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NancyD

Intrusive/obsessional worries with a need to confess

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For the past year (and some days are worse than others), my 13 yo daughter has been beseiged with daily intrusive and obsessional worries (usually over something inconsequential though she blows it out of proportion) and the only way she can get rid of it is if she confesses her worries to someone. She wants me to tell the other person and then insists that the other person not talk with her about it. Sometimes that works and other times not. And often, if she does let go of that worry, she starts all over again with something else she is worried about. It could even be something that happened two years ago. It's driving her (and me!!) crazy. Does anyone know if the need to confess is typical of PANDAS? And if so, anything that works for you?

 

After having a great year with monthly IVIG infusions she has had a bit of a setback. Some major meltdowns this week and a definite increase in her obsessional/intrusive worries with a need to confess. I figured she was exposed to someone at school with strep.

 

I have consistently noticed a little bit of regression the week before her IVIG (and this is exactly one week before her next infusion), but this is considerably worse. I was thinking of asking our rheumatologist if we could do the infusions every 3 weeks instead of every 4 weeks. NAC is not helping, so I'm thinking of stopping that. Daily Motrin does help when she gets it 3x/day, but some days she skips lunch and the nurse won't give her Motrin on an empty stomach. I emailed her today to see if she could insist on her eating something and taking the Motrin. I'm also wondering if we should be upping her Pen VK for 7-10 days. She takes 250mg 2x daily.

 

Would love to hear from anyone who has any suggestions.

 

Thanks!

Nancy

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After having a great year with monthly IVIG infusions she has had a bit of a setback. Some major meltdowns this week and a definite increase in her obsessional/intrusive worries with a need to confess. I figured she was exposed to someone at school with strep.

 

I have consistently noticed a little bit of regression the week before her IVIG (and this is exactly one week before her next infusion), but this is considerably worse.

Would love to hear from anyone who has any suggestions.

 

Thanks!

Nancy

 

Hi Nancy,

 

I can't help with the confessions but I can tell you that my daughter also has an increase in her symptoms the week before she is due for her IVIG. The Igg's naturaly die off sometime during that last 3-4 week period which is why we likely see an increase in symptoms. Another thing to try besides IVIG every three weeks might be an increase in her dosage. Has your doctor ever checked her trough levels? It is my understanding that the results would indicate whether or not you indeed do need to increase the dosage or change the time frame.

 

Sam

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Hi Nancy - These are very typical symptoms of OCD, and therefore of PANDAS. In OCD, asking for reassurance or confessing is a ritual. We are still struggling to find the right medical treatments. However, at every phase, we have found ERP (Exposure & Ritual Prevention) Therapy to be extremely helpful. It has literally saved her a few times now, so that she can do the things she wants to do, even during the worst times. It is also a great confidence builder for her, and helps her feel less passive in this illness. Especially, if you are seeing OCD symptoms ongoing, even with IVIG treatment, I would strongly suggest this. If you have trouble finding an ERP therapist that specializes in Pediatric OCD, feel free to email me and I can send you a few suggestions. Our search for a good ERP therapist was almost as challenging as our search for doctors that are knowledgeable about PANDAS!

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Hi Sam,

 

That makes sense. We do check her levels every other month and they have been running high since starting the infusions so they don"t want to increase dosage. That may be the same with respect to upping the frequency, but I will ask.

 

How long have you been doing the infusions? Has your doctor indicated how long you will be doing them? Have you considered PEX? I would think Sarah would be a good candidate for it.

 

Nancy

 

Hi Nancy,

 

I can't help with the confessions but I can tell you that my daughter also has an increase in her symptoms the week before she is due for her IVIG. The Igg's naturaly die off sometime during that last 3-4 week period which is why we likely see an increase in symptoms. Another thing to try besides IVIG every three weeks might be an increase in her dosage. Has your doctor ever checked her trough levels? It is my understanding that the results would indicate whether or not you indeed do need to increase the dosage or change the time frame.

 

Sam

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Although she's had PANDAS for 11 years, the OCD component has not been as debilitating as it has been this past year, so I am not up to speed with the OCD treatments like I am the ASD or PANDAS treatments. ERP is not a treatment with which I am familiar, so I just checked it out online and found a research study--it looks rather interesting. I assume it's a form of CBT. Thank you, Meg's Mom...I will look into this. It sounds like something that could really help. If I come up empty I will email you, but thank you!

 

Nancy

 

Hi Nancy - These are very typical symptoms of OCD, and therefore of PANDAS. In OCD, asking for reassurance or confessing is a ritual. We are still struggling to find the right medical treatments. However, at every phase, we have found ERP (Exposure & Ritual Prevention) Therapy to be extremely helpful. It has literally saved her a few times now, so that she can do the things she wants to do, even during the worst times. It is also a great confidence builder for her, and helps her feel less passive in this illness. Especially, if you are seeing OCD symptoms ongoing, even with IVIG treatment, I would strongly suggest this. If you have trouble finding an ERP therapist that specializes in Pediatric OCD, feel free to email me and I can send you a few suggestions. Our search for a good ERP therapist was almost as challenging as our search for doctors that are knowledgeable about PANDAS!

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Hi Vickie,

 

I can't say for certain, but I think it's a combination of the two: (1) one week until her next infusion and, as Sam suggests, the Igg is at its lowest level; and (2) I think she may be in the middle of a PANDAS episode. Should you increase the antibiotic every time they are in an episode even while on IVIG?

 

If I am understanding you correctly, Vickie, I should not reassure her that her worry is nothing to worry about and I should not offer to tell the person to whom she wishes to confess about her worry, otherwise I am reinforcing her need to keep worrying? All of my training has been in developmental-based therapies and not in behavioral-based therapies so I am new to this. Thanks Vickie!

 

Nancy

 

Another mom relayed to me the story of her daughter needing to confess. The daughter would also always add that she did the action on purpose to make her mom mad...even though the mom knew that part was a lie. This was one of the last things her daughter got rid of as she recovered from a PANDAS episode.

 

I agree it is a result of OCD. So, I guess the question is whether to try to tackle the problem. If she is in the middle of a PANDAS episode, it may be best to wait. If you don't think she is, then the best thing is to try to tackle the problem. Unfortunatley, each time you accept her confession or reassure her you won't tell, you are reinforcing the need to do it. It will continue to snowball.

 

Now, I know another mom (not the one I described above) whose child gets IVIG monthly. She sees him regressing as it closer to another treatment. The boy who is autistic and non verbal is happy to get IVIG and runs into the office smiling and extending his arm to the nurse because he knows it will make him feel better.

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Hi - yes, it is a form of CBT - just really push when you interview therapists - some CBT therapists really don't have expertise in ERP and OCD. You can also do some work with her at home - I should have mentioned that there are some great books out there. You can do a fun workbook with her that is a good intro to the topic, called "What to do when your brain gets stuck". Two good books for parents are John March's "How Talking Back to OCD: The Program that Helps Kids and Teens say NO WAY - and Parents Say Way to Go!" and Aureen Wagners "What to do when your Child has OCD: Strategies and Solutions". If the OCD is mild and in one area, you may find that working at home is sufficient. For us, her OCD becomes so multifacted so quickly, that we needed professional help to get her through. Susan (Meg's Mom)

 

Although she's had PANDAS for 11 years, the OCD component has not been as debilitating as it has been this past year, so I am not up to speed with the OCD treatments like I am the ASD or PANDAS treatments. ERP is not a treatment with which I am familiar, so I just checked it out online and found a research study--it looks rather interesting. I assume it's a form of CBT. Thank you, Meg's Mom...I will look into this. It sounds like something that could really help. If I come up empty I will email you, but thank you!

 

Nancy

 

Hi Nancy - These are very typical symptoms of OCD, and therefore of PANDAS. In OCD, asking for reassurance or confessing is a ritual. We are still struggling to find the right medical treatments. However, at every phase, we have found ERP (Exposure & Ritual Prevention) Therapy to be extremely helpful. It has literally saved her a few times now, so that she can do the things she wants to do, even during the worst times. It is also a great confidence builder for her, and helps her feel less passive in this illness. Especially, if you are seeing OCD symptoms ongoing, even with IVIG treatment, I would strongly suggest this. If you have trouble finding an ERP therapist that specializes in Pediatric OCD, feel free to email me and I can send you a few suggestions. Our search for a good ERP therapist was almost as challenging as our search for doctors that are knowledgeable about PANDAS!

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Hi Sam,

 

That makes sense. We do check her levels every other month and they have been running high since starting the infusions so they don"t want to increase dosage. That may be the same with respect to upping the frequency, but I will ask.

 

How long have you been doing the infusions? Has your doctor indicated how long you will be doing them? Have you considered PEX? I would think Sarah would be a good candidate for it.

 

Nancy

 

We have only been doing the IVIG for three months. My daughter has been dx'd with an immune deficiency disease in addition to the Pandas. The plan right now is monthly IVIG for two years and then redo the blood work. However, redoing the blood work likely means vaccinating her with Pneumovax which at this time I am opposed to. Monthly IVIG is the standard treatment for her immune disease so even if we do PEX for the PANDAS we would still need to continue the IVIG.

 

Sam

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Thanks Susan...this is very helpful! I have already emailed the executive director at my daughter's school (it's a therapeutic-based school) to see if any of the clinicians there are familiar with ERP. They may not be but it's a good place to start. He used to work in the psychiatric department at a major Children's Hospital and has a lot of good contacts. And thanks for the suggested books. I'll order them. I've tried the "talking back to OCD" with her but that doesn't seem to work. Thanks again, Susan.

 

Nancy

 

Hi - yes, it is a form of CBT - just really push when you interview therapists - some CBT therapists really don't have expertise in ERP and OCD. You can also do some work with her at home - I should have mentioned that there are some great books out there. You can do a fun workbook with her that is a good intro to the topic, called "What to do when your brain gets stuck". Two good books for parents are John March's "How Talking Back to OCD: The Program that Helps Kids and Teens say NO WAY - and Parents Say Way to Go!" and Aureen Wagners "What to do when your Child has OCD: Strategies and Solutions". If the OCD is mild and in one area, you may find that working at home is sufficient. For us, her OCD becomes so multifacted so quickly, that we needed professional help to get her through. Susan (Meg's Mom)

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Wow...this is a lot to digest. Thanks, Vickie, for this very lenthy explanation! I will have to read it again carefully after a good night's sleep and see if I can begin to peel apart the layers of her ritual. And thank you for suggesting the books!

 

Nancy

 

It won't matter if you tell her it's nothing to worry about. To her it's essential. Those words will mean nothing. I'm sorry to say that, but it's true. You can say it, but you may also just make her mad. When Josh had rituals that had many layers, I peeled them apart and attacked it one section at a time. The "nice" thing is someone has to partake in the ritual with her. I say that's nice because you can help control her from completing it. I've found the rituals I had to take part in were "easier" to get rid of. The problem is if she's like Josh, on occasion, he'd skip me and try to get his 8 year old brother to reassure him. I had to give my 8 year old rules about answering.

 

Now, once you decide to tackle part of the ritual, you must commit to it. You cannot waiver even once or you've reinforced it even stronger. You need to expect strong anxiety and maybe even meltdowns when you first begin the extinction process. This is hard for a parent but you really must stick to it. While doing this process, you can still "give in" to the other parts of the ritual you are not yet tackilng.

 

Look at her ritual in parts. It may be more elaborate than you realize.You said she must confess. Do you have a phrase you need to say to her to confirm you heard her? You need to tell her you won't tell anyone else. Look at the whole thing closely and see if anything else exists surrounding it. Is it always in the same room, does she physically do anything while confessing (like has to look away from you)? Once you see the many layers that her ritual involves, pick the easiest part that you think will cause the least amount of stress. Either tell her you aren't doing it or switch it up. Once you see that the anxiety level is lowering and ultimately gone when that part is eliminated, you pick another part of the ritual to tackle. It may be a long process, but it worked for Josh.

 

When I eliminated Josh's first residual OCD ritual, I realized it was so much more elaborate than I realized. It took many steps and a few weeks, but he overcame it. Also, every time he eliminated another OCD ritual, others seemd to tag along on their own and get eliminated w/o me ever having to approach it.

 

The only book I read was "Freeing your Child from OCD". The book "Talking Back to OCD" was recommeded.

 

Oh, I did try to have Josh tell himself that he didn't have to do things and tried to get him to "talk back to the OCD" like they do in CBT. Well, that never worked. He never tried it. He always said there was nothing telling him to do things.

 

I hope this wasn't too confusing. It's a hard thing to explain.

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Wow...this is a lot to digest. Thanks, Vickie, for this very lenthy explanation! I will have to read it again carefully after a good night's sleep and see if I can begin to peel apart the layers of her ritual. And thank you for suggesting the books!

 

Nancy

 

It won't matter if you tell her it's nothing to worry about. To her it's essential. Those words will mean nothing. I'm sorry to say that, but it's true. You can say it, but you may also just make her mad. When Josh had rituals that had many layers, I peeled them apart and attacked it one section at a time. The "nice" thing is someone has to partake in the ritual with her. I say that's nice because you can help control her from completing it. I've found the rituals I had to take part in were "easier" to get rid of. The problem is if she's like Josh, on occasion, he'd skip me and try to get his 8 year old brother to reassure him. I had to give my 8 year old rules about answering.

 

Now, once you decide to tackle part of the ritual, you must commit to it. You cannot waiver even once or you've reinforced it even stronger. You need to expect strong anxiety and maybe even meltdowns when you first begin the extinction process. This is hard for a parent but you really must stick to it. While doing this process, you can still "give in" to the other parts of the ritual you are not yet tackilng.

 

Look at her ritual in parts. It may be more elaborate than you realize.You said she must confess. Do you have a phrase you need to say to her to confirm you heard her? You need to tell her you won't tell anyone else. Look at the whole thing closely and see if anything else exists surrounding it. Is it always in the same room, does she physically do anything while confessing (like has to look away from you)? Once you see the many layers that her ritual involves, pick the easiest part that you think will cause the least amount of stress. Either tell her you aren't doing it or switch it up. Once you see that the anxiety level is lowering and ultimately gone when that part is eliminated, you pick another part of the ritual to tackle. It may be a long process, but it worked for Josh.

 

When I eliminated Josh's first residual OCD ritual, I realized it was so much more elaborate than I realized. It took many steps and a few weeks, but he overcame it. Also, every time he eliminated another OCD ritual, others seemd to tag along on their own and get eliminated w/o me ever having to approach it.

 

The only book I read was "Freeing your Child from OCD". The book "Talking Back to OCD" was recommeded.

 

Oh, I did try to have Josh tell himself that he didn't have to do things and tried to get him to "talk back to the OCD" like they do in CBT. Well, that never worked. He never tried it. He always said there was nothing telling him to do things.

 

I hope this wasn't too confusing. It's a hard thing to explain.

 

Nancy-

 

New to the forum. I immediately thought of OCD. What we have learned about our son is that the OCD symptoms are not the classic kind most of us probably use to think was of as OCD. Perseverative thinking/perseveration is more of what we deal with our 10 yo son.

 

Best wishes.

 

Dawn

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Hi Nancy,

 

My son has ocd/anxiety and they are horrible after strep soooo i guess Pandas too. He too has the need to "confess" silly things to me, which I let him do. It bothers him and he hates the feeling of having to tell me something. I don't know if you have tried inositol. It really helps him with his anxiety /ocd. I give him about 1 1/2 grams a day. Hope this helps. Oh btw hes nine yrs old.

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Hi Darla,

 

Thanks so much for your suggestion. We tried inositol years ago but it really activates my daughter and makes the moods much worse. She's very sensitive to so many things. She can't take b6, b12, d, most probiotics (only bifido factor), and a list of many other supplements.

 

Nancy

 

Hi Nancy,

 

My son has ocd/anxiety and they are horrible after strep soooo i guess Pandas too. He too has the need to "confess" silly things to me, which I let him do. It bothers him and he hates the feeling of having to tell me something. I don't know if you have tried inositol. It really helps him with his anxiety /ocd. I give him about 1 1/2 grams a day. Hope this helps. Oh btw hes nine yrs old.

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