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My daughter will not go anywhere there is people. She has severe nausea & GI complaints that gets really bad when in motion (car,exc). I'm working on her fear of vomiting by taking small drives with her each day to a store she would like to purchase something. Then we sit in the car while she cries because she can't go in. I even try coaching her to walk to the door and back to the car - but unsuccessful :( If I force her she goes in to fight/flight mode.

 

I can't get her to any doctors. I can't get her in for tests. I can't get her to the psychologist. I'm sorry - just deflated right now.

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Philamom-

 

So sorry.

 

My daughter had extreme fear of vomiting in public (particularly school) last year. We tried everything- local therapists, patience, tough love. Ugh- nothing worked.

 

We finally got her to a therapist extremely experienced with ocd, and after three weeks of daily appts, her fear was gone.

 

In retrospect, we were not doing the right things to help her. I wish we had gotten her to this therapist sooner. The KEY for us was Exposure therapy. It was not easy, but it was easy enough, and it worked.

 

BTW- you are not alone, I had one prominent therapist tell me fear of vomiting is the most common theme in her office (her and several partners).

 

We had done GI evals the year prior- the only physical issue for her was the pandas/ocd. Not sure if this is your case... is she vomiting frequently?

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She had this same problem two years ago, where it took us three months to get out of the house. Back then it was an extreme fear of getting into the car and vomiting. After a rotation with some antibiotics and a plan from a psychologist, we were succussful. But back then the abx helped with most of the stomach issues, so it was a little easier at addressing the fear part. She is not on medicine right now.

 

When this started to rear its ugly head in Nov/Dec, we talked about vomit, sang songs, made jokes about it. But then her nausea got really bad and now she cries when you mention it. Her problem is she doesn't vomit - hasn't for a long time- except for one time, two years ago when she got sick in a cup in the car. That's what started the fear. I mention if she was a child who vomited a lot she would realize it s#@$ks, but not the end of the world.

 

How can I apply ERP without the vomiting? thx

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She had this same problem two years ago, where it took us three months to get out of the house. Back then it was an extreme fear of getting into the car and vomiting. After a rotation with some antibiotics and a plan from a psychologist, we were succussful. But back then the abx helped with most of the stomach issues, so it was a little easier at addressing the fear part. She is not on medicine right now.

 

When this started to rear its ugly head in Nov/Dec, we talked about vomit, sang songs, made jokes about it. But then her nausea got really bad and now she cries when you mention it. Her problem is she doesn't vomit - hasn't for a long time- except for one time, two years ago when she got sick in a cup in the car. That's what started the fear. I mention if she was a child who vomited a lot she would realize it s#@$ks, but not the end of the world.

 

How can I apply ERP without the vomiting? thx

Philamom: Just want you to know I'm thinking of you and that dear girl of yours'. I admire you so much; the supreme unconditional love you have for your beautiful daughter. That's all, with love.

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What do you mean "how can I apply ERP without the vomit?"

 

Does she vomit if you attempt ERP? I was under the impression she doesn't vomit too frequently?

 

To be honest- my daughter really needed someone other than me to do the ERP. She is 11, and very smart, and has lost the thought that I know everything- she really wants to deal with a "professional".

 

It has been very hard for us to find someone who REALLY understands ocd. We have to travel to FL for that :(

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I just read my post again. I apologize it came off rude, it was not my intent at all. I'm just a little tired - not sleeping well. I was hoping maybe you (or anyone) could help with some examples/suggestions on how to address it with ERP until I get my daughter to see a psychologist or find one to come to the house.

 

Her nausea and GI complaints started in Sept. when she was taken off antibiotics, and have since gotten worse. On Dec 31st, it became really bad and that's when she stopped leaving the house. I spent all of last week waiting for daily phone calls from doctors (y'all know the drill) that either didn't happen or came at the end of the day. I couldn't work on getting her out of the house untill after the phone calls because I needed the privacy to speak. You now what happens if you miss a specialist call - and it can come any time between 9-7 :( So didn't get to work on getting her out of the house. The last two days she was put on meds in an attempt to get her to Dr. B, but they just made her loopy and more nauseated -and her fear is too strong.

 

So the ERP begins today. I have gotten her to take short drives in the car (which two weekends ago was not do-able). Now I need to get her to walk into stores. I think the best approach is to have my husband come and help force her to walk to the door (or half way there), and try and push forward from there? I can't do it alone because when she becomes scared with the fear/flight reaction, I don't have the strength to force her. Is this an ERP I can work on until she sees someone? If she vomits when we're trying this, is it a step she needs to go through in order to help overcome the fear? The last time she vomited was two years ago, and maybe two or three times when she was younger. When she was younger, she vomited (projectile) in a dry cleaners, which caused a strong reaction from the workers, and myself unfortunately (this was before PANS).

 

Would welcome any suggestions? Thank you!

 

Also- still working on the medical part of all this. Her lyme is still active (new borrelia culture shows this), she had elevated Dnase since Sept - just recently went back down in 200's, she has elevated ANA, sed rate, c-reactive protein, and other abnormal labs we are trying to figure out.

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I don't know if this will work for you DD, but with my kids, they named their OCD/fear - DS had "stupid guy" and DD has "worry fairies". Even tho DS has now outgrown the name and just calls it OCD, he grasps the idea of naming/externalizing the OCD so that it's a third party - an enemy that is not part of the real "him".

 

Anyway, when DD is fighting a fairy and seems to be losing the battle, she'll plead with me to give in, or to do the fighting for her (which is of course impossible). I'll tell her that we both know the fairy is just trying to scare DD into giving the fairy all of her attention and I will not participate in the OCD fear because I will not help the fairy win. I'm not being mean by insisting DD do something scary - I'm telling the fairy no.

 

It's not always successful, but it's a mindset I adopt that helps me not give in to the tears and fears. The only way to overcome the fear is to stand up to it. Give in and it just gets bigger. Tell it no and you feel empowered. So for the store, you let her know you won't let some fairy control your life. The fairy is a bully. Now, it also has to be manageable steps. Maybe it's only walking into the store and then immediately leaving and that's your success for the day. Make sure you celebrate it of that was the agreed upon goal. If she fails, tomorrow's goal can be walking to the entrance but staying outside - maybe tapping the "open door" sensor with her foot, then leaving. DCMom is the resident expert so she may have better step by step plans. But making the OCD a third person bully has helped my kids.

 

On a separate note - have you looked into inositol or SAMe or NAC? Would they be things to consider? Also, not sure if your DD can do motrin, given her GI sensitivity, but if she can, give motrin 30-45 min before you go to the store. Motrin effects my kids in dramatic ways and makes things much more bearable for everyone.

 

Thinking of you.

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Thank you LLM. I'll try the stupid fairy today. I just wish the fear outweighed the actual nausea. In the beginning, she was working on fighting the fear - pushing to go somewhere to receive a reward at the end. She knows (well at least at that time) she needs to face the fear head on or it will get bigger. But when the car starts moving she becomes extremely nauseated (vertigo like) and her face becomes pale white. I feel if I push too hard, she will either vomit or faint. I feel like I'm putting her on the tea cups and telling her she needs to endure it. I hope I'm not making excuses. I guess I need to find the balance between the fear and the actual sickness and push through. I need to get her to doctors.

 

Thank you - love reading examples - very helpful.

Edited by philamom
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Philamom- So sorry about what you are dealing with!

 

I will give you my dd's story- take from it what helps....

 

DD had a sudden onset of pandas (we didn't know at the time, took us about 6 mos to figure out). A lot of her fears over the last three years have centered on getting sick/ vomiting.

 

Initially, she complained daily of stomach aches. Her stomach "hurt" when she was hungry, when she was eating, after she ate, when she needed to have a bowel movement, etc. We eventually (after lots of gi work, and an "aha" moment) realized that her stomach "hurting" was actually more of a sensory issue. Just like her sister became "sensitive" to clothing, she was sensitive to ANY motion in her digestive system. It is a chicken and egg question, but OCD wrapped tightly around this sensory stuff. She headed toward becoming agoraphobic. My once "always want to go out" kid did anything to stay home. She was afraid her stomach would hurt, or she might vomit, out.

 

Things eventually got better on their own.

 

Then she got sick the next year and the sh on toast hit the fan, so to speak. She had panic attacks every night. She would barely eat and would not leave the house. She spent much time in the bathroom, because the ocd told her she wouldn't vomit if she was in there. Things went from bad to worse, and we had pex.

 

The next year, she had a milder onset of pandas. We treated medically immediately, and most stuff resolved. She had one issue of fear of vomiting. Her fear went a little further- she was afraid she would vomit, people would see, and she would be embarrased. Initially, this was EVERYWHERE. However, things did calm down as we went places. But- it stuck at school. So much so that she basically missed half of the year last year. We worked with the school and a therapist. She had homebound instruction and at the same time we were slowly forcing her back to school, one period at a time. It was horrible. She would "white-knuckle" it through her time at school- panicked the entire time.

 

This summer we went to USF for three weeks of therapy. Our therapist was AMAZING. I cannot say enough about him. Basically, we were not doing the right thing for Caroline by just pushing her back to school one step at a time. We were kind of doing the response prevention with out the exposure maybe.

 

At Florida- she was EXPOSED to her fear, starting smaller and moving up. Everyday was uncomfortable (if it isn't uncomfortable, its not going to work)- yet not too much to bear. Our daughter was a little different, because in addition to the vomiting fear, there was the fear of embarrassment. After we did all of these things- she was fine. SHe went back to school with next to no anxiety, and within a week or two it was like she had never had the ocd. Amazing.

 

Here is what we did/ learned in FL:

 

She is afraid of throwing up and being embarrassed. Well, we cannot say for sure that won't happen. But what we do know for sure is that if it happens she will be able to handle it. People throw up in public, it is not fun, it is embarrassing, but they deal with it and move on.

 

OCD is an illness, like (lets say) cancer or diabetes. It sucks to have it, no question. But, thankfully there is treatment that we know works. Treatment is not optional. If she (dd) had cancer- she would not question the cancer doc and we would not let her decide if she gets chemo. We needed to start looking at ocd this way.

 

Her exposures, in this order (remember if they are easy, they are not the right ones, all of these were met initially with resistance from daughter). Say the word throw up. Say the word throw up to strangers. Write the word throw up. Look at photos of vomit. Look at photos of people vomiting. Look at videos of people vomiting. (Yes there are some great resources on the internet- youtube, vomit girl on you tube, and our favorite- ratemyvomit.com.) She writes a scenario of her vomiting in school. She writes a scenario of her vomiting in school and reads it to a stranger. She tells a stranger about a time she vomited at school, and they ask questions. Make fake vomit. Take a photo of herself with fake vomit on her shirt and hang it on her mirror. The culmitnation was making fake vomit and putting it on the floor of the kitchen in the hospital, and asking the receptionists to come see and clean up her vomit.

 

I am not sure if these are the correct exposures for your daughter, but they will give you some ideas. Our FL therapist was very blunt and honest with our daughter- which was refreshing and inspiring. We have not before, nor since, been able to find a therapist knowledgeable, experienced, tough and matter of fact enough for us.

 

I learned SO much. But, I will say that my daughter still needs a therapist to bring her through these exposures and not me. For us, it complicates things and creates arguments. When we have the doc laying out what needs to be done, I can follow through with her and she is cooperative. I think because she is smart and her age- she does not always take our word for things- but she much less questions a professional. Of course the therapist is not emotionally involved also. Our therapist was VERY matter of fact, this is no big deal, and I have seen kids with WAY worse issues than you....

 

I wish I could be of more help. I assume you are in Philly. Did I hear Drexel had a program? Personally, my advice would be not to fool around with an unproven psych. Get in contact with Dr Eric Storch at University of South Florida- I think he knows someone at Drexel. We spent six months fooling around with local inadequate psychs, when three weeks in FL did the job.

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For what it's worth, didn't President Bush throw up on the lap of the Japanese prime minister?

 

Also, would those wrist bands or other types of devices that help with nausea help at all?

 

And a question FROM me:

 

if my son has really really mild compulsions (no obsessions, I don't think) and the compulsions don't interfere with his life at all -- just like an extra tap here and there, or checking underneath the drinking glass once before he drinks (every time, but still, adds only about 2 seconds to his activity) would you still suggest finding a good ERP doc?

 

Thanks.

 

Philamom- So sorry about what you are dealing with!

 

I will give you my dd's story- take from it what helps....

 

DD had a sudden onset of pandas (we didn't know at the time, took us about 6 mos to figure out). A lot of her fears over the last three years have centered on getting sick/ vomiting.

 

Initially, she complained daily of stomach aches. Her stomach "hurt" when she was hungry, when she was eating, after she ate, when she needed to have a bowel movement, etc. We eventually (after lots of gi work, and an "aha" moment) realized that her stomach "hurting" was actually more of a sensory issue. Just like her sister became "sensitive" to clothing, she was sensitive to ANY motion in her digestive system. It is a chicken and egg question, but OCD wrapped tightly around this sensory stuff. She headed toward becoming agoraphobic. My once "always want to go out" kid did anything to stay home. She was afraid her stomach would hurt, or she might vomit, out.

 

Things eventually got better on their own.

 

Then she got sick the next year and the sh on toast hit the fan, so to speak. She had panic attacks every night. She would barely eat and would not leave the house. She spent much time in the bathroom, because the ocd told her she wouldn't vomit if she was in there. Things went from bad to worse, and we had pex.

 

The next year, she had a milder onset of pandas. We treated medically immediately, and most stuff resolved. She had one issue of fear of vomiting. Her fear went a little further- she was afraid she would vomit, people would see, and she would be embarrased. Initially, this was EVERYWHERE. However, things did calm down as we went places. But- it stuck at school. So much so that she basically missed half of the year last year. We worked with the school and a therapist. She had homebound instruction and at the same time we were slowly forcing her back to school, one period at a time. It was horrible. She would "white-knuckle" it through her time at school- panicked the entire time.

 

This summer we went to USF for three weeks of therapy. Our therapist was AMAZING. I cannot say enough about him. Basically, we were not doing the right thing for Caroline by just pushing her back to school one step at a time. We were kind of doing the response prevention with out the exposure maybe.

 

At Florida- she was EXPOSED to her fear, starting smaller and moving up. Everyday was uncomfortable (if it isn't uncomfortable, its not going to work)- yet not too much to bear. Our daughter was a little different, because in addition to the vomiting fear, there was the fear of embarrassment. After we did all of these things- she was fine. SHe went back to school with next to no anxiety, and within a week or two it was like she had never had the ocd. Amazing.

 

Here is what we did/ learned in FL:

 

She is afraid of throwing up and being embarrassed. Well, we cannot say for sure that won't happen. But what we do know for sure is that if it happens she will be able to handle it. People throw up in public, it is not fun, it is embarrassing, but they deal with it and move on.

 

OCD is an illness, like (lets say) cancer or diabetes. It sucks to have it, no question. But, thankfully there is treatment that we know works. Treatment is not optional. If she (dd) had cancer- she would not question the cancer doc and we would not let her decide if she gets chemo. We needed to start looking at ocd this way.

 

Her exposures, in this order (remember if they are easy, they are not the right ones, all of these were met initially with resistance from daughter). Say the word throw up. Say the word throw up to strangers. Write the word throw up. Look at photos of vomit. Look at photos of people vomiting. Look at videos of people vomiting. (Yes there are some great resources on the internet- youtube, vomit girl on you tube, and our favorite- ratemyvomit.com.) She writes a scenario of her vomiting in school. She writes a scenario of her vomiting in school and reads it to a stranger. She tells a stranger about a time she vomited at school, and they ask questions. Make fake vomit. Take a photo of herself with fake vomit on her shirt and hang it on her mirror. The culmitnation was making fake vomit and putting it on the floor of the kitchen in the hospital, and asking the receptionists to come see and clean up her vomit.

 

I am not sure if these are the correct exposures for your daughter, but they will give you some ideas. Our FL therapist was very blunt and honest with our daughter- which was refreshing and inspiring. We have not before, nor since, been able to find a therapist knowledgeable, experienced, tough and matter of fact enough for us.

 

I learned SO much. But, I will say that my daughter still needs a therapist to bring her through these exposures and not me. For us, it complicates things and creates arguments. When we have the doc laying out what needs to be done, I can follow through with her and she is cooperative. I think because she is smart and her age- she does not always take our word for things- but she much less questions a professional. Of course the therapist is not emotionally involved also. Our therapist was VERY matter of fact, this is no big deal, and I have seen kids with WAY worse issues than you....

 

I wish I could be of more help. I assume you are in Philly. Did I hear Drexel had a program? Personally, my advice would be not to fool around with an unproven psych. Get in contact with Dr Eric Storch at University of South Florida- I think he knows someone at Drexel. We spent six months fooling around with local inadequate psychs, when three weeks in FL did the job.

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Does USF still have their skype program to help people who can't travel, whether due to cost or OCD fears? If you have the info or a link or a contact number, can you post it?

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Nausea and stomach pain are one of my daughter's bart symptoms. We stopped bart treatment (except for A-Bart) two months ago as her bart symptoms had mostly resolved and started to address lyme. Over the last 2 months all of her bart symptoms have begun returning, motor tics, repeating sentences under her breath after she has spoken, long bone pain, stomach pain and nausea. She doesn't have a fear of nausea, but tells me it's there. She also has a lower tolerance for swinging/spinning.

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