Stress and the BBB

[peglem]

I wanted to remove this topic to a new thread- so many different things being discussed there- gets hard to follow one concept.

 

So what Dr. Cunningham said about stress and the BBB, I think most of us knew, that stress, especially those fight or flight panic things, open the BBB. I've been wondering about this for a long time. So, in PANDAS, it seems that the symptoms kind of self perpetuate the disorder. The anxiety keeps the BBB open-allows autoantibodies in-creates anxiety- over and over again.

 

We've been trying to work on the elevator issue w/ my daughter, because she indicated that she wanted to do this. So far, we have not been successful. She tries, we spend hours hanging out near the elevator- she watches us repeatedly get on and off, but still, the anxiety is so great that she cannot get herself to take the plunge. I'm worried that working on this is making things worse. Although, I do think the autoantibodies are gone w/ the monthly HD IVIG and constant zithromax coverage...

 

My daughter has had PANDAS all of her life, practically speaking, all of her thought processes and development have been affected by it. We are truly operating in the great unknown as far as potential goes. She has overcome fear of carousels and washing machines...but how do we do this? Its all complicated with the fact that she is nonverbal and communication is difficult for her...

[thereishope]

Oh, Peg, it's like a nasty cycle. To overcome any fear that is associated with OCD, anxiety is involved. Then that anxiety causes the PANDAS symptoms to ramp up and OCD is among them. First, I am so proud of your daughter for WANTING to tackle the elevator fear! That is huge that she wants to do even though the anxiety is there. Wow! How far has she gotten so far with the elevator...being able to watch others? Can she watch you, her mom, go up and down in an elevator? Does that in itself still cause anxiety?

[purple66p]

We've been taking the stairs for so many years now that I've just decided to embrace it as extra exercise. I don't even ask about the elevator anymore.

[peglem]

We've been taking the stairs for so many years now that I've just decided to embrace it as extra exercise. I don't even ask about the elevator anymore.

Oh, yes, us too. But she's not just anxious about riding the elevator. She also gets very anxious about seeing the elevator, and as you've probably noticed, taking the stairs usually means being in the vicinity of an elevator.

 

I would not have chosen to tackle the elevator issue right now- she expressed that she wanted to do it, and it has been causing an issue w/ getting her to the second floor of the hospital for IVIG.

[peglem]

Oh, Peg, it's like a nasty cycle. To overcome any fear that is associated with OCD, anxiety is involved. Then that anxiety causes the PANDAS symptoms to ramp up and OCD is among them. First, I am so proud of your daughter for WANTING to tackle the elevator fear! That is huge that she wants to do even though the anxiety is there. Wow! How far has she gotten so far with the elevator...being able to watch others? Can she watch you, her mom, go up and down in an elevator? Does that in itself still cause anxiety?

Yes, I'm proud of her for telling me that she wants to deal with this as well and love that she knows its a problem.

We found an elevator that is in an outside plaza that only has 2 or 3 business left in it. So when we use the elevator she can see us exit on the floor above (2 stories only). She stays in the courtyard on the ground floor. But, we live in Phoenix and it so dang hot! I think I'm going to try just using a timer- and start with just elevator watching and not even expect her to actually get on yet. Maybe I was expecting too much, too soon.

[smartyjones]

We've been trying to work on the elevator issue w/ my daughter, because she indicated that she wanted to do this. So far, we have not been successful. She tries, we spend hours hanging out near the elevator- she watches us repeatedly get on and off, but still, the anxiety is so great that she cannot get herself to take the plunge. I'm worried that working on this is making things worse.

 

have you ever checked out the website anxietybc.com? i haven't been there in a while but used their materials in helping my ds get over potty phobia. -- uh, i believe it was 59 days or maybe 79 -- whatever, it seemed like an eternity at the time, but now i can't even properly remember it.

 

there are charts and graphics that were so helpful. my kids loved the faces -- your daughter is older but may still like it. she can help gauge her anxiety by the faces and you work a plan of what you will do each time -- 1, watch elevator for 5 minutes; 2, push button; 3, get in but don't ride. whatever she can handle -- a little more each time. if she can't do the day's step, back it down to something easier. some days, we just did yesterday's step and said we'd move on tomorrow. it's just a system of babysteps, it sounds as if tackling an actual elevator ride is just too much for her then you get into the anxiety cycle.

 

they have a page where you gauge the related activity and anxiety level by 1 - 10. we didn't use it that way. we used it to record the steps we were doing. my son had no interest in this goal, so he didn't share in making the steps, but was proud and happy when i wrote the day's step on the chart. for swimming fears, each of my kids helped work on the 10 steps prior to doing them. i think there is also a thermometer to rate anxiety. we used that differently too. they colored a section each time they conquered a step.

 

i don't know how far/troublesome it is for you to get to elevators. you can even have step such as looking at picture of elevator. writing the word elevator. drawing a picutre of elevator, looking up elevators on the internet. maybe the step that day won't be moving on at that particular elevator but doing a past step at a new elevator that is somewhere near where you are going anyway on that day.

[peglem]

We've been trying to work on the elevator issue w/ my daughter, because she indicated that she wanted to do this. So far, we have not been successful. She tries, we spend hours hanging out near the elevator- she watches us repeatedly get on and off, but still, the anxiety is so great that she cannot get herself to take the plunge. I'm worried that working on this is making things worse.

 

have you ever checked out the website anxietybc.com? i haven't been there in a while but used their materials in helping my ds get over potty phobia. -- uh, i believe it was 59 days or maybe 79 -- whatever, it seemed like an eternity at the time, but now i can't even properly remember it.

 

there are charts and graphics that were so helpful. my kids loved the faces -- your daughter is older but may still like it. she can help gauge her anxiety by the faces and you work a plan of what you will do each time -- 1, watch elevator for 5 minutes; 2, push button; 3, get in but don't ride. whatever she can handle -- a little more each time. if she can't do the day's step, back it down to something easier. some days, we just did yesterday's step and said we'd move on tomorrow. it's just a system of babysteps, it sounds as if tackling an actual elevator ride is just too much for her then you get into the anxiety cycle.

 

they have a page where you gauge the related activity and anxiety level by 1 - 10. we didn't use it that way. we used it to record the steps we were doing. my son had no interest in this goal, so he didn't share in making the steps, but was proud and happy when i wrote the day's step on the chart. for swimming fears, each of my kids helped work on the 10 steps prior to doing them. i think there is also a thermometer to rate anxiety. we used that differently too. they colored a section each time they conquered a step.

 

i don't know how far/troublesome it is for you to get to elevators. you can even have step such as looking at picture of elevator. writing the word elevator. drawing a picutre of elevator, looking up elevators on the internet. maybe the step that day won't be moving on at that particular elevator but doing a past step at a new elevator that is somewhere near where you are going anyway on that day.

Thank you so much- that sounds like just what we need! The other mistake we made- and really, we should have known better was to hold out a big carrot (reward for doing it), which I think just made it worse. We know that ABA type stuff just doesn't work for her, and golly, she is already motivated. I'll go to that site and explore, just as soon as I get some time for it.

Our chosen elevator is a bit out of the way- but is ideal in that we don't have to take her through a building or store to get to it and if we need to leave while she's agitated-the parking area is close as well. But once we get started on desensitizing her- we could drop by one that's convenient.

[thereishope]

The psychologist tried those faces with my son when she attempted CBT and I knew he'd have nothing to do with them. He was very difficult When you attempt something with her, do it in baby steps like you said. I warned my son ahead of time (like an entire day) when we going to to do something different so he didn't feel blindsided. Then we would stay with that one single change for days until the anxiety was at a minimum. Then, again, I'd warn him about the next change and so on... You usually have to look at these things in layers. Watching the elevator alone is a step in itself.

[smartyjones]

peg -- the info on that site is great, but there is a lot! i'm sure you'll find it interesting, but it will take a while to go through. you could do a search for the items i was mentioning to give you a framework and then go back later.

 

the list is a "fear ladder". the thermometer is a "fear thermometer". there is a page of "chester the cat" that describes how anxiety feels to a cat - silly but cute. and there is a page of "talking to your child about anxiety" -- it likens it to reality situations of coming upon a bear and a smoke alarm. my kids have always done better with explanations or stories that are not really about them personally.

 

i realize my kids are younger -- but it may give you ideas and then you can adapt it.

 

keep me posted on how it's going.

 

 

[dut]

Hi - this is more a question and advice seeking re anxiety and nightime...

 

my dd7 has had three back to back exacerbations since march. We had a 4 day one in response to an acute allergic reaction to a food, then a couple of weeks minor flare in response to a flu and then a bigger one in response to a cold. We fully remitted in between the 1st 2 quite quickly but I feel this 3rd one is bad 'cos off the cumulative effect of each episode, each one putting her immune system on higher alert.

 

Anyways.. this 3rd episode has included nightwaking, being frightened and wanting to come into bed with me. She hasn't wanted to be in bed with me since she was 4. She was so scared and none of us were getting any sleep so I let her come in bed.

 

So, now there's me, my ds2 and my dd7 all in a bed and although the sleep is better than before I let her come in, it's still pretty crap as my dd wakes my ds with moving around in bed etc, he wakes me and on it goes all night.

 

Sleep-deprived-me thinks I should be easing her back into her own bed but not sure how to do it without many sleepless nights and loads of crying.

 

My unselfish side thinks I should wait, it will resolve when this exacerbation resolves (they always have done in the passed for us with steroids, abx and time.. although, we are 2 months in and though things are getting better we are still seeing oppositional behaviour, emotional lability, fear of the dark and this seperation anxiety).

 

So my questions are -

 

Is this a separation anxiety issue that can be tackled head on like other anxieties or is separation anxiety a different creature, more like age regression, that has to be dealt with differently?

 

Should I attempt to deal with it now or will it hassle her so much (she goes to bed in her bed but wakes in the night really frightened and has to come in then) that it will just prolong this epsiode?

 

Should I just wait it out and deal with it when I know she's really out of the woods with this episode?

 

Thanks for any ideas, advice.. sorry to hijack..

Edited August 7, 2010 by dut

[peglem]

Hi - this is more a question and advice seeking re anxiety and nightime...

 

my dd7 has had three back to back exacerbations since march. We had a 4 day one in response to an acute allergic reaction to a food, then a couple of weeks minor flare in response to a flu and then a bigger one in response to a cold. We fully remitted in between the 1st 2 quite quickly but I feel this 3rd one is bad 'cos off the cumulative effect of each episode, each one putting her immune system on higher alert.

 

Anyways.. this 3rd episode has included nightwaking, being frightened and wanting to come into bed with me. She hasn't wanted to be in bed with me since she was 4. She was so scared and none of us were getting any sleep so I let her come in bed.

 

So, now there's me, my ds2 and my dd7 all in a bed and although the sleep is better than before I let her come in, it's still pretty crap as my dd wakes my ds with moving around in bed etc, he wakes me and on it goes all night.

 

Sleep-deprived-me thinks I should be easing her back into her own bed but not sure how to do it without many sleepless nights and loads of crying.

 

My unselfish side thinks I should wait, it will resolve when this exacerbation resolves (they always have done in the passed for us with steroids, abx and time.. although, we are 2 months in and though things are getting better we are still seeing oppositional behaviour, emotional lability, fear of the dark and this seperation anxiety).

 

So my questions are -

 

Is this a separation anxiety issue that can be tackled head on like other anxieties or is separation anxiety a different creature, more like age regression, that has to be dealt with differently?

 

Should I attempt to deal with it now or will it hassle her so much (she goes to bed in her bed but wakes in the night really frightened and has to come in then) that it will just prolong this epsiode?

 

Should I just wait it out and deal with it when I know she's really out of the woods with this episode?

 

Thanks for any ideas, advice.. sorry to hijack..

I'd wait until she's stable. I'd be afraid of prolonging the current episode if you deal with it now. Is there something you can do with little brother? Sleep is so important- I don't think I got a whole night's sleep from the time Allie was born until she was @ 8yo.

[dut]

peglem - yeh that's wot I reckoned.. just so desperate for sleep..

 

as for ds2.. he's our highly probable PANDAS child. Before my dd came in bed he has recently been waking me about 5-6 times a night. Doesn't stay awake, no issues just up/comfort/sleep. He's got mucked up adrenals too that may be impacting but so far the supps for that aren't helping.. (only thing that has got him to sleep was a steroid burst!!) so not much I can do there. He's on abx and has just done another burst but this one didn't have the same sleep effect of the first but we have seen much less hyper/aggressive behaviour and stuttering...

 

Oh well, just got to hunker down and get on with it. I know (I hope) my dd will get over this one.. I just see fall looming and other illnesses on the horizon and worry that we'll come out of this one and straight into another.. for the last couple of years we've had almost virtually episode-free springs and summers, returning to baseline. Her immune system already feels so poked that I worry even colds will produce exacerbations....

 

thanks for your thoughts..

[thereishope]

dut, I agree with Peg. She needs that comfort right now, even if is heightened due to separation anxiety. Would she go on an air mattress next to your bed or would the 2 year old be willing to do it. If you can, blow up a twin air mattress and once the kids are asleep, you can sneek out of bed and sleep on it!

[smartyjones]

...

 

Sleep-deprived-me thinks I should be easing her back into her own bed but not sure how to do it without many sleepless nights and loads of crying.

 

Is this a separation anxiety issue that can be tackled head on like other anxieties or is separation anxiety a different creature, more like age regression, that has to be dealt with differently?

 

Should I attempt to deal with it now or will it hassle her so much (she goes to bed in her bed but wakes in the night really frightened and has to come in then) that it will just prolong this epsiode?

 

Should I just wait it out and deal with it when I know she's really out of the woods with this episode?

 

 

dut -- there is also good info on that site about separation anxiety. that site is run by an anxiety clinic dealing with "normal" anxiety -- no mention of infectious triggers but i believe many of the coping skills are helpful.

 

i absolutely believe the medical issues for our kids are foremost in importance of being addressed. additionally, we need day-to-day coping skills for us and them.

 

i'd say most of my son's improvements have almost just happened -- my dh and i look at each other -- "did he just go to the potty on his own with no tantrum?" "was he really that relaxed when he discovered i put away the legos?" -- i think that is due to a medical influence on brain function. recently, intense food contamination issues that just appeared and then just seemed to disappear.

 

we've also had great strides in conquering potty phobia with desensitization. and with school phobia issues. i think this is breaking the bad habits that have come out of intense fears from an exacerbation.

 

i believe those issues are best worked on when out of exacerbation. while in it, i don't think it's so helpful and just accomodating may be a better, albeit possibily adding to future trouble, coping choice. of course, another million dollar question - when are you accomodating unnecessarily and when is it necessary. that said, you can maybe 'test' the exacerbation with the mention of something new and see how she receives it.

 

i do have a new found credence in the fact of plain old psychology that something that starts as a physical issue may morph into other things not really related to the initial cause.

 

i'm kind of babbling with that -- but ds was having a herx-like reaction last week that resulted in severe contamination fears and not eating. he's only 40 lbs to begin with -- after a few days of 6-8 0z of liquid and maybe 100 calories, our stress level of impending ER IV also began to complicate things. it seemed so clear to me -- how it was classic, textbook, severe OCD -- i think he believed nothing could touch the food itself not even the inside of a package of individually packaged food or he would get germs, get sick and maybe die. -- that's what i've been able to surmise - there could have been more in his mind -- but if had come on more slowly how parental influence then creates other psychological issues. happily, he's back eating and we've mostly recovered from it. we went through a week of what is usually probably 6 months of how a kid might get into a problem. very odd. i was thinking about how the 'normally accepted' treatments for anorexia focus on all those other things -- like seeing what are symptoms that have arisen from the problem, but were never the real root. (of course, not for eveyone)

 

with this, we totally accomodated - thought of ER was very scary - could they just hydrate or would we have been on psych ward? -- but also, continued trying - can you use a fork with this? etc. on day 6, he used a plastic spoon individually wrapped for raw muffin batter , day 8 he ate like a dog off tin-foil covering the plate. each day was an improvement and yesterday ate french fries with his hands. not totally back to normal but getting there. very odd. i believe it's all related to this herx and problems and improvement not at all due to anything we've done or not done.

 

i think you can attempt to conquer the fear issues even if you don't think she's totally out of exacerbation -- just being sure to have rather low expectations and ideas of success. every little movement from where you are is a success. if there's no movement, is not deflating, just another step in the process. or a realization that it's not the right time.

 

you can do it in baby steps. perhaps, with a sleeping bag next to your bed? have you tried that? then slowly moving the sleeping bag toward her room?

 

i can't remember the real name for phobia conquering -- there's the sink or swim method or the desensitization method. i think sink or swim can work and if done properly, can be effective. however, i think it's too difficult for a parent to endure. also, then to the initial question in this post -- is that anxiety worsening the cycle of physical anxiety causes?

 

your sleepness nights and loads of crying is the sink or swim method. perhaps that could be the guide -- one small comfortable step toward the ultimate goal. maybe you have a night where everyone is on the floor -- like a slumber party - and then you alternate who gets the bed and then you move someone toward the door. think about what you think might work in your life. i've found it to be helpful that then we're working toward something - even if slowly - than being held hostage to it all.

Edited August 7, 2010 by smartyjones

[Stephanie2]

Before i knew my son had pandas, I used to try to fight the separation anxiety. NOTHING worked. It was all a wasted effort, a battle that took a lot out of me. It wasn't until we got pandas under control that the separation anxiety (including sleep issues) resolved. So, personally, I wouldn't fight a battle that I can't win.

 

Secondly, I just wanted to let you know what helps my pandas ds2 sleep: spironolactone (immune-modulating drug), melatonin, and when he enters a brief exacerbation I give him ibuprofen 30 minutes before bedtime.

 

Best of luck. The sleep issues are the worst! As if we don't have enough to deal with during the day!!