Dealing with the explosions in behavior...

[dcmom]

Just to agree with pow pow, ERP is great- but IMHO it is NOTHING without appropriate and aggressive medical treatment for pandas.

[thenmama]

DCmom and Powpow-- thanks for pointing that out. You're right, it's not what I intended by trigger avoidance and I'm really glad you mentioned it. We also went down the "dealing with OCD the wrong way" road--prior to dd being dx'd with OCD, which was prior to her being dx'd with PANDAS. It cost us terribly, too. Dd's OCD grew worse and worse--it was fed by the wrong approaches (most of which were suggested by her docs and therapists then). It got so out of control she could not leave the house and even then was gripped by it and unable to function and was melting down or raging, or sobbing uncontrollably and very depressed, and we feared we wouldn't be able to keep her in the home anymore. I learned about CBT then, found a good therapist and left the old one, and started ERP/CBT with her. She couldn't do it at first then one day she could (didn't realize it at the time but looking back at records she'd had a couple of rounds of abx right before she started being able to participate in the ERP). Once she was able, it was the best thing we could have done-- for her and the rest of us. She was OCD free for about a year. Then she got sick, everything came back 100mph and her state in exacerbation is too far gone to do ERP so we had months of living in that nightmare state. But, then we finally learned she had PANDAS and once she'd had IVIG she was able to use the ERP to quickly knock out the remaining bits of OCD. So I agree with you about giving in to OCD and that ERP/CBT is nothing without medical treatment. When my kids are flaring it's so intense they can't even think about ERP. But when their PANDAS is treated it is an excellent tool for undoing the OCD patterns and behaviors they learned in their exacerbated state.

 

I meant for the trigger avoidance and advanced planning to speak to behavior issues that were not OCD-related but I can see from re-reading my post that wasn't clear. When I first started to reply I thought the OP was referring to non-OCD behavioral/situational issues-- like problems that arise trying to get out of the house. For those things I find it helpful to troubleshoot the situation and try to find ways to avoid further issues w/ them in the future. For example: child is disorganized and can never remember where he left his shoes and half the time they've been left in two different locations. Whenever it's time to go, he can't find his shoes, everyone is fussing at him because they're going to be late, he gets upset, etc. Meltdown occurs. Then I'd look at the situation, realize he needed some support to help him with organization, and maybe we'd come up with some sort of shoe storage system. Or maybe a poky or daydreamy child takes too long to eat, get dressed and ready before getting out in the mornings, which leads to being hurried and there's tension with her parents who can't be late for work, and this morning situation often ends in tears and tantrums... I'd think it was time to revisit the morning routine and try to adapt it in a way that is better designed for her to be successful - say get up a half hour earlier, select and lay out clothing in advance... That sort of thing-- and assuming that the shoes and morning routine issues were just situational and not the result of the child's OCD.

 

But then while posting I realized that with my son, sometimes even the things others would not necessarily recognize as OCD are, in fact, OCD-driven. And he's got underlying infections and immune issues so he doesn't maintain the relief for any duration like his sister does (hopefully that will change with his upcoming treatments). So we'll be going along like all is great and then suddenly he'll be melting down and screaming at the older women in the sewing shop because the cute little Westie dog that's always there stayed home with its sick owner that day, and he's come to the shop specifically to see that dog. And the next thing I know the older women, who are unfortunately that stereotypical busybody sort of older women who think mothers nowadays are totally incompetent because they don't do things the way they did them, decide to get themselves involved by speaking directly to him as if he's their child and needs to be put in his place. So now I'm scooping up a screaming, nearly purple seven-year-old who's calling old women liars while the capillaries in his face are bursting out petechiae with my one arm and I'm carrying dd's sewing machine in the other arm, while telling the little old women to back the bleep off my kid while I try to push myself, and him and the machine out the door without dropping either of them. At this point dd comes out from her class to (be mortified and) join us and without asking grabs my phone and follows behind us, documenting the scene on video for our PANDAS doc. I can only imagine how this looked to the other people in the mall parking lot. Somehow we get all the way home-- even though ds, still raging, insists that the earth is spinning the wrong way and has shifted the location of our house. About an hour later, when he's finally calm, I breathe, curse, and state the obvious: it's back. Familiar?

 

The reason I mention this is that our PANDAS doc saw the video and noted that he was in fight or flight for an extraordinarily long time (we always seem to impress the wrong people--the PANDAS doc, allergist, knee surgeon...), and confirmed that in situations like this, these kids have no control. Unless we address the medical issue that's causing it, we can't expect them to handle it in a way they're not physically capable of doing. We wouldn't expect a diabetic whose condition is not well controlled to be able to control it with behavioral techniques or because we've threatened to take away their video games... kwim?

 

That's why I brought up the PANDAS treatment, because for us the meltdowns really are a non-issue when the kids are not in exacerbation. When my kids meltdown, like really meltdown and especially if it goes on for any duration-- that's the PANDAS in action and we need to jump on it medically. Once the treatment is effective, we may still have to address some lingering issues, but the difference is that b/c the PANDAS is being treated successfully- we CAN properly address them.

 

Not that I won't still have the everyday issues to problem solve. I'll still need to re-conceptualize my back door shoe bins and closets so we'll eventually be able to leave the house with two shoes and both socks on, and maybe even a pair of underwear beneath the outfit, which would, ideally, be worn right-side-out

 

Anyway, thanks again for mentioning that issue, and prompting me to clarify. Much appreciated.

Edited February 15, 2012 by thenmama

[NVAmom]

Forgive me if I say something someone already posted. I didn't read them all. This is what has helped us.

 

1) Ibupfroen at the first sight of a meltdown. Yes, I know it has dangers and try to use it sparingly but an out of control, impulsive child can be a danger to themself.

 

2)We gave up on the typical American childhood. I know that sounds awful but it decreased our stress tremendously. When making plans with family or friends they know we might have to cancel at the last minute without warning or just part of the family will be able to go. Extracurricular activities were stopped. We've found that insisting a raging PANDAS child go somewhere was always setting us up for failure.

 

3) I agree our dd and ds do not have much control over it which means as their mom I have to control the situation. Which has meant asking another patent to pick up and drop off the child that can go do activities and I'll stay home with the raging one. Or if I have to go, I've gotten a babysitter before and had ds use his allowance to pay for it. I know it's harsh and not sure it's right but does let him no he can't control the house.

 

Hope that helps:)

[vermontmoms]

If they are actually meltdowns, which this sounds like, because a tantrum doesn't usually last terribly long, and you can distract a child having a tantrum, have you checked for mycoplasma pneumonia? It can cause these rages. I know this doesn't answer your question, but I thought I would throw this out.

 

You are correct, these are not tantrums they are meltdowns. Yes, we had his myco checked last spring by Dr. L and it was high/elevated for myco. I don't know how long he has had it or that it could cause rages. Thanks for the heads up!

[vermontmoms]

yes -- i 100% believe your child has neurological/biochemical issues -- mine is quite 'classic' pandas --

 

Why do you think my child is different from your PANDAS kiddo? I guess what I am asking is, what is "classic pandas"? My son had all the CAM K testing done and has has numerous strep infections and scarlett fever. His CAM K was in the high range for PANDAS and his anti-neuronal value was more than 2x higher than the norm on anti-dopamine 1. My son had his first strep infection of April of 07 and his tics and OCD started two weeks later. We never did a follow-up test to see if the antibiotics got rid the initial infection, which we should have... So how does my son's case differ then "classic PANDAS?" Personally, I was told by Kathy Alvarez that kids with extremely high values on the anti-neuronal value for anti-dopamine 1, have a high probabilty for tics.

 

Please explain as I am still learning and trying to wrap my head around this whole PANDAS dx.

Thanks!

Jen

[vermontmoms]

I just want to second everything that DCMom said. The best thing we can do for our families is to seek some sort of CBT or ERP therapy. I am speaking mostly in terms of those who have children with raging and defiance issues. I have three PANS children, but it's my daughter who rages and has ODD that has absolutely torn our family apart. The best thing we did was to go to USF for their CBT program last summer. We are going back for a refresher during spring break and also to take my son (who didn't go last year). It is so helpful for the entire family and they really understand PANDAS and children. Even if you can't make a trip to Florida, find a program near by and give it a try. JMHO.

 

Dedee

 

Can either one of you (Dedee/DCMom) send me the contact information for this USF center? We are planning a trip to FL in June and would love to see if we can get in to their clinic.

Thanks!

Jen

[vermontmoms]

Is your child's PANDAS well controlled or is there a chance he's either flaring or has some underlying infections? My ds was in a cycle of improving dramatically, then backsliding and exploding again. Further investigation revealed some chronic infection issues and some marked immune deficiencies. He can't maintain the gains because he can't clear the infections. We're en route to IVIG and then T&A (he's got very large tonsils and with all of his immune deficiencies his tonsils are like hotels for bacteria). His explosions go away completely when his PANDAS treatment is working. When he backslides, that's usually our first sign. His explosions are OCD-related (he can't handle things going wrong or being different than he expects or plans, mistakes are terrible, computer errors, etc. all set him off). My ds's biggest OCD fear is actually talking about his OCD & fears, which makes my job significantly harder when I try to problem solve it or do erp with him. We have to start erp with that until we make enough headway he's able to start providing info about the rest. I don't know if that is relevant, but thought I'd mention it in case your son is having worries he's unable to express that are leading to the meltdowns.

 

Our son is currently in an exacerbation for sure. There have been 3 kids with active strep since the second week of Jan. I just got a call from the school today and 4 kids are out today and 1 has tested positive for strep. My son's tics/ocd behaviors have been WAY more active since Jan. He still can't do simple math and is unable to retain any multiplication tables he is currently learning in 2nd grd. In addition, to the strep...he is also dealing with sudden onset of severe hearing loss in 1 ear. The docs do not know what is causing this hearing loss but they do know that the auditory nerve is not responding to sound. He will do a trial hearing aid next week. He is also scheduled to have an EEG to rule out seizure next weeks b/c his tics have changed and are more tremor now.

 

Now about his triggers...honestly, some of his triggers are sensory (clothing feel, shoe too loose, temperature changes, etc.) but he has several OCD too (ie. time exact, if you say I will be there in 2 secs he takes it literal and will set off a trigger if you are even a second late. He gets stuck on the time and can't let it go. He also has to have his shirt sleeve exactly on 1/4 of an inch out from his coat sleeve, or have his blankets tight against his neck with zero wrinkles...all which are major triggers) That said, most triggers happen b/c of inflexibilty b/c his brain gets stuck on something and can't let it go or get past it. He will dwell on it for 30min to an hr till he is so worked up. We are looking into therapy locally now to see if we can find a way to cope with his inflexibility. I am also looking at therapy swings b/c being in tight spaces (ie. undercovers) helps calm him.

 

Thanks!

Jen

[vermontmoms]

DCmom and Powpow-- thanks for pointing that out. You're right, it's not what I intended by trigger avoidance and I'm really glad you mentioned it.

 

I meant for the trigger avoidance and advanced planning to speak to behavior issues that were not OCD-related but I can see from re-reading my post that wasn't clear. When I first started to reply I thought the OP was referring to non-OCD behavioral/situational issues-- like problems that arise trying to get out of the house. For those things I find it helpful to troubleshoot the situation and try to find ways to avoid further issues w/ them in the future. For example: child is disorganized and can never remember where he left his shoes and half the time they've been left in two different locations. Whenever it's time to go, he can't find his shoes, everyone is fussing at him because they're going to be late, he gets upset, etc. Meltdown occurs. Then I'd look at the situation, realize he needed some support to help him with organization, and maybe we'd come up with some sort of shoe storage system.

 

But then while posting I realized that with my son, sometimes even the things others would not necessarily recognize as OCD are, in fact, OCD-driven.

 

The reason I mention this is that our PANDAS doc saw the video and noted that he was in fight or flight for an extraordinarily long time (we always seem to impress the wrong people--the PANDAS doc, allergist, knee surgeon...), and confirmed that in situations like this, these kids have no control. Unless we address the medical issue that's causing it, we can't expect them to handle it in a way they're not physically capable of doing. We wouldn't expect a diabetic whose condition is not well controlled to be able to control it with behavioral techniques or because we've threatened to take away their video games... kwim?

 

That's why I brought up the PANDAS treatment, because for us the meltdowns really are a non-issue when the kids are not in exacerbation. When my kids meltdown, like really meltdown and especially if it goes on for any duration-- that's the PANDAS in action and we need to jump on it medically. Once the treatment is effective, we may still have to address some lingering issues, but the difference is that b/c the PANDAS is being treated successfully- we CAN properly address them.

 

Great Post! I did edit it some so it wouldn't be so long...but to clarify, my son's issues are not disorganization; he has a bench seat that stores his basketball, it also has a basket for his gloves, hat, and a hook for his coat. His shoes are in the closet on his shelf which is clearly marked, etc. My son's issues with getting out the door was about tying his shoes and not tucking them into the velcro part and having it too loose, he was for sure it was going to come untied. He was stuck on this for 20+ mins and was crying hysterically about how it was going to come undone. Even after my SO showed him it was in a double knot and was not going to come undone. He kept pulling at the knot saying over and over it is too loose. It is not on right, it feels wrong, etc. To me this is very OCD type behavior not typical disorganization or pressure from being hurried to get out the door. I understood what you meant in your first post but your explanation did help tremendously.

Thanks,

Jen

[smartyjones]

yes -- i 100% believe your child has neurological/biochemical issues -- mine is quite 'classic' pandas --

 

Why do you think my child is different from your PANDAS kiddo?

 

 

no no -- sorry - i must have worded it incorrectlly. i didn't mean i think your child is different from mine -- i didn't mean it as an opposing thought. just that with mine, that i believe is heartily, heavily infection induced which results in behaviors outside of his control -- as we work toward medical health, i also feel we needed/need coping mechanisms to deal with the fallout from it for all of us.

 

i do believe getting to the root cause of it is of prime importance to funcitoning and continued health -- while that is happening, i think it is also important to have coping strategies to weather the storm and to try to not pick up additional disfunctional patterns .

 

 

so sorry -- i didn't mean to offend or confuse!!

[vermontmoms]

yes -- i 100% believe your child has neurological/biochemical issues -- mine is quite 'classic' pandas --

 

Why do you think my child is different from your PANDAS kiddo?

 

 

no no -- sorry - i must have worded it incorrectlly. i didn't mean i think your child is different from mine -- i didn't mean it as an opposing thought. just that with mine, that i believe is heartily, heavily infection induced which results in behaviors outside of his control -- as we work toward medical health, i also feel we needed/need coping mechanisms to deal with the fallout from it for all of us.

 

i do believe getting to the root cause of it is of prime importance to funcitoning and continued health -- while that is happening, i think it is also important to have coping strategies to weather the storm and to try to not pick up additional disfunctional patterns .

 

 

so sorry -- i didn't mean to offend or confuse!!

 

You didn't offend so don't worry...I am just trying to figure this PANDAS stuff out and honestly I am wondering how to really KNOW it is PANDAS vs Tourette's/OCD, etc, especially when they can look the exact same. I guess I am just spinning b/c another Ped Neuro gave us the TS/OCD dx and told us PANDAS is highly debated and controversial. How do you know your child is "classic PANDAS?" What is "classic PANDAS?" Honestly, that is what I need to find out and the reason I asked. You said you feel my son has a neurological/biochemical pattern/issue. Are you saying your son does too or that from my posts our kids present differently? Does yours present like Saving Sammy (mostly OCD)? How does one know if it is a biochemical imbalance? Is there a blood test and if so what do you test for?

 

Thank you for your help...we are chasing every avenue right now to try to rule out what it isn't and if there is a test for the above then we would like to run it to see if he has a deficiency.

 

Thanks,

 

Jen

Edited February 15, 2012 by vermontmoms

[smartyjones]

okay, jen -- i think i really used the term 'classic pandas' too flippantly. it's really just my term and i should not say it like that -- here's what i mean -- my ds had 'sudden onset' with wild, whacked behaviors at age 4.5. this included separation anxiety, school phobia, oppositional behaviors that were likely 'just right' ocd interruptions. he had high titers, a positive strep test, all 6 sinus cavities infected on cat scan. he had 100% remission in about 3 days when he got on the right abx. he backslid after about 30 days after his 30 day course of abx. he's shown good improvement with motrin in time of exacerbation. so, for me, in my mind, there's no doubt, it's infection related.

 

we were lucky in that one behavioral therapist mentioned pandas. she saw the OCD connection when others were likely just seeing opposition and a 'phase'. without her timely involvement, we very well could have missed titers or positive test. he very possibly could have been diagnosed 'asperger-like' (he's never fully fit, but many social behaviors would have led down that road) or simply a bad egg. we have some issues going on with school now that i reflect that in my dad's day would have landed my son in a school for incorrigible boys.

 

it's really anxiety and avoidance over black and white thinking. if you don't realize that and push him to confront and comply with the trouble, he can lose it. if you can work with him, you garner some very interesting insights and he does very well with ERP like plans.

 

so - i can't really say i have any advice for you in determining what is best for your son. i just know that save some important detours in our journey, we'd be in a different place.

 

i think for me, the most valuable thing in an explosion is for me to be detached from the emotion of it. by working the explosvie child plan, i can be involved with him, but not dragged into the drama of it.

 

so -- like the example you used, he's upset about his shoes. you don't try to change his mind or show him any other ways to look at it. you just repeat. . . 'your lace isn't right'. he, 'no - it's all sideways.' you, 'sideways, huh?'. he, 'yes, it can't be that way?'. you, 'it can't'. he,'it's going to come undone. you, 'it is?'.

 

for my son, in exacerbation, this has headed off explosions. not in exacerbation, it's thrown it back on him to reflect and he can see what he's thinking doesn't reallly make sense. there are also the times it may not be such a charm and of course, the ones we won't talk about that i am not so skilled in my response.

 

you continue like this until he calms to be able to have a small window into either him seeing it differently or him accepting some type of help from you, or maybe even him being able to get out the door into a different environment and not focus on it. this is referred to as 'emergency plan b' -- you use it when you need it on the fly, it's not the preferred method -- you'd then later when all is calm, try to discuss the shoelace issue and see if you and he can come up with some other plan -- crocs for a while or something. then you'd use this shoelace thing as something to work on in either a problem solving way or ERP manner.

 

of course, with pandas, i think all gets thrown b/c it can come up out of the blue. it sounds like your son is in exacerbation and you may just want to use this to get by all the landmines until things are a little calmer and try to tackle something.

 

i'm curious -- it sounds like you have a lot of 'evidence' of pandas -- are you thinking that is not the correct diagnosis?