Shouldn't I know what to do now?

[peglem]

Ugh. I've been pondering this.. seems like there are so many possibilities for what's going on. The mornings really suck...she will not get on the bus. Instead she attacks me or another family member or whams her head all over the place (really hard, glad I haven't replaced that drywall yet!) and bites herself bloody, and smashes her knee into her face...and more-but those are the highlights. After @ 10 minutes the transportation service informs me that they can't wait any longer. So then I have to take her to school. When we get to school she fights getting out of the van, but when she finally gets out, she tries to pull me into the school with her. She has a 1-1 that meets the van and is with her, so I'm not just leaving her to go on her own devices. School reports that she's having really rough mornings, but does well in the afternoons.

 

When she comes home she seems fine...snacking, playing computer, watching tv. She may have an episode or 2 in the evenings, but in between those she is calm and doing well. She has been insisting that I lay down with her at night, and tries to wrap her arms and legs around me to keep me there, because she knows I leave after she falls asleep. Her grip slackens when she falls asleep and then I go to my own bed. She gets up in the middle of the night and crawls into my bed, which doesn't wake me up- I just find out in the morning.

 

So, sounds like separation anxiety, right? But, here's where it gets muddy for me. This child has NEVER had separation anxiety. Being developmentally delayed, this is one of those normal developmental stages that she has never gone through. So, then...is this progress- finally beginning to go through a normal developmental phase? Or is it just PANDAS BS?

 

Also, you know how infants need to be held close and swaddled? Again, she never did that in infancy, but is really seeking lots of hugs that she holds for a good while, and presses herself against me when she sits next to me. I can't really swaddle her- she's too big.

 

These things would be considered regression for most kids, but I'm just not sure how to interpret them, in light of the fact that they are normal developmental stages that she has not previously experienced.

 

The other thing is that she is not hyperactive like she usually gets during exacerbation.

[kimballot]

Hi Peg - I am hearing so much sensory in your description - but I come from a sensory background so I tend to see things that way. Still, I am hearing banging her head, biting, wrapping her legs around you, looking for hugs, etc. It all looks like searching for some deep pressure, which is calming to the central nervous system.

 

I know she just finished the low dose IVIG and that is very likely the main problem - and quite honestly I have no experience with that.

 

But... I am wondering if there could be something else going on also. Do you have allergies well controlled? Is there a yeast issue or mold issue? Is she taking antihistimines? I've seen these trigger similar sensory behaviors.

 

Do you work with an OT or is there one at school you could consult with? Perhaps some deep pressure - weighted vest, a brushing program, weighted blankets, etc. some type of sensory diet where she wakes up in the morning and starts her day with lots of deep pressure and muscle resistance - perhaps that could help to take the edge off until the next IVIG.

[peglem]

Hi Peg - I am hearing so much sensory in your description - but I come from a sensory background so I tend to see things that way. Still, I am hearing banging her head, biting, wrapping her legs around you, looking for hugs, etc. It all looks like searching for some deep pressure, which is calming to the central nervous system.

 

I know she just finished the low dose IVIG and that is very likely the main problem - and quite honestly I have no experience with that.

 

But... I am wondering if there could be something else going on also. Do you have allergies well controlled? Is there a yeast issue or mold issue? Is she taking antihistimines? I've seen these trigger similar sensory behaviors.

 

Do you work with an OT or is there one at school you could consult with? Perhaps some deep pressure - weighted vest, a brushing program, weighted blankets, etc. some type of sensory diet where she wakes up in the morning and starts her day with lots of deep pressure and muscle resistance - perhaps that could help to take the edge off until the next IVIG.

Her school is pretty much based in sensory integration. Each classroom has a sensory room the students go to whenever they want to/need to. Recreational therapy is all sensory based. Each child has a sensory "diet". They recognize that the kids can't learn when they are so disregulated. Such a nice change from her ABA based schools in previous years!

 

Yes, I thought at 1st it was deep pressure, and that may be part of it, but here at home- its only mom that she seeks out for this stuff. Before this she would lay on her BIG ball or wrap herself in a blanket. This needing/wanting close physical contact with me is new...and I mean ever!

 

I could be just overly optimistic, I really want PANDAS gone, afterall! Mostly I'm just confused as to whether what I'm seeing is symptoms or progress. I know the reaction to separation is more violent than when an infant goes through it- but when infants go through this stage, they usually aren't walking yet and don't have the muscular definition or strength to express the fear with such violence. All the violence is a flight or fight type of reaction. So, I guess if its progress and PANDAS doesn't impede her, she may actually develop some self soothing/self regulation out of this? (I can fantasize!)

[kimballot]

Wow! It sounds like you have a wonderful school program!

 

Perhaps it is separation anxiety. It does not sound like they are seeing these issues in school - correct? And... when you talk about typical separation anxiety ... infants can be rather violent with separation anxiety too. Usually in infants we see it when they start crawling or walking - even if the crawling or walking is delayed. Something about realizing that you have the capacity to be separated from your caregiver. Perhaps your daughter is experiencing that now... if the PANDAS cloud is lifting.

 

If the behaviors are limited to one environment (home), then it could be a sensory issue or a psychological issue at home. If they are limited to an event (separation for school, separation for bed), then you have your answer.

 

Are you charting the behaviors carefully and looking to see what happened just before the behavior and also how you responded to it? This will help you to figure out what is causing it, what is reinforcing it to happen again, and will also help you to deal with it once you figure it out.

 

Is there a behavior specialist you could talk to at school? Maybe they can help you to sort it out.

 

 

 

 

 

Yes, I thought at 1st it was deep pressure, and that may be part of it, but here at home- its only mom that she seeks out for this stuff. Before this she would lay on her BIG ball or wrap herself in a blanket. This needing/wanting close physical contact with me is new...and I mean ever!

 

I could be just overly optimistic, I really want PANDAS gone, afterall! Mostly I'm just confused as to whether what I'm seeing is symptoms or progress. I know the reaction to separation is more violent than when an infant goes through it- but when infants go through this stage, they usually aren't walking yet and don't have the muscular definition or strength to express the fear with such violence. All the violence is a flight or fight type of reaction. So, I guess if its progress and PANDAS doesn't impede her, she may actually develop some self soothing/self regulation out of this? (I can fantasize!)

[peglem]

Wow! It sounds like you have a wonderful school program!

 

Perhaps it is separation anxiety. It does not sound like they are seeing these issues in school - correct? And... when you talk about typical separation anxiety ... infants can be rather violent with separation anxiety too. Usually in infants we see it when they start crawling or walking - even if the crawling or walking is delayed. Something about realizing that you have the capacity to be separated from your caregiver. Perhaps your daughter is experiencing that now... if the PANDAS cloud is lifting.

 

If the behaviors are limited to one environment (home), then it could be a sensory issue or a psychological issue at home. If they are limited to an event (separation for school, separation for bed), then you have your answer.

 

Are you charting the behaviors carefully and looking to see what happened just before the behavior and also how you responded to it? This will help you to figure out what is causing it, what is reinforcing it to happen again, and will also help you to deal with it once you figure it out.

 

Is there a behavior specialist you could talk to at school? Maybe they can help you to sort it out.

Fight or flight doesn't just happen w/ separation anxiety. We have spent years with this demon controlling our lives and ruining Allie's. We've been through countless behavior specialists- they can't figure her out. She's been ABC'd her whole life and they come to the conclusion that it is not controllable behavior and the triggers are internal, which of course means she needs medication. We accept that. We see how its like somewhere inside her a switch is flipped and she just goes off. We would be ecstatic if we could find a medication that would work to stop this. I shed my anti-medication prejudice years ago.

 

From mid January of this year until the middle of March, we enjoyed/celebrated (not sure there is a word for it) a nearly F or F free period. She was learning again and engaging with us...OMG it was so wonderful! The magic med, it turns out is just the right combo/dose of abx!!!

 

We have been working w/ an RDI consultant for a little over a year now. We are at the stage where Allie is accepting our guidance as parents. Stuff that usually happens naturally in infancy didn't happen with our girl...but we're working, basically, on infant social/emotional development. During that 3 month hiatus, great strides were made. So, I'm all that much more eager to get the medical issues under control. I figure it will soon become apparent if this is development or just PANDAS.

 

We had a very lovely afternoon and evening today- maybe she's coming back.

[kimballot]

Thank you so much for sharing that with me. Clearly I am new to the forum and did not know your story, so it was so kind of you to share that. I am sure you've been through everything with behavior and it is really neat that you saw changes with abx., and I learned (and always do learn ) so much from your post.

 

You started this thread saying "face it - it is an exacerbation". Are you still feeling that way? It sounds like you are not and you are trying to sort out if this could just be good old fashioned development.

 

You are SOO correct that the triggers in PANDAS are internal! (try telling that to some of the specialists along the way who have accused me of causing all of my son's problems).... I've come to the conclusion that with PANDAS we can either avoid them by (a) not introducing things that we know will trigger the behaviors (which- of course - puts the kid in control and leads to lots of manipulation) or by ( medicating the child specifically for behavior, or by ©removing the PANDAS. Really - ABC still applies. It is just a question of expanding our concept of A.

 

For example - ABC applies with sensory, but most people don't think to look for sensory triggers (though it sounds like you have done that quite nicely)

ABC applies with OCD - (such as insisting the child does something and odd number of times)

ABC applies with allergies (exposure to trees for example)

ABC applies to PANDAS (in my case, H1N1 exposure this year)

 

[Has anyone written anything on behavior management in PANDAS?? (just curious)]

 

You are right that fight or flight does not just happen with separation anxiety... but if your PANDAS symptoms are reduced then maybe it is time to go back to ABC a little bit. If she is doing well in school- the other environment she spends lots of time in- then maybe it IS an ABC event with an external A. Maybe it is separation anxiety.

 

I don't know if it separation anxiety. You seem to be heading down a path that makes sense. I'd still chart it for a few days and see. You had a lovely day yesterday and THAT is something to celebrate!

 

 

 

 

Fight or flight doesn't just happen w/ separation anxiety. We have spent years with this demon controlling our lives and ruining Allie's. We've been through countless behavior specialists- they can't figure her out. She's been ABC'd her whole life and they come to the conclusion that it is not controllable behavior and the triggers are internal, which of course means she needs medication. We accept that. We see how its like somewhere inside her a switch is flipped and she just goes off. We would be ecstatic if we could find a medication that would work to stop this. I shed my anti-medication prejudice years ago.

 

From mid January of this year until the middle of March, we enjoyed/celebrated (not sure there is a word for it) a nearly F or F free period. She was learning again and engaging with us...OMG it was so wonderful! The magic med, it turns out is just the right combo/dose of abx!!!

 

We have been working w/ an RDI consultant for a little over a year now. We are at the stage where Allie is accepting our guidance as parents. Stuff that usually happens naturally in infancy didn't happen with our girl...but we're working, basically, on infant social/emotional development. During that 3 month hiatus, great strides were made. So, I'm all that much more eager to get the medical issues under control. I figure it will soon become apparent if this is development or just PANDAS.

 

We had a very lovely afternoon and evening today- maybe she's coming back.

[peglem]

You started this thread saying "face it - it is an exacerbation". Are you still feeling that way? It sounds like you are not and you are trying to sort out if this could just be good old fashioned development.

 

Yeah, guess I'm not as certain about the exacerbation anymore.

 

If we have the same problem with the bus this morning, I'll probably just cancel the morning bus for the rest of the year. Every time they leave w/o her it just reinforces that a big fit means she doesn't have to get on the bus. Even though I don't think she's doing it on purpose yet- it can still turn that way.

 

I didn't realize you were new to the forum- you've been so active here!

[bubbasmom]

We too went right back into the exaberation following IVIG. Its horrible, frustrating, and makes you feel so defeated. You're like 'I just paid all this money, got the treatment that doctors recommended, NOW look at him, back to square one'! But I will say my son's stuff lasted a much shorter time period this time. It was like a 6 week deal after his first IVIG, about a 3 week deal after his second. His titers are still around 1320 though which is 3 times higher than his original exaberation back in September.

Hang in there. TAKE CARE OF YOU somehow during this. My husband and I just had this conversation last night. I told him, "I'm not even the same person I was 6 months ago. PANDAS has changed me, changed my son, and changed my whole family". Its like post traumatic stess syndrome.

 

BIG HUGS!!!

Denna

[kimballot]

Peg - I am waiting to hear how it went today .... how was the bus this morning? Is this an exacerbation or are you moving in the right direction?

[peglem]

Peg - I am waiting to hear how it went today .... how was the bus this morning? Is this an exacerbation or are you moving in the right direction?

She only got a little upset about the bus today...seemed like she was just waiting it out for them to leave her behind. When I took her to school, she was pretty upset and fighting all the way there. Then took my hand and led me to the classroom door. Her school is set up where they bought a row of homes on the street right next to the old church building that houses the main school. Each of the houses w/ the front and back yard is a classroom, so I basically walked into the front yard with her, up to the door, then said good-bye as she entered. She had a rough morning again, and better afternoon. But, wet the bed last night- always a sign of exacerbation, and when she got home, went strait to bed (w/o me) and took a 2 and 1/2 hour nap. And she's had a couple "episodes". But also- she's getting back to the lid spinning stuff...I'm leaning toward exacerbation tonight.

I did call and cancel the AM bus for the rest of the school year- @ 3 weeks.

Her doc called me back. He'll work w/ me on abx modification, but wants to get labs 1st to check her liver and kidney function, thyroid, etc, etc. Reasonable- see if maybe there's something else going on. So tomorrow AM before school we'll go get the bloodwork done. Really want her more stable before the HD IVIG.

[bronxmom2]

I don't think the higher dose IVIG is going to hurt her in any way, even if there are other things going on.

If she will accept the treatment, I think you should go ahead with it.

I am following your story and really rooting for you to get some lasting improvements!