where do you draw the line?

[smartyjones]

looking for opinions -- looking for the best way to draw the line on behaviors that are pandas-related but also need to get over them for future best functioning.

 

my son - 5- had been doing great. unfortunately, we had a perfect storm in the past few weeks. we changed his homeopathic protocol b/c that is what the plan was. about a week-ish later, he got the flu. still don't know if that was b/c of medicine change or in spite of it - i think it's all coincidental that everything happens at once. have seen some exacerbation of behaviors - not too bad. he seems to be pulling out of it now. we go to the dr tomorrow.

 

one of his biggest issues is separation anxiety/phobia of new or different situations. today, he didn't want to go to church (very fun program, usually likes) b/c i usually go but i was staying home today to do work(i do transcription from home). he just couldn't make it to go with brother and father. we suggested papa stay in the room with him - still didn't go for it. delay getting dressed/fought leaving house/fought buckle seat belt - much crying/screaming. i am concerned b/c school is tomorrow after a full week of vacation plus 3 days prior that he missed from flu. he's saying today that he doesn't want to go to school.

 

i do think he's improving health-wise, but not back to where he was prior to flu. i tend to get uptight in how much to 'allow' the anxiety b/c i don't want it to spiral out of control.

 

after this morning, i'm tempted to say b/c he has dr appt tomorrow, we could have a few more days out and see if he improves but am also scared that this first day staying out will morph into weeks of refusing school. the school can be helpful but they don't really get pandas. they look at it that if he choses to cry in the corner all day, that's his choice and he can also choose to participate. i know i don't want him crying in the corner b/c i don't think it's his defiant, obnoxious choice, i think it's anxiety based. i cannot do small steps with them such as 1 hour/day - they want an all or nothing. psych suggested going last hour if troublesome - they may go for that b/c psych recommended but that would be some back and forth discussions - doesn't help me with tomorrow.

 

he's not in full exacerbation that i would think 'all bets are off, he's sick' but i am willing to give him leeway but am worried too much rope will hang us both. how do you determine where to draw the line?

[matis_mom]

looking for opinions -- looking for the best way to draw the line on behaviors that are pandas-related but also need to get over them for future best functioning.

 

my son - 5- had been doing great. unfortunately, we had a perfect storm in the past few weeks. we changed his homeopathic protocol b/c that is what the plan was. about a week-ish later, he got the flu. still don't know if that was b/c of medicine change or in spite of it - i think it's all coincidental that everything happens at once. have seen some exacerbation of behaviors - not too bad. he seems to be pulling out of it now. we go to the dr tomorrow.

 

one of his biggest issues is separation anxiety/phobia of new or different situations. today, he didn't want to go to church (very fun program, usually likes) b/c i usually go but i was staying home today to do work(i do transcription from home). he just couldn't make it to go with brother and father. we suggested papa stay in the room with him - still didn't go for it. delay getting dressed/fought leaving house/fought buckle seat belt - much crying/screaming. i am concerned b/c school is tomorrow after a full week of vacation plus 3 days prior that he missed from flu. he's saying today that he doesn't want to go to school.

 

i do think he's improving health-wise, but not back to where he was prior to flu. i tend to get uptight in how much to 'allow' the anxiety b/c i don't want it to spiral out of control.

 

after this morning, i'm tempted to say b/c he has dr appt tomorrow, we could have a few more days out and see if he improves but am also scared that this first day staying out will morph into weeks of refusing school. the school can be helpful but they don't really get pandas. they look at it that if he choses to cry in the corner all day, that's his choice and he can also choose to participate. i know i don't want him crying in the corner b/c i don't think it's his defiant, obnoxious choice, i think it's anxiety based. i cannot do small steps with them such as 1 hour/day - they want an all or nothing. psych suggested going last hour if troublesome - they may go for that b/c psych recommended but that would be some back and forth discussions - doesn't help me with tomorrow.

 

he's not in full exacerbation that i would think 'all bets are off, he's sick' but i am willing to give him leeway but am worried too much rope will hang us both. how do you determine where to draw the line?

So sad to hear he's sliding back... It's a hard decision, but it seems his behavior change is related to his health, so I don't think he's being manipulating. It's such a hard line between trying to hold the ground you gained so far and giving him a break when he needs it. No matter what you do tomorrow, make it clear it is your decision based on his health, and not on his behaviour. Also, try to make the decision tonight, and be all ready to carry it out tomorrow (unless we wakes up with a fever or something major happens during the night). I used to play that game with my kids, should we go, should we not go? I would ask their input, there would be different opinions, we would go back and forth... it really did not help to involve them in the process. I find it works a lot better if I just make an executive decision and stick with it. If they see you worried/second-guessing yourself, that will just add to his anxiety/insecurity. If, let's say, you decide he is going to school tomorrow, just getting up with a smile, giving a good breakfast, telling him how well he's been doing and how confident you are that he's going to have a great day at school. I was just reading this book for parents of kids with OCD, and one of the key things if for you to be strong and transmit that strength and hope to the child. If you decide he is to stay home, that's fine too, just get up with the same positive attitude and tell him you think he needs to stay home just one more day to recover from the flu, so he can go back to school all well by tomorrow. You get the idea.

 

Did you try ibuprofen? It might just get him through this hump.

[Megs_Mom]

How did he do this am? I have my fingers crossed for you both, whatever your decision. I'm sorry to be late in replying - little internet access last week - but I'll post anyway.

 

We tend towards the firm side. I think that may partially be because despite suspecting PANDAS from the start, we were unable to get her diagnosed for a long time, so we existed in the "OCD world". This was long before Dr. L came on the scene. While I will now ALWAYS treat her medically, we did learn a lot during the process about what we can really expect in the worst of times.

 

While I say we are firm, we also try to be realistic and very loving. So during times of extreme Seperation Anxiety, we set a policy of telling Meg that she would have to attend school, camp, babysitter, time with dad - some activity everyday. However, in reality, we dialed it back a LOT. We would pull her out for lunch, and keep her for a long time, take her to other activities and stay with her, start the day really late, etc - but we never expressed it as an accomodation to anxiety. So she would feel like life was going on as normal, but in reality, we were asking very little from her. We called it "bravery work". And in her "real" life, she loved all activities. So we held onto that image of Meg, and assumed that the "new Meg" was not real, and that underneath it all, she still wanted her life. We just had to fight for it.

 

We also visited with every person that would be with her - ahead of time - and explained seperation anxiety and OCD, and how we needed immediate help when we arrived, with a quick calm seperation, and that they needed to immediately give her something to do. In Meg's case, she likes to "help", so we had them give her a helpful task, like counting taking attendence, handing out papers - whatever, to keep her moving immediately into another activity instead of just curling up in a corner and crying. This was often very difficult, but if they could keep her moving, she would normally keep going. I spend a lot of time crying in my car while waiting to see if she would make it. It was not easy. We had great "team members" in teachers and counselors and other moms, and they would text or call me once the storm passed. It was usually ok in 20 minutes and then she would actually enjoy her time there and be glad she went. Then we would reinforce that and role play it afterwards. Eventually, while still hard, she could gather her courage to go into activities more independently. I don't think we could have done this without an amazing community of support around us, that did not flinch when she seperated from me while screaming, and put their whole hearts into helping her. If she was sitting in the corner crying all day, there is no way I could have kept sending her. She ended up having fun almost every time - or enough fun to satisfy me that we were doing the right thing. I found that giving others very specific tools to help her was the best thing - just a little info about her illness & then a tool to help. Some days, I felt like every single activity was deliberate - like every second of the day was designed around therapy for her. If we sensed that a caregiver was not supportive - then we bailed on that activity & found another alternative without involving Meg until the plan was done. We had no time or energy for anyone that was not on our team. I became "one of those moms" .

 

Meg had sudden onset of panic attacks, agoraphobia, sep anxiety, sensory issues and severe OCD. We spent evenings mapping out the next day's plan - what she would do, how much we would expect from her, what would be the next baby step forward, what was too much, what was the reward. And then when she awoke, that was it - the plan was the plan, and we put our full confidence into it. If it took 2 hours to get out of the house, so be it, we were not quitting. However, there was very little beyond "fun" that was expected of her during that time. No cleaning, no homework, no independent play - I could have cared less what or when she ate, so long as she did get food - I did not care about a clean room, or about tantrums - or handwriting - or chores. That was all off the table. We cooked, cleaned & catered to her physical needs without really letting her know that we were doing it - usually in anticipation of the need. And we had a fun reward for every accomplishment. One hard thing - like going to school - might earn her a night to sleep with me. So we'd avoid a known trigger (sleeping alone) as a reward for courage, instead of as a reward for anxiety.

 

I can't tell you how many times I was ready to quit on something - and then she would finally do it and her face would light up & she would be so proud of herself. We learned a way to talk to each other, so that she could tell me if "Meg wanted to do something" and "if OCD was just telling her not to do it". That way, she could acknowledge how badly she wanted to go to the birthday party (or whatever) but how hard it was. So we were always "fighting OCD (or anxiety)" not fighting with Meg. We always tried to be a team, if that makes sense. If we had not done this strategy, she would have been completely homebound for 3-5 months - so in some ways, perhaps her severity required a stricter approach. I can't speak to that - for us, if we gave OCD an inch, it took a mile. We had to hold the floodgates closed, if that makes sense. I really pray that if there is a next time, that antibiotics, Pred, IVIG if necessary - will allow us to be more flexible and not quite so desperate to hold onto her life.

 

In a mild phase, then we are flexible, but still have some basic requirements around school and also homework - and around self care. I agree with Mati's Mom - confidence in our decision was key for us - both my husband & I had to be on the same page. Also, whatever the decision to bail from something, to not make it about anxiety, but to give it a different name, so it can't become manipulative.

 

I am left with a lot of PTSD from this time frame - I am still amazed when she gets out of the car in the morning & walks into school. I am amazed when she feels the fabric wallpaper in a hotel without freaking out about germs, for heavens sake! I hold my breath every time a child around her sneezes, or if Meg looks at her food the wrong way. But Meg's memory of the worst time this summer, is not as bad as mine. She remembers more about courage than about panic and fear. I think maybe it's like giving birth - you kind of forget how bad it was after it is over. Well... she forgets. I can't.

[peglem]

And we had a fun reward for every accomplishment. One hard thing - like going to school - might earn her a night to sleep with me. So we'd avoid a known trigger (sleeping alone) as a reward for courage, instead of as a reward for anxiety.

Great idea!

 

But Meg's memory of the worst time this summer, is not as bad as mine. She remembers more about courage than about panic and fear.

How wonderful that you were able to help her feel more competent, less helpless through all of this. You're a terrific mom!

 

Sorry about the PPSD for you...

 

Something else that struck me about your post is that you mentioned how badly Meg WANTED to do things, even though the anxiety levels were huge. This is something that I think is largely misunderstood with our kids. People think they are having tantrums/meltdowns/rages (pick one) because they DON'T want to do something...But, i have seen this crap get in the way of things I know my child wants badly to do.

[Megs_Mom]

Something else that struck me about your post is that you mentioned how badly Meg WANTED to do things, even though the anxiety levels were huge. This is something that I think is largely misunderstood with our kids. People think they are having tantrums/meltdowns/rages (pick one) because they DON'T want to do something...But, i have seen this crap get in the way of things I know my child wants badly to do.

 

This was the biggest thing we learned - was that underneath all the anger and fear, was that Meg was still there - still wanting to do well, and to have fun. But paralyzed by fear. So we had to learn to talk about it, and to discuss why we were asking her to do things that we knew she wanted to do. It was a tightrope. It was the hardest thing to have other people watch, as it looked like I was forcing her to do things she did not want to do. We just had to hold that picture of her in our heart, and we were nearly always right, and Meg was pretty much always glad that she succeeded.

 

It's funny - just recently, I am learning some things I missed - that she refused and said that "she did not like" - but really they were just fear based during an episode, and then they became "things Meg does not like". Mostly foods, so far - apple juice, smores, and now cotton candy. I need a street fair! She is ready to try cotton candy!!! All of the sudden she is telling me things that she thinks she might like to try again.

 

I wonder how many kids miss out on things because we see their fear as a real dislike, instead of seeing the child hi-jacked underneath? I feel very fortunate in some really wierd way that our onset was sudden and severe. So we could see very clearly the before and after of Meg. But if the onset were gradual, many things would have become gray - that for us were black & white. Even with the sudden and extreme onset - over the 15-18 months that this went on, we still lost some of the details around the edges.

 

As an example, Meg quit ballet. She had good reasons and went to another activity so I had to respect her. And she did not quit mid-season - she saw it through. But to this day, I do wonder if much of her deciding to give this up was due to the stress of "holding her hands a certain way" that just ultimately took all the joy out of this activity (OCD did not like these hand positions, and she was constantly trying to find different ways to hold them or having to do mental compulsions to reverse them). We compromised by agreeing to consider ballet again next year (just take a break, not "quit") and to do a summer camp for a week next summer. That way, at least she'll have another chance to "make up her own mind", now that she can do as she wishes with her hands. Whatever she decides will be fine by me - so long as she is deciding!!!

[peglem]

I'm so glad your post reminded me of this. Time and time again I hear about "task avoidance" at school. I'm looking at that in a new light now. Getting her through the fear is so difficult, especially since her communication is so poor. I do see her trying at times to overcome it, work through it, as I coach her.

[smartyjones]

Success!! Thanks so much for your thoughts and words. Meg's mom - you are a font of good information! Thanks for pouring your heart into your posts - i always learn so much from you. Isabel - you are so right about the executive decision and staying with it.

 

i am not sure what was the 'magic' bullet - we gave him motrin last evening and this morning. we had gotten some new clothes and shoes over the break - we focused on getting dressed in new stuff in the am. he had his favorite breakfast. we tried to talk about steps but it was loose b/c of too much time in between - first school day after flu was friday before thanksgiving, he drove with father and brother but didn't go. last monday was school conferences and he played in the after-care room for 1 hour. today's step was going all day - which for him is 1/2 day.

 

he left the house and got into the car fine, simply saying he didn't want to go. was quiet on the drive. as we approached, he said he'd go 'tomorrow'. (frightening - i know tomorrow really is delay for never!) i was able to be calm and quick. i carried him in reminding him of story we wrote in the beginning of the year based on the book Brave Ben about facing fears - it's cute, Ben walks through the forest and sees a spider, dragon and witch. he laughed. we got into the room and the teacher took his hands and i said good-bye and left as he was crying and laying on the floor. they said he was okay after more kids started coming and was fine for the day.

 

so true that if you give OCD/anxiety an inch, it takes a mile. i'm hopeful we'll be okay with school b/c he got there today. we go to naturopath today and ped tomorrow.

[matis_mom]

Success!! Thanks so much for your thoughts and words. Meg's mom - you are a font of good information! Thanks for pouring your heart into your posts - i always learn so much from you. Isabel - you are so right about the executive decision and staying with it.

 

i am not sure what was the 'magic' bullet - we gave him motrin last evening and this morning. we had gotten some new clothes and shoes over the break - we focused on getting dressed in new stuff in the am. he had his favorite breakfast. we tried to talk about steps but it was loose b/c of too much time in between - first school day after flu was friday before thanksgiving, he drove with father and brother but didn't go. last monday was school conferences and he played in the after-care room for 1 hour. today's step was going all day - which for him is 1/2 day.

 

he left the house and got into the car fine, simply saying he didn't want to go. was quiet on the drive. as we approached, he said he'd go 'tomorrow'. (frightening - i know tomorrow really is delay for never!) i was able to be calm and quick. i carried him in reminding him of story we wrote in the beginning of the year based on the book Brave Ben about facing fears - it's cute, Ben walks through the forest and sees a spider, dragon and witch. he laughed. we got into the room and the teacher took his hands and i said good-bye and left as he was crying and laying on the floor. they said he was okay after more kids started coming and was fine for the day.

 

so true that if you give OCD/anxiety an inch, it takes a mile. i'm hopeful we'll be okay with school b/c he got there today. we go to naturopath today and ped tomorrow.

That is great! So glad you stuck to your plan!

[Stephanie2]

My son is also 5 and I struggle with this from day to day b/c even when we have the pandas under control we have have some "yeast issues" which cause a different type of behavior problem. What I do is increase/decrease my expectations based on each day. I have a discipline program that I do (Accountable Kids) that involves having chore cards and earning tickets/privileges, etc... I expect him to do his basic chores (getting dressed, brushing teeth, etc...) on a rough day but I don't push the othe chores (take out the recycling, pick up toys, etc.). Also, on the good days I expect him to do as much as he can by himself, but on the bad days I will literally dress him myself while he stands there or lays there, as long as he cooperates and doesn't fight me. If he fights me I walk out of the room and come back when he is "ready to cooperate". Only you know what he is capable of each day. It's hard, but I am getting good at finding the right balance. We are not making the progress I would like at the age of 5, but when I see how well he responds on his good days, I know that in the end he will be able to function independently one day (my goal is that he is dressing himself and doing all his chores by the time he leaves for college...LOL!).

 

 

Stephanie

 

looking for opinions -- looking for the best way to draw the line on behaviors that are pandas-related but also need to get over them for future best functioning.

 

my son - 5- had been doing great. unfortunately, we had a perfect storm in the past few weeks. we changed his homeopathic protocol b/c that is what the plan was. about a week-ish later, he got the flu. still don't know if that was b/c of medicine change or in spite of it - i think it's all coincidental that everything happens at once. have seen some exacerbation of behaviors - not too bad. he seems to be pulling out of it now. we go to the dr tomorrow.

 

one of his biggest issues is separation anxiety/phobia of new or different situations. today, he didn't want to go to church (very fun program, usually likes) b/c i usually go but i was staying home today to do work(i do transcription from home). he just couldn't make it to go with brother and father. we suggested papa stay in the room with him - still didn't go for it. delay getting dressed/fought leaving house/fought buckle seat belt - much crying/screaming. i am concerned b/c school is tomorrow after a full week of vacation plus 3 days prior that he missed from flu. he's saying today that he doesn't want to go to school.

 

i do think he's improving health-wise, but not back to where he was prior to flu. i tend to get uptight in how much to 'allow' the anxiety b/c i don't want it to spiral out of control.

 

after this morning, i'm tempted to say b/c he has dr appt tomorrow, we could have a few more days out and see if he improves but am also scared that this first day staying out will morph into weeks of refusing school. the school can be helpful but they don't really get pandas. they look at it that if he choses to cry in the corner all day, that's his choice and he can also choose to participate. i know i don't want him crying in the corner b/c i don't think it's his defiant, obnoxious choice, i think it's anxiety based. i cannot do small steps with them such as 1 hour/day - they want an all or nothing. psych suggested going last hour if troublesome - they may go for that b/c psych recommended but that would be some back and forth discussions - doesn't help me with tomorrow.

 

he's not in full exacerbation that i would think 'all bets are off, he's sick' but i am willing to give him leeway but am worried too much rope will hang us both. how do you determine where to draw the line?

[britneymag]

I'm so glad your post reminded me of this. Time and time again I hear about "task avoidance" at school. I'm looking at that in a new light now. Getting her through the fear is so difficult, especially since her communication is so poor. I do see her trying at times to overcome it, work through it, as I coach her.

 

 

This makes so much sense to me now. My daughter has been rushing through her work and is willing to take a bad grade rather than redo something. this is not how she normally is and I asked her about it today. She told me that she wants to hurry up and get it done so she doesn't have to worry about it anymore. Her big thing right now is worrying. I guess she thinks that if she can get past it she can put it out of her mind.

 

I am just trying to get DH on board with this. He thinks that she just doesn't care about her work. he believes in PANDAS but he won't read any of the research so he thinks that I am just making excuses for her. I have had to explain to him that everything right now revolves around PANDAS and she is not a normal child. Her Tics are bad again even on the antibiotics but I think she was exposed to strep last week. We see a neurologist in February that treats PANDAS but until then, we just have to work with what we have as far as antibiotics go.

 

Melanie