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  1. Bmom, DTaP, given Sept 24. Tic explosion Sept 27 at 2 p.m., lasting three months. Resurfaces mildly (10%) when ill. What state do you live in? Is it a private preschool or is there any state funding? Is it Parochial?
  2. I wonder if there is anything to be learned by differentiating those who tic more when viral and those who tic less. My son was "inspired to tic" by a vaccine. After the initial explosion, he now only has mild tics when becoming ill. I have read many others say that tics stop in their tracks when ill. I guess it could still be immune modulated, but we could at least observe under-responsive systems vs. over-responsive systems. Guy, have you noticed any reaction to colds or flu? More or less?
  3. I am at a loss for words here. In fact, I cannot find anything to say that will not get me flamed here; so to state it mildly, I will just say that I feel the statement "It is all strep" is a gross exaggeration.
  4. Peglem made a good point regarding the antibiotics. My son's regular pediatrician now advises patients to take probiotics for at least a month when she prescribes antibiotics. It replenishes the beneficial bacteria that the antibiotic kills.
  5. I'll clarify: What I meant to say is that when caffeine is consumed in tea, you are consuming the caffeine AND whatever else nature put into the tea leaf, an element of which may be intended to balance the caffeine. If you are creating caffeine in a lab or, as you have pointed out, simply removing the caffeine from a natural source and putting it in water or in a pill, there is no balance.
  6. One occurs naturally; the other is synthetic. Nature usually affords some protective qualities to balance things out.
  7. Patty, The steroid bursts are oral and enter the bloodstream; so they are systemic. Albuterol is inhaled; so it is delivered directly to where it is needed. Also, it must be much lower in dosage, as oral prednisone has to be tapered and Albuterol is used sporadically.
  8. Michele, I'm no psychologist, but I am a parent, and I would disagree with TS kids holding it in and unleashing it at home and say that ALL KIDS hold it in and unleash it at home (granted, your little guy may have more to hold in, and thus unleash). When my second grader started pre-school I was in disbelief at the reports of her angelic behavior because I pictured her tossing herself on the ground and pitching a fit every time things did not go her way. Her teacher explained to me that it is normal for them to hold it together at school and then let it out in their safety zone. She said that the only kids she ever worries about are those who behave monsterously at school and then the parents come in and say, "Oh, I can't believe this. He is such a sweet little angel at home." Tami
  9. Calicat, If she just started first grade a couple weeks ago, I would attribute the behaviors to this new adjustment. She is expected to sit and learn for much longer periods of time now, and a lot of kids need to feel more in control; so they make their stand at home.
  10. Caryn, I saw that on your site yesterday. I still haven't recovered. And Kim, He had Prevnar too!
  11. kmccoy, My son's tics began several days after a vaccination last September. I had him allergy tested in January. We are just now slowly reintroducing his mild reactives. He was very reactive to gluten, so we are still gluten free. I am not even considering reintroducing it. His symptoms are very well controlled. I am a firm believer that stress causes tics in susceptible kids. Stress comes in many forms. If you apply the bucket theory and reduce as much stress as possible, you can affect the symptoms. Allergens and nutritional deficiencies are among the easiest stressors to discover and manage. My son currently exhibits symptoms when he is sick, and there was some mild blinking at the beginning of the school year. He started kindergarden, which is very stressful for a kid who had requested I send him to a "recess-only" school! This September has not even approached 10% of what we experienced last year after that shot. There is even discussion in one of the PANDAS threads about diet making a difference. Again, the only thing anyone can come up with by way of explanation is that by reducing the overall stress to the system, the strep is less likely to "fill the bucket." (I happen to agree with the theory.) What are your your son's dietary restrictions? And, if you don't mind, how old is he? By the way, welcome!
  12. Kim, My kid has had pneumonia twice. He's FIVE! Yes, he had the Hib vaccine.
  13. That was truly informative, Guy! (Really). The last time that happened to my daughter, she was peeing when she heard "last call" for the bedtime stories, and she came rushing in pulling her pants up as she ran. I love the theory about shorting out the "pee system" and needing to reboot it. I never would have made that connection, but I can absolutely confirm it in hindsight. Also, "tickle" is probably about as accurate a description as any four year old can come up with to describe the urge to pee. And to further the weirdness factor of this discussion -- my daughter, when she was 3, had been touching herself "down there" at home and preschool for a couple days. I took her in for a urinalysis to check for a UTI. It was negative. The wise old pediatrician noticed her baby brother sleeping in his carrier and immediately diagnosed her with "penis envy." He was right. I talked to her about it that night, and she confirmed that it was not fair that she didn't have one, fully intends to grow one, and checks frequently to see if it is there yet. That issue has been settled, but she does still hog the remote control .
  14. Bmom, I know too well what it feels like "waiting for the other shoe to drop." When my son developed a mild facial tic, I read everything I could on tics. The next week, in a parking lot, I saw him bend down and touch the ground with his index finger and then stand back up; then he did it again. I almost passed out because I had just witnessed his disorder escalate into a multiple complex tic. (As it turns out, he was just a 5 year old who bent down to squish an ant and didn't get the job done the first time.) I guess my point is, yes, it is entirely possible that this isn't a problem. My daughter (not the kid with tics) has done this (multiple bathroom trips at bedtime) a couple of times. I have always written it off to "bedtime avoidance." In your daughter's case it could be (I'm just guessing here) that you have been inundating her with fluids due to her throat surgery so she has to pee more; normal anxiety at bedtime because she is 4 and is starting to imagine monsters; she isn't going so much during the day because she is so busy playing, and she is having more urges when she starts to wind down during the bedtime routine; could she have noticed her brother getting extra attention for this when it happened to him? (I've actually seen my kids fake "copycat" injuries when their sibling is hurt and they are being completely ignored.)
  15. Awana, There is a lot of information here on light sensitivity. It is very common in some of our children. Use the search feature in the upper right. I have two quick thoughts for you as well: First, get her a good pair of polarized sunglasses for sunlight and car, and have her sit further away from the t.v. in a well-lit room and at a slight angle, not directly in front. The goal is to force her eyes to take in more of the room than just the screen. Second, I could be wrong, and someone around here will be able to confirm or deny this quickly, but I believe light sensitivity is a side-effect of some antibiotics. Do you recall if the light sensitivity that you observed existed prior to the prescription? or just during? Also, how old is your daughter?
  16. Carolyn, Congratulations! And thanks for the link. Tami
  17. Carolyn, Hi, how are you? I haven't seen you post much lately, and , well, "prenatal vitamin" really jumped off the page there! Did I iss something? Are congratulations in order? Tami
  18. Caryn, I haven't really digested ( ) all that information; so I may be missing something and oversimplifying, but have you looked into or tried apple cider vinegar? Doesn't that help to increase acid production? Tami
  19. I interpreted the Swedo quote the same way Caryn did. I thought she (Swedo) was taking a huge leap in suggesting all cases may be strep induced. I don't think anyone here would agree with that. I think the inherent danger in Swedo's statement is that people may read it and not look into other strategies. I agree that if a child has PANDAS, he needs to be treated quickly and that limiting his diet may be unnecessary or even cruel; but what if the child has undiagnosed gut problems and you not only fail to treat the problem, but you put him on a course of antibiotics? You have actually worsened the problem. I just feel very strongly that people need to be open to all of their options and size them up according to what was/is going on in their own children. The only way that can happen is if all opinions are represented.
  20. Samsmom, Hydrachloric acid, I think (stomach acid). I like the theory too, with the generalization that the issues are brought on by an aberant activation of the immune system, of which one cause may be strep.
  21. Michele, Eamom had some great advice. I don't know about your State, but the neighbor says that here they HAVE TO get you all info they have (testing, etc.) at least 24 hrs prior to IEP, if not they are in default, and you can demand rescheduling. Also, the law here says they have to complete the IEP within so many days of original request; so if rescheduling puts you beyond that, they are in default again. You may want to Google special education law in your State or go in for a consult. She also said that here they allow you to tape-record IEP's, but only if you give the school 24-hr. notice so they can do the same. She said her attorney said it is almost as good as having counsel present. Best of luck.
  22. Michele, I feel your frustration in dealing with the school and teachers, but (in my opinion) you have been too patient and too fair, and they are taking advantage of you. They aren't even returning your calls. I absolutely understand your desire to be civil and accomodating. I don't know what your resources are, but my neigbor went through this with her son and she was ignored until she used a special education attorney. You may want to consider paying one to write a request letter for a full-scale evaluation and IEP and sending it directly to the school, or even the district. My neighbor was not even able to get an IEP before she used the attorney. Now her son's annual IEP goes something like this: "What do you want?" "Okay."
  23. Michele, My neighbor's kid has a quasi-Asperger's diagnosis. By "quasi" I mean, of the four specialists he has seen, they are evenly divided as to whether he qualifies for the diagnosis or not. It's really subjective. If this helps, the criterion used by the two who ruled it out was "shared attention." It is a theory of mind concept that they don't feel is present in kids with autistic spectrum disorders. An example would be if he saw something really cool, would he look at you to see if you saw it/enjoyed it too? It's not something people do all day long, so you would have to really watch for it. I saw it once yesterday. My kids were watching Spongebob, and Spongebob and Patrick engaged in some "bathroom humor." My kids roared with laughter, and then, smiling, looked at each other -- sort of a sharing the moment thing. They knew better than to look at me, 'cause I would have shaken my head and begged them not to tell the other Mommies that I let them watch it! Your son is very young, and although it sounds like he is difficult, you also paint the picture of a sweet, caring boy. You may want to look into a fun social skills class for him. They are not just for kids with spectrum disorders. My neighbor's kid is in one with several hyperactive boys and a painfully shy kid.
  24. Hopeful, Many of us here, myself included, feel that our children have reacted to vaccines. My son's tic disorder began three days after a DTaP booster. It took three months to go away. Now every time he gets sick, we will see low grade symptoms resurface. (Nothing has been close to even 10% of the aftermath of that shot.) He had walking pneumonia and got a tic; he had a tummy ache and fever and got a tic. He gets the tic about three days before I know he is sick (It's not fun being me for those three days either ). It appears that when his immune system is activated, he tics. My kid doesn't have PANDAS, but I can promise you this -- if he got strep, he would tic. As for your daughter, I really do think it could be the shot. Consider yourself lucky her reaction wasn't as severe this time. And, as I like to remind myself every now and again, vaccines are a lot easier to avoid than strep!
  25. Welcome Momto2! I have been so fascinated by your mention of the doctor who predicted issues would cease with childbearing. Is this the same one who diagnosed you with autoimmune issues? Then when EAmom asked you about birth control, something clicked. I spent quite a bit of time at the onset of my child's disorder studying the immune system (specifically Th1 and Th2 responses). I still don't understand it . What I do remember is that the hormones during pregnancy rewire your immune system into anti-rejection mode, so you don't reject the baby as you would a transplanted organ. I can't help but wonder if that didn't help to reorganize your immune system by creating a "cease fire" on itself for nine months.
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