peglem

Allie's anxiety is reduced immensely from IVIG. Its not gone, but those pathways have been almost all she's learned throughout her life. She is requesting to try things that she was prevented from doing because of crippling anxiety. So, its been reduced enough that she feels she can work through it and overcome it.

Yes, our antiD2 was 16,000 on the Cunningham test. Haven't had dopamine levels tested, though.

Can you talk about it when she's calm? Tell her you know she doesn't like it when that happens to her, then brainstorm some things she can do when it happens and what you can do to help...practice when she's calm. Have some silent signal you can use when things start to get out of control. Valerian root? I'd also approach the doctor if you can and let him or her know how bad it gets off abx...see if they can monitor liver/kidney functions to make sure she's handling it okay. Our pediatrician is worried about causing problems w/abx, but was willing to be more aggressive as long as the dangers were monitored. He once said he feels like we are having to choose between her brain and her liver. Thankfully, her liver has always tested just fine, so we continue on the abx..

All I can say is WOW!

Here's what I wrote last week:

Your son experiencing increased symptoms in response to exposure from his brother (when he is negative for strep) is actually a sign in favor of a PANDAS dx. Because the immune system makes antibodies when it is exposed to pathogens to prevent infection, it indicates his reaction is caused by antibodies, not infection, which is the case w/ PANDAS. We call that "canary" effect.

The most successful program I've found for helping with social/emotional development in autism and aspergers is Relationship Development Intervention. You can read more here: http://www.rdiconnect.com/ This is the only program I know of that works on remediating developmental deficits, instead of just getting the child to "act normal."

Don't forget...6 more days!

I tuned in here in AZ just before 10 to find out what channel it was on- Dang, it started at 9:00 here and I missed it! But found it online here: http://abcnews.go.com/2020/MindMoodNews/marijuana-alternative-treatment-children-ocd-autism/story?id=11227283&page=1 The video on the link is not the full story. Pandas (not in acronym form) is mentioned in the written article. Momtocole, I salute you! I'm so glad you have found something that helps your child. I bet you'd be very happy if there were studies to affirm your choice and that surely would have made your decision to try this easier. When I was considering trying it for Allie, she was acting as though she was demon possessed about 20 out of 24 hours/day- and the 4 hours of sleep she was getting wasn't even in a solid chunk. Psych meds did not help. Ultimately, I decided not to do it w/o the help/supervision of a doctor... Just to let people know, I have only ever tried pot once in my life (and yes, I did inhale) but didn't like the feeling, so its not like I'm a big legalize pot advocate. I just think if its got potential to help people (its just a plant for goodness sakes!) it should be used medically, and under a doctors supervision. I honestly think the studies have not and will not be done because it will not add to the coffers of any corporation to study a medication that patients can grow themselves.

Is Dr.T even around these days?

Did you think about doing one more round of low dose to stay on schedule - then see Dr. B three weeks later in September? That's what I was thinking, too. Something to discuss w/ Dr.B, I suppose.

I have seriously considered trying MJ for my daughter, but it is not legal here. I finally decided she would be worse off w/ her mommy in jail. And I know so little about MJ and, of course, would have to buy it from dubious sources (I don't know how to do that either). At this point, I don't think she needs it anymore, but sure thought it would be nice to have it by prescription, with dosage and content regulated. I'll watch if I can...

But, for Dr. K to have been giving these hints...does that mean there has been behind the scenes collaboration? I wonder if these doctors enjoy getting together w/ other physicians who understand as much as we enjoy being w/ other parents who understand? I'm glad to see the cause moving forward, even though it tries my patience to have it moving so slowly.

Is that why Dr. Latimer was asking for us to fill out spreadsheets? Thanks for keeping us up to date!

In all fairness, it seems like the drinks should be Pepsi products....they mix well, no?

Not Ferris, and not exactly what you asked for, but this is the only official study I know about for long term abx for PANDAS: http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf Have you seen any improvement on the abx, so far?

Okay, I give up, can't find the one I was looking for, but I'm so glad you set me on this path! Going back and reading old Buster posts is so cool. I'm finding that I understand them so much better now, than I did back when they were new!

This isn't the one I was thinking of, but still may help: http://www.latitudes.org/forums/index.php?showtopic=5860&st=0&p=44139&hl=+anti%20+dopamine&fromsearch=1entry44139 I'll look for the other one.

As usual, this is something that somewhere Buster has done a beautiful job of explaining... But, I think you're right, it is part of the cascade. Normally when a neurotransmitter hits a receptor, its like pushing a button, which activates the cell and the impulse is sent on to the next nerve cell. But the ANA's stick, and the cell is activated like crazy, kinda stuck in the "on" position. But, it is unknown what else, besides those ANAs can cause high CamKII activity. Now let me see if I can find Buster's explanation!

Just to clarify, its not the amount of CamK that is being measured by Cunningham, but to what extent your child's serum activates it. My understanding (have to qualify in case I'm wrong) is that CamK is a sort of catalyst for neurotransmission. So, something in the serum is making the CamK overactive...they believe it at least one of the antineuronal antibodies that they test for.

I know you didn't ask for my opinion, but here it is anyway. Danny has been doing okay as far actually doing the infusions, right? The higher dose isn't likely to hurt him, and if you don't try it, you will always wonder if it would help more than the lower dose. You went to Dr.B for a reason.

Glad the insurance thing went well- I've been thinking about you guys and praying for you all day. Aaaaarrrgh! on the IEP meeting. I've had plenty of battles w/ obstinate schools...it has got to be the most frustrating thing. Shame on them-they should know better. They are trained to know better...they've built their careers on knowing better! I'm feeling frustrated for you! And they are wasting all this time when your child could be getting what he needs. I'll keep up my prayers for you on that front.

Sophia is ranked #2 !!!! Can we help keep them there?

The little sprinkles on the icing on the cake!

Do you actually know what's in the drops? I mean, how could the doc decide whether its okay for you to take them if the ingredients are unknown?