Love to hear about the IOCDF conference

[minimaxwell]

Can anyone please share their notes, thoughts, observations,learnings..? Thanks!

[MomWithOCDSon]

Hi! Honestly, still have to organize my notes and my thoughts, and I'm sure some others who also attended will have great things to add, including some things I missed.

 

Will have to say that we missed the first PANDAS-oriented session led by Dr. Latimer, Vickie and others that was held Friday morning, but we were able to attend the afternoon session geared toward therapists, along with the Friday evening Q&A session and Saturday morning's session with Dr. Jenike.

 

For my DH, especially, since he participates rarely in this forum and other places where he interacts with other families and hears the other stories, the Q&A and Saturday sessions were huge eye-openers! He knows what we've been through, but he had so little idea that our experience was so "universal" and that, despite our hard time, there are some who have it even rougher in some ways.

 

We are profoundly grateful to the folks like Vickie, Diana P., MegsMom and Buster, among others, who brought so much to the table; special thanks go to MegsMom for bringing Dr. Jenike to the table on PANDAS, because his backing and influence should be so helpful in terms of getting us over the hump with respect to being heard and validated as we seek care for our kids.

 

Lots and lots of welcome things said, connections made and support offered! I'll just bullet-point a few things that stood out at me and that I happened to make note of:

 

• Swedo has a new word for symptom onset: foudroyant, which is based on the French for meaning "like lightening"
  
• Dr. Eric Storch of USF says that kids with PANDAS/PANS may need longer and/or slower ERP to contend with OCD,
  
• When asked, Swedo said they're still trying to address the difference between "dysfunction" and "damage." She said that there is some evidence that recurrent events could result in "damage." She used the analogy of hitting your thumb with a hammer. The first, second, maybe even third time, it's going to hurt but you will likely enjoy a return to full functionality and feeling. However, if you continually hammer on that thumb, chances are eventually there will be lasting nerve damage and you'll lose some part of what it was prior to having been hit . That's why she's anxious about getting early diagnosis and intervention.
  
• Swedo also talked about the "Tincture of Time" several times, meaning she sees times as an important component in the healing.
  
• Sue Swedo told the therapists in the therapeutic session that she and Dr. M. conducted on PANDAS: "Listen to the mother." Several times, she credited the initial PANDAS finding to a mother who saw that her son's tics grew noticably worse even before the strep showed up, so she knew to get him cultured.
  
• Swedo also suggested that if you think strep and have culture drawn, but the culture comes up negative, have titers drawn that day and hope they come up low; then have titers drawn again 4 to 6 weeks later. If the titer level doubles or more, then that's an indication of infection and an auto-immune response.
  
• A draft form of the PANS criteria, of which PANDAS is a subset, identifies three primary criteria: 1) abrupt onset or recurrence of OCD, 2) at least 2 of a list of comorbid symptoms (we all know them well . . . stuff like general anxiety, urinary frequency, trouble sleeping, behavioral regression, emotional lability, school problems, etc.), and 3) no other explanation for these behaviors (excluding a previous diagnosis of OCD, as that diagnosis may have been faulty in the first place as having been a "missed" PANDAS exacerbation or initial onset). Swedo says she would like to expand the criteria to include not only OCD but also Tourettes, but that is an ongoing battle.
  
• Swedo now says she will support 3 to 4 weeks of abx, rather than a standard 10-day course, but she continues to prefer 1) PEX and then 2) IVIG as a treatment response.
  
• At the Q&A session the panel (including Dr. Swedo, Dr. Latimer and Dr. Murphy) indicated that seasonal allergies and similar histaminergic responses in our kids can result in an autoimmune response that is fairly indistinguishable from the way they react to other "invaders." Swedo recommended both H1 and H2 blockers for combatting that response.
  
• In a therapeutic session, Dr. Jenike got up and said (I paraphrase): "Let me set something straight right now. How many of you think PANDAS is a 'controversial' diagnosis? (A few hands in the room shot up.) Well let me help you out with that, then. Here it is: PANDAS exists. Controversy over. Now let's get on with getting these kids help!" What a GREAT guy!
  

 

So, there was much more, but as Buster was taking lots of notes and probably others as well, hopefully they'll chime in and offer some more tidbits.

 

Overall, it was a really good experience and nice to feel, really for the first time, as though we weren't the "black sheep" in the OCD family because now we have some "official" backing within that community's primary group (the IOCDF). Of course, there were still a few who looked askance at us, but my DH and I chatted with more and more people . . . and not just families but therapists and psychologists, etc., as well . . . who were grasping some of this for the first time and would say things like, "You know, I have a young boy in my practice, I think I need to talk to his parents about this . . . . " Wonderful!!!

[thereishope]

.

Edited September 29, 2019 by Vickie

[philamom]

Nancy & Vickie- thank you for sharing! I look forward to seeing the entire post.

[trggirl]

Thanks for sharing!!!!

[Agnes26]

 

[*]At the Q&A session the panel (including Dr. Swedo, Dr. Latimer and Dr. Murphy) indicated that seasonal allergies and similar histaminergic responses in our kids can result in an autoimmune response that is fairly indistinguishable from the way they react to other "invaders." Swedo recommended both H1 and H2 blockers for combatting that response.

 

 

This is intriguing to me. DD has terrible seasonal allergies right now. Could this be why 5 weeks post IVIG, OCD is unrelenting?

 

Thanks for posting this information!

[MomWithOCDSon]

This is intriguing to me. DD has terrible seasonal allergies right now. Could this be why 5 weeks post IVIG, OCD is unrelenting?

 

Thanks for posting this information!

 

For our DS, histamine seems to provoke more of a general anxiety/fight-or-flight type of response than it does OCD, but I wouldn't dismiss the possibility that it is playing a role with your DD. Maybe try an antihistamine and see what the response is?

 

Are you doing ERP/CBT, along with the IVIG and follow-up abx, etc. for the OCD? That was another message that was put out there repeatedly, as well, as exemplified in Vickie's post with Dr. Storch's slide presentation. Our kids need the therapy along with the medical intervention because the behaviors they engage in to try and better manage their anxiety can become, for lack of a better word, habitual, and stick around even after the medical emergency has been addressed.

 

Just anecdotal on my part, as well, but from what I read, see and hear from other parents and our own experiences, this "residual OCD" seems as though it might be a bigger issue for older kids than it is for younger ones. The neural pathways are carved a little deeper the older one gets, maybe?

[bulldog24]

Listen to the mother- I like that

[dcmom]

I completely agree with Nancy.

 

We have found aggressive medical treatment to be our number 1 priority.

 

However, we have had times when we could see that the pandas had gone into remission, but that some of the ocd had stuck. This OCD was somewhat easily addressed with appropriate ERP therapy- much more quickly than if pandas had been still raging. It was not helped by poor quality ERP which we got close to home (and a little farther from home from a big name psych)- but in fact probably made worse or at least added a lot of stress in our lives by this incompetent therapy.

 

We have also seen that the ocd is stickier as they get older. Which is why immediate medical treatment and experienced ERP is so important to us now.

[PowPow]

Just chiming in on a ditto to MomwithOCDSon and dcmom's post--

 

we saw the same thing-

aggressive, strong medical treatment put PANDAS into a kind of remission-- clearly and without it we never would be where we are now (which is a happy, hopeful place!)

but we needed intensive ERP therapy to bring my kids back.

 

anyone know where next year's conference will be??

[smartyjones]

 

For our DS, histamine seems to provoke more of a general anxiety/fight-or-flight type of response than it does OCD, but I wouldn't dismiss the possibility that it is playing a role with your DD. Maybe try an antihistamine and see what the response is?

 

 

 

thanks mom -- i am ALWAYS so appreciative of your wise insights and experiences! do you know how the action of an antihistamine may affect the BBB or brain tissues compared with how ibuprofen affects the same?

[Agnes26]

 

 

thanks mom -- i am ALWAYS so appreciative of your wise insights and experiences! do you know how the action of an antihistamine may affect the BBB or brain tissues compared with how ibuprofen affects the same?

 

I'm wondering this, too.

[MomWithOCDSon]

Agnes & Smarty --

 

I have poured through the rheams of research I've collected over the last few years, 'cause I thought I'd read something previously specific to histamine/antihistamines and the BBB, but I couldn't put my finger on it. So I did the next best thing: Googled!

 

Turns out antihistamines cross the BBB, and histamine is a neurotransmitter that opens the BBB. So, it would seem appropriate that antihistamines could be beneficial in closing the BBB.

 

Histamine and the BBB

 

Blockage of H2 Receptors and the BBB

 

Here's a nice primer on histamine and antihistamines:

 

Histamines & Antihistamines

 

I like the chart at the bottom of this one, explaining the 4 histamine receptors and what they relate to:

 

Histamine Receptors

 

Thanks for bringing it up. We've realized for a while the antihistamines have been beneficial for our DS, but hadn't connected that benefit specifically with helping keep the BBB in its proper and intended condition.

[Missmom]

Agnes & Smarty --

 

I have poured through the rheams of research I've collected over the last few years, 'cause I thought I'd read something previously specific to histamine/antihistamines and the BBB, but I couldn't put my finger on it. So I did the next best thing: Googled!

 

Turns out antihistamines cross the BBB, and histamine is a neurotransmitter that opens the BBB. So, it would seem appropriate that antihistamines could be beneficial in closing the BBB.

 

Histamine and the BBB

 

Blockage of H2 Receptors and the BBB

 

Here's a nice primer on histamine and antihistamines:

 

Histamines & Antihistamines

 

I like the chart at the bottom of this one, explaining the 4 histamine receptors and what they relate to:

 

Histamine Receptors

 

Thanks for bringing it up. We've realized for a while the antihistamines have been beneficial for our DS, but hadn't connected that benefit specifically with helping keep the BBB in its proper and intended condition.

Our ped. Neuro. Prescribed vistaril for anxiety although it is a simple antihistamine. It has been found to have a significant impact on reducing anxiety without the effects of all of the psych.. Drugs. And it is non-addictive. I haven't given it to my son in a while as it is summer and the anxiety has not seemed to be too bad at the moment, but after reading your post maybe I should start giving it again if it could help strengthen the bbb. Vistaril has also been around for quite a long time and is available generically. So it is pretty inexpensive so I always keep some available as needed.

[Iowadawn]

Ditto on the Vistaril, an 1956 first generation (H1) antihistamine. Our psychiatrist removed ds13'snpsych drugs the last time as an inpatient. He was sent home with a script for Vistaril. It has worked the best of anything for anxiety. Reading up on it a bit, one thing that is mentioned that it is beneficial if the anxiety has an organic origin. The whole benefit with decreasing Bibb adds an additional reason why I see it helping. Dawn