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My DD6 who started off with tics, now has lots of OCD. This really picked up this Sunday which is about 1 week after she finished a 5 day course of az for possible walking pneumonia. I am still in the process of trying to figure out whether this is PANS/PANDAS. I am doing strep titre, myco IgG and IgM, and Lyme IgG and IgM on Saturday. Now she has to go up and down the stairs a number of times to get the feeling right. She has all these weird feelings to do weird things like touch things, repeat things, have me repeat things. I called the CBIT person we saw a week ago who said this is OCD. I have an appt with her at end of November but I may be able to move it up if need be. When we saw her last week, my DD was just off abx and not ticcing much and very low level OCD. So our meeting with the therapist wasn't too useful. My DH thinks that by talking about these feelings that is what is causing my DD to have more feelings. Is that possible?

 

I called Dr. T in NJ, Dr. B in Ct and Dr. M in Fl. Dr T would do a phone consult and I may do that after I get the lab results. Dr B and Dr M are booking into April . Dr M only takes on certain patients.I I made an appt with Dr. L in OH for mid November. Has anyone worked with him? In the meantime what should I be doing? Should I take her to CBT sessions or will that make things worse? Should I be doing gfcf diet? I have been introducing more gf food and keeping the dairy low but it is not helping. Supplements?

 

If this is PANS/PANDAS do things just keep getting worse until they are treated with long term abx? Does lyme disease cause OCD type symptoms as well? Any advice is greatly appreciated.

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Real quick- I absolutely believe that "talk" therapy can do harm, esp to a malleable kid with OCD.

ERP for the ocd is good. A counselor talking about feelings,"issues", etc can unintentionally cause problems.

Please make sure the therapist that you see is trained in ERP for OCD and not just someone who is a "therapist".

I can attest to damage done by an untrained (in REAL OCD) professional.

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First, yes, lyme and coinfections can produce nearly the same list of symptoms as strep can - which is why Swedo has introduced the term PANS as a bigger umbrella. My son had OCD and tics and ADHD from lyme and also from yeast. Strep doesn't have a monopoly here.

 

Second, it's my experience that a PANS response will continue until the triggering infection is treated. If you have a robust immune system, I suppose you could eventually fight the strep infection without abx and then yes, it would subside. But since most Pandas kids by definition have faulty immune systems, it's more likely they're going to need abx - or equivalent herbals - to win the war.

 

Since all the specialists book so far out, I'd go ahead and make an appt with one of them. You can always cancel at a later date. Also, ask to be placed on a waiting list of cancellations. If you think lyme may be a possibility, Dr B would be a better option than Dr L since he's at least lyme literate on the basics, where Dr L is not - and will be the first to tell you so. You could also contact ILADS and see if there's an LLMD near you and get on their waiting list (they too have long wait lists). Some LLMDs are becoming more experienced with Pandas and the tools (abx, supplements, fighting inflammation) are also used in lyme, so their skill sets are similar.

 

On CBT - the proper therapy for OCD is ERP (exposure/ritual prevention) - a specific form of CBT. Many therapists claim to do ERP but you need to ask them about their experiences, not only with ERP but with doing ERP for younger children. it's a unique art and hard to find someone to do it well. Complicating the issue is that, as you've seen, when Pandas wanes, it's hard to do therapy because the problem isn't there. Yet when it is there, it's so ramped up that therapy tools don't make much of a dent. What most of us have found is that ERP and even plain vanilla CBT can be helpful. But it seems to work best when done on the downside of a flare. Try it at the peak and you'll feel like a failure. Try it when they're healthy and the child won't remember having OCD. We found that we'd practice tools and talk about them at a peak but not really expect them to work until the flare was subsiding. Still very, very helpful. Gives you life skills. But your expectations for success change based on where the child is along the bell curve of an episode.

 

I strongly disagree with your DH that talking about the anxiety and OCD encourages more of the same. Your child is going to have OCD whether you talk about it or not. But if you don't talk about it, she won't have any tools and she won't feel like she has an ally, someone to confide in to help her. Bottling up the OCD thoughts only makes them stronger. OCD is like a hostage-taker. It says "if you tell on me, I'll make something bad happen" So the child doesn't say anything and the OCD gets worse. Instead, if the kidnapped child is in McDonalds with the kidnapper and she yells out "Help me, I'm being kidnapped!" - the kidnapper loses his powers. So talking about it is absolutely a good thing. You are not in any way encouraging it by talking about it. Quite the opposite.

 

As far as diet and supplements - they help some kids and not others, depending on unique needs. Some supplements work great for some kids and are awful for other kids. Keeping inflammation down seems to be a universally agreed upon good thing, which is why motrin is in so many of our cabinets. But there's no universal answer when it comes to diet or supplements (and I'm a supplement junkie, so I'm not saying they don't help - but there's a lot of trial and error you need to be prepared for).

 

Your best immediate tool would be to get additional abx, since it sounds like that's helped. But I realize that's no easy task. If it's any consolation, I went thru what you're going thru. It took me 10 months to find someone who'd support us. Before then, I had to fire our first pediatrician, go back to our second pedi every 2 weeks, begging for script renewals and on more than one occasion, heading into the minute clinic in tears, begging for abx for my DS's swollen glands even when the swab was negative (I found that if you go to the minute clinic on a Sat afternoon, they can sometimes be more willing to write a script to tide you over until you can see your pedi on Monday). You end up feeling like a junkie trying to score some crack. It's awful. But fast forward thru 5 yrs of Pandas, lyme, integrative treatments, nutritional and methylation deficiencies....and my son is doing really, really well. Has needed lot of time to recover and heal, but no permanent damage, no memories of the worst of times. So as freaked as you may feel, try to realize it's not permanent. If you get a knowledgeable doctor to support you, you can come out on the other side.

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The therapist that I saw for CBIT for tics also treats OCD. She said that the therapy involves throwing the bad thoughts into a junk pile or labelling them differently. Is this ERP therapy? Right now my DD doesn't have fear of germs. Like I said she is doing things repeatedly due to a "feeling".

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Yes, this therapy sounds appropriate.

I was referring to "talk therapy", which generally has an almost Freud-ian bent to it. The line of thinking is that OCD is generally an external sign of a "need to control" due to trauma or other issues. I know it sounds ridiculous to some that I am even mentioning this here, where we are know or are pretty sure our child's OCD is an organic dysfunction caused by infection.

HOWEVER, you would be very suprised at the number of professionally trained family/child therapists who have zero understanding of OCD. They like to lump it in with kids who are bullied or overweight or from divorced homes. They see it as an emotional response , not a brain function.

I have learned to extensively interview anyone who may be doing therapy with my children & be sure they understand OCD. It is as important or more so than being sure you have an A-Team medical team.

Just beware these people are out there and they can definitely do more harm than good.

A good CBT/ERP trained therapist (preferably a psychologist) can make a world of difference in your child getting the tools to deal with anxiety/OCD/tics.

 

Have you seen the workbook, "what to do when your brain gets stuck?" or Tiger, Tiger is it true?

Great books, every PANS parent should get them

Edited by PowPow
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I bought the book "What to do when your brain gets stuck" by Dawn Huebner when I started noticing low level OCD. I know they talk about putting thoughts in the junk pile. However my DD didn't want to read it at the time. Now things are so much worse. Since I have no experience with OCD I don't feel qualified to handle this. I don't know if I should read her the book or not. If things worsen with her OCD and other things, then I will move up her appt. with the CBT/CBIT person, especially since many of you have had good experience and recommend it. Thanks.

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Heubner's book is really helpful. My kids found it really reassuring to know that what they were feeling had a name and that they weren't crazy. I had to simplify it for my 5 yr old but my 7 yr old really got into it. Like your DD, he had "feels right" OCD which is hard because unlike other OCD, there isn't that "OMG something bad is going to happen" that comes along with other forms of OCD. So it's much easier for them to just give in and do the evening up than it is to delay, say no or use other ERP tools. Feels right OCD is the land that borders tic-land. It's a compulsion to do a movement, much like a tic. But...if you don't confront it, you run the risk of it morphing into other kinds of OCD. My son went on to develop intrusive thoughts later on and that was far scarier for him. He thankfully had the tools from earlier years and was at least able to recognize what was happening and felt better equipped to try to stop it.

 

The one thing I'd ask the therapist tho - in addition to putting the thoughts in the junk pile, you also have to have a plan to confront the thoughts and say "no" to them. It's more than just ignoring them. Will she help your child develop tools to delay, ignore, do the opposite? As described in the book?

 

Under Helpful threads (pinned at the top pf the forum), you'll find some posts from Meg's Mom about all the ways OCD can show itself and some good ideas for doing ERP at home. You can also search the archives for "Meg's Mom + ERP" - she gave many of us awesomely creative ideas for doing ERP when we couldn't find local help. She's now actively involved in the international OCD Foundation (www.OCFoundation.org) and her daughter is doing really well (knock wood).

 

(BTW - you may want to get "Talking Back to OCD" by John March for yourself. It's meant for teens and their parents but it really helped my understand my role in all this. My job wasn't to fix it - only the child can do that. My job was to be a coach and place myself on the same team, not set myself up as an adversary who would "force" him to face his fears. A really helpful guide for parents.

Edited by LLM
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Thanks for info on OCD and therapy. I will have to read about it since I don't know much about it.

I contacted ILADS about an LLMD in my area(western PA) but no response yet. Does it take a few days?

A mom from my area found an LLMD- Dr S in Hermitage PA. Does anyone know anything about him? I don't think that Dr. L in Gahanna, Ohio does lyme and coinfection testing.

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