Introduction of DD6

[susie]

I've been lurking for a few months now and have learned so much from all of you. Thank you so much for this great forum!

My DD6 was recently diagnosed with Pandas. Her main symptoms have been tics, high anxiety, and some of the miscellaneous things that I've heard others talk of like blowing spit bubble and mood instability and anger. She hasn't had any "classic" OCD symptoms, at least that I can recognize (hand washing, organizing).

I would like some opinions though on a couple of things I can't figure out how to handle. She has become obsessed with matching clothes with her friends when she goes to meet one for a play date or at gymnastics. If her friend is wearing shorts and a tank top, then she must do the same or she will not be able to get it out of her head and enjoy herself. We now take large bags of clothing wherever we go so she can change. When I've asked her what bad thing will happen if she doesn't change, she says that she feels like she's going to burst . And she definitely acts like she might explode. So, does this seem like OCD? Am I making a mistake by catering to her obsession? At this time, our other alternative is to just leave the play date (with her screaming of course). She's seeing a counselor for the anxiety and I went over this with her, but she didn't seem to have any suggestions. I don't know what to do. I really really HATE PANDAS!

Thank you for reading.

[Megs_Mom]

Hi Susie – wow, great catch! Yes, that is OCD – you must be a very intuitive mom! The obsession is to “match”, the compulsion is to bring the clothes with you and to change. You know it is OCD because if the compulsion is not followed, she will “burst” and the resulting anxiety will ruin the play date. Allowing her to bring the clothes is called “accommodation”, but it’s not as bad as it sounds. When OCD comes out of no-where, like it does in PANDAS, we all get caught up in the OCD, as we don’t have any tools to deal with it (it is often counter intuititive to normal parenting) and it can be so severe that it feels like there is nothing to do but reassure. I am not a therapist, just a mom – but the below are some things that worked for us, and that you can read about in books to learn how to do at home – or you can do with a good therapist. If you have a therapist that is not suggesting these kinds of “erp” steps, then you may want to interview some others. Most therapists understand anxiety – but OCD is more than anxiety and can be harder to treat if you don’t understand it.

 

First, I assume you dd is getting some medical treatment (abx? Motrin?), so I’ll just focus on the therapy here.

Therapy for OCD is called ERP therapy – Exposure and Ritual Prevention – and it does NOT mean going cold turkey on accommodation. The first step is CBT for OCD – which means educating the child about what is happening in her brain. This is important, as realizing that they are being “attacked by OCD” and that they can “fight back” and that it happens to tons and tons of kids, will help normalize their experience, and help them gain courage to use some tools to fight against the OCD.

 

The next step is to break the ritual down into tiny steps. When you first do this as a parent, it seems overwhelming. It’s just one big mess and how will they ever take the first step?! Well, as an example, in this situation, you would spend 4-5 days with your daughter, setting up a fear thermometer (how scary from 1-10 would “not doing a compulsion” be) and then discussing baby steps and ranking them from 1-10. I always start by telling my daughter that I am not going to force her to do any of the things that we discuss. That if she wishes to do them, that it will be her decision (actually, I am going to reward the heck out of her, but let’s hold that for a sec). Oh, and you might call the thermometer the “burst” thermometer if that helps her identify the feeling better. (This kind of OCD is often called “just right” ocd, and it is not really a feeling of fear – more a need to feel a certain way. The process of allowing your body to adjust to the OCD feeling is called “habituation”. If you want to know how this feels yourself, here is a cool exercise. Take your finger and run it the wrong direction in your eyebrow, from your cheek to your nose, messing up those hairs. Now, see how long you can leave it that way.)

 

In this case, you might have some of the following in her fear hierarchy:

• Don’t take any clothes to a play date, don’t change – fear rank of 10

• Take clothes with me to a play date, don’t change – fear rank of 10

• Take clothes with me to a play date, change only my shirt – fear rank of 8

• Take clothes with me to play date, change only my shirt & shorts (not socks, shoes, headband, etc – list them all) – fear rank of 7

• Etc….

• Take clothes with me to a play date, change everything except my hair band – fear rank of 2

You might even have to break some steps down into minutes – ex: take clothes with me to a play date, change everything except for a hairband for 30 seconds (1 min, 2 min, 5 min, etc). Any compulsion can have a million steps in it – as tiny as you can think of! And you really don’t have to know the “reason” for the compulsion. That’s why I like “physical” compulsions – there is always something to change about them. Mental ones are harder – but you can still do it.

 

Once you have found a step that is only a 2 – something that SHE thinks she can tolerate. Then set up a reward program for her, based on something that she wants to do. You might feel weird rewarding her for not wearing a hair tie for 30 seconds – but you are trying to slowly build up her confidence to trust that she CAN do a harder step. Building motivation for children is hard – I think of it like jumping out of an airplane. Tell a adult that she is jumping out of an airplane tonight – and she WILL refuse! No way! Tell an adult that you are going to learn to jump off the back step – but only the bottom one – and even a kid will jump. After a few weeks, you have worked up to jumping off a small wall, then using a parachute, then flying in the plane, then looking out the window, then jumping with an instructor, etc, etc. This is how OCD feels to a child – like you are asking them to jump out of the plane at 10,000 feet. Start with a step, let it take a while. Let them build confidence with baby steps before you move to the next baby step.

 

Plan the reward with her ahead of time. I like immediate gratification for this age, and usually have a prize box with me at all times – go to Family Dollar or WalMart’s dollar section, and you can get a lot of “stuff” for $20. Then you might also add “coupons” for more TV time (we limit to 30 minutes a day of “unearned TV”, computer, game with mom, extra book at bed, getting to hold the leash for the dog – whatever is age appropriate & your child wants to do naturally – stuff like mom makes pancakes on a weekday or dad tries to stand on his head – can be REALLY motivational!) Remember, that when an effort is made, a simple hug and “wow, that was a great try, let’s take a break for 5 minutes and then see if you can take off the hairband for 30 seconds when you are ready” can be very helpful as well.

 

I like the workbook “what to do when your brain gets stuck” – available on amazon – it’s awesome to read with your child, and it gives you good ideas as well. Sorry for the long post – I love making up OCD hierarchies – and this one is a different one than the usual!

 

I’m so sorry your child has PANDAS. It is an awful disease! Our daughter had severe sudden onset OCD that caused panic and agoraphobia on top of the compulsions and rituals. Reassurance and avoidance were big in our house. Breaking down the rituals became a part of how we lived. Once we FINALLY got medical help, the ERP became much easier to do, and really helped us break through the last habits of OCD. Now we use it as a tool during “blips”, as my daughter (thus far) has remained chronic PANDAS with small blips breaking through right before any respiratory illness. We know she is getting sick about 3 days before she shows any signs of it! But between a medical strategy and ERP, it is not a huge issue. Hope your child responds to medical treatment at 100%!!!

[thereishope]

Susie, welcome to posting! Meg's Mom is so well versed on OCD, she is the perfect person to answer your question(s). Along with what she has already posted, here is a link to OCD in young children as seen by parents on this forum. Perhaps after reading it, you will see other tendencies your daughter may have.

 

Signs of OCD in a young child

http://www.latitudes.org/forums/index.php?showtopic=6153&hl=

[susie]

Hi Susie – wow, great catch! Yes, that is OCD – you must be a very intuitive mom! The obsession is to “match”, the compulsion is to bring the clothes with you and to change. You know it is OCD because if the compulsion is not followed, she will “burst” and the resulting anxiety will ruin the play date. Allowing her to bring the clothes is called “accommodation”, but it’s not as bad as it sounds. When OCD comes out of no-where, like it does in PANDAS, we all get caught up in the OCD, as we don’t have any tools to deal with it (it is often counter intuititive to normal parenting) and it can be so severe that it feels like there is nothing to do but reassure. I am not a therapist, just a mom – but the below are some things that worked for us, and that you can read about in books to learn how to do at home – or you can do with a good therapist. If you have a therapist that is not suggesting these kinds of “erp” steps, then you may want to interview some others. Most therapists understand anxiety – but OCD is more than anxiety and can be harder to treat if you don’t understand it.

 

First, I assume you dd is getting some medical treatment (abx? Motrin?), so I’ll just focus on the therapy here.

Therapy for OCD is called ERP therapy – Exposure and Ritual Prevention – and it does NOT mean going cold turkey on accommodation. The first step is CBT for OCD – which means educating the child about what is happening in her brain. This is important, as realizing that they are being “attacked by OCD” and that they can “fight back” and that it happens to tons and tons of kids, will help normalize their experience, and help them gain courage to use some tools to fight against the OCD.

 

The next step is to break the ritual down into tiny steps. When you first do this as a parent, it seems overwhelming. It’s just one big mess and how will they ever take the first step?! Well, as an example, in this situation, you would spend 4-5 days with your daughter, setting up a fear thermometer (how scary from 1-10 would “not doing a compulsion” be) and then discussing baby steps and ranking them from 1-10. I always start by telling my daughter that I am not going to force her to do any of the things that we discuss. That if she wishes to do them, that it will be her decision (actually, I am going to reward the heck out of her, but let’s hold that for a sec). Oh, and you might call the thermometer the “burst” thermometer if that helps her identify the feeling better. (This kind of OCD is often called “just right” ocd, and it is not really a feeling of fear – more a need to feel a certain way. The process of allowing your body to adjust to the OCD feeling is called “habituation”. If you want to know how this feels yourself, here is a cool exercise. Take your finger and run it the wrong direction in your eyebrow, from your cheek to your nose, messing up those hairs. Now, see how long you can leave it that way.)

 

In this case, you might have some of the following in her fear hierarchy:

• Don’t take any clothes to a play date, don’t change – fear rank of 10

• Take clothes with me to a play date, don’t change – fear rank of 10

• Take clothes with me to a play date, change only my shirt – fear rank of 8

• Take clothes with me to play date, change only my shirt & shorts (not socks, shoes, headband, etc – list them all) – fear rank of 7

• Etc….

• Take clothes with me to a play date, change everything except my hair band – fear rank of 2

You might even have to break some steps down into minutes – ex: take clothes with me to a play date, change everything except for a hairband for 30 seconds (1 min, 2 min, 5 min, etc). Any compulsion can have a million steps in it – as tiny as you can think of! And you really don’t have to know the “reason” for the compulsion. That’s why I like “physical” compulsions – there is always something to change about them. Mental ones are harder – but you can still do it.

 

Once you have found a step that is only a 2 – something that SHE thinks she can tolerate. Then set up a reward program for her, based on something that she wants to do. You might feel weird rewarding her for not wearing a hair tie for 30 seconds – but you are trying to slowly build up her confidence to trust that she CAN do a harder step. Building motivation for children is hard – I think of it like jumping out of an airplane. Tell a adult that she is jumping out of an airplane tonight – and she WILL refuse! No way! Tell an adult that you are going to learn to jump off the back step – but only the bottom one – and even a kid will jump. After a few weeks, you have worked up to jumping off a small wall, then using a parachute, then flying in the plane, then looking out the window, then jumping with an instructor, etc, etc. This is how OCD feels to a child – like you are asking them to jump out of the plane at 10,000 feet. Start with a step, let it take a while. Let them build confidence with baby steps before you move to the next baby step.

 

Plan the reward with her ahead of time. I like immediate gratification for this age, and usually have a prize box with me at all times – go to Family Dollar or WalMart’s dollar section, and you can get a lot of “stuff” for $20. Then you might also add “coupons” for more TV time (we limit to 30 minutes a day of “unearned TV”, computer, game with mom, extra book at bed, getting to hold the leash for the dog – whatever is age appropriate & your child wants to do naturally – stuff like mom makes pancakes on a weekday or dad tries to stand on his head – can be REALLY motivational!) Remember, that when an effort is made, a simple hug and “wow, that was a great try, let’s take a break for 5 minutes and then see if you can take off the hairband for 30 seconds when you are ready” can be very helpful as well.

 

I like the workbook “what to do when your brain gets stuck” – available on amazon – it’s awesome to read with your child, and it gives you good ideas as well. Sorry for the long post – I love making up OCD hierarchies – and this one is a different one than the usual!

 

I’m so sorry your child has PANDAS. It is an awful disease! Our daughter had severe sudden onset OCD that caused panic and agoraphobia on top of the compulsions and rituals. Reassurance and avoidance were big in our house. Breaking down the rituals became a part of how we lived. Once we FINALLY got medical help, the ERP became much easier to do, and really helped us break through the last habits of OCD. Now we use it as a tool during “blips”, as my daughter (thus far) has remained chronic PANDAS with small blips breaking through right before any respiratory illness. We know she is getting sick about 3 days before she shows any signs of it! But between a medical strategy and ERP, it is not a huge issue. Hope your child responds to medical treatment at 100%!!!

 

 

Meg's Mom,

Thank you so much for your detailed response. It made so much sense! I'm ordering the book you recommended today. And Vickie, thank you for the link.

I have been wondering how good my daughter's therapist is. She told me that the only effective thing for OCD is medication. She also gave me the impression that she had her doubts about pandas (even though she saw with her own eyes the change in my daughters anxiety before and after antibiotic treatment).

My daughter's medical treatment so far has been various antibiotics. Augmentin seems to work the best, but one of the doctors is worried about long term Augmentin use because of its wide spectrum of activity and the effect on gut flora. She also on high dose probiotics and we use various supplements that may (or may not) help with inflammation. I try to use the ibuprofen sparingly because she often complains of tummy aches (these started prior to antibiotics). We have an appointment on 9/1 with a local pandas specialist, so maybe then we'll come up with a long term plan.

Thank you again. I'm touched by the time you took to reply to my question.

[smartyjones]

My DD6 was recently diagnosed with Pandas. Her main symptoms have been tics, high anxiety, and some of the miscellaneous things that I've heard others talk of like blowing spit bubble and mood instability, and anger . She hasn't had any "classic" OCD symptoms, at least that I can recognize (hand washing, organizing).

When I've asked her what bad thing will happen if she doesn't change, she says that she feels like she's going to burst . And she definitely acts like she might explode. So, does this seem like OCD?

 

 

i did hear dr. k say at the OCD conference that it really doesn't matter what form of OCD manifests. . . but i still wonder about the 'cluster' of symptoms that some kids seem to have and what that may mean. what you describe is similar to my son. he presented with symptoms at age 4.5, with intense school phobia, spit bubbles, shirt chewing, mood instability; inappropriate fight or flight and oppositional defiant reactions that in retrospect were most likely reactions to just right OCD; just some slight short-term possible tics. i just have to wonder b/c there does seem to often be clusters of similar symptoms and if that is due to age of onset, area of the brain infected or what.

 

i LOVE to hear from megs mom - she is so very knowledgable and has been a great help to us!!

 

i also found help from the anxietybc.com website. there is a parent section that explains what megs mom is talking about with the fear heirarchy and some worksheets to use. my son was not at all interested in conquering anything b/c he didn't really see it as a problem. i wasn't really able to work with him to develop anything and rewards were of absolutely no interest either. i still developed a plan and was able to work it to reach the goal with one of our main issues which was potty phobia. he generally cannot handle the ultimate goal so if we were to work with something like the dressing thing you describe -- we couldn't use the whole scenario and have him participate in making a plan. we would have to have one behavior = one reward and work it on a daily basis. (the reward was usually a sticker on a train chart and that was enough for him so it didn't have to be elaborate for us)

 

one thing i really like about this 'mindset' is you can tailor it to what seems successful for your child and you.

 

good luck.

[Megs_Mom]

Meg's Mom,

 

I have been wondering how good my daughter's therapist is. She told me that the only effective thing for OCD is medication. She also gave me the impression that she had her doubts about pandas (even though she saw with her own eyes the change in my daughters anxiety before and after antibiotic treatment).

 

Ok, right there, I am seeing red!!!!! Study after study for childhood and adult OCD (not pandas, just regular OCD) shows that ERP therapy is AS effective if not more than SSRI's, and that therapy works longer (you come off SSRI, the OCD comes back - but therapy tools work for a lifetime). I'm not against medication - but that is a really odd statement. I wish therapist would just say "I don't know how to treat your child", rather than fumbling about! Ok, I am back to calm. There are no studies for PANDAS kids and the effectiveness of erp therapy - but there are studies about SSRI's and that the dose needs to start very low and to be careful to avoid activation.

 

You can show her the NIMH directors blog about PANDAS if you want to give her some real facts - there is no doubt anymore that it exists - we just need more research.

 

Did your daughter's tummy aches start around the same time as PANDAS? Our daughter's did - and we discovered stomach ulcers. Something about PANDAS/PITAND for our daughter seems to greatly increase her stomach acid, causing ulcers, reflux and stomach ache. We use Prevacid for this, but are currently in a search for how to stop this & do a more natural plan.

 

Glad this made sense, and hope to hear good things about your daughter. I'm so glad to hear that you have an appt with a specialist in September. I have similar concerns about abx long term, but the benefit we are getting now so out weighs the other worries, so we just try to keep up the probiotics for now!

[Megs_Mom]

there is a parent section that explains what megs mom is talking about with the fear heirarchy and some worksheets to use. my son was not at all interested in conquering anything b/c he didn't really see it as a problem. i wasn't really able to work with him to develop anything and rewards were of absolutely no interest either. i still developed a plan and was able to work it to reach the goal with one of our main issues which was potty phobia. he generally cannot handle the ultimate goal so if we were to work with something like the dressing thing you describe -- we couldn't use the whole scenario and have him participate in making a plan. we would have to have one behavior = one reward and work it on a daily basis. (the reward was usually a sticker on a train chart and that was enough for him so it didn't have to be elaborate for us)

 

one thing i really like about this 'mindset' is you can tailor it to what seems successful for your child and you.

 

good luck.

This is such an awesome comment that I have to add on! (SmaryJ - love you too - and you know more than me lots of the time!!!) The great thing about ERP therapy is that it is completely adaptable to each family (mom, often) and child. So you can put your personal style into the devlepment of the plan - and more importantly, use it how it will work best for your child. After all, you do know your child best. So the plan I outlined above is pretty "classic" - by the book, if you will. But you don't have to have a lot of participation from your child - and at the start you might not! You just have to know your childs limits and ability to participate - so that you can make the ERP hard enough to work - but easy enough to be successful. There are parents whose kids have Aspergers, that have been able to develop appropriate plans for that child.

 

An example of this, was during a very severe period of seperation anxiety - I won't go into the details because they still make me cry. (Obsession: my mom will leave me - good thing I am not an underconfident mom - that was a lovely one! Compulsion: be able to see/touch mom at all times). Anyway, a therapist suggested that we have her try to stay in her room alone, with door closed while I was in the hallway. She suggested 20 minutes as the goal, and that we start in 5 minute increments. Well, this was ridiculous! Even the idea of talking to Meg about being alone for 5 minutes was an impossible exposure that could trigger a panic attack! what we developed was an agreement with Meg that she could try to stay alone in her room, with door OPEN, with me in the hall immediately outside the room for 5 SECONDS! The first time we tried was a fiasco - and she ran out before I could count to one. So when we made it to 5 seconds, it was such a huge deal, and we rewarded accordingly. We practiced 5 seconds for a while before we moved to 10 seconds, then 30, then 60, etc. There was no way to do a fear heirarchy - everything was a 10. 5 seconds was our limit, and we had to build from there.

 

We have had times when even discussing OCD was an exposure. We might spend a few weeks just talking for 5-10 minutes a day about what OCD is, to build some confidence that she could help herself at some point. That alone was an exposure and was enough for that time.

 

ERP was clearly NOT a cure for us - I'm experienced in doing ERP because it was the only tool we had for way too long. It was - and remains - a great tool to help us get through rough stuff - and nowadays some minor things. There were times when OCD was literally controlling in some way, every minute of her waking hours. I hope someday she never needs one second of it again. But for us, the PANDAS seems to be chronic, and while she is in an extremely good place, we cannot yet claim 100% for a year. I hope we find the key to why & we continue to search!