PANDAS but very low ASO and Dnase

[dut]

Hello. I've been lurking here for a couple of weeks since our 4 year old daughter seemingly started with PANDAS and you have provided a wealth of info for us. We believe that what we have seen is PANDAS - sudden onset of OCD 5 weeks ago (with maybe some minor tics, grimacing and odd dancy moves that we only recognise now they're gone) one week later we had a positive strep culture at the pediatrician.

 

She was started on 14 days of amoxicillin and 1 week in things were even worse, nearly constant "worry tricks" as we called them, lots of handwashing, very emotionally labile, hyper, inattentive, agitated and hardly our daughter at all as we know her. At the end of the 2nd week of amoxi she was well on the mend and now nearly 5 weeks after it all began she is back to her old self.

 

Thing is - at the end of her amoxi course she was tested again for strep and also had ASO and Dnase titers done. I would have expected the titers to be on the way down (unfortunately didn't have them done when she was really bad) as she seems to be remitting so well even then but the titers were really low.

 

ASO <25

Dnase <70

 

Does this seem really odd or should we just be pleasd that she seems to drop her antibodies so fast?

 

Thank you for any info and thanks for all your posts. It was really important to me to be able to read all your posts on this forum as we watched our little girl falling apart in front of our eyes and to know that other people were going through this and that they were finding ways to cope and were able make things better for their children, so thanks again, Dut

[peglem]

My daughter's titers have never been terribly high. Once they were a little elevated. But, there is a clear pattern of positive strep tests correlated with OCD and movement "irregularities" (no professional has ever identified them as tics, exactly) and emotional lability. I have developed my own little theory, sort of, that makes sense to me- I'll tell if you want, but its kind of long and unsupported by any scientific studies. (not contrary to any- just hasn't been studied) I feel like I'm starting to make sense out of it all.

[dut]

I'd happily hear any thoughts that'll help us steer through all this.. dut

[peglem]

Okay, I'm warning you, its long! And it may not apply to you...but, I think what is going on with my child is quite different than an autoimmune disorder, although, it may have started out that way. If You have any questions- please ask- I'm trying to get this out quickly, so may not be totally coherent.

 

First of all, a bit of history...My daughter was dx'd autistic (age 3) and she is nonverbal. I believe this all started during her infancy and disrupted her neural development. I say this because it greatly influenced the course of her treatment (or should I say nontreatment) and led to a very late discovery of the strep problem. A lot of what I know now is hindsight. When she had eating issues (I think now her throat was sore) it was attributed to poor oral motor skills (due to the big "A"), as was her almost constant drooling from @age 4-7. She had some ear and sinus infections during infancy, for which she was given antibiotics. I think this is also when her yeast problems began. (I knew nothing about yeast infections or probiotics in those days.) What I now believe was OCD behavior was passed off as autistic self-stims- even her SIBs (yeah, she's doing it for the endophins!) Around age 5 or 6, we noticed that her pupils were almost always dilated, and she definitely found herself in the grips of fight or flight VERY frequently. I somehow came across the Mary Megson, G-alpha protein theory (I think it was the Burton congressional committee on autism) and looked into that. Here's a link if you're interested:

 

http://www.megson.com/readings/MedicalHypothesis.pdf

 

I didn't think too much about it at the time because, frankly I didn't really understand it. Later though, a psychologist, (not a very good one, but that's not the point) commented on how pretty my daughter's big eyes were and I answered that it was probably because her pupils were always dilated. She said women used to put belladonna in their eyes to dilate their pupils for beauty purposes. Coincidently, I had been reading a book that mentioned belladonna as an anticholinergic which set me on this whole path, investigating the cholinergic system.

 

So, the fight oor flight thing (aka terrified wild animal backed into a corner) comes from the sympathetic nervous system. What is supposed to balance that is the parasympathetic nervous system-whose neurotransmitter is acetylcholine. In anycase, dilated pupils are a sign that the cholinergic system is malfunctioning (unless you're in the dark-then its normal). I'm hoping to get to the point soon, really.

 

I did find a psychiatrist who was willing to let us try bethanecol (mimics acetylcholine in the body), per Mary Megson's article. The change in my daughter's anxiety level and sensory functioning was immediate and dramatic...a big YEAH, for our side. But, we still didn't know about the strep problems- in hindsight, she'd probably had almost constant strep for 5-6 years before the problem was discovered (and may God bless her wonderful new pediatrician who trusted me enough to check it out). The first time she was ever swabbed for strep (my idea- another series of seeming coincidences prompted me to request it) was when she was ten years old. She had no overt symptoms- no fever(she really doesn't get fevers anymore), no trouble swallowing (not a good eater though) and no throat inflammation...the pediatrician (and this was our 1st visit with him) thought we were crazy (I brought up PANDAS), but ran the test to satisfy me...He was very surprised at the positive result. This was the beginning of @ 3 years of constant antibiotics- not prophilactic yet- but the strep would comeback a few days after finishing a course of antibiotics. The only symptom: behaviors, which I have come to call her streppy behaviors. I kept her on probiotics and we assumed that would keep the yeasties away. About 18 months into this ordeal, she had her tonsils and adenoids out- we thought that would take care of the strep and so, did not do any antibiotics or strep tests (well her throat was pretty sore to be sticking a swab to it) for a few months. Things got really bad, the worst they'd ever been...3 months after the tonsillectomy we're back at the pediatrician, begging for help.

 

I should have mentioned before that sometime during all this it was suggested that the OCD be treated psychiatrically (I believe the NIMH website says that) and she was put on risperdal. Not sure if it helped or just seemed to when it was actually the antibiotics helping (know now it was the antibiotics). The bethanecol was dropped because it didn't seem to be working anymore.

 

So, back to the doctor 3 months post tonsillectomy- Allie was having bouts of really bad photophobia- not even able to view her aug com device because of the backlighting. Behavior was horrible rages- OMG, she was sooo miserable. She was positive for strep (this brought me to heart wrenching sobs- I thought we were done with it). She also had a pretty severe vag. yeast infection. So, back on the antibiotics, now with weekly diflucan added in for the yeast- but the strep is chronic again. She's pretty good when she's on antibiotics, but a few days off and she's gone again. The question I have now, is, why isn't her immune system fighting this off or even showing signs of fighting it off? We go to an immunologist (at this point her pediatrician is kinda looking for a specialist who will support, or recommend prophilactic antibiotics), who does some testing and says she is a carrier of strep, not infected. This is frustrating because her behavioral symptoms are disregarded as symptoms. So, then we go to a rheumatologist, who says it can't be PANDAS because her titers are not high. So, I told him maybe its not PANDAS and I don't really care whether it is or not. What we know for sure is that it responds to antibiotics. He gave the rx for prophilactic antibiotics and here we are....BUT

 

Over all this time (and this is where I'm finally getting to the point!) my daughter had regressed greatly from the wonderful improvements we had seen when we first started bethanecol all those years ago. I broached the subject of using bethanecol with her pediatrician...he said to try with the psychiatrist. The psychiatrist nearly threw me out of her office when I brought it up- would not even hear me out. So, back to the ped. I went, armed with Megson's G-alpha Protein paper. He agreed to give it a try...6 weeks ago. WOW! She's regaining all those things she lost. Its a huge difference and my baby is mostly happy again. She still has some rough spots, which made me start taking a look at yeast (I believe we finally have the strep under control) and the cholinergic system....yeast gives off an anticholinergic toxin. I mentioned this to her pediatrician and he said that strep does as well. I also discovered that risperdal has anticholinergic properties, which is probably why it seemed like the bethanecol was no longer working. So, maybe this all started out as autoimmune, I don't know. But, what I think now is that somewhere along the way, before we discovered the strep or the yeast- the anticholinergic effects of one or both of those weakened some part of her immune system...no fevers or inflammation in response to infections. And I think what I'm seeing behaviorally in response to the strep and yeast is more a cholinergic system problem than autoimmune. Acetylcholine is also active in the basal ganlia, so it makes sense from that standpoint too.

[peglem]

Okay, read all that and realize my point was not well made. Let me try again, more briefly. The fact that titers are low-very low, suggests to me that (especially in the face of a known positive strep test) the immune system is not responding to the strep for some reason. Based on the behavioral symptoms, though, I'm thinking that what's happening is that the strep and/or yeast are producing toxins that are disabling your child's cholinergis system. The result is a poor functioning immune system, movement disorders and disregulation of the basal ganglia and sensory processing systems.

 

What I'm suggesting is the break down in the system is at a different point in the neural pathways, but produces the same effect. Think of it like an electrical short- the problem could be in the outlet (at the source) or in the cord- either way, the result is the same.

[dut]

thanks for taking the time to reply.. lots to read up on.. I've been googling like mad for the last couple of hours :-)

 

just so much to follow up on and I don't feel we've seen the back of it yet.. few more "worry tricks" today. thanks again, I'm sure I'll be back with more questions... :-)

[michele]

I am interested in this disabling you mention in the cholinergis system. Can you elaborate more on this? I have never heard this mentioned before but it really makes sense about the toxins disabling the system. Where did you learn about this cause? I also wonder if the immunizations produce these toxins? After we used nystatin and amino acids for several months my sons tics went away. However he was still left with other side effects like ADD behaviors and emotional mood swings and compulsive thoughts. Where is this system located? Is this connected to the frontal cortex? Is there a way to restore these pathways? Have you been told to use supplements? If so which ones are you using? I am glad you posted here. It makes sense that the ASO titers would not be elevated with this scenerio. Are you still considering this as a case of PANDAS? Which Dr. do you see?

 

Michele

Okay, read all that and realize my point was not well made. Let me try again, more briefly. The fact that titers are low-very low, suggests to me that (especially in the face of a known positive strep test) the immune system is not responding to the strep for some reason. Based on the behavioral symptoms, though, I'm thinking that what's happening is that the strep and/or yeast are producing toxins that are disabling your child's cholinergis system. The result is a poor functioning immune system, movement disorders and disregulation of the basal ganglia and sensory processing systems.

 

What I'm suggesting is the break down in the system is at a different point in the neural pathways, but produces the same effect. Think of it like an electrical short- the problem could be in the outlet (at the source) or in the cord- either way, the result is the same.

[peglem]

I am interested in this disabling you mention in the cholinergis system. Can you elaborate more on this? I have never heard this mentioned before but it really makes sense about the toxins disabling the system. Where did you learn about this cause? I also wonder if the immunizations produce these toxins? After we used nystatin and amino acids for several months my sons tics went away. However he was still left with other side effects like ADD behaviors and emotional mood swings and compulsive thoughts. Where is this system located? Is this connected to the frontal cortex? Is there a way to restore these pathways? Have you been told to use supplements? If so which ones are you using? I am glad you posted here. It makes sense that the ASO titers would not be elevated with this scenerio. Are you still considering this as a case of PANDAS? Which Dr. do you see?

 

.

 

I think this Wickipedia article will answer most of your questions about the Cholinergic system.

 

http://en.wikipedia.org/wiki/Acetylcholine

 

I don't know where I learned about this cause...somewhere online, but I tend to just read stuff and then go through this domino effect type of thing where something I read raises some question in my mind or suggests a connection to something. Then I follow that and the process repeats until I run out of time...or get tired, whatever.

 

I think there is a way to restore the pathways- CLO & bethanecol, as suggested in Megson's paper.

 

I don't know if its connected to the frontal cortex or not, but probably- acetylcholine is very pervasive in the CNS and PNS. Try googling "frontal cortex & acetylcholine"

 

I haven't been told to use supplements, well except Allie's psychiatrist recommended fish oil- but not really in relation to this. Just because she feels it can hurt and may help. Also, Allie's pediatrician recommends probiotics and s. boulardii, which I do use. I'm rather sporadic with supplementation- frequently give SuperNuThera, have started SAMe for the last month (I think its helping, so I'll probably be vigilant about that one), I'm pretty good about giving CLO @ once a day- usually get some zinc and magnesiun in there- actually my daughter was waking up with muscle cramps awhile ago and magnesium helped so that's another one that I give pretty consistently. I don't really have a regimen that I swear by...all those vitamins and vitamin interractions and interdependencies- too much for my feeble little brain.

 

I don't know that I consider Allie's problems to be PANDAS or not...the rheumy says no because of the low titers and that makes sense, because those are the antibodies that are supposed to be attacking the basal ganglia. But, Susan Swedo, says that they were never able to prove that PANDAS is autoimmune: see her lecture here:

 

http://www.ucdmc.ucdavis.edu/mindinstitute...ded_events.html

 

Titer levels only indicate that a person has had a recent immune response to strep and enables them to establish a temporal pattern between the strep issues and behaviors. Titers can be elevated just from exposure w/o actual infection. My daughter does have the strep to behavior pattern from positive throat swabs. So, in that respect, she has PANDAS, but if you insist that PANDAS is autoimmune (as the acronym would suggest) then, I guess I'd have to say she does not have PANDAS, because if the antibodies are not there, how could they be attacking anything? But, the low titers did send me looking at other avenues-I just feel like we have to glom onto any little clue her body provides to try to figure this thing out.

 

The doctor I see is just Allie's regular pediatrician (and any specialists he sends us to in order to try to figure all this out). He is an amazing doctor, in large part because he has the humility to admit that he doesn't know- I bounce theories off him, bring in the research and we collaborate on trying to find solutions/causes...such a blessing to find a doctor that will hear you out and add his own medical expertise to help understand.