D2 receptors

[purple66p]

Is anyone else on Abilify? This drug is supposed to "regulate" D2 receptors (increase where needed, decrease where needed.) My son has been on this for many, many years. He initially (within 1 day) has a very positive response, but gradually it wears off. His doc has raised it several times, but it always wears off. I'm wanting to get him off (he's gone from being a thin waif to a chubby kid since being on it) but dropping antipsycotics is ugly. (We've tried once before and rages went up 10x as well as depression.)

 

I'm interested in seeing what we get on the antiD2 test.

[trggirl]

Peg, did you start Rifampin/Augmentin again?

 

I think that is wonderful that she is learning again.

[peglem]

We had a little blip in getting that started-hopefully, we'll get started today. I know, I'm thrilled with her improvements!

[Megs_Mom]

Okay, well, we got rage last night! So looks like we're in for another 2 weeks of rifampin/augmentin. Its like we've got a very slow growing underlying infection...the rifamp/aug knocks it down and we get about 3 months before it comes back. Still, we're trending in a good direction- she can write her name again and is learning to count again, and can pay attention in school.

 

Well, that is too bad. So sorry - glad you have the r/a option. Hopefully that will work quickly so NO MORE RAGE! poor kid, poor mom.

 

I haven't been keeping up well in the last few weeks - I am giddy thrilled for you both in the progress in writing & counting! That is just stunning news. Congrats, mom.

[norcalmom]

Peg, I saw on another thread that ivig had finally started working for you. Could this be "page turning"? My ds had some flayed-especially bed wetting- which usually means exacerbation coming -for several weeks after ivig, but not some of the other stuff. It was wired- the usual symptoms/patterns were replaced. We are at 7 weeks now and things finally calming down. Ds was not as extreme as many posting about page turning, but the bed wetting thing was just plain weird. In the end I decided to look at it like a good sign, I knew ivig had done SOMEThIng. We had some irritability/eager times too- but it wasn't consistent and as long term as exacerbation.I've read some go thru periods for up to 12 weeks. I also think u were ding lower dose, so that may effect recovery too? Our ds had normal d1,2... High anti lysoG, high camk, but was not in exacerbation when we tested. So, possible that d1,2, go up only inexacerbatii(when his list of symptoms includes almost every pandas symptom I've ever read abiout, including urinary issues)

[peglem]

Peg, I saw on another thread that ivig had finally started working for you. Could this be "page turning"? My ds had some flayed-especially bed wetting- which usually means exacerbation coming -for several weeks after ivig, but not some of the other stuff. It was wired- the usual symptoms/patterns were replaced. We are at 7 weeks now and things finally calming down. Ds was not as extreme as many posting about page turning, but the bed wetting thing was just plain weird. In the end I decided to look at it like a good sign, I knew ivig had done SOMEThIng. We had some irritability/eager times too- but it wasn't consistent and as long term as exacerbation.I've read some go thru periods for up to 12 weeks. I also think u were ding lower dose, so that may effect recovery too? Our ds had normal d1,2... High anti lysoG, high camk, but was not in exacerbation when we tested. So, possible that d1,2, go up only inexacerbatii(when his list of symptoms includes almost every pandas symptom I've ever read abiout, including urinary issues)

Well, I can't really rule out anything at this point. But this started @ 3 weeks after her 4th 1.5g/kg infusion. It was her 6th IVIG, but the 1st 2 were low dose. But, I'm seeing an overlapping pattern- Those 1st 2 LD infusions came at the end of a 3 month period following the 1st rifampin treatment (given to eradicate what we thought was intracellular strep). She had been doing fairly well before those 2 infusions, so we assumed the infusions were to blame for the down turn. One week after her 1st high dose IV, we did rifampin/aug again. And we had the wonderful improvements that I gushed about on here. 3 months later (and 3 infusions later) we see this coming back. So, I'm wondering if what we are seeing w/ the rifampin is a great reduction of some intracellular slow growing bug, that takes about 3 months to grow back strong enough to cause an effect. Just to confuse the issue more, just as this episode was really ramping full steam, I got a strep at school notice...

[norcalmom]

She's had 4 HD ivs..how far apart? Seems like it SHOULDN:t be page turning.I would think at tht level of ivig (I'm guessing every 8 weeks?)her own antibodies should be pretty well surpressed. Wish I had more advice here...sorry. My only thought might be a cunningham test,to see if indeed anti-neuronals are still elevated after 4 HD ivigs, if they aren't - it might point you in another direction...if they are, you probably still have an infection somewhere.

[peglem]

She's had 4 HD ivs..how far apart? Seems like it SHOULDN:t be page turning.I would think at tht level of ivig (I'm guessing every 8 weeks?)her own antibodies should be pretty well surpressed. Wish I had more advice here...sorry. My only thought might be a cunningham test,to see if indeed anti-neuronals are still elevated after 4 HD ivigs, if they aren't - it might point you in another direction...if they are, you probably still have an infection somewhere.

Every 4 weeks...she has immune deficiency. That's not a bad idea- I'm thinking still an infection. She has low IgA as well- makes it easier for those bugs to slip past mucosal defense.