peglem Posted September 10, 2010 Report Posted September 10, 2010 (edited) Just for fun last night I searched D2 receptors on PubMed, since my daughter's Cunningham results showed high antiD2. Well, those receptors are quite prevalent in the peripheral nervous system- heart innervation, thymus, urinary tract, enteric nervous system....well, you get the picture. Of course, there are different types of D2 receptors, but this sure got me wondering if some PANDAS symptoms may be caused by antiD2 autoantibodies messing up signaling in the peripheral nervous system. Increased urinary frequency and immune system dysregulation, for instance seem entirely possible w/o basal ganglia involvement. Really, just questioning....has this been studied? Edited September 10, 2010 by peglem
RNmom Posted September 10, 2010 Report Posted September 10, 2010 At the OCD conference in Washington DC this past summer, Dr. L spoke about dopamine receptors lining the bladder. She linked that to many of the urinary symptoms (such as bed wetting & urinary frequency) which can occur with PANDAS. That was the first time I fully understood that PANDAS is so much more than involuntary movements and OCD. It makes sense that the additional symptoms that we often see in our PANDAS kids could be traced to receptors reflected in the Cunningham tests.
trggirl Posted September 10, 2010 Report Posted September 10, 2010 I suspect you are 100% correct Peg.
peglem Posted September 10, 2010 Author Report Posted September 10, 2010 So, if the BBB stays closed, we could still see the urinary problems, digestion, etc. w/o an increase in tics (although some of those could be from the peripheral nervous system as well) and OCD? That may be what I'm seeing now. Been having some bedwetting here- but w/o an increase in the rages and SIBs. Her appetite is inconsistent as well. I'm seeing signs of strep reaction, but not getting the full blown ###### that usually comes with it. I've been so puzzled!
Fixit Posted September 10, 2010 Report Posted September 10, 2010 Just for fun last night I searched D2 receptors on PubMed, since my daughter's Cunningham results showed high antiD2. Well, those receptors are quite prevalent in the peripheral nervous system- heart innervation, thymus, urinary tract, enteric nervous system....well, you get the picture. Of course, there are different types of D2 receptors, but this sure got me wondering if some PANDAS symptoms may be caused by antiD2 autoantibodies messing up signaling in the peripheral nervous system. Increased urinary frequency and immune system dysregulation, for instance seem entirely possible w/o basal ganglia involvement. Really, just questioning....has this been studied? Do you have any info on the D1's and where they may be prevelant??
peglem Posted September 11, 2010 Author Report Posted September 11, 2010 Just for fun last night I searched D2 receptors on PubMed, since my daughter's Cunningham results showed high antiD2. Well, those receptors are quite prevalent in the peripheral nervous system- heart innervation, thymus, urinary tract, enteric nervous system....well, you get the picture. Of course, there are different types of D2 receptors, but this sure got me wondering if some PANDAS symptoms may be caused by antiD2 autoantibodies messing up signaling in the peripheral nervous system. Increased urinary frequency and immune system dysregulation, for instance seem entirely possible w/o basal ganglia involvement. Really, just questioning....has this been studied? Do you have any info on the D1's and where they may be prevelant?? Well, I just perused a lot of abstracts on PubMed, but it sounds like the dopamine receptors 1 through 5 are as prevalent in the peripheral nervous system as they are in the CNS. But, I was specifically looking for D2, because that's my child's problem.
nevergiveup Posted September 11, 2010 Report Posted September 11, 2010 Dr T told me antidop1 had something to do with the endocrine system. Maybe this maybe a starting point if u want to research antidop1 antibodies. My dd was high in this area, so if u find any info I would be very interested! Thx Just for fun last night I searched D2 receptors on PubMed, since my daughter's Cunningham results showed high antiD2. Well, those receptors are quite prevalent in the peripheral nervous system- heart innervation, thymus, urinary tract, enteric nervous system....well, you get the picture. Of course, there are different types of D2 receptors, but this sure got me wondering if some PANDAS symptoms may be caused by antiD2 autoantibodies messing up signaling in the peripheral nervous system. Increased urinary frequency and immune system dysregulation, for instance seem entirely possible w/o basal ganglia involvement. Really, just questioning....has this been studied? Do you have any info on the D1's and where they may be prevelant?? Well, I just perused a lot of abstracts on PubMed, but it sounds like the dopamine receptors 1 through 5 are as prevalent in the peripheral nervous system as they are in the CNS. But, I was specifically looking for D2, because that's my child's problem.
Fixit Posted September 12, 2010 Report Posted September 12, 2010 Dr T told me antidop1 had something to do with the endocrine system. Maybe this maybe a starting point if u want to research antidop1 antibodies. My dd was high in this area, so if u find any info I would be very interested! Thx Just for fun last night I searched D2 receptors on PubMed, since my daughter's Cunningham results showed high antiD2. Well, those receptors are quite prevalent in the peripheral nervous system- heart innervation, thymus, urinary tract, enteric nervous system....well, you get the picture. Of course, there are different types of D2 receptors, but this sure got me wondering if some PANDAS symptoms may be caused by antiD2 autoantibodies messing up signaling in the peripheral nervous system. Increased urinary frequency and immune system dysregulation, for instance seem entirely possible w/o basal ganglia involvement. Really, just questioning....has this been studied? Do you have any info on the D1's and where they may be prevelant?? Well, I just perused a lot of abstracts on PubMed, but it sounds like the dopamine receptors 1 through 5 are as prevalent in the peripheral nervous system as they are in the CNS. But, I was specifically looking for D2, because that's my child's problem. well since i started to actually get blood work for ds around 5+, because that is when his tic turned from an eye blink to a shoulder roll/shrugg..his tsh 3rd generaton has always been high...outside the normal perameters but every pediatrician said don't worry about it..(for those who don't know that means hypo thyroid)(sluggish) till last spring i had enough and put ds on thyroid med.... so 4-5 years of ds system working over time..new ped,,,even though she rolls her eyes at pandas says this needs to be addressed... i took ds to my endo who is outside box..does not take any ins...believes in glutin free diets for everyone!!!..wants ds tsh cut in half..... interest..at that same time ds started to pull hair.. dut has recently mentioned her experience with thyroid..and 2 things she takes in regards to thyroid that have made a real difference i will keep this on one of the burners as i continue find ds secret locker number...
Stephanie2 Posted September 13, 2010 Report Posted September 13, 2010 Peg, any chance the urinary frequency or bedwetting could be due to yeast? Very common with yeast. Is she acting silly or drunk-like?
peglem Posted September 13, 2010 Author Report Posted September 13, 2010 Peg, any chance the urinary frequency or bedwetting could be due to yeast? Very common with yeast. Is she acting silly or drunk-like? I don't think so- she's been getting diflucan, and she's not acting yeasty, either. There is no daytime urinary frequency- just the bed wetting. I'm gonna try to get her in to the doc tomorrow. She's been way off all weekend and just finished an all out PANDAS type episode. Here we go again. Maybe we'll get lucky and it will be something simple like a UTI.
nevergiveup Posted September 13, 2010 Report Posted September 13, 2010 Peglem, I started looking into the D1 antibodies, and found an interesting study looking at swallowing and digestion in Guinea Pigs when D1 is altered. Apparently, D1 impacts swallowing, I find this rather interesting becuz my dd has highly elevated antidop1 antibodies, and has had eating and swallowing ocd issues. What I still do not understand is do the antibodies reduce dopamine, so should we be looking at dopamine agonists or antagonists. Also has anyone heard anything about the mirapex study, this drug increases dopamine I believe. I am interested in hearing from anyone whom is involved in the study??
peglem Posted September 13, 2010 Author Report Posted September 13, 2010 Peglem, I started looking into the D1 antibodies, and found an interesting study looking at swallowing and digestion in Guinea Pigs when D1 is altered. Apparently, D1 impacts swallowing, I find this rather interesting becuz my dd has highly elevated antidop1 antibodies, and has had eating and swallowing ocd issues. What I still do not understand is do the antibodies reduce dopamine, so should we be looking at dopamine agonists or antagonists. Also has anyone heard anything about the mirapex study, this drug increases dopamine I believe. I am interested in hearing from anyone whom is involved in the study?? Near as I can tell, the antibodies do not increase or decrease dopamine- they disregulate it by causing signaling at the receptors or by blocking the receptors.
Fixit Posted September 13, 2010 Report Posted September 13, 2010 Peglem, I started looking into the D1 antibodies, and found an interesting study looking at swallowing and digestion in Guinea Pigs when D1 is altered. Apparently, D1 impacts swallowing, I find this rather interesting becuz my dd has highly elevated antidop1 antibodies, and has had eating and swallowing ocd issues. What I still do not understand is do the antibodies reduce dopamine, so should we be looking at dopamine agonists or antagonists. Also has anyone heard anything about the mirapex study, this drug increases dopamine I believe. I am interested in hearing from anyone whom is involved in the study?? maybe hence the vocal tics!!!!
Megs_Mom Posted September 14, 2010 Report Posted September 14, 2010 So, if the BBB stays closed, we could still see the urinary problems, digestion, etc. w/o an increase in tics (although some of those could be from the peripheral nervous system as well) and OCD? That may be what I'm seeing now. Been having some bedwetting here- but w/o an increase in the rages and SIBs. Her appetite is inconsistent as well. I'm seeing signs of strep reaction, but not getting the full blown ###### that usually comes with it. I've been so puzzled! We still get a reaction to illness - but now that she is treated, (at least so far, all fingers and toes crossed) we just don't get the dramatic peaks we used to have. Just nice little manageable rolling hills. After so long for you, I'm sure it feels wierd - but we see the same thing. Glad no rage!!!
peglem Posted September 14, 2010 Author Report Posted September 14, 2010 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.
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