, and has emotional meltdowns at the drop of a hat. Rather than trying to "punish" her for feelings that she can't really control (and like you, we question all the time if she can or not!). We give her a place to channel those emotions. It's okay for her to cry and throw a fit, and yell and scream, and even call me and her father names (no swearing) - but she has to do it in her room alone. This way we are showing her that we are understanding of her feelings, realize that she may not be able to control them, but also teaching her that it's not appropriate to just let loose anywhere. It's worked okay for us - although, she still has her moments when she's in a flare.

 

As for Dr. options, Dr. B is in Stamford, he's considered one of the leading guys, and we fly up from FL to see him for my son. He will test for Lyme and co-infections if you feel that is a problem. However, I will point out that my son has never had anything pop up on blood work - never an elevated strep titer even with scores of positive throat cultures. So labs may not give you a clear picture.

 

If she responds to abx, I would say that's a strong indicator of a PANDAS/PANS type reaction. Have you gotten her checked for a new strep infection at the pediatricians? My son often got strep while on a whole host of abx, so it is possible.

 

If you aren't already, you may also want to try giving her Motrin/ibuprofen regularly for a short period of time, it's been known to help some kids. It's a lifesaver in our house during really bad times.

[nicklemama]

New or emerging behaviors are telling behaviors. Maybe time for something different abx wise. Maybe she's got an underlying infection that should be explored. Methylation/MTHFR mutations, Lyme and/or coinfections?

[T_Anna]

Some other drs

Dr.Leckman in New Haven, Yale

[LNN]

I have two kids. One was what we thought was "classic" Pandas. Turns out that he had chronic lyme first, then strep hit and that was the event we based treatment on. But regardless of how aggressive we were (pex, IVIG), he couldn't sustain remission. That's how we finally found the lyme, 3 years after the bite. 2 yrs with an LLMD has brought him back to baseline.

 

I have a second child, a daughter, who we labeled as kinda sorta maybe Pandas. Her Cunningham lab results paint a very clear Pandas picture but she's never had strep. Her lyme test was indeterminate. We treated for lyme and her GI issues resolved, but we'd still see occasional behavior explosions for no apparent reason and we worried that she'd either learned behaviors from her brother or she was maybe bipolar. Daily zith helped for a long time until it didn't. What we found with her is that maybe she had lyme and an autoimmune response to it. But her lasting issue has been a problem with methylation. Methylation is the process your body goes through to take nutrition (vitamins, minerals, amino acids from foods) and process it into the ingredients for energy and neurotransmitters (and many other things not involving behavioral issues). She has genetic mutations that get in the way of her ability to properly, evenly regulate serotonin and dopamine. By limiting foods high in certain things, by adding supplements that work with her body or do things her body can't do for itself, we've been able to get rid of these explosive, manic, "cybil-like" outbursts. She is blissfully "normal" even through allergy season (which once produced great bursts of drama and lability) and has been off antibiotics for 2+ months.

 

So my recommendation is two-fold - consult an LLMD (lyme literate MD) and explore the topic of methylation. Both may bring relief. There's a great autism doctor in Wilton CT (Dr O) who can help with the methylation piece (she knows a bit about lyme). there's a great osteopath LLMD in the Hartford area (Dr M) (who knows a bit about methylation). I will send you their contact info in a private message. In the upper right corner of the top of the forum, you'll see your screen name with a drop-down arrow next to it. Pull down the arrow and you'll be able to view your messages.

 

In my experience, my kids will test limits, they are not angels, but the majority of the time, when they are evil, it's because of either infection or methylation, not a "choice". When they're healthy, they show, at their core, that they are genuinely nice people and not diabolically manipulative.

[pr40]

two more things to add.

First, circles around eyes. Sometimes they are a sign of an allergy or sensitivity to food. When we stopped dairy, ds's circles went away. His aggressiveness lessened too. We haven't heard the word "kill" come out of his mouth, for instance.

Second, in regards to your other question, could this be something else like a "real" psychiatric problem? Theoretically, it could. But if you child was not premature, if it was not traumatized psychologically or physically, if it was not poorly nourished, if you were not terribly sick during pregnancy, if you don't have serious mental problems in our families (both sides) -- in other words, if you are like most middle class Americans -- the chances of a "real" psychological disturbance is minimal.

I am not saying this as an expert, of course, but it seems to me that what you are describing cannot BUT be PANDAS/PANS, lyme induced or not.

[chloe5763]

Thanks so much for the responses....it's been a whirlwind week to say the least! There is so much to think about, it's a full time research job it seems to try and get our kiddos some relief! I tried to get an appointment with Dr M but they are not taking new patients so we are on the wait list. Dr O is a bit of a trek for us but I will try to get an appointment there...We adopted her at 5 months old from Guatemala so we don't have any family history available and she has been drinking soy milk since she was an infant because cow's milk would cause eczema. Things have been relatively calmer lately since we're in the new house which is in a super kid neighborhood so the carrot of being able to go outside and play has been very helpful in keeping her behavior in check. So, we continue and hopefully Dr. O can make some suggestions for us.....It's so tough because when she's good....she's AMAZING and when she rages she seems tortured.....so sad and scary!!!