deby Posted July 7, 2010 Report Share Posted July 7, 2010 I was reading this article: PARC link Any thoughts? Link to comment Share on other sites More sharing options...
melanie Posted July 7, 2010 Report Share Posted July 7, 2010 www.expert-reviews.com my md is looking at this dx with danny shes published many med articles with this By the way ,I dont care what you call it just FIX IT!!!! Melanie Link to comment Share on other sites More sharing options...
fuelforall Posted July 7, 2010 Report Share Posted July 7, 2010 I was reading this article:PARC link Any thoughts? By god, that sure sounds like my son! Link to comment Share on other sites More sharing options...
fuelforall Posted July 7, 2010 Report Share Posted July 7, 2010 That said, there is no reason he does not have both. I suspect he does. He passes the PANDAS test as well, with motor tics. So it's a double whammy. Link to comment Share on other sites More sharing options...
Fixit Posted July 7, 2010 Report Share Posted July 7, 2010 www.expert-reviews.commy md is looking at this dx with danny shes published many med articles with this By the way ,I dont care what you call it just FIX IT!!!! Melanie Exactly!!!! Link to comment Share on other sites More sharing options...
Fixit Posted July 7, 2010 Report Share Posted July 7, 2010 That said, there is no reason he does not have both.I suspect he does. He passes the PANDAS test as well, with motor tics. So it's a double whammy. Do you think they have to be mutually exclusive? Link to comment Share on other sites More sharing options...
kim Posted July 7, 2010 Report Share Posted July 7, 2010 I wonder if anyone thinks that there may be some overlap with the condition being described here and PANDAS. Again, I'm going back to the reactivity of the immune system to the N acetylglucosamine in the strep wall. http://en.wikipedia.org/wiki/Chitin Chitin (C8H13O5N)n (pronounced /ˈkaɪtɨn/) is a long-chain polymer of a N-acetylglucosamine, a derivative of glucose, and is found in many places throughout the natural world. It is the main component of the cell walls of fungi, the exoskeletons of arthropods such as crustaceans (e.g. crabs, lobsters and shrimps) and insects, the radulas of mollusks and the beaks of cephalopods, including squid and octopuses. Chitin may be compared to the polysaccharide cellulose and to the protein keratin. Although keratin is a protein, and not a carbohydrate like chitin, keratin and chitin have similar structural functions. Chitin has also proven useful for several medical and industrial purposes. from the paper above Prick/puncture testing'3' produced immediate hypersensitivity reactions to glycerinated extracts of cathair and pelt, dust mite (Dermatophagoides farinae and D. pteronyssinus) and cockroach extracts (Hollister- Stier Laboratories LLC). I don't know what "glycerinated extracts," refer to here, but I have looked at "chitin" as being a possible problem for allergic/PANDAS types. Dust mites, and cockroach and even cat hair may be causing reactivity along the same pathways? https://www.achooallergy.com/blog/chitin-suspected-cause/ Research Group Studies Chitin As Suspected Cause of Allergies & Asthma http://health.msn.com/health-topics/asthma...p;wa=wsignin1.0 Asthma and Allergies: Sizing up a Suspected Cause Thought this was interesting too, in regards to the dry eye complaints http://www.ncbi.nlm.nih.gov/pubmed/19512904 Acidic mammalian chitinase in dry eye conditions. Link to comment Share on other sites More sharing options...
Fixit Posted July 7, 2010 Report Share Posted July 7, 2010 I wonder if anyone thinks that there may be some overlap with the condition being described here and PANDAS. Again, I'm going back to the reactivity of the immune system to the N acetylglucosamine in the strep wall. http://en.wikipedia.org/wiki/Chitin Chitin (C8H13O5N)n (pronounced /ˈkaɪtɨn/) is a long-chain polymer of a N-acetylglucosamine, a derivative of glucose, and is found in many places throughout the natural world. It is the main component of the cell walls of fungi, the exoskeletons of arthropods such as crustaceans (e.g. crabs, lobsters and shrimps) and insects, the radulas of mollusks and the beaks of cephalopods, including squid and octopuses. Chitin may be compared to the polysaccharide cellulose and to the protein keratin. Although keratin is a protein, and not a carbohydrate like chitin, keratin and chitin have similar structural functions. Chitin has also proven useful for several medical and industrial purposes. from the paper above Prick/puncture testing'3' produced immediate hypersensitivity reactions to glycerinated extracts of cathair and pelt, dust mite (Dermatophagoides farinae and D. pteronyssinus) and cockroach extracts (Hollister- Stier Laboratories LLC). I don't know what "glycerinated extracts," refer to here, but I have looked at "chitin" as being a possible problem for allergic/PANDAS types. Dust mites, and cockroach and even cat hair may be causing reactivity along the same pathways? https://www.achooallergy.com/blog/chitin-suspected-cause/ Research Group Studies Chitin As Suspected Cause of Allergies & Asthma http://health.msn.com/health-topics/asthma...p;wa=wsignin1.0 Asthma and Allergies: Sizing up a Suspected Cause Thought this was interesting too, in regards to the dry eye complaints http://www.ncbi.nlm.nih.gov/pubmed/19512904 Acidic mammalian chitinase in dry eye conditions. that is what i was hinting at...not as eliquently or with as much understanding and knowledge either...smarty pants the reaction is a pit/pan..a trigger....i won't go on.. in the second bolded area...are you saying the chain looks similar to fungi or strep and so the body is attcking it in the same way Link to comment Share on other sites More sharing options...
kimballot Posted July 8, 2010 Report Share Posted July 8, 2010 Deby - thanks so much for posting this. I think they bring up some very good points that we often do not like to think about. What if my kid does not really have PANDAS and the relationship to an infection is just coincidental? I agree with Kim - I know my son has increased reactions (including tics) when his allergies ramp up. Does he have PARC in addition to PANDAS - or do the allergies set up inflammation that allows a breach in the Blood Brain Barrier? I'm pretty sure about the PANDAS part because of his response to antibiotics over several exacerbations and his CamK scores. However, I also know that when we are very careful about his allergies he has fewer exacerbations. The best part of this article is that they really worked to find a solution for THIS PARTICULAR child. They started with PANDAS, but the antibiotics did not make a difference, so they moved on. That is what evidence-based practice should be - start with something that seems most plausible based on the evidence - then reassess and move on if it is not working. The problem most of us have had is just the opposite of this child - docs seem to start with something OTHER than PANDAS and when that does not work they do more of the same. Link to comment Share on other sites More sharing options...
Fixit Posted July 8, 2010 Report Share Posted July 8, 2010 The best part of this article is that they really worked to find a solution for THIS PARTICULAR child. They started with PANDAS, but the antibiotics did not make a difference, so they moved on. That is what evidence-based practice should be - start with something that seems most plausible based on the evidence - then reassess and move on if it is not working. The problem most of us have had is just the opposite of this child -[b] docs seem to start with something OTHER than PANDAS and when that does not work they do more of the same.[/b] Well Put!!!!!!!!!!!! Link to comment Share on other sites More sharing options...
deby Posted July 8, 2010 Author Report Share Posted July 8, 2010 Deby - thanks so much for posting this. I think they bring up some very good points that we often do not like to think about. What if my kid does not really have PANDAS and the relationship to an infection is just coincidental? I agree with Kim - I know my son has increased reactions (including tics) when his allergies ramp up. Does he have PARC in addition to PANDAS - or do the allergies set up inflammation that allows a breach in the Blood Brain Barrier? I'm pretty sure about the PANDAS part because of his response to antibiotics over several exacerbations and his CamK scores. However, I also know that when we are very careful about his allergies he has fewer exacerbations. The best part of this article is that they really worked to find a solution for THIS PARTICULAR child. They started with PANDAS, but the antibiotics did not make a difference, so they moved on. That is what evidence-based practice should be - start with something that seems most plausible based on the evidence - then reassess and move on if it is not working. The problem most of us have had is just the opposite of this child - docs seem to start with something OTHER than PANDAS and when that does not work they do more of the same. What you wrote is exactly my feeling, I don't have an answer for your question, I'm pretty new at this (my son started with the tics 2 months ago). I know that my son has allergies, and I know (by the titers) he had an infection. Right now is on abx, but the question till when? he is not 100% yet. What is affecting his tics right now? the allergies/the infection/both? The problem as you said, that I couldn't find a doctor that keeps trying, that is open to different things. I took my DS8 to an allergist, and she doesn't believe that allergies can cause tics. Still there are so many doctors that don't open their eyes to other possibilities. Very frustrating. Link to comment Share on other sites More sharing options...
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