How do you handle the behavior?

[MJMama]

Hi everyone!

 

Our DD1 is 5 and has gotten what Dr. T in New Jersey thinks is a "text book" case of PANDAS. I

think she had it 2 years ago at 3 but it was only the facial tic at the time and we just thought

she needed glasses (which she did). Then it went away for 2 years only to come back with a

vengeance in June of this year. She again has the facial tic, started having day time accidents

and the behavior, OMG! The behavior is so out of control.....we have a younger daughter who is

3 that I am constantly worried about. DD1 pushes her, hits her and is generally unfriendly to

her but of course as a 3 year old DD2 is always right in her face! What a terrific combination!

 

We try so hard to not take the rages personally (yesterday hubby was called "you ugly man" and

the other week I was "you ugly old girl"...we're a match made in heaven! LOL!), but it's so

hard to stay compassionate when she is just so angry and out of control most of the time. I've

started letting things go like brushing her teeth at night just so that she doesn't rage. She

seems to be tired all the time and the more tired she gets the worse her symptoms become. I don't

feel good about letting her get away with things that used to be part of our normal routine

and that are important but it's just horrible if we ask her to go to the bathroom or brush her teeth

or really anything that she doesn't want to do at the moment. I guess I'm curious how others

deal with discipline with these kiddos and also if others have kids who are super tired all the

time. Our DD routinely falls asleep on the way home from daycare at 4 or 5 pm...she goes to

bed at 8 and sleeps through to 7, no nap. After she has one of her rages she will very often

say I'm so tired and she'll say she's sorry and go lay down for a while. It's just heartbreaking

to see what this does to the whole family.....

 

Any suggestions would be greatly appreciated! She is currently starting her second 10 days of

Augmentin (she did 10 days of Azith and 10 days of Amox previous weeks), Ibuprofen 2x per day and

a probiotic 1 to 2x per day....

 

Thanks and hang in there everyone!!!

[airial95]

We have a 3 year old with PANDAS, and we suspect his 5 year old sister has the same. We strive for consistency. We made up a visual schedule with all of his "tasks" for both the morning and evening time (wake up, go potty, pick out clothes...) it seems a little basic, but it really helped with the defiance as far as not wanted to do what he's told when. He can look at his chart and do it himself. It's kept him focused.

 

As for the violent outbursts - that was always a tough one, we tried everything. Our challenge was we didn't want to send a message to him or his sister that hitting/biting/kicking/bad language was okay just because he was sick. We would put him in his room with one of us until the violence passed (not a wonderful way to spend an evening!!)

 

Then someone (I think it was on this forum, not sure) recommended we try a sensory swing. It's an OT tool used for kids with autism and sensory issues. It's like a lycra hammock that hangs from a single hook in the cieling. They can get it, and it sort of cocoons them. We bought one ($80 on ebay) and it took my husband over 3 months to finally hang it up. I could've killed him. The first time my son raged after the installation, we put him in - the calming effect was INSTANT!!! He stopped screaming, crying and flailing the second I sent the hammock off my lap after putting him in. (We could've had peace 3 months sooner if my hubby would've just gotten the darn thing up when we bought it!!)

 

We still use it all the time when he's having a fit or hitting. We don't call it "time out" although, when he's in a PANDAS episode, we treat it like one. If he's raging and he hits - he has to go to his "special chair" to calm down. Works like a charm, and he's gone to it on occasion when he's just feeling "fuzzy" (his word) before rages even start.

 

Your daughter is probably still small enough that something like that would work. It has been our absolute miracle!!

 

Then, there's also motrin - if you haven't already, try giving her a standard dose of motrin for her age. In a nutshell, it reduceses the inflammation which slows down the immune response - which leads to less behavior issues. We don't use motrin daily, but if we start to see a ramp up in OCD or tics, we usually give him a dose - which has prevented a lot of the worst moments.

 

Hope this helps - and welcome to the forums. It's a great place full of very supportive people with great information!!

[smartyjones]

i have found much help from the book,The Explosive Child. i see the value not so much as the book may really intend, but more for me, in tools to deal with an explosion or inappropriate behavior and tools to help keep a situatiion from escalating.

 

what i mean by that, is not really having the expectation that the techniques will have a change in your childs behavior -- although we have had some success in discussing things after the issue or inappropriateness -- but that's not really even the pandas issue -- ds does know it's inappropirate when discussed later -- he just doesn't have the correct control at the time. there are tools to help with this discussion -- i think it's always good to get extra tools.

 

for me, the value is on the parent having tools to manage their own reaction to the behavior and not get dragged into it. that sounds a little like i'm obsolving the child and i don't mean that, it's just that the behavior is so out of control anyway. . .

 

you can check out some info if you do a google, but the basic is repeating what she has said without adding additional comments. .. "it's time to brush teeth"; her - "i'm not brushing my teeth"; you - "you're not brushing your teeth?!" stop and do not add any commentary or anything other than what she has said.

 

probably not during the the worst of the worst, but during some impassable times, it helped ds realize he was unreasonable and gave him a way to change his mind and ideas where arguing, explaining, etc only served to solidify his obstinance.

 

good luck!

[dcmom]

I just posted a response to this same issue under "Lost my temper".

 

We are dealing with the aftermath of major onset of panic/ ocd. Due to our accomodations and letting things slide- we are now left with lots of frustrating behaviors.

 

It's basically back to the terrible twos, with a "timeout" and reward program- but it IS working.

 

Look at my other post for a little more details.

[MJMama]

Thanks for the input! I actually have the accountable kids chart things that we used to use

when she was younger that say all of the tasks that need to be done, I should drag that back out.

It just doesn't feel right to let everything slide plus our 3 year old is now trying to get away

with the same stuff so I guess even though it will most likely end up in a rage we have to decide

on what the basics are and stick with them.

 

Every once in a while she has a good day or night and I get so psyched thinking the she's finally

getting better but then it's right back to square one. She's starting kindergarten in less than

2 weeks and I so hope we can get the tics under control.

 

I really don't see a lot of folks mention severe fatigue.....last night we had a baby sitter

who she loves and while the sitter was putting our younger daughter to sleep (an hour before DD1's

normal bedtime) DD1 said she was going to bed, didn't want stories (uncharacteristic) and slept

through the night....I'm afraid kindy is going to exhaust her!

 

We have been doing the Advil but only 2x per day during the week as she's in daycare. On the

weekend we give it to her 3x but don't really see much of a difference. If I really saw a difference

I'd drive over to daycare during my lunchtime and give her a dose but I don't know if it really helps.

 

Thanks again for your input, hopefully we'll all get our kiddos well soon!

[trggirl]

My daughter has the fatigue. She is 10yo now but she has never been able to handle the schedules that other children keep. She is now at the age where the girls have sleepovers and she just can't handle it so we have to decline those invitations or just go to the party until bedtime. When she was younger, I worked hard to make sure she was able to rest and nap. She went downhill if we did not do this. We have learned not to push the schedule too hard.

[MJMama]

Trggirl, yes we find that everything, the tics, the behavior the emotional rollercoaster and all so

much worse when she's tired.....it's just that sleep doesn't seem to do it for her....even with

a nap she just can't handle the evenings....Sigh

[airial95]

My son has the fatigue as well. He sleeps from 7:30 PM to around 7:00 AM every night, and will nap over 4 hours in the afternoon if we let him. We've found that (as counterintuitive as it may be) letting him sleep TOO much has kept the cycle going. We keep the bedtimes the same, but for naptime, we try not to let him go past 2 1/2 - 3 hours. I've found that by giving him an activity to look forward to after nap (going swimming, to the park, etc...) he responds better when we try to wake him up from his nap.

 

He goes down for nap at 12:30 - left on his own, he would sleep well past 5:00. Most would love for their 3-4 year olds to still nap like that, but in our case I think it feeds the cycle.

 

As for the reward charts - we use them as well, for both our 3 year old PANDAS son and our 5 year old daughter. On our 5 year old's chart it's a mix of chores (cleaning the toy room, her room, dusting) as well as behavior incentives (no backtalk, eating all her supper - she's a notoriously picky eater). Our son's has some chores, because he like to feel like the big kid too (putting dirty clothes in the hamper, picking up toys), but most are behavioral - no hurting, no potty words, good report from teachers. At the bottom of the chart, we have a post-it note with their rewards. 50 stars - Happy Nappers (it's what they wanted!) 100 stars - outing to the bouncy place for my daughter/Leapster for the 3 yr old. If my 5 year old gets 200 stars - she'll get a Nintendo DS.

 

It's worked for both my 5 and 3 year old, so you might be able to use it with your younger one to discourage him picking up the bad habits.

[Dedee]

Just to throw in that my daughter had horrible fatigue before we started the antibiotics. She constantly complained of physical things. She always said she was tired. Afternoon and evenings she had headaches. Blurred and double vision several times a week. She was pale. People who knew us realized there was something physically wrong. The biggest thing was how she stopped playing so much because she didn't have the energy. Since the antibiotics we have seen most of that gradually improve. We got some regression in fatigue with the IVIG but I think that is to be expected. Important to rember that PANDAS is not just neurologic, there is a physiologic component that started this whole ball rolling and that is the real source. I realize you all know that, just have to remind myself of that every so often to put my daughter's behavior into perspective.

 

Dedee

[adkmom]

MJMama,

 

I haven't been on the forum much lately but came across your post and can totally relate to what you're saying. Our ds5 (4 when we started on this journey) was diagnosed with PANDAS first but thankfully, tested for Lyme which came back clearly positive. And he'd had it for over a year. I mention this because he had lots of fatigue as well. Was your daughter tested for Lyme? Also, when the antibiotics cleared up some symptoms, the fatigue remained and our Pandas doc said that isn't a PANDAS symptom, so he couldn't figure out what was causing it...then the Lyme results came back and we had our answer.

 

Also, my son had rage/aggression and I can relate with calling you names This weekend, he kept calling me "stupid" and...I hate to share this but..."i'll break your neck in half mom!" A shocking statment to come out of his mouth...all this anger over nothing really, something I refused to give him BUT the entire rest of the day he was an angel and 10 minutes after the nasty statement he was smiling and hugging me like nothing happened. It truly is a Jekyl and Hyde moment. Luckily, that doesn't happne too frequently anymore. Discipline for us...is going to his room to calm down, when I can tell its a PANDAS episode.

 

Hope that helps. Also, the anger started subsiding once we put him on an antibiotic to treat Bartonella, a co=infection. It's so confusing..so many of the Pandas and Lyme symptoms are similar!

 

 

Darlene

Edited August 22, 2011 by adkmom

[MJMama]

Hi everyone!

 

DD was tested for Lyme and it came back negative and she also tested negative for any allergies. Sometimes it seems like the good days are

harder on me than the bad ones...it's just heartbreaking to see her "back to normal" for a day and then BLAMMO! She's doing the tic and raging

over the way I put a plate down or moved something.....I write everything down to see if I can find a correlation between the timing of her medicine, what

she ate, what we did. Every time she has a good day I end up allowing myself to think that she's getting better but then it goes right back to square one.

I have to pick up her 3rd 10 rx of Augmentin today. Have you folks all used the generic for Augmentin? I am grasping at straws thinking that maybe if

I ask for the brand name it will help more....she starts kindy on Monday so I guess this is how she's going to start....We were so hoping to get at

least the tic cleared up before she started school so that kids won't make fun of her...Sigh..This is our last refil from Dr. T's script, I'm curious

what the next step is if this last one doesn't work...

 

Take Care!! Kathy

[vermontmoms]

Please don't worry about her tics in kindergarten. Just talk with the teacher and the nurse so they kmow whats going on ahead of time.

 

My son ticced like a champ in kindy and 1st and no one said anything. The other kids didn't notice at all. My twins are in 2nd now and my one still has significant tics. He has almost finished 1 week and so far so good... The teacher is aware of his tics and why they happen. We also gave her strategies for coping with his tics. We will see how this yr goes as we are at a new school so it is a major learning curve for the school. That said our kindy and first grd teachers were awesome!!!

 

Good luck!

Jen