Is this a transition or the beginning of trouble?

[Hayley]

As I've noted in some encouraging posts to others recently, DD7 has been doing great. She had HD IVIG in early December and the last couple of weeks, I would say she really hit 100% -- with the exception of a couple of very short (and spread out) "blips". Up until today, the bumps in the road since she was REALLY better, were basically two days, about two weeks apart (most recently this monday) where she just was flooded with anxiety on a monday morning (something she's really not struggling with now) and couldn't get to school. Both times, she turned around within a pretty short period and made it into school by mid-morning. Both times within 24 hours she went on to not only turn it around, but do something new and daring that reaffirmed our confidence that she's getting back to her old self (the first time, she rode the school bus, this last time, she resolved to start back at gymnastics class - something she had given up). I wasn't so worried since these days were few and far between and both came after busy weekends where she didn't get all the sleep she should have.

 

However...today, after a great day, I was out for the evening and got a text from my DH saying that DD was having a rage like we haven't seen in months. She was agitated over her homework, said she couldn't do it, wild eyes, spitting, kicking, calling DH names, saying she's never going to school again. I ended up coming home and by the time I was here, she was calm and I got her to talk to me about what was going on (brain fog, feeling worthless, worried about not gettnig her assignment done...crying and just so so sad). She relaxed a bit and was able to calm down and by bedtime said she felt better (she didn't feel "dumb" anymore and was in better spirits, chatting, sweet, etc., talking about a new class she wants me to sign her up for with her friends).

 

Two of these episodes in a week (and this one more than we've seen in months, the others she was just sad and anxious and felt like she "couldn't" get to school), I'm worried. I know from tracking her immunoglobulin levels that the IVIG is leaving her system and her immunity is dropping (both IgG and IgA were below normal last week, though not as low as they had been at their worst). Strep is rampant around here. Five kids were out of her class this week (not sure if it's strep or something else, but I know a close friend from our neghborhood has it and someone in my DS's class. Wee've all been tested by swab with negative results, but my son has a cold and has been complaining his stomach hurts on and off for a couple of weeks which makes me nervous -- considering getting bloodwork done.

 

So my quesitons are: if she's bouncing back from these little blips, does that mean she's not "tanking" as they say? Or should I start pursuing a steriod burst or something to get her through this? How many close together episodes would you consider trouble (prior to today, the last "rage" type tantrum we saw from her was January 23) after a period of doing great? And could this just be her body adjusting to life without all this foreign immunoglobulin around running the show?

 

I know that the period between three and six months can be crucial. Just not sure if what I'm seeing is part of the progression or a regression to where we were.

 

Any experiences for those who have been there would be most appreciated! Thanks!

[PowPow]

Is she on abx?

[Hayley]

Is she on abx?

 

yes. treatment dose augmentin.

[tpotter]

Is she on abx?

 

yes. treatment dose augmentin.

 

 

I would be looking for other infections, and reasons. I do believe that strep could be part of this, since you said that she's been exposed at school. But, many of us have found that there is more than just one infection, since the immune system is affected. If there are more infections than just strep, as well as possibly other causes, such as mold, metabolic issues, etc, then IVIG and abx alone are not going to do the trick. I would be looking into getting tested for strep (ASO/AntiDNAse B,) viruses, lyme, mycoplasma pneumonia, bartonella, babesia, and mold, as well as checking MTHFR and more.

 

You mention rages, and the first things that come to my mind as contributing to rages include: mycoplasma pneumonia, barotonella and babesia (I saw something recently in Time or Newsweek or something, that there is a large increase in cases of babesia in the Hudson Valley...I don't know if you're from that area, but that's where I think we actually got sick...we no longer live there.) Never-the-less, there are other places that have these illnesses, too.

 

There's tons more info about all of this on the Lyme forum, as members on that one do discuss many issues more related to PANS than just lyme (although Lyme, of course, is a common subject, as many of the kids have that as part of the whole puzzle.)

 

For the record (I know you're new, so you might not have seen my previous posts), my children have: mycoP, strep, lyme, bartonella, babesia, erlichiosis, very high IgG titers to viruses...coming down, though, MTHFR gene mutation, which makes it difficult for them to detox, and who knows what else. We are working very hard to improve the immune system, as well as trying to stay one step ahead of the infections, and are seeing excellent improvement.

[PowPow]

Can you change ( or add) abx?

Maybe zithromax?

I would also consider erp or what to do when my temper flares. Work on it on a good day;)

I think some general coping skills and firm, loving parents help alot.

Edited March 15, 2013 by PowPow

[bigmighty]

And get a throat culture anyway...

[dcmom]

For me, I would be concerned that this is a flare up (doesn't mean it will be a full blown episode).

 

I might get a throat culture, and I would definitely add zithromax and advil dosing (3x day) for five days.

 

I agree with pow pow also, that erp is essential, and really holding the line on behavior is important (in a loving way). It is okay if they have anxiety and/or ocd (that they will have to face and work on) it is not okay if they react to it by directing anger at themselves or others.

 

good luck!

[Hayley]

Thanks all. We did a lot of CBT, used what to do when your brain gets stuck (something she wouldn't even look at until after the IVIG) and she really had overcome all of her "fears" etc. When she's good she is 100% good and there is no opposition, refusal, weird behavior, etc. These little episodes are the exception and are isolated, they resolve within a couple of hours (not tantruming/raging for a couple of hours, but she's overwhelmed with anxiety/"I can't" feekings/negativity for the couple of hours). Last night was the first time there was any rage (and it wasn't anywhere near what she had in the past) and in the prior times where she had a hard time going to school, I found the more I pushed, the more freaked out she got. When I brought her home, let her chill for just a short while (playing in her room or doing school work here), she turned around pretty quickly. This morning she says she's better, but I hear in her voice a little bit of trying too hard that makes me think she's not completely herself. I'm going to call Dr. L this morning and dose with ibuprofin. We just did a strep culture two weeks ago. This girl has NEVER tested positive for strep on a culture so honestly, I feel like I'm beating a dead horse with that one and just torturing her. She had bloodword done last week at NIH including Anti-DNAS so I'm trying to see if that info is back yet too.

Edited March 15, 2013 by Hayley

[michiganpandas]

Did she start back to gymnastics? Sadly I think these kids get too much anxiety with even the sports they love. My daughter had taken a break from her sport, but when she returned the anxiety was too much....she ALWAYS begs to keep going to gymnastics and says she LOVES it...which she does...but, I think whenever her heartrate goes up or she has to do something really hard she gets the anxiety back....and it lingers.

[dcmom]

so- Hayley- yes, I use my judgement as to when to culture. My kids were positive initially for strep (at onset) and then have gotten it once since. I can kinda tell (feverish, etc) when they have it. The first year, I cultured if they looked at me the wrong way but now I go with my gut. My kids seem to be pretty normal in the sense that they get sick usually twice a year- once a cold, the other time the illness du jour, they clear the illnesses like any other kid (quickly) but then pandas may kick in. Other times we have had pandas flare up for no know reason.

 

So- if she has never cultured positive- I probably would not bother.

 

I am over searching for infection

[Hayley]

Did she start back to gymnastics? Sadly I think these kids get too much anxiety with even the sports they love. My daughter had taken a break from her sport, but when she returned the anxiety was too much....she ALWAYS begs to keep going to gymnastics and says she LOVES it...which she does...but, I think whenever her heartrate goes up or she has to do something really hard she gets the anxiety back....and it lingers.

 

She did not yet start gymnastics, but continues to ask for it (I'm trying to find a friend who's schedule coordinates with hers so they can do it together), started a hip hop class two weeks ago and just asked to be signed up for an acting class. The anxiety does NOT seem to be around the dance class (and she definitely gets her heartbeat up in the class) which is Tuesday afternoons. Thanks for the suggestion though. I will keep an eye on it.