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Everything posted by monarchcat

  1. I would love to know the answer to this as well! If you find out anything, please post!
  2. My son had only one "dramatic onset" episode (tic) which coincided directly with a strep episode at age 7 1/2, but I believe he had had PANDAS for 2 1/2 years prior, even though he hadn't had diagnosed strep. He had a major change in behavior/emotion/impulsivity right after his 5th birthday, but I don't remember any particular illness around that time. He began having tics (gradual onset of eye blinking) when he was six which waxed and waned over the following two years. At 7 1/2 he developed a dramatic, overnight new tic after being tic-free for several months. 2 days later he was diagnosed with a raging case of strep throat. That is the episode that got me started on my PANDAS "learning adventure". LOL. He had another episode of strep a few months later, and while this one did not bring new tics, he did develop moderate separation anxiety and irrational fears about 2 weeks after antibiotics ended. He was on Amox for those two strep incidences. A couple months after that he had a severe sore throat which turned out NOT to be strep, but they agreed to start treatment before the results came back and put him on Omnicef for 10 days. I noticed no improvement after those ten days and believe that it would take a longer course of treatment to see results since it's possible that he has intracellular strep at this point. I will say that he had a fairly high exacerbation of tics during that illness (which WASN'T strep) but Dr. Cunningham told me that they believe that viruses can cause PANDAS kids to become symptomatic due to the blood-brain barrier being compromised. I agree with the others that you may want to contact Dr. Cunningham's office and participate in her study. For me, having this information is so important for actually accepting that he has PANDAS since he's never been a "classic" case. I believe this is the closest thing we have to a PANDAS "test" especially for those of us who's PANDAS kids' cases aren't that clear-cut.
  3. First, yes, Kathy at Dr. Cunningham's office is an absolute SWEETHEART. I am so impressed with all of them there, but having communicated mostly with her, I can say without reserve that she is such a doll! I got my son's Cam number today as well: 193. This puts him at the high end of the PANDAS scale! I was really surprised to see such a high number because he's not "classic" PANDAS and I thought we might actually be using this as a baseline because he didn't appear to be in an exacerbation period. I think with him, though, he's had this for a few years and the symptoms are more generalized and subtle. He has tics and emotional issues, but nothing nearly as severe as some of the kids I read about here and elsewhere. It's all so confusing!
  4. I give my son (8, 78 lbs) 3 packets a day, all at once in the morning, which provides about 2g total DHA and EPA.
  5. I have been giving my son (now 8) Coromega orange flavored "pudding" packets for two years now. He is an incredibly picky eater, so I was shocked when I was able to get him to take it. I started with one packet at a time, and let him chase it with an ounce of straight juice (his juice is always watered down at least 50% otherwise) and in the very beginning he got a hershey's kiss, too. After awhile I was able to get away with skipping the chocolate. These days he takes three packets at once, squeezed out on a spoon, with a juice chaser. He doesn't love it, but he takes it without too much complaint. It helps to keep it in the fridge as it tastes better cold. My big joke is that my kid won't eat a grilled cheese sandwich, but he'll eat orange flavored fish pudding. Go figure. LOL Oh, and my son tried a gummy fish once when it came as a free sample and didn't like it at all.
  6. Thanks! I realize I think you (or someone else) gave me this link before and I haven't read it yet... sorry! I am just still trying to get a grip and understand all this and it's a tad... overwhelming!
  7. My son was positive on a rapid strep test in april and given amoxicillan. After discussing PANDAS with his doctor, he agreed to re-culture him and check his ASO titers about 4 weeks after finishing the amox. His culture was negative and his ASO titers were less than 20. He didn't check any other titers (unfortunately). My question is this. Is such a low titer normal following a strep infection? I thought they were SUPPOSED to be high in any child 4 weeks post strep. Is this an indication to me that he could have PANDAS but we won't see high titers? I know realistically the other titers should be checked too, and hopefully will be at some point (we are in the process of switching drs), but I'm just curious about the low ASO titers, which I would have expected to be high regardless of whether he has PANDAS or not. Am I wrong in that assumption? Thanks!
  8. No, only labs so far were throat culture, thyroid and basic metabolic panel. I am in the process of switching drs. I am moving my whole family to a doctor at a family practice in town that comes highly recommended. My current ped's office is just such a factory, and my son's ped seems reluctant to go any further. I am hoping this new doctor will be more open minded and willing to do some testing. If not, I will have to figure out how to do/pay for the testing on our own. My son came home tonight and while telling us a story about an argument he and a friend had, my husband and I both noticed that he has a brand new tic... a shoulder shrug (both shoulders, but not completely symmetrical). I also noticed after that that he would continuously cross one leg over the other when standing. And he's been twirling his hair for the past few days. Another completely new tic. But, at the same time, he was in good spirits, despite having fought with his friend and was happy and loving with us (though this morning he was VERY argumentative and irritable). Thank you all so much for your replies.... I really appreciate the responses and the advice.
  9. I definitely haven't closed the door on possible PANDAS, but the ped is not really receptive to going any further with it based on the negative culture and low titers (though I know that those two things are not enough to discount it). I feel like PANDAS might be one piece of the puzzle, but he doesn't fit a lot of the typical PANDAS symptoms and severity. Although I generally like the practice, I think I am going to look for a ped that is more integrative. As soon as I casually mentioned the possibility of nutritional deficiencies, etc. he completely shut down (which I expected, frankly. I was thrilled that he was even willing to acknowledge the existence of PANDAS). I'm definitely not considering psychiatric meds. That's part of the reason I think I need to switch doctors, as our current ped says that a psychiatrist would be the next step. I feel like there should be many steps in between a throat culture and a psychiatrist! Though, I should mention that I have had my son in therapy for the past 2 years, and though it has helped some with social/friendship issues, it hasn't done much with his overall mood, etc.
  10. I wanted to update on my posts a few weeks ago about my son (8) possibly having PANDAS ([post=http://www.latitudes.org/forums/index.php?showtopic=4689&st=0&p=32305entry32305]http://www.latitudes.org/forums/index.php?showtopic=4689&st=0&p=32305entry32305[/post]) . I spoke with his pediatrician and he was at least open to the idea of PANDAS. He said that it is controversial, but that he does think a link exists between strep and tics/behavior in some children. He did a throat culture (non-rapid) on my son as well as blood work for ASO titers, thyroid, and a metabolic panel. All came back normal. His ASO titers were under 20. This was following treatment for strep a month before. I know that low ASO titers does not mean that it's not PANDAS, but between that and the negative culture, he didn't think PANDAS was responsible for any current behavior. DS definitely does not have "classic" PANDAS. I never would have even thought about the possibility except for an incident in December when he developed a sudden, new, dramatic head/neck thrust tic after many months of being tic-free. It developed overnight and two days later he became extremely ill with strep throat. After amox the tics waned over the next few weeks or so. His original tics were eye squint/facial grimace/hand clench that developed gradually when he was six and now comes back every now and then in a milder form (mostly the eye "squint"). So, the upshot is that we won't pursue a PANDAS diagnosis at the moment, but I will watch carefully for changes in tics/behavior and will have him cultured if I notice changes. The pediatrician said that from his perspective, the next step, if we wish to take it, would be a pediatric psychiatrist. To me this just equals medication and I'm not going to go there. What I do want to investigate further is supplements. I am a researcher/reader by nature, but I'm overwhelmed by the information about all the various supplements. Of course, I want to be absolutely sure of safety when I put something in my child's body, but at the same time I feel like he needs SOMETHING. He is chronically irritable, moody, angry, and argumentative. I feel like he just doesn't feel good and it makes me so sad for him. He is an incredibly picky eater and gets virtually no meat, vegetables, or fruits, so his diet HAS to be lacking. I feel like the extreme pickiness is also somehow tied in with the behavioral issues. He's almost phobic about new foods and it's a battle I can't win. I'm interested to know what you guys give your children, what brands of supplements you trust and what doseage. I know that every child is different and I'm not going to just blindly start giving things. But, I feel like a need a starting point.. some advice and real-life examples so that I can figure out what will be best for him. The ones I see that seem most beneficial (and please correct me if I'm wrong) seem to be: Inositol 5-htp Magnesium Taurate B-complex Omega 3 (I have been giving this for the past 2 years) Should I start with one of those or a combination? The tics are at a minimum right now, though I do see some from time to time. Mostly it's the irritability and moodiness that I'd like to help, though I'm sure it's all tied together. I am so grateful for any advice you can give...
  11. I am going to call my doctor in the next couple days. My son seems to be "fine" at the moment, following the few days of being emotionally off kilter, etc. Now I'm second guessing myself! But, the one thing that makes me think PANDAS is a possibility is the episode in December when he developed sudden, dramatic tics at the same time as a bad strep throat infection. I'll be interested to see what my doctor thinks, but I have a feeling it's going to be a "wait and see" kind of thing for now since he doesn't seem to have any tics or other symptoms at the moment, though there is always an underlying emotional rollercoaster. He is about 2 weeks post amox for his last strep infection. Should I ask his doctor to culture him again in a week or so? Should I request that they check his titers? And then if he has a flare up of tics and/or behavioral changes, etc in the future, we should culture again and/or check titers? I'll also ask him about culturing other family members as well.
  12. Hi, I'm so glad to have found this board. I have spent some time reading, and will be reading more, but wanted to post and perhaps get some feedback/input/advice. I'll give you the background first. My son is 8 and is extremely bright, has always been extremely verbal, etc, but has also been a fairly challenging child. He struggles some with anger, moodiness, irritability, some paranoia, etc, but nothing TOO extreme. Just more than the "norm" I think. He has a tendency toward what I would call "verbal defiance." He doesn't necessarily act out or disobey physically, but he argues and contradicts everything much of the time. He saw a therapist for a year and that helped him work through some of the ways to make life and friendships, etc "work". We've gone through plenty of phases where things are great, and he's agreeable and happy, etc. Though he was "challenging" from birth, his behavior really turned right after he turned 5. My child who had never had a temper tantrum, suddenly started having them, hitting other kids, hitting me, screaming, etc. After a couple months of dealing with this, I read "1 2 3 Magic" and we followed the program and he responded pretty well. When he was 6 he began showing evidence of a tic. It started with a mild eye squint, and then as days and weeks went on it progressed into a full, strong eye squint, facial grimace and hand clench (all at the same time). If memory serves this went on for a few months and then waned. Over the next year or so it would come back from time to time, though never with the same intensity as the first episode. His pediatrician said it seemed to be Transient Tic Syndrome and it could potentially come and go through adolescence. This past December he very suddenly developed a new tic. Over night he went from completely tic-free to a very pronounced and obvious head/neck thrust sort of thing that was almost constant, especially in the evenings. After this went on for a day or so, he woke up in the middle of the night with a raging case of strep throat, which he went on amoxicillian for. The tic was still present, but began to wane over the following weeks. I noticed no OCD symptoms or other behavioral changes. 2-3 weeks ago he was home from school with a virus and I took him to the dr after a few days and he tested positive for strep as well and went on amox. No sign of tics at that time. Now a couple weeks later I am seeing some symptoms that I am wondering about. He has been very clingy over the past few days. Hugging me incessantly when he can. He also saw part of a science show about the universe and became terrified about the universe ending some day in "The Big Crunch" (as scientists call the opposite of the Big Bang). He loves science and for him this was very unusual. He is a thinker and a worrier by nature, but he's never had a reaction anything like this. He's also been acting out physically with one of his friends. He's hit him and kicked him a number of times lately, which is out of character for him, though he has always struggled with maintaining friendships. He's always been very bright and very mature for his age. He's a deep thinker, very aware, and very intuitive, but has a tendency to think that people are against him or "don't REALLY like him". He can be wonderfully sweet, happy and engaging or he can be extremely negative, grumpy, anxiety-ridden and belligerent (though the really negative behavior is only reserved for us, his parents - he can control it elsewhere). Ok, so that's the history. I had not known about PANDAS until recently and as I read more, I can see that some things fit him and some don't. The way that the tics began with him don't seem to indicate PANDAS because it was a gradual onset, but the most recent bout with a tic - extremely sudden onset, completely new tic/movement, coinciding with a strep infection does fit. Some of the new behaviors seem to fit, but they are not nearly as extreme as I have read in the case studies. Could this be PANDAS? Are all cases fairly extreme or are there more subtle cases? I have had him on Omega 3 fatty acids for two years now (about 2.5g of combination DHA and EPA per day). If this is PANDAS, could that be helping the symptoms from being extreme? I am going to call his pediatrician, but I first want to arm myself with more knowledge and appropriate questions since I am not sure how informed he is about PANDAS. Oh, and I have been reading from this site: http://www.webpediatrics.com/pandasclinicalcases.html and this especially caught my eye: Those are all extremely accurate, both about my son and my husband and myself. Well, I'm certainly not one to call myself "highly intelligent", but I guess I'm smart enough, lol. My career was in IT before I left to stay home with my children, so the "computer savvy" part is certainly true. My husband is extremely intelligent. I would really appreciate any feedback... Thanks so much....
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