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  1. Abbe,


    Caryn is the resident gluten-free expert here (you can search her posts). She has a lot of amazing recipies on her site (Healthyfamily.org). Keep in mind that her son is sensitive to corn as well, which causes further restrictions that you are not dealing with. Join an internet Celiac Society or club (or just lurk one!) They cannot eat wheat; so they are very knowledgeable. A local one will even direct you to restaurants in your own community, and tell you which menu items are safe.


    In the meantime, go to Whole Foods. You can go to customer service at Whole Foods or Trader Joe's and ask for a gluten-free list, and they will be happy to give you a printout. If you call Whole Foods and let them know when you will be coming in, they will actually walk you around the store and point out the items to give you a visual. I would highly reccomend that since following the list in a store that size is very difficult.

  2. I am too cynical. My guess is that it will happen because this one could be so profitable. Look at all the school and work hours that are lo$t when a child is infected, and strep is pesky because they can get it more than once. We live in a world where some people give their toddlers and preschoolers tylenol to mask their fever so they can drop them off at daycare and go to work.

  3. Again, I still don't understand. What's the difference between shooting inactivated streptococcal vaccine into something while TRYING to cause an autoimmune disorder and shooting inactivated streptococcal vaccine into something and ACCIDENTALLY causing an autoimmune disorder? (Don't many vaccines use inactivated virus or bacteria?) Granted, they purposely used vulnerable rodents, but who is screening our children to profile them for such vulnerabilities? I still think a strep vaccine sounds more likely to cause PANDAS than prevent it. And what about the children who had the ckn px vaccine and are now more likely to get shingles. What if the strep vaccine prevents typical manifestations of strep throat and children are more likely to get, well, PANDAS?

  4. My son gets pain behind his right knee EVERY time he has a fever. Always the same leg. Only with a fever. When the fever breaks, the pain subsides. The origin of the fever doesn't seem to matter. On one occasion it was a bad cold that his sister had too. On another, it was a stomach flu that the whole family had concurrently.

  5. I am sorry, Myrose, I really don't mean to aggravate you. I just didn't understand why everyone suspects PANDAS in your child. In my opinion, the fact that the Topamax worked indicates that it is a tic disorder, not PANDAS. I am no expert on PANDAS, but it seems to me that the mothers on the PANDAS board should be able to tell you if Topamax works for their PANDAS children. I will make an uneducated guess that it doesn't.


    Even if you look at this from the other angle and assume she has PANDAS, then you know that the Topamax controls her PANDAS. Topamax and zith are both drugs. Both require prescriptions. Both have side effects. Why would you consider the antibiotic the better choice?

  6. Thanks, Colleen. I didn't realize she had a history of zith stopping the tics. I just knew that the Topamax completely stopped them for close to a year, until she had been completely weaned off of it. Tics do fluctuate, but to be tic free for a year while on Topamax, in my mind it deserves the credit.


    Myrose, how many times has she been on zith?

  7. Wendy,


    The first thing that comes to mind is that you had a house full of guests, including triplets, that are gone now. Things have settled down, and that is my best guess as to why her tics are milder now.


    I'm sorry to mention the Topamax again on this board, as I know people prefer natural treatments, but like I said yesterday, you only increased it three days ago. I don't think you gave it time. It worked miraculously before. It was SUPPOSED to take weeks to take effect, but you saw results right away. Doesn't mean it will work that quickly this time. Remember, it took weeks for the Topamax to wear off and the tics to resurface.

  8. Wendy,

    I'm so sorry to hear that she is not doing well. Remember it was really bad last time too, and the Topamax worked. Please don't give up yet. You said you have only had her on the 25mg for a couple of days. It worked before; it should work again. Things will settle down soon. Hang in there.

  9. Interesting topic! I am by no means ready to part with $3,000 and travel cross country, but I'm going to try to keep an open mind on this one. It does seem that many of our kids have issues when teething; it's been discussed before. Several here feel passionate abut cranial-sacral massage (not too far off from this device), and the typical age of onset coincides with teeth erupting, and the typical age of "worst tics ever" seems to coincide with the typical period of molar loss/growth/rearrangement.


    My own son, who hasn't had tics in a long while started again last week. Aside from allergy season or end-of-school excitement, the only thing I can come up with as far as a trigger is his first wiggly tooth. (I give it a day or two before the Tooth Fairy gets it).


    Anyway, I'm not a believer or a nonbeliever yet, but I will be following this topic with interest.


    I can understand how the concept of "cure-all" is offensive, but I'd be more concerned if he were advertising "I cured my son's tics, you can too for three easy payments" all over the net.


    Time will tell.

  10. I can't answer your question, but, I was just curious, My Rose, why you would prefer to use zithromax over Topamax. Both are drugs. You already know that the Topamax works well for her with no side effects. Antibiotics have side effects too. My son had walking pneumonia last year and was prescribed Azithromicin (sp?). I read the warning on it, and it terrified me.


    I know you're scared and don't want to see the tics return, but if you are looking to confirm her diagnosis by which drug she responds to, I think you have already done that. I can't imagine that if she were going to have a neurological flare in the presence of strep that the Topamax would have stopped it.

  11. Mom2ck,


    Does his urine have an odor when it is fresh? I would expect day-old urine to have a foul odor, and it is possible that the mattress is going to continue to produce that odor every time it gets wet, even if you pour purified water on it.


    I agree with what others have said. If fresh urine has an unusual odor, have him checked.

  12. Lorie,


    I don't want to advise any parent regarding vaccination. However, after doing your research, whatever your decision is, I do feel comfortable saying NEVER vaccinate when your child is sick and NEVER have multiples to "catch up." (And kindergarden doesn't start until September -- so there's plenty of time.)


    My son's tic disorder surfaced THREE DAYS after his DTaP booster.


    Oh, and that story-time ticcing -- that's common. A lot of kids tic during stories/tv. My theory is that their bodies are required to settle down and stop moving; so the tics surface.


    I'd get him some good sunglasses for the car too. Whether he's ticcing or not, sounds like your boy has very sensitive eyes.


    What state do you live in?


    ps. Baker is an adorable name. I've never heard it before.



  13. Myrose,


    I can't answer your question, but ...


    I, too, knew not to heat the bottles, but was recently told that freezing them is really bad too. Apparently they are not stable at very low temperatures either and can leach. I think the source was Johns-Hopkins' cancer research center.


    And for all our efforts to prevent overheating the bottles, in all likelihood they sat in a really hot warehouse with an aluminum roof before we bought them.


    I did a quick google and couln't find any association with sensory issues.

  14. Bonnie,


    I would trust the literature on this. I assume that demographic (kids who used to tic) wouldn't be well represented here. I imagine they don't want to think about tics or talk about tics, much less seek a discussion board on the topic. There are, thankfully, a handfull of parents whose children no longer tic who check in here occasionally and support and encourage the rest of us.

  15. Thanks! I really needed that. I occasionally lurk here, and I really love seeing the updates on your daughter.


    Back to the olive oil -- I'm not quite brave enough to apply oil to my entire face, but I will try a patch test in an inconspicuous area first and get back to you.


    Wishing you continued wellness,



  16. EAMom,


    I bought a set of shot glasses and use them for "cherry bombs," which is another way to say, whatever yucky substance mom wants to hide in cherry juice. It disguises almost anything -- b6, magnesium, buffered vit C powder, . . .


    Fish oil is going to be a tough one though. I can't imagine that it would compromise it if you put it in soup, but sounds like she may turn her nose up at the soup. Salad dressing might be a better hiding place (wouldn't have to consider the temperature issue either). A strong vinagrette should hide it well, or a honey-mustard. You could also consider making your own dressing with flax seed oil. It has a walnut like flavor.

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