Jump to content
ACN Latitudes Forums


  • Posts

  • Joined

  • Last visited

Everything posted by lurker

  1. Shannon, I have a 5-year old with minor tics too (since the end of September). I looked briefly at the link, and I believe they are different forms. The Kid's Calm is mag citrate and the Bluebonnet is mag citrate and mag aspartate. You mentioned that you are currently undergoing testing; I am too (organic acid and IgG). I would not make any major changes if you are waiting for results, as allergies might apply and render your new product useless. As far as the dosages you described, they sound like they are in keeping with what I have seen others doing around here. Tami
  2. Kallik, Bonnie's contain Grape seed extract, not Grapefruit seed extract. I don't really know much about either, but regarding salacylates, I am pretty sure that salacylates occur near the outer surface of fruits and vegetables. They are mostly concentrated in skins and leaves and stems. This is nature's way of protecting them. I would assume, and I am only assuming, that the seed, being the innermost part of the plant, would not be loaded with salacylate. As long as it isn't known to cause harm, I wouldn't worry about "been proven." Remember, sugar has not "been proven" to make kids hyper. Tami
  3. bcase, Do you know which lab the pedi used? By the way, congratulations on finding a pediatrician who listens.
  4. Bcase, Maybe you can have her T and D antibodies titered. If her levels are high enough you may be able to bypass the booster. I know a lot of boosters are given just to catch the minority of children who are not immune enough yet. I can't, however, imagine you can get your insurance to cover it though.
  5. Kallik, I think frequent urination is symptomatic of a lot of anxiety/stress disorders. Its even common for people without a disorder to feel the urgency of that "nervous pee" before going on stage or into an interview or taking a test. When I brought my first baby home from the hospital, my cat walked into the room, sniffed the air, and then peed for three straight hours. (I have pictures of the cat's bladder too.) Could he have been under any pressure or experiencing any stress after the tea? Had he been stressed out that day? Could it be a tic? As far as testing, I'd still recommend the test I mentioned in your Candida thread as a starting point; it's pretty comprehensive. I have mixed feelings about the strep titers. My son was tested; it was negative. But now I'm hearing of PANDAS cases where the strep titers were not abnormally elevated. I'm confused too. Tami
  6. Wyattsmom, I've been there. I understand the fear, and the second guessing you talk about was a huge issue for me. I'm an over thinker too. When my son was diagnosed with a tic disorder, I began to attribute everything he did to that disorder. When we were in a parking lot, he stopped, bent down and touched the ground with one finger; then he did it again. I saw a tic. It turned out to be a four-year old boy who was trying to squish an ant. He didn't get the job done the first time. Fortunately, he showed it to me before I passed out! Here are some things that helped me. They might give you some comfort: He is 99 parts kid, and 1 part kid with a tic. Next time you take him to the park, turn your observational skills on the other kids. Kids are wierd. They do wierd things. (Seriously, how many times do you need to try sand before you realize its gritty and tastes bad?) As an added bonus, I can almost guarantee you will see another kid tic, and his mother probably doesn't even know. Realize that his tic is probably not bothering him as much as it is bothering you. (If it bothers him at all.) My son is so unaffected by his tics. I, on the other hand, have the ability to picture him as an adult with the full-blown David E. Kelly* version of Tourette's. As far as his diet goes, start by educating yourself about our food supply. You probably already know more than I did when I had to start reading labels. For example, I thought there was actually fruit in fruit roll-ups. Most people know that label ingredients are listed in order of volume, the first item being present in the largest quantity. I knew that, but I never really looked at my kid's vitamins before because I knew vitamins were good. It turns out the food dyes and preservatives were in the MIDDLE of the list. Its bad enough they were there in the first place, but shouldn't they at least be at the end? How can there be more Red 40 than vitamin A or Folate? I hope this helps a little. *talented and successful television writer/producer who, for some unknown reason, feels the need to use characters with neurological, developmental, and cognitive disabilities to achieve comedy. Tami
  7. bcase, My son reacted within two days of his DTaP vaccine. This vaccine did NOT contain Thimersol. Personally I am more concerned with the adjuvant. An adjuvant is a component in a vaccine whose purpose is to create an exaggerated immune response.
  8. Kallik, I am eagerly awaiting results of my son's organic acid test. It is a urine test that is analyzed for about 65 things -- some nutritional and antioxident deficiencies, some neurotransmitter activity, some amino acid abnormalities, etc. Both CANDIDA and CLOSTRIDIA metabolites are included. I think it was about $200 and not covered by insurance. The lab will send the kit directly to you so you can get your sample at home. My five year old really enjoyed this test -- too much. tami
  9. Chemar, This is how I learned about "mommy stress": I was crying to my Aunt on the phone about my scrupulous food diary where I recorded his diet, his stress levels, and his tics, and how I could not after months find a single correlation. She suggested that I chart HIS tics and MY stress. I am ashamed to admit a slight pattern emerged. Today was his first completely tic-free day since the DTaP in late September, and now I have an appointment to traumatize him tomorrow. I'm not sure I'm strong enough. I am having horrible flashbacks to when he hid under the examining table in the ped's office to avoid the shot in the first place. I should have listened then! Tami
  10. Caryn, Thanks. I will use distraction and bribery. I am doing the Great Plains IgG. I think it was around $220. I paid the Doctor for it weeks ago. Thanks for the advice about removed items not showing up on the test. I called the lab and discussed it. Apparently the antibodies circulate for quite a bit longer than they have been removed from his diet. At this point things may be only slightly less reactive, all the more reason to do it now. I may have actually downplayed the part about being scared to feed him. Its bad. And one thing I have realized since this began is that "mommy stress" is a tic trigger. I'm doing it tomorrow. Tami
  11. I just found Xylichew. It was $2.15 retail at my local healthfood store. Their website, Tundra Trading, claims the xylitol is 100% birch derived. So corn is not an issue. My little guy had not had gum in so long he was smiling so much he couldn't chew for a full minute.
  12. Caryn, I have been putting off IGg testing for weeks now because my little guy was steadily improving, then he had an exacerbation with a cold; so I didn't do it then. I think I'm making excuses because the blood draw for the strep titers was so stressful for him, I'm afraid another blood draw will set him back. He's doing so well now. On the other hand feeding him is such a challenge -- my naturopath already took him off wheat and dairy. I added corn and nightshades, which makes it an anti-inflammatory diet. By the way, I feel like we've been eating at Caryn's house for the last month (thank you for the recipe blog.) I know I have to do it because I am literally scared every time I feed the little man. Any suggestions for preparing a barely-five-year old for a blood draw and reducing his stress would be appreciated. Sorry for venting. I'm feeling needy. Tami
  13. wbird, You're right -- there is a huge gulf, and its a personal decision. For me, this is home. My son had a huge tic explosion within days of the DTaP. It triggered his disorder. I would at the very least wait until your boy is more stable before even considering this vaccine. He may have something in his system that it can aggravate. I am by no means the first person to report this phenomenon. I believe this vaccine is contraindicated in individuals who have previously reacted to vaccine or who have neurological disorders. Since your doctor suspects your son may have undetected high functioning autism or OCD or a tic disorder . . . I'm just confused!
  14. wbird, It is possible that your general practitioner has referred you to a pediatric psychiatrist because of some of the developmental issues you say your son experienced earlier (speech delay, social issues, adherance to routine, quirkiness). These are things that they see regularly. I don't think you will get any help for the tics there, though. And sadly, I think Faith is right about the neurologist too. I would suggest that you instead bypass the chain of referrals and see a specialist called a DAN Doctor. This kind of specialist can address all of the issues simultaneously, including the tics. I think you will get your answers faster this way.
  15. Jasminky, Regarding the finger picking, it COULD be a tic. Its also a common, legitimate habit that some of my adult friends indulge in. I think only time will tell. If it is a tic, I think you will see more and more of it, and it will appear a little less purposeful than a more typical skin picking, nail biting type of habit. I know how scary this is. In the early stages of my son's tic disorder, I hovered and spied constantly. If he did something once, I could imagine him doing it all day long for weeks or months. Needless to say, there were a lot of false alarms. Since most tics are fragments of ordinary behavior, imagine what a basket case I was. If you do proceed with the allergy testing, are you having the IGg? Tami
  16. My understanding is that a beneficial yeast, for example Saccromyces B, is not harmful to the host; whereas an unhealthy yeast, like Candida, produces toxic metabolites that can wreak havok. I believe that when there is a large colony of beneficial yeast or a constant incoming supply, it competes for space and crowds out the other. If there is a serious Candida problem, I don't think that a beneficial yeast alone will control it. I think it is more of a maintenance and prophylactic strategy.
  17. Just wanted to add my $.02. If you have a reasonable suspiscion that strep was involved, I, too, wouldn't rule out PANDAS simply because a relative ticced. Personally I don't think they will ever find "THE ticcing gene." In some families it may be a mutated gene that is ineffective for dopamine uptake; in others it might be a structural difference in the ganglia; in others it might be an impaired ability to detox or a weak blood/brain barrier, or immune overreactivity, etc. I think Dr. Murphy's assistant has a point, Bmom. Even if your husband and son inherited an errant gene, it may just be a familial inability to recognize or erradicate streptococcal bacteria. Strep has been around for generations too. Tami
  18. Kelly, I just went through this. I was in constant inner turmoil about finding a specialist. (They all seem to be on the wrong coast.) Then it dawned on me, the best doctor to see for tests is the one who will sign the slip. This will most likely not be your pediatrician, but rather a DAN doctor, Naturopath, or Environmental doctor. I, like you, already knew what tests I wanted. I also looked at the lab's websites for tests/costs/coverages. It took months to find the last piece of the puzzle, but ironically it was this simple: I googled "naturopath Los Angeles," and there he was a mile and a half from home. He is not an expert in tic disorders, but I am quickly becoming one, and we're working together. Tami
  19. Bcase, I am not usually comfortable advising on matters like this, but since you asked . . . be strong. Somebody famous once said, "Vaccines are a lot easier to avoid than strep." Wait. Maybe I made that up. Tami
  20. If you have the orange-flavored Coromega packets like the ones wasting my cupboard space because I won't give them to my kid, it has sodium benzoate (I honestly have no clue about it, but sounds a little scary) and Vanillin, which I am fairly certain is a byproduct of the paper milling industry that is a very inexpensive vanilla substitute. I would give fish oil another try in a pure form. Tami
  21. Faith, He is in fact five (He may even share a birthday with "Tigger"). As far as knowing to request a culture and titer for strep at the rapid onset of a tic disorder, I learned that here! My pediatrician had heard of PANDAS, but never suggested the testing; it was done on my demand. (Testing was negative for strep.) I have been doing a variety of things for the last four to five months, and he is doing better. The throat clearing is gone. It was the most persistant single tic he's had. It lasted for three months. As it was winding down, it only surfaced at bedtime and during meals. When I say shorter duration and less intensity, I mean a bout of tics (for example blinking) is 1 to 3 blinks, not 40. The bouts occur less frequently over the course of the day (5 times, not 50). When this first started, I watched him ride his bike into a tree because he had to sniff his fingers. Now he has tics, but the neighbors wouldn't pick up on it. I'm doing better too. At first all I could picture was the full-blown David E. Kelley version of Tourette's. Now, I have hope that his tic disorder is winding down and won't interfere with his lifestyle too much. The best advice I can give anyone from my experience is cautionary: Don't do too much too fast. I did. He's doing better, but why? I treated so aggressively, and haphazardly, that I can't pinpoint his triggers. The naturopath has very little experience with tics. I feel as though I am still co-directing the treatment. I think that it would be unrealistic for anyone around here to expect to find a doctor who knows more about tic disorders than they do. (That was meant to be a compliment.) His probiotic of choice was HLC MindLinx. He didn't seem to care about timing, but suggested mixing into a little smoothie of some sort. As far as the supplements, fish oil with high EPA, and E3Live, which is a blue green algea which is loaded with vits and mins. His testing suggestion was IGg allergy, through a lab he suggested. After he read the tic bible, he contacted Great Plains. He thought their allergy testing was comparable and he loved the OAT test. I'm in the process of doing both and I added the pyrole test as well. I'll post about results as I get them. Regards, Tami
  22. Hi, Kim My pediatrician said the vaccine is completely unrelated. I believe it caused/aggravated/exacerbated the situation. Even in the face of credible evidence, I think the most they will concede is "predisposed genetic vulnerability." That's just a survival-of-the-fittest concept. Imagine if they used that defense for Chernobyl or Love Canal in explaining why some children got cancer and others did not. As far as firing the pediatrician, it had less to do with the "start drinking" comment, and more to do with the fact that I saw people here who found professionals in other fields who were more openminded. I found a naturopath who has been to medical school, has a license, is willing to think outside the box, and isn't influenced by large pharmaceutical companies. He even read my copy of Tics and Tourettes, developed a relationship with Great Plains, and (gasp) offered me a discount for inadvertently finding a better lab for his practice. When I get the OAT results I will definately post them here. As far as "escalating symptoms" go, we'll see. My little man is eating a handfull of jelly beans as I write this. We are obligated to go to Chuck E Cheese tomorrow afternoon (games only, eating at home). Also, I wanted a really clean baseline on the OAT test so I discontinued ALL supplementation for 72 hours before and there is the acute stress of the blood draw next Monday. I think I will go take the advice a wise old pediatrician once gave me . . . Thanks, Tami
  23. I have been lurking here for some time now and thought I should introduce myself. It's actually quite awkward because I am a total stranger to you, yet for the past four months, I've gotten to know you and your children; we've laughed and cried together; and you have helped and guided me through the hardest time of my life. Thank you. I'll try to keep this breif. My son (4yrs at the time) received a DTaP vaccine on a Monday in late September. By Wedensday, he was "twitchy." By Friday, he was sniffing his fingers and clearing his throat . . . a lot! I took him back the following Wedensday for a strep culture and the two applicable titers. The pediatrician diagnosed a mild tic disorder and told me it would most likely go away. When I asked him what I should do, his response was "Start drinking." Fortunately, I don't give up that easily -- you wouldn't let me. Since the onset (I should edit to say, that in retrospect I realize he went through two "blinking phases" of short duration [several days] a year and two years ago, respectively, that flew under my radar) I can make the following generalizations: the tics change; some days are worse than others; they are overall milder, less frequent, and of shorter duration than they were in the beginning. The tics now appear to be sporadic single incidents rather than bouts, and when I see a new tic, it predominates for a couple of days and then retires instead of building in frequency and intensity as it did several months ago. I have read Sheila Rodger's tic bible, removed artificial ingredients, initiated supplements, fired pediatrician, found a wonderful Naturopath, kept food diaries (to no avail), reduced stress levels, initiated wheat/dairy/sugar free diet /begun probiotics on advice of said wonderful Naturopath, initiated Organic Acid Test (results pending), and have an appt for blood draw for IGg allergy testing on Monday. I still feel overwhelmed and have so much to tell you and so many questions to ask, but for now I really just wanted to introduce myself and say thank you. Now, if you'll excuse me, I have to go pick the kids up from school and confiscate some high fructose corn syrup and red dye #40. sincerely, Tami
  • Create New...