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Everything posted by Lynn777

  1. Since we are at the very beginning stages of this, we had the initial consult. The Dr. ordered the following tests: Anti-Strep (ASO) Anti-DNase B Streptozyme Myoplasma Pneumoniae (igG/Igm) Lyme Western Blot Quantitative Immunolobulis IgG Subclasses Ferritin Ceruloplasmin Pneumococcal Antibody Titers CBC w/Diff Vitamin D Levels We had positive strep in February & May, both treated with Amox & all symptoms went away within 72 hours. My older son had a respiratory infection shortly after the consult & I had noticed my younger son starting to exhibit a few symptoms returning. Dr. said he was going to put him on a round of Augmentin. I don't know why he didn't keep DS on the Amox & I know there isn't a "PANDAS" test per se, but it was my understanding the above blood work would give a better indication of what we are dealing with. I don't know, I am just tired of being sad, frustrated & confused all the time. Anyway, thanks for listening & your responses.
  2. Maybe the dosing is the issue. He was on 400 mg of Amox 2x a day & he was then put on 250 mg of Augmentin 2x a day. I am not sure why the Dr. reduced the Augmentin dose, I just assumed it was because the Augmentin was stronger. It just didn't make any sense to me because his response to the Amox has been so rapid (within 72 hours) & drastic and the Augmentin seemed to do nothing. I thought maybe it was already not working anymore & maybe I'm on the wrong track. Thanks.
  3. Hi Everyone, I have just started the process of having my son tested for PANDAS. The doctor has ordered 12 different blood tests & believes from DS's clinical history that he is a PANDAS candidate. Since we just had a postive strep test before the consult & his symptoms resolved after 10 days on Amoxicillin (second time that happened with 2 months), he decided to give him another 10 day dose of Augmentin & then see what the blood tests revealed. We haven't gotten the blood tests back yet, but my sons tics returned while on the Augmentin, it didn't seem to have the same effect as the Amoxicillin. Does this make any sense? Does it mean anything? I'm so confused. Thanks, Lynn
  4. I agree with the other post. I had ADD as a child & my symptoms became less debilitating as I got older, but it was because I wasn't confined to the classroom, not because I "outgrew" it. I know I still have attention issues. Also, it seems when the "H" is there the hyperactivity does calm down as kids get older, but again that doesn't mean they have "outgrown" the condition. I think the condition just changes over time. I'm not saying it isn't possible, but it hasn't been my experience.
  5. Hi Christy, I can PM you Dr. T's contact info. I am afraid I am not the best person to answer your questions, since I am so new to this myself. However, I do know you can have PANDAS without a painful strep infection. Also, I told Dr. T that I had chronic strep from the time I was 6 - 16 & he said he hears that a lot. So that would lead me to believe there can be a family connection. Although, I do not have tics. In fact I had strep throat when I gave birth to DS, but I was on painkillers & didn't even realize it until they wore off. Best of luck to you!
  6. Thank you all so much, I really appreciate your comments, understanding & advice! I am going to pursue having DS tested further. I am not going to continue with Dr. K at this time because of the IVIG push. I went ahead and spoke to Dr. T on the phone today (I received some PM's about him - both positive & negative), but he is close to me in NJ & I liked him on the phone. Also, he didn't push anything on me other then he recommended blood tests, he seemed conservative & for now that's what I'm looking for. So, I think I'm going to start there & if he doesn't work out I will pursue Dr. L in MD. It's amazing that both doctor's feel strongly we are dealing with PANDAS & I really didn't think my son fit the criteria. I guess we'll see what the blood tests reveal... Eljomom: We too are on lots of supplements. We had the IgG blood test & we were given a full report portfolio on DS's results. It was very well done. I know the results are controversial, but we have seen improvements taking DS off gluten. I will tell you this, we started him at 80% gluten free, which is what the doctor recommended, but we had to go 100% to really see results. Let me know if you'd like any additional information. The diet was hard in the beginning, I almost quit like 5 times, but now it's like second nature.
  7. Hi Everyone, I have been off the ACN boards for a while and when I was on, more often then not, I was on the TS forum. However, I have posted here in the past & I have read a lot regarding PANDAS/PITAND so that I’d know what to look for in my son if he presented with more symptoms. I won’t go into my long drawn out story (which I have posted here before), but the basics are… My son had a few episodes of tics in August of 2009 & again in February of 2010, but then on April 18th 2010 he had a major onset of tics, OCD & separation anxiety. We immediately had a CBC, thyroid test & allergy tests. Everything came back normal except he had high intolerance to Gluten/Dairy. We put him on a strict diet, started supplements & cognitive behavioral therapy. After a few months, the OCD & separation anxiety all but went away & he was pretty much back to himself. I also think we have managed the tics, but they are still there & exacerbate at times. He does not have any other issues, no anger, sleep disorders or deterioration at school. We saw a neurologist at CHOP & she diagnosed him as having a tic disorder & said no further treatment was necessary. So I ruled out PANDAS. Fast forward to this year, he had a constant coughing tic for over two months, then he was diagnosed with strep & an upper respiratory infection, he was put on amoxicillin and within 3 days the cough tic & all his other tics vanished. In addition, his personality became more vibrant (like I said, he’s a great kid, but there was something different about him). Anyway, the tics did slowly return after he went off the antibiotics, but remained very mild. Then a few weeks ago we noticed the tics were increasing & he seemed lethargic, a few days later he was complaining of a sore throat & he had a fever. I took him to the doctor & he tested positive for strep. He was put on amoxicillin again and the same exact thing happened -- within 3 days the tics vanished & we saw the perky personality. So, it got me thinking about PANDAS/PITAND. Anyway, I emailed our full story to Dr. K & his response was “your son DOES NOT have TS. You need to get him a work-up for PANDAS.” I was sort of speechless, it seemed so matter-of-fact! The problem now is, I don’t know where to go from here. I am very confused & I’ll be honest and say currently he is nowhere near bad enough that I would consider doing something like IVIG, but there definitely seems to be some connection with the antibiotics. I found a few past posts that Dr. K almost always pushes IVIG, so should I even bother with a phone consult? If you have any specific experience/advice feel free to PM me. I guess I’m stuck because his symptoms are mild, so I don’t want to treat him for something he doesn’t have, but on the other hand what if we are just catching it early & then I don’t treat him for something he does have & it gets worse? What do you all think? P.S. I live in the suburbs of Philadelphia if anyone happens to know any good doctor’s in that area. My pediatrician said he doesn’t understand why there would be any connection with antibiotics reducing his tics!
  8. Thank all, I just don't know what to think, I've never really thought he fit the pandas profile or even the TS one for that matter, although he has both vocal & motor tics. This is all so confusing, frustrating & all consuming. As for the abx, it's nothing special just amoxicillin, but something has definitely reduced the tics & although he's never really moody, his personality just seems more evident. I know that sounds strange, but I don't know how else to explain it.
  9. Hello All, I'm not sure any of you remember me, but I was on the Pandas board for a short time last year. My DS (5) had a somewhat sudden onset of tics and mild OCD in April of 2010. We immediately started him on supplements & diet changes. I believe the supplements definitely helped eliminate the mild OCD, so all we have been left with are tics. He was diagnosed by the neuro as having "a tic disorder". He has no other P.A.N.D.A.S. symptoms -- he has no rage, he is not moody, no meltdowns, sleeps great, etc. etc. So, I ruled it out and never pursued it further. Also, to our knowledge, never had a strep infection. Although I had PLENTY in my life. Anyway, he was recently diagnosed with bronchitis & possible asthma, the doctor put him on his first dose of antibiotics ever this past Tuesday. Well, I noticed his tics have been non-existent and his personality has been "more chipper". I haven't said anything to anyone, but then MY HUSBAND said something to me about it tonight. Now, you have to understand, my husband does not have the same emotion about my son's condition & rarely even talks about it because he thinks I over react, so the fact he said something is huge & frankly shocked me! All this said to get to my question --> does this mean anything as far as P.A.N.D.A.S? Is it meaningful in any way that he is having this response to antibiotics? Or is it just a coincidence or can that happen with tics/Tourettes too (I don't remember reading in any of my research that antibiotics help with TS)? Thanks for ANY input... ~Lynn
  10. Thanks so much! I think I am going to move forward with the skin prick. We already had the IgG food testing, but this will be for environmental allergies. I just want to rule everything out. Also, he now has a 103.6 fever & his cough has become very bronchial, so I'm guessing part of the tic spike this weekend was do to the illness setting in. That said, he's been coughing for 2 months now, so it's not the answer to everything, but it answers the spike & coughing in his sleep. Take Care, Lynn
  11. Hello, Well, we have been dealing with a constant/chronic coughing tic for over two months! The thing is we are definitely noticing DS has two distinct coughs. One is short/dry = tic and the other is longer/phlegmy & seems to be the one he has during the night. Anyway, I spoke to his doctor & he said to take him to the allergist and see if maybe his allergies are exacerbating the tics (the same doctor that told me his allergies didn't have anything to do with his tics). So, I made an appointment with an allergist & they want to do a skin prick test, but I am terrified this will make him tic even more. Anyone else have it & if so, any extra tics? Sorry if this question has been asked before. Thanks, Lynn
  12. Actually both! It is relaxing, but it is also magnesium & is absorbed quickly and easily through the skin and therefore can reduce the tics. It also removes toxins from the body. In fact, there are actually many believed benefits. Here is one of my favorite articles on it: http://www.care2.com/greenliving/health-benefits-of-epsom-salt-baths.html# We use the baths all the time! Good luck.
  13. "Front of the Class" is not like some of these other documentaries. I am a mess about my son's tics & even though "Brad Cohen" does have severe TS, somehow this movie is still inspirational. I watched it very cautiously thinking I would turn it off if I had to, but I was fine. Again, I am really bad with anything media/TS related, so I feel pretty safe giving the movie a thumbs up. The only thing I wish they would have mentioned or worked into the story is that not all kids with TS have such intense tics. We will never get past the stereotype that "most" tic disorders are severe if no one EVER tells the other side of the story. In addition Brad took many meds & in his book he says he thinks they might have contributed to the continued severity of his tics, but that too is left out of the movie. Just my humble opinion -Lynn
  14. My son has ADHD & in most states it is illegal for a teacher to suggest medicating a student. In fact teachers should be very careful how they approach the subject altogether. They can ask if there are any specific issues you (as a parent) would like to share with them or give you a form to fill out, but they should not be suggesting a diagnosis or meds. The advocate I spoke to said the teacher can voice their concerns & recommend an evaluation, but that should be the extent of their involvement. That said, I have had just about every teacher ask me about medications. My son did take ADHD meds for a while, but the schools questions & attitude about it frequently annoyed me.
  15. Cheri, Did you ever use NAC? I don't see it in your signature. The studies are very interesting. I'd love to try it, but am worried because my son is only 5. I don't want to over load him with any kind of "meds" natural or otherwise. I'm hoping to talk to his integrative doctor about it the next time we meet. ~Lynn
  16. I get the shot & my husband gets it, we hope that decreases DS's chances of getting it at least a little. As others have said, I've about had it with waxing, so I'll take a few days of the flu over the waxing any day. It's probably selfish because my son doesn't mind his tics, but still I'm not vaccinating on this one!!!! I wish I knew more before vaccinating at all (JIC)! ~Lynn
  17. Here's an interesting article I posted a while back on the ADHD board. It's about an ADHD Allergy/Pesticide study, but we know alot of these disorders are or can be "similar". If they bother kids with ADHD, no doubt they can bother kids with tics... http://www.aolhealth.com/condition-center/adhd/pesticides-allergens ~Lynn
  18. I agree with the Hansen's & we also buy natural cane sugar soda from the health food store, but we really limit it to special occasions. Are you tired of reading labels yet? I know I am. Our local pizza place (which we love, we are very friendly with them) just started offering gluten free pizza. I'm so excited to try it. Doesn't solve the dairy issue for us, but 1 out of 2 isn't bad!
  19. Hello, Welcome! Sorry to hear what you are going through. I don't have a lot of time to write, but wanted to mention two quick things about the Bonnie's. 1. If you do start them, I would give it much longer then just a few weeks before trying something else (unless of course you think they are working against her) it took us 2-4 weeks to notice any change then it progressed from there. 2. I make my son a smoothies in the a.m. & one in the p.m. & that is how we get all the pills down. He actually likes them now! Lastly, I would clean up her diet as much as possible right away. No artificial colors, preservatives, sweeteners. No msg, high fructose corn syrup, etc. Stick with whole foods. Best wishes. Lynn
  20. I agree, I don't have tics, but react very badly to non-organic apples due to the pesttisides. I actually used to have to wash them with soap and water or I would have an allergic reaction. We only buy organic too!
  21. Thanks everyone, First, We adore our dog and would never make a spontaneous decision to get rid of her unless it was warranted. We have had the IgG testing, but not the environmental allergies yet, I think when we go back I'll have them check for that too. I know most people tic more at home, the only reason I thought is was strange is because my son said "he felt better" at school and at his Aunts house. That to me didn't sound like suppression, it sounded like something in his environment wasn't bothering him as much. Maybe at 5 that's just the way he describes it, who knows. I just got scared about the dog right away, since animals are always thought of as allergy triggers & I do believe that many of my sons tics are triggered by allergies, not all, but many. Cheri, you are right about me though, I have to start dealing better. I am undoubtedly a trigger for him with all of my stress and anxiety. I try not to show it, but I believe he (and my older son) pick up on it big time! We do have a hepa filter in his room, bought it a few months after the major tic onset! Thanks!
  22. Kiley Ann, Thanks! That was one of the most encouraging posts I have read thus far. I thank you for taking the time to remind us that our kids are people and not just their tics. Reminding us that attitude and upbringing means alot! You are right, at times it is hard to believe right now, but we need more posts like this to remind us new comers that it can turn out okay! My greatest wish for my son is that he is happy in his own skin, if I knew that was going to be the outcome, I'd be okay. It seems that's where your husband is and that is fantastic! Thank you, thank you thank you! ~Lynn
  23. Hi! Sorry you are not coping well. I Probably shouldn't even respond because what you need is help & positive support. I too do not respond well to my sons tics and basically cope with earplugs, wine, music, Valium & lots of psychotherapy. That said, I do believe at this point in time the tics are about 80% my problem & 20% his problem. He is rather un-fazed by them & they have very minimal impact on his life. He is happy, active, kind hearted & smart. If I could concentrate on that & stop looking at him as one big walking, talking tic, I'm sure I could see this situation differently, move on and cope better. Perspective is huge. So is prayer & faith (in my humble opinion) I know there are other's that will be more helpful. I understand how you feel, you are not alone & hopefully we will all cope better in the very near future! Beat wishes, Lynn
  24. Thanks Lisa, that is what my husband reminded me of. Of course I'm still at the stage where I hope I just wake up one day and they are gone (I bet you know that feeling). That said, I am so hoping it isn't the dog making him worse. Of course my son comes before the dog, but I hate the thought of having to (possibly) get rid of her. Golden's are high allergy dogs. My hubby tested positive to mild dog allergy and he feels it doing high allergy. I tested no allergy to dogs (only cats) yet she even bothers me Sometimes if I pet her too long. That said I had severe allergies most of my life. Thanks for the response. Have a nice weekend!
  25. I'm thinking of getting some for my older son, he has had sleep problems since birth. Lately he has been having a lot of trouble going to sleep, he's still awake at 2 a.m. & has fallen asleep in school a few times. Once he's asleep he's fine, it's getting him there that's difficult. I think he might be having a hard time with all the stress in the house (I.e. Me dealing/or should I say not dealing with my others sons tics). Thankfully the little guy doesn't have sleep issues (yet). Good Luck Bonnie.
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