Jump to content
ACN Latitudes Forums

OCF Conference this Friday


Recommended Posts

Buster:

 

Did any of the doctors mention lyme disease in their PANDAS discussion? I think the big question I have is that lyme disease takes so long to treat compared to strep and other bacterial infections. I know that there are several other families on this forum who have PANDAS children who have lyme disease and my big question is does the IVIG need to be done at the end of the lyme treatment?

 

Thank you so much for giving us all the update. I found your information very informative.

 

Elizabeth

Link to post
Share on other sites
  • Replies 82
  • Created
  • Last Reply

Top Posters In This Topic

Hi Elizabeth,

 

Not that I'm aware of. There was a slide that mentioned that other autoimmune illnesses that may trigger neuropsychiatric disorders such as Lyme Disease, Thyroid Disease, Celiac Disease, Lupus, Sydenham Chorea, Kawasaki's disease, and acute Rheumatic Fever.

 

Buster

 

 

Buster:

 

Did any of the doctors mention lyme disease in their PANDAS discussion? I think the big question I have is that lyme disease takes so long to treat compared to strep and other bacterial infections. I know that there are several other families on this forum who have PANDAS children who have lyme disease and my big question is does the IVIG need to be done at the end of the lyme treatment?

 

Thank you so much for giving us all the update. I found your information very informative.

 

Elizabeth

Link to post
Share on other sites

When we first met with Dr. B. and we discussed "sudden onset", I too thought we didn't fit into that criteria (my son started having tics at 18 mos). Then when I described to Dr. B. how I can remember drawing with my son one day and noticing an odd blinking, he said, "that's your sudden onset". Because my son was so young, the quirky OCD type behaviors didn't really show until a few years later.

 

Also, now that we have the PANDAS diagnosis, we are more in tune to some of those behaviors. My husband was saying the other day that my son has to wipe the pitcher's mound after every throw and now he's thinking that is more of an OCD thing than just baseball stuff. He never really thought about until he talked with Dr. B. the other day. I think Dr. K. is right, the onset at a young age really skews the view of "sudden" onset.

 

Sorry- I'm terribly quotation mark-challenged.

I discussed this very issue w/dr K live before dd10's ivig. This may turn out to be another definition issue like "cure." I said my dd didn't meet what is published as pandas criteria; no history of strep, no sudden onset. He stopped me in my tracks and said she did have sudden onset and we just missed it because it happened so young (around 2 y.o.: 2001). He said this is a big problem in the under 5 pandas child and that he and Dr. Swedo were working on more tailored criteria for this set of the pandas population. Teasing apart pandas symptoms and terrible twos and threes is no easy fete; it will be interesting to see what they come up with.

On the monkey map, I answered "no" to sudden onset, but Dr. K marked her down as "yes."

Link to post
Share on other sites

My son has struggled with PANDAs since infancy, but I still say it is a "sudden" onset with each exacerbation. He can be fine... just moving along and looking like a pretty average kid... then we see it start... sometimes it starts with a tic that he tries to hide...sometimes it starts with him trying to get me to lay down with him at night, sometimes he'll start with doing things an even number of times... but it starts and then the floodgates open until we figure out what the infection is and treat it.

Link to post
Share on other sites

Opps accidentally posted my comment below.

 

I'm jealous. Wish I could be there. We had our conference all with Dr K on Wednesday and he mentioned that they there is no pandas/pitand difference - it is all the same thing and that there would be some news on that (maybe a new name and description for the disorder?) coming out of DC meeting.

 

Dr K confirmed we are ready for IVIG, no more tests or steroids needed...Just a willing immunologist which seems we will need to fly to Chicago for. He prefers we do it locally, but after 2 days on the phone with docs trying ot find an immunologist that will treat pandas - or can even recommend one that can ("I don't treat pandas, and I don't know of anyone that does...maybe you should call the neurology dept at Stanford..."....maybe you can try infectious disease at UCSF?"...Mayeb you could try doc X (that would be the doc that sent us to neurology at Stanford).

 

Our best hope is a letter from our phychiatrist to try to get us into Doc Lewis (who we know has done at least one pandas IVIG form this board). He doesn't even have any appointments til Sept. We want is done ASAP..we've been waiting to get to this point for a year. Otherwise its on a plane to Chicago to see DR K.

 

Why won't anyone treat our kids on the West Coast?

Link to post
Share on other sites

Thanks SF Mom. I left a message for them on Friday. I spoke with one person at office who said that they aren't set up yet. They had plans for the infusion center to be up in August, but according to person that answered the phone, they don't have medication or infusion nurses lined up and she doesn't know when they will be set up and taking appointments. I think my son would probably be their first patient, which makes me a little nervous to say the least. I would do it - if I met with them and felt OK with everything - someone has to be first if we are going to have a pandas doc in norcal, but doesn't sound like they are going to be ready before Sept. Will find out more on Monday.

Link to post
Share on other sites

Hi all - Buster did a great job of writing about the conference - especially on the scientific side! I thought I'd give a little more color. The first presentation was Leckman and Cunningham, and it was overwelming to me. First of all, I was like a groupie, sitting with so many of you that I have admired so long on this forum. And then to see Leckman & Cunningham, and hear them speak! I am sure I missed 40% of what they were saying :( , but thanks to the forum, I did follow most of it. Leckman made me laugh, with a dry sense of humor - and Cunningham made me cry. I am not a "cryer" in general and was completely unprepared for the emotion that swept through me, when she thanked the parents for advocating for our children. I thought of so many of you here, and of the struggles we have all gone through just to be heard. To have someone thank US, when I just so appreciate them - well, it's making me cry again now.

 

Then I got a hanky from Buster, so that was kind of like going to a U-2 Concert, and having BonJovi give me a tissue. :D

 

There were so many presentations that it took the entire day. I cried again when I saw the video of a little girl in a severe episode. Dr. K made me laugh. Dr. L was a study in courage and determination. I won't list the parents here, as this is a public forum, but so many thank yous to all of you that spoke.

 

Then the rest of the day was a blur of emotion, as so many parents sought out the speakers and other PANDAS parents to ask us if we thought their kids might be PANDAS. So many would tell that familiar story of "my child was ok on January 12, and then on January 13th, our lives descended into ***". The look in their eyes was so familiar.

 

I love the IOCDF conference - my daughter is at home there, with so many friends. She feels so comfortable with them, whatever the reason that they have OCD. To find a friend with OCD, to recognize yourself in another person, is to find a comfort that I can not always provide her. She is motivated by the courage around her. And I always learn something new and meet such wonderful families.

Link to post
Share on other sites

Thank you all for your posts. As a parent who wanted to attend but could not due to having a child who is just 4 weeks post IVIg, I could only wish to be there but your posts have made me feel a part of the event. Meg's mom, I cried just reading your post and I would feel the same about getting a hanky from Bon Jovi (aka Buster) or even Mrs Bon Jovi! To sit among all of the members of this forum would truly be an honor, a great honor and privilege.

 

I had wondered about the presentations providing so many families with children with OCD with a different perspective. I worry, with so few PANDAS practitioners, how the system will deal with this influx of new inquiries?

 

I hope the NIH/NIMH has the wisdom and courage today to see clearly the devastating consequences of this disease (and its "comorbid cousins") and provide the necessary medical support for appropriate diagnosis and treatment.

 

Mary

from Michigan

Link to post
Share on other sites

For me, the best part of the conference was the 36 hours where I got to feel "normal". When we first walked into the lobby of the hotel, my son's eyes opened wide and his mouth hung open in awe - in front of him were 2 sets of escalators, 3 elevators with golden doors and three glass elevators - he was in heaven. We had to promise he could ride them all if he would just let us check in first. As we were checking in, a girl behind us told her mom "Look at all the elevators! Can we ride them?" This is the first place I knew people would actually smile with understanding.

 

Another boy walked by with surgical gloves on - while he obviously had serious contamination fears, he was doing his best to still function in the world and go to a conference filled with germy people so he could learn a few things.

 

One doctor in a kids session explained how she used to always make her sister re-do things over and over (something we've always labeled as bossiness in my son). She said she did it because she was afraid something bad would happen to her sister and so she had to have her sister re-do things over and over so she could take a mental photograph "just in case" she lost the real thing - she needed to burn the memory into her brain. I had never thought that there were "logical" reasons that might be torturing my son and driving his bossiness. We just figured he was being annoying and could control it. Maybe he has OCD thoughts he just can't articulate.

 

These small things made it a great experience for my whole family. Simple exposures to others who understood and in some cases to people who made our own struggles seem minor. I went to one seminar where we were told to put a drop of honey on our hands and then shake hands with others around us. No one wanted to shake hands with people who had "sticky" hands, and we all sat uncomfortably for the next 30 minutes, anxious to go wash. We all felt "contaminated". We were told to rub the hair on our eyebrows in the opposite direction that they normally grow - and we weren't supposed to "fix" it so that it felt "just right" for the rest of the session. It gave you a small glimpse of what our kids deal with all day.

 

I think for parents who were new to Pandas, it was very confusing to hear each doctor explain their protocols and in some ways contradict each other. But I think it was great that some doctors attended the others' presentations and heard their views.

 

It was also great to finally put faces and real names to some of the parents here, and have a family reunion of sorts. Like I said, it was a gift to feel normal and understood. Made me realize that I have to try even harder now to give my son that same gift and put more energy into understanding his emotional needs, not just his physical/medical needs. To "belong" somewhere was a great feeling.

Link to post
Share on other sites

Maybe he has OCD thoughts he just can't articulate.

 

So true, I believe my dd12 has more mental OCD than what she manifests outwardly...so much going on inside her mind that we don't even get a glimpse of.

 

I think for parents who were new to Pandas, it was very confusing to hear each doctor explain their protocols and in some ways contradict each other. But I think it was great that some doctors attended the others' presentations and heard their views.

 

When I read about the 3 specific treatment options (IVIg, PEX, ABX) being presented my only solace was that at least they all agree that this is bacteriological. New or old to PANDAS it sure puts a lot of pressure on us, the parents, to pick and choose which Dr we see and which protocol we choose for our children.

 

it was a gift to feel normal and understood. Made me realize that I have to try even harder now to give my son that same gift and put more energy into understanding his emotional needs, not just his physical/medical needs. To "belong" somewhere was a great feeling.

 

What a beautiful sentiment. Thank you for helping me see how out of the ordinary and misunderstood my dd12 must feel. I would love to be able to use some of the suggestions offered (ie: the honey on the hands, the eye brow hairs)to help us all appreciate, if just by a fraction, what it is she struggles with every moment.

Thank you LLM!

Mary

from Michigan

Link to post
Share on other sites

Thank you, Buster, Meg's Mom, and LLM, for posting about your experiences attending the PANDAS talks at the IOCDF conference. I so wished I could be there, but my son is too ill right now -- on a post-IVIG roller-coaster ride -- and I couldn't leave him. It was wonderful to get a few glimpses of what transpired.

 

And, boy, would I ever love to know what's happening at the NIMH!... I pray it's something good and meaningful!... High time!...

 

Tenacity

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...