peglem

I always bought the pill crushers and found they were well worth the expense! I actually found some at the dollar store once and bought several.

Sorry, Kim, I really don't. The area that I've studied the most is in the cholinergic system, and that's so complicated I can't fully comprehend it. Medical science doesn't fully understand it, either. And the thing is...the solutions I've found for my child seem to be working, so unless my dream of med school comes to fruition (heehee), or things start to go downhill for her, I'm not doing much research these days. I used to make myself crazy trying to understand all this stuff-everything leads to connections to something else. Now I just seek enough understanding to figure out what to try out, solutionwise. I feel great right now, because we had 5 days w/o an anticholinergic meltdown here, and though that streek has come to an end, I think I know what to do now.

I almost hate to mention this, because it means yet another direction for research, but its possible the low values for yeast and bacteria are because of the formation of biofilms. This is when bacteria and (sometimes w/yeast) form a community, almost like an organism. When this happens, a coating is formed over the community which is fairly impenetable and allows the colony to hide from the body and from most antibiotics. Most antibiotics do not kill the organisms protected by the biofilm, only the "satellite organisms" sent out from it. The only antibiotic that has been shown to penetrate this protective film is...drumroll please.....zithromax!

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.

I love Wickipedia-it so helps me make better sense of it all: http://en.wikipedia.org/wiki/Acetylcholine and from the bottom of that page: Synthesis inhibitors Organic mercurial compounds have a high affinity for sulfhydryl groups, which causes dysfunction of the enzyme choline acetyltransferase. This inhibition may lead to acetylcholine deficiency, and can have consequences on motor function. That's a nice little connection that deserves a little more study!

I used to be one avid little researcher...the intensity has worn off over the last few years. But, the cholinergic sytem, as it pertains to especially the parasympathetic nervous system (PNS) is something that I'm still pretty up on. Here's the thing (and it still confuses me a bit) even though acetylcholine is acetylcholine, there are 2 different kinds of cholinergic receptors, nicotinic and muscarinic. It seems to me that the muscarinic cholinergic system tends to be more regulatory than the nicotinic. The nicotinic cholinergic system seems to have more direct action. (nerve to mucle stimulation). Also, acetylcholine (Ach) is so pervasive in the body, really seems to have some effect on all body systems- really makes it hard to study and figure out. In anycase, its a bit different than most neurotransmitters because its not a matter of a nerve cell containing Ach and secreting it into the synapse. Instead, the cell contains the components to make acetylcholine (acetic acid and choline) and requires acetyltransferase to synthesize Ach from the components. (can't remember anymore if that happens in the cell or in the synapse-not sure how important that is.) Then, instead of "reuptake into the secreting cell (like most neurotransmitters), an enzyme, acetylcholinesterase, is required to break it back down into the 2 components, which are then recycled and stored for reuse. This is what makes supplementation a bit iffy...just having enough choline and enough acetic acid does not mean that they'll form a happy union and start neurotransmitting for you...If you don't have the catalyst (acetyltransferase), they don't mix. Or there may be a toxin blocking the receptor. Its like anything, the more moving parts, the greater the chance that something will break. Now, the medication my daughter is taking, bethanecol, only works on the muscarinic receptors (as far as they know) and supposedly does not cross the BBB (as far as they know). Yet it does seem to help with fine motor control (which is supposed to be nicotinic). However, I seem to recall reading somewhere that while the end of the neurotransmission chain (nerve to muscle) is nicotinic, muscarinic receptors are further up in the chain-so do have an influence. One last thing, on the Megson paper: I really, really wish she hadn't included her theory on vaccinations causing the G-alpha protein problem...whether its true or not, it makes it hard to bring this to doctors for consideration because for many, that makes the whole paper suspect. The paper would be perfectly valid w/o her proferring her theory on causation. I'm not saying she's wrong (I really don't want to debate the whole vaccine issue-gets us nowhere), just that it really doesn't matter as it pertains to logis of a solution. I'll have to come back later- gotta take care of the kiddo.

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.

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.

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.

I was surprised that there was no section on acetylcholine.

My daughter has been on a zith regimen since @ December...250mg daily for 5 days then 7 days off. She gets her liver enzymes checked every 2-3 months. Don't have any research for you, but I know that zith builds up in body tissues, instead of just going in, killing the bacteria and exiting. That's why the rest in between dosing-to clear it out of tissues before re-dosing. Zith was not our pediatrician's 1st choice either, but it is the one that seems to work best. He did check with an infectious disease specialist 1st.

No no Peglam, when we switched from the Ped to a family physician and I requested a full copy of their medical file transfered to new Dr. I was told that they didn't really need anything except their vax record. I told them that I would come in to pick up the files. They said that they would send it to new office. I said "no, I would rather pick them up." Then I was told it would be 40.00 per file if I picked them up. I asked why they would possibly charge me, if there was no charge to send it. I was told, it was because I might lose them! Sounds like quality medical care, hau? As far as the MRI report, don't you know that they ship that stuff off to a data storage company. Useless stuff like that! Probably cost me $1000.00 to get a hold of that. Hmmm, I have on several occaisions requested and recieved copies of my daughter's medical records. I usually have to pay for them- something like 5 cents a sheet for copy cost. By now, her file is the size of a grand novel. Now, I just order the past year and add it to what I have. It sure comes in handy when we go see specialists, or if we "switch" specialists (translates to old specialist didn't do diddly). I pull out the labs or exam reports that I want them to follow up on. Whenever I get imaging done I request a copy of the test (but not 8 days worth of eeg tracings!) and the report-never had a problem. Another reason that I like to do this is that occaisionally they'll get something wrong on an exam report and I can make sure its accurate.

Huh? My daughter was wired up and monitored for 8 days- she is very hyper and active- I assumed they could tell the difference between seizures and motor activity. I don't know how old your son is now, but the report should still be in his medical records and you should be able to get a copy.

My daughter had an 8 day VEEG. No seizure activity was identified, but the neurologist said the highly abnormal activity throughout was consistent with somebody who does have seizures. That, with the episodes we were seeing at home, resulted in a rx for lamictal, which has been helpful.

Well, she really hasn't been diagnosed, officially. Her doctor wanted to get help from the immunologist and rhuematologist. He clearly admits that this is beyond his expertise (although, I gotta tell you he did the research and knows more about it than either of those specialists- he just assumes they are keeping up, because he does, and can't imagine other docs don't). Botton line, he believes its PANDAS, but with other specialists just saying she's a carrier, its a lonely position to take medically! The rheumatologist did prescribe prophilactic penVK, when I said I didn't particularly care whether it was PANDAS or not, we know for sure that its SOMETHING that responds to antibiotics. Once Allie's pediatrician had his recommendation of prophilactic antibiotics- he took it from there. PenVK didn't work very well. We already knew from the past 2 years that she had the best response to zith- she was on antibiotics nearly all the time anyway- as soon as a course was over the strep came right back. So, we're using zith, and so far-not too bad, as long as we keep the yeasties at bay. So, its really just a matter of we're doing what works, even if we don't have it all figured out with a pretty bow on top.

Carrier means they harbor the bacteria but do not get sick from it. They can infect others. I don't think my daughter is a carrier, though, because 1) She does gets symptoms, they are just atypical, all behavioral, and 2) There have been many negative swabs-which should not happen for a carrier. My daughter's titers vary from extremely below normal range to slightly above normal range. I think this has more to do with a poorly functioning immune system than anything else, since "typical" symptoms are the signs that the immune system is fighting the disease. My daughter NEVER gets a fever. She used to, years ago...but not for a very long time.

Well, my daughter never had elevated titers either, but a very clear pattern of "behaviors" (mostly OCD- she is nonverbal so is hard to tell if movements are tics or frustration) linked to +strep tests. Her pediatrician has actually been the most supportive. PANDAS is not an official dx. (there isn't an insurance dx code for it). He sent us first to an immunologist because as soon as she was off antibiotics the strep came right back. So we wanted to see why her immune system isn't clearing the strep. The immunologist did some testing and declared her a strep "carrier". Her only symptoms are behavioral...BUT, those are symptoms! I could always tell just from her behavior when the strep was back and when the behaviors were absent- negative swabs. Her pediatrician was the one who listened and trusted me. So then we went to see a pediatric rheumatologist, who was dying to dx PANDAS (he said because its so rare), but also pronounced her a "carrier", because there were no high titers. I was so frustrated and confused. Maybe the strep was a red herring and there was something else going on? Finally, her pediatrician just decided that no matter what it is...it responds to antibiotics, zith especially, so we'll just deal with it. I'm not sure what he did about a dx code to justify the treatment to insurance. Personally I think my daughter had the strep problem for so long, her immune system just was not responding anymore...also, I've read somewhere (but don't remember exactly where-sorry) that kids who've had PANDAS for a long time or a lot of episodes, usually don't have the high titers anymore. My other theory is that her strep is part of a biofilm complex that hides it from the immune system and we were only treating/detecting cast-offs from the biofilm. This actually makes a lot of sense to me given her response to "zithromagic". It is the only antibiotic that has been found to break up biofilms.

My daughter had a tonsillectomy. The strep was back a few days after the antibiotics were finished. But, my child is, I think, a bit atypical as far as PANDAS goes. She is autistic and nonverbal. So looking with my 20/20 hindsight, I believe she had strep (chronic and untreated) for at least 5 years before she was ever tested for strep. Her behaviors and OCD were considered to be autistic stims and "normal" for autism. At age 10, she was finally tested for strep. Doctors really couln't get a good look at her throat and had no good reason to check for strep. She doesn't get a regular immune response- no fevers. She had eating issues from early on and I wonder how much of that may have been because of sore throats...again, it was considered normal for autism and assumed to be sensory processing problems. Anyway, back to age 10, I had heard about PANDAS and just asked for her to be tested...the pediatrician was amazed when it came up positive. She was given a 10 day course of antibiotics and we thought that was all solved. Several months later, her behaviors were very wild and way, way out of control. Her teachers and I tried like crazy to figure out why. (I was so stupid thinking that one course of Kephlex fixed everything). Finally, decided to see if she was sick. She tested positive for strep. Over the next 18 months, she was doing antibiotics and getting strep again about 3 days after finishing a course. Then back on. The second time she tested positive for strep, her doc and I (who had looked into the PANDAS thing after I was right about the 1st strep incidence) talked about how her symptoms were all behavioral. He tested her ASO titers which came out below range? (30 something) and he tested them a few times during that 18 months. They did fluctuate, but only once came back slightly elevated. Yet we had this pattern of strep=OCD and horrendous ragey behavior. Times when she was calm and happy correlated to negative strep tests. So, she was referred to the ENT, who does not believe in PANDAS (cause he's never heard of it) and declares her a strep carrier (so why the negative tests?). My pediatrician talked to him and between the three of us, we decided to try tonsillectomy. Then, like I said, the strep/antibiotic cycle started again, shortly after that. She's been on prophilactic zith for about 5 months now...and its under control. Sorry so long, its just that I wanted you to know that my results may be much different than other people's. My child did not have inflamed, swollen tonsils with the strep-"just" behaviors and OCD. (we don't know if those motor things are tics or not- maybe) I don't even know if her problems are really PANDAS. The rheumatologist said no because she didn't have the high titers, but I've read the behavior/strep patterns, even in the absence of high titers, indicates PANDAS- well past the initial stages. At any rate- it acts like PANDAS and the treatment is the same...so I don't really care. One good thing that came out of the tosilladenoidectomy is that she no longer has frequent sinus infections.

My daughter has a similar reaction to yeast (which is tricky to fight when on antibiotics) as she does to strep. She's more hyper when yeasty, more ragey when streppy...but there is a lot of overlap. She is nonverbal, so I have to guess based on behaviors what is going on. When she still has problems on zith- I treat for yeast and that usually resolves it.

I think the correct answer depends on who is asking and why. I would answer a nosy neighbor with "she has a lot of health/medical issues." But, the school would likely be asking to determine what accomodations she needs to be successful.

Special needs are needs that the typical person does not have. Any label applied or not to your child, changes nothing about who they are or what they are capable of. If you don't like the SN label- don't use it, nothing will change. You may be a bit perturbed, though, if others use it referring to your child. Humans seem to love categories and labels- helps us define, control and make sense of our world, I suppose.

The script label says: This is a white, oval shaped tablet imprinted with PLIVA on the front and 787 on the back. Pliva is the manufacturer or distributer- it says PLIVA INC on the bottom of the label.

Allie's tablets are white. I have never seen red azith.

I do notice immediate improvement, but not sure what that means in your case. We've also had yeast problems which present similar to strep behaviors, except less OCD & more hyperactive. I give probiotics 2-3 hours after the zith dose. At the end of the 5 days on, She gets a diflucan and to combat that killing the good yeast, she also gets s-boulardii. I think I'm walking a fine line here as far as intestinal flora goes- hard to keep it balanced. She gets a good multivitamin, SAMe, CLO, & fishoil. A few times/week I throw in extra vitamin C and E. Just recently we've added bethanecol back in (she's been off for @3 years) and it has helped alot with the off-zith periods and she is beginning to bring back skills that were lost (or apparently, buried) over a several years regression period (caused by chronic undx'd strep).

Yes, that is my daughter's regimen. I have suggested 5days on/ 5days off, but her dr. believes it is safer to do the 7 off. He also checks her liver enzymes every 2-3 months. He wants to make sure the zith has completely cleared from her system before she starts a new round. Day 4 off, she has pretty mild symptoms, but I'm starting to just see them begin. By day six, the OCD is getting to the moderate level. By day 7 we are very glad we can give her the "Zithromagic" tomorrow. Its really only that last day that seems pretty bad, but still compared to pre-treatment days, its not so bad at all. I do think we need time in between to beat back the yeasties as well.