Trying to Understand PANDAS flares

[Mommy2MCL]

It has been a very short time that I have been in the PANDAS word. DD's tics started overnight last night 8 weeks after a strep infection. The main symptoms she presented with are motor & vocal tics, separation anxiety, excessive worrying, anxiety, compulsions, and emotional liability. We luckily have only had 3-4 main flares since April but each one was increasingly disturbing. After research her symptoms sounded so much like PANDAS. We were able to see a local PANDAS Dr and he agreed with our thoughts. On Nov. 7 we began Augmentin and have been on it since. While the wax and wane of the symptoms is unnerving in the long run she is 90% better.

 

The main reason for my question is to ask about others who have experienced the emotional liability. What i have noticed is that it is triggered by the same things. Her main triggers are lack of friends, missing me, wanting me to come eat with her at school, no one loves her. and she is consumed in tears and sadness. These episodes lasted for 4-5 days where I kept her home because there was no way to calm her down to get her to school to 30 minutes bf bed.

 

So I was just thinking that it's been several days since we have had an episode. This morning at breakfast the tears begin. She wants me to eat lunch with her (Dad went yesterday bc he was off) her stomach hurts. I immediately gave her Motrin. 10 minutes and the crying had stopped and she was back to her old self... With past flares we have talked about how the Motrin helps so she knows why it is given.

 

So my question is do your children have the same triggers? I am trying to see correlate if her flares will all relate back to the same thing. Or if she was just being an emotional 8 year old this morning

 

Could this have been a very short flare? And bc she got the Motrin is was psychological and she was able to put herself back together?

 

Is your child's emotional liability always triggered by the same things?

 

Sorry this is so long... Nothing in PANDAS is simple to explain :-)

Edited December 5, 2013 by Mommy2MCL

[qannie47]

Ahhh yes...the wonderful world of Pandas....and it's wonderful waxing/waning. Enough to drive one to drink...ok..guilty. All kidding aside, what you are experiencing is so typical to Pandas. Is it just wax/waning? YES Could this be a short flare? YES Could this be another new flare? YES Do the same things seem to effect mood lability? YES.

 

I am truly not trying to be sarcastic...this is just the maddening thing about this whole disorder. It is so nebulous. Finding ones way thru these murkey waters is not easy.

 

Over time, you WILL start to be more acqainted with your childs own unique pattern.

 

My ds for example usually on a dime begins a flare overnight. I have been able to actually recall time of day..ugh. I have noticed that each flare 4 to date...has gotten a little bigger, more pronounced by way of severity. The worst of his flare lasts about 3-4 weeks. Then I start to see the wax/wane. For my ds, the wax/wane portion lasted about 4 weeks, one step forward 2 steps back, until he fully healed. This gives the linear time from start to finish for this episode about 8 weeks. Right now he is absolutely perfect. (GOD I hope I don't jinx myself).

 

When I analyze all 4 episode, I have found this pattern that I share above. It may not be the same for your child, and the next episode may bring a whole new set of dynamics to the party for my little guy . But think back and see if you can find some pattern that may lend some degree of confidence to the whole situation...

 

At one point, I started keeping a journal to keep things straight. During these stressful times, you will be amazed at what you have forgotten or mis-remembered.

 

Hope this was helpful. I think all of us can relate to how you are feeling right now,

 

Breath

[JoyBop]

I can relate to everything you are saying. My 8 year old will have moments and hours even on a good day where he is having raging fits of anger and crying fits. The way I look at it, it's not the "event" that triggers these feelings, it's the obsessive thoughts and emotional lability that is causing it. What I mean is, one a good day, none of these things would bother him, so the way I see it, the event is not the trigger, the PANDAS is. I don't really understand it myself, but I have to come realize for him that these episodes are a clear symptom for him and will come and go as they please and have little to do with reality.

 

My 4yo dd is slightly different. She is 100% most of the time but she will have sudden burst as well. They are almost like mini exorcist moments where her facial expression and demeanor changes all together. They are random as well, meaning she will react at moments that would never normally be a problem. But she. She was in the throws of chronic pandas attacks, I can tell you she flared anytime things didn't go her way. If she didn't get her first choice, if she had to wait a turn, if she was asked to do something, if someone didn't respond the way she wanted, she would to ballistic. But now that she is more in remission than not, they are random again.

 

So I suppose now that I am putting it all out there, they both follow a similar pattern. When in an exacerbation they were especially emotionally Labile any moment they didn't get ex toy what they want. They are not normally spoiled brats but they both come off like tantruming two year olds at these times. When they are more in remission they still have a chronic baseline for moments of fits but they seem to be break through symptoms that occur out of the blue, last anywhere from 10-50 minutes, then disappear as though they never happened.

 

I have found that Motrin helps tremendously. But since we found DS is anemic I'm worried that constant Motrin use for 6 months may have caused a bleed. Going for gi work up this month.

Edited December 5, 2013 by joybop

[pr40]

the same here with dd10. i am not sure if anything can be done. therapy perhaps. we hope to see a psychiatrist in a near future.

good that motrin helps. we use it, too, and it helps too. Also, you may want to try CALM, a megnesium supplement. it also works for our kids.

I think, this is something she will have to learn to live with.

Edited December 5, 2013 by pr40

[qannie47]

well said Joybop

[LNN]

I'm going to toss in a little tough love here. The dramatic need for reassurances could be anxiety or some sort of OCD. OCD has 5 general categories: Checking, Counting/Symmetry, Contamination fears, Intrusive thoughts and hoarding (tho hoarding may come from a different part of the brain and it may be a separate issue from OCD - there's some debate). In young kids, the checking often comes from a fear that their perceptions of the world could be wrong. Do I really have friends? I'd better ask mom and check. Does my mom really love me? I'd better ask her and check. I know she just told me. But maybe she was lying the first time. Or maybe she changed her mind in the past 30 seconds. I'd better check and ask again.

 

The OCD fear can be so overwhelming and it terrifies kids who don't recognize it's the OCD voice creating an illusion, that it's not real. So no, what you're seeing is not a normal 8 yr old response (aside from 8 yr olds who've had trauma, lost a parent, etc). Our instinct is to immediately rush in, smother them with kisses and make certain they are certain of our endless love. It's a normal response, but not necessarily the best response. By continually feeding the OCD monster who's kidnapped your daughter, you're paying ransom and unwittingly making the OCD stronger. "Hey, this could be a legitimate fear" your daughter thinks. My mom is going out of her way to tell me she loves me. Maybe she's trying to hide something, maybe she doesn't really love me". OCD will twist reality that way. Plus, by twisting things, OCD gets more and more of both your attention and your daughter's - exactly what it wants. You reward the questions when you respond to them.

 

So as much as it hurts, you may want to introduce your daughter to the concepts discussed in "What to Do When Your Brain Gets Stuck" and you may want to read "Talking back to OCD" for yourself for ideas on how to be a bad-a** coach to help her fight back. You cannot beat OCD. It has to come from within your daughter. Your role has to be the coach, teaching her to say no to the worry thoughts.

 

When my daughter went through this, I'd tell her "Look, this is the worry fairy playing a trick on you. I love you to the moon and back. Nothing will ever change that. But I'm only going to tell you this once. I am NOT going to play games with the worry fairy and give her all of my attention. The next time she whispers to you that I don't love you, you need to tell her it's a lie and you're on to her little games. You have what it takes to not be bullied by that fairy. You are strong brave and I believe in you." She'd then nod, give me a hug and ask "So I forget - do you love me?" At which point I'd let out an "Arrrggghhh!" and say "sorry, I don't talk to fairies". I'd make it fun if I could but I had to stand firm. She needed to learn to fight back when the thoughts came.

 

When the fear then morphed into "I have no friends" I'd say, "well, sounds like you've decided to let the fairy be your only friend. I'll call Emily and Abbi and Morgan and Camdyn and Sklyer and tell them you're sorry but they can't be your friends anymore because you've decided to spend all your time with the worry fairy instead." She'd get mad at me but I made my point.

 

I know you just want to put a quick end to the fears but the books I mentioned might give you some tools to help in more effective ways.

Edited December 5, 2013 by llm

[airial95]

My 7 yo dd has many of the same symptoms you have described - down to the having no friends, no one loves her, separation anxiety, etc...

 

We give her motrin every morning during a flare. Period. It helps sustain her. She also has a standing order at school that she can take one after lunch if she (or the teacher) feels she needs it. Do I worry about long term Motrin use? Yes and no, our ped has instructed us that as long as we don't exceed the daily recommended dosage, we should be fine. Typically, her morning dose is all she gets. It helps manage to get her out the door and to school.

 

We are working with a behavior therapist on CBT for the intrusive thoughts. It is very helpful. It has given both of us a constructive vocabulary to help her work through these anxieties.

[airial95]

LLM is exactly right - those are the techniques we use with our therapist. It is the hardest thing in the world to not be able to tell your child you love them because they have already "used up" all of their turns for the day!!!

 

We also use humor. After my daughter has used up all of her "turns" we often try to be light hearted in our answers (we are a very sarcastic family - so it comes naturally!) One of the most surprisingly effective responses of mine when she asks if I love her? - "Oh man, you're on to me. I'll admit it - the only reason I had you is so I could play with toys again! (or eat Halloween candy, go see Santa Claus, or some other kid centric activity relevant at the time).

[dut]

Hello.

 

 

For my kids each flare can be different and have different things that can set them off and so as others have said, it's the PANDAS and not the situation doing the triggering, I believe.

 

Your dd may be having separation anxiety. We see a lot of it with our kids' flares. Our dd often doesn't want to separate from home and can have school refusal. We see a therapist and got the same advice as offered by LLM and airial. You've got to be tough. I have had our dd on her knees sobbing and begging me to keep her home. At first I did but it just made it worse.

 

We were advised to offer something that would allow her to calm down without avoiding her anxiety triggering situation. Our therapist explained it as not backing off from the anxiety but rather getting her out of the fight/flight mode and 'thinking' again.

 

E.g. for school, if she were totally overwhelmed, I could offer to let her go in 1/2 hour late. Not letting the PANDAS make the decision but recognizing that her anxiety is so high, that I, as the parent, am giving her some room to organize herself and then get on with what needs to be done.

 

It has really helped. That small window where she can decompress and knowing she's got to plan on how to deal with her anxiety has been what's kept us moving forward instead of getting completely stuck during a number of flares.

 

Good luck...

 

 

 

 

 

[Mommy2MCL]

Thank you ladies for sharing... It is also so much to understand and learn about. IT is so easy to want get frustrated because they can be so irrational... I appreciate you telling me your stories and it helps put things into perspective...