Claire

Jordansmom, In general, this board is populated by people who either don't want to use medications, or have tried them and failed or had bad side effects. I personally think it is worth spending the time checking out and treating other immune related issues beyond PANDAS--that should help both the tics and the ADD-- rather than trying to treat the symptoms, but if you want to speak with a higher number of people more open to medications, you might want to go Braintalk site is more filled with users using various medications. Somewhere in this thread is the link. http://www.latitudes.org/forums/index.php?showtopic=1749 Of course, people hear may chime in directly on your question too. Good luck, Claire

Whole Foods has BBQ potato chips with nothing artificial. Tic syndrome sensitivities can evolve over time, not necessary associated with a sudden trigger (unless Pandas or computers sometimes). Claire

Julie, Thanks ...Yippee, we are in the lucky philosophy category! I never had a clue that even existed. Kim, Can you please put my mind at ease (or give me fair notice...I want honesty most) that the TB test I let him give my son wasn't the same risk as the vaccines? He hasn't seemed to have any reaction after 2 days. Claire

Hi Kim, I am amazed that they actually published a study about the flu shot not making significant impact on the younger kids. Good for parents to know! I tried to tell a pregnant mother about at least spacing the MMR and she thought I was nuts. Yes, how many more kids? At least the siblings of the kids whose parents post here will have the advantage of an informed parent. Gosh, yesterday, the doctor wanted my son to have: 1. Tetanus/percussus 2. Meningitis 3. Chicken pox booster. Fortunately (!), he got chicken pox after the first vaccine, so I never have to worry about the booster. Yes, it is every parent's personal decision. However, I do think my son's GP, whom we only see every couple of years--and is more open minded than most--thought I was fairly paranoid about the vaccines. He didn't push it though, and even commented that there were ways around it for school. At least our DAN doctor didn't retire after all and will write me a note without batting an eye for 'no shots' should I need it. I don't know if tetanus is required anyway, but if it is, we still have 2 years to go. Claire

We haven't done a skin test for histamines, but we did a blood test. It was to see if my son was under or over-methylated. Here is a thread I created long ago with the information I had at the time. http://www.latitudes.org/forums/index.php?showtopic=837 My son was undermethylated, and they gave us TMG. Since we were doing so much and he didn't tic at the time, I can't say what difference it made. We still do the TMG. 4 hours is a heck of a long drive. I hope that she does phone consultation appointments after the first visit, like mine does. Do post what tests she wants to run (and ultimately what you find out and if it works....), we all learn from this. Good luck with the new doctor...I hope that if she hasn't dealt with tic syndromes that you tell her that many of us find many similar immune issues as ASD, even if it is a different condition. Claire

CP, Thanks again for this information, it really makes a difference knowing this. Wow, to think our doctor would have given those exact shots to my son yesterday...if it hadn't been for Kim's frequent rants about it being the vaccines themselves, not just the thimerisol, I might have done at least one of them. I have read research on that for autism, but I haven't looked at it in a couple of years. I really should try to figure out when my son had his last shots...I wonder if it correlates. Not sure what you mean by 'good news for moms'? Do you mean good news that your husbands TS subsided as an adult? I think I read somewhere that some portion get better on their own...can't remember what it was though! I did let him have the TB test yesterday..I hope that was okay! So far, no issues though Claire

Kim, Thank you thank you. I know you have commented that it is more than the thimerisol...that is why I asked... Anyway, I won't go near the shots now. It was the Adacel by the way. I am so pleased that this time around I knew to not just blindly do something. The odds of some reaction to the booster are far greater than his odds of getting tetanus or meningitis!! Claire

Cum Passas, Thanks soooo much for relaying this (though I am very very sorry to hear it). Which shot was it???? The tetanus or meningitis? Kim, I will check the flu shot thread, thanks! Claire

Thanks all! Thanks for reiterating yours Chemar, I had forgotten exactly which ones you did. I edited my post to say 'neurofeedback'... Claire

Patty, There are different causes of light sensitivity...mercury, low riboflavin and pyroluria for example. My son had all 3 at one point, but I believe it was his high mercury levels that were the biggest offender. He had low antioxidant levels, which frequently coincide with high metals. So we supplemented those antioxidants. After about a year he seemed to have lost his photosensitivity. Before and while we treated him, we also switched from CRT monitors, which have the irritating flicker, to LCD screens, with no flicker. They are so cheap now, they weren't when we first made the switch. A smaller screen helps too. So for the TV situation, you might try having him watch movies on a computer with a small (less visual impact) 15" LCD monitor from across a well lit room for a week (or an LCD monitor with a TV tuner built in)and see if that helps with the post-TV anger. Graphics play a role...so animation is worse. If you have read my other posts, you would find out that the screen/photosensitivity was my son's only tic trigger. So he only had frequent tics for 2 months until we figured this out. We avoided screens for 2 years, then realized he wasn't improving...we then started a new search and found this board and the board founder (Sheila Rogers) pointed us to the DAN/EM doctor list now posted. He did the testing and managed our treatment, which included other things such as vitamin supplementation for deficiencies. Claire

Hi Kim (or anyone else that has paid attention to vaccines.) My son had his biannual check up today. The GP wanted to give him a tetanus/percussis booster and a meningitis vaccine (both of which he said no longer had thimerisol in them). Have you read anything about these vaccines? I know if I did them, I would space them, but it makes me very nervous. It has been 8 years since his last tetanus booster, and technically they are due every 10 years, but he says they are pushing for greater frequency at this age due to commonly getting injured. My son is active and is always getting scraped up in a big way. We have apparently also had some sporadic meningitis outbreaks. This meningitis vaccine is a newer version that he said he only been around for 4 years, but the older one (which is similar) has been around longer. Claire

Hi all, I have noticed since I joined this group 3 years ago, that several posters tried non-biochemical methods to help their children. I know some really said it helped. Can those who have tried it, whether it succeeded or failed, please post their experience. Again, I will try to compile and update the responses into this initial post. **Please post: what you tried, did it help? Explanatory comments** 1. Patty. Yes. Accupuncture. Yes. My son had an acute sudden onset of head nodding. Three weeks later, he had acupunture 2X/week, and within days his symptoms gradually declined. 2 weeks later, we added chiropractic adjustment to alleviate his neck pain & headache. Unfortunately, my son developed a fear for needle, so we had to stop after 7 treatments. Patty. No. Craniosacral therapy. At about the same time, we also started craniosacral therapy. We have done about 10 craniosacal therapy and didn't notice any difference. Patty. Yes. Chiropractic. In the beginning, I didn't notice any benefit from the chiropractic adjustments. However, the last 2 times after chiropractic adjustments, i noticed a decrease in tics. 2. Chemar Yes. Accupuncture. My son says that acupuncture is by far the most helpful treatment for his tics. Chemar. Yes. Simultaneous reflexology, resonance biofeedback (NOT neurofeedback), detox cupping and massage. Chiropracty is also an essential part of our son's treatment therapy. Chemar No. Homeopathy and traditional Chinese medicine. Although we have much respect for homeopathy and also traditional Chinese medicine, neither were a good fit for my son with respect to the TS. 3. Carolyn. Yes. Acupuncture since January of 2005. Acupuncture helps and it's relaxing for me. We no longer discuss tics at my appt. unless I bring it up. My acupuncturist treats my current symptoms by observation and we discuss things like sleep, tightness, etc. before doing the acupuncture. It's not just tic based, but also includes other things I'm experiencing such as detox, etc. Acupuncture is mostly done on my front and we've only done it on my back once when I was having wheezing symptoms. Carolyn- Yes. Chinese Cupping/Massage Since about my 2nd or 3rd acupuncture session. Cupping has become part of the routine because I love it so much. This is by far my most favorite treatment I use. We usually do it before acupuncture. I crave the deep pressure and love the cupping because of this. It's very relaxing for me and keeps jerking and other tics away. I react mostly on the left side of my body when the cupping is done. The left side is always the tightest/most tense side. Carolyn- No. Osteopathic Manipulation of my back, neck, and shoulders for about 6-8 months. I hated it. I never tried a different doctor for this. I didn't like the light touching when the doctor did the adjusting. As I said before I like deep pressure that's used with the cupping above in my positive experiences, but light touch drives me nuts. Osteopathic manipulation made my tics worse. 4. Claire No. Neurofeedback. They placed electrodes on his scalp and he viewed a screen that 'rewarded' him with game play movement for putting his brain into a certain state of active relaxation. It didn't help the photosensitivity, and it seemed to worsen his concentration. We did it for 6-8 weeks, and spent about $4K (advance purchase of multiple sessions), which wasn't refunded when we had to stop due to the concentration issue. DDR (Dance Dance Revolution) seemed to help restore his concentration at the time. Claire. No. Energy meridian tapping and voice therapy. (Same doctor.) No results. Worse than this, they would keep making him do it over and over and over until he finally said he was better. Eventually he would just say he was better because he was so sick of doing it, and they would claim success. [i should note that our neighbor --no tics-- has had good success with energy meridians, and I believe that accupuncture deals with meridians. This doctor just didn't work out for us.

CP, Kim, and Patty, CP, First, thanks for both the feedback on TV and on artificial ingredients. I added both inputs to the survey thread initial posts. We need to know as a group what works and what doesn't work, to keep newcomers focused on trying the things that have been most effective for the entire group. So it is good to know when things don't work also! For growth: Funny, because I chart my own son's growth around the same time each month! Re the waxing and growth, that makes sense, since growth depletes zinc. You can get the alphaketoglutaric acid level results from the Great Plains OAT (Organic Acid profile)...needs a doctor's signature. Metametrics has one through www.directlabs.com too, with no doctor signature. The zinc serum test can be gotten through Labcorp (or any lab?). Again www.directlabs.com has this for no doctor's signature. Enzymes isn't really a test, though you can test for gluten/wheat sensitivity through a stool test (www.enterolabs.com), no doctor's signature. But the enzymes help with overall nutrient absorption. Anyway, I heard it was important to correct deficiencies interfering with growth before the puberty growth spurt ended. It sounds like your husband was different there, but it would personally make me nervous to just wait and hope that it is the same... By the way, 120 may sound 'heavy' but my son is very lean and muscular. Actually, we are both almost exactly the same height and weight now. (I am a hair taller and a hair lighter). Some people think that teen behavior improves because the zinc is repleted once growth fades (low zinc can cause quicker tempers). That same theory could also explain post-teen improvement in tics. Why can't your child have candy again? Are you avoiding sugar also? My son will get candy on Halloween. www.smartsweet.com just came out with a chocolate bar with erythritol (and a little fructose that apparently doesn't affect blood sugar). They never have artificial ingredients. So I ordered it. I will post if it is decent. Lots of candies with no artificial ingredients out now, but we have to watch the sugar. I just found a xylitol fudge recipe and I want to see if it is decent too. Kim, I understand about the porphyrin test and your nerve...it will be there when you are ready. As I mentioned, I started EDTA this weekend. Really, everything I read says that it is so safe, so I am highly optimistic. I am still a bit freaked out that mine is so high. I am really glad that the enzymes did help with the tics. Somehow I don't remember that...either too long ago, or I wasn't reading the board when you posted it. Patty, I will start a survey thread on homeopathic/chiropractic/accupuncture/energy methods/eastern medicine effectiveness! Claire

This discussion came up a couple of years ago, and several people noticed it at the time (I think for some it was before they did significant detox/supplements though). I used to notice this for sure. I considered it part of the photosentivity (light flicker/flash) issue. For those kids, it just disturbs their sensitive nervous system. One can make an argument about getting enough exercise of course, but my son was active and still had this issue back then. Claire

I would like to add some things... 1. My son just turned 13 and he is 120 and 5'6". I say this because, as Kim pointed out, that for a while he had virtually stopped growing. He was low in zinc, which is known to stunt growth. [Labcorp zinc serum test]. We also had to supplement alpha ketoglutaric acid, another deficiency that we found, also known to stunt growth. Finally, although he wasn't celiac, he was allergic to wheat (both IgE and IgG tests). While removing the wheat did not help his growth, adding digestive enzymes [houston nutriceuticals] seemed to do so. We tested for and did all 3 measures at the same time and he grew 11 inches in 2 years, or 5.5 in/year, which is double the normal rate. He caught up and is 90th percentile now. It took a lot of zinc (75 mg/day), but we took regular measurements, and his doctor supervised. 2. What 'detox' did you do? As Kim asked, what food sensitivity tests? There are so many foods to be sensitive too, it may be important to do the test that covers 100s of them. 3. It sounds like the only test you did for metals was the hair test? If so, I am sure you know that the hair test gives many false negatives. I think metal toxicity is the single most overlooked thing by many naturopaths. I really recommend the porphyrn (non-invasive) urine test for mercury toxicity that Kim posted on. Emailing contact @labbio.net will get you a kit. $115 for the test. 4. Finally, my 'unpopular' closing. Given that our kids are the same age, I have to ask...Does your son play a lot of computer games, especially flashy games or games on a CRT monitor or TV screen? This is an age where they can spend hours a day there. My son's tics COMPLETELY disappeared (no supplements, no other interventions) with the removal of all screens for a week. Coincidentally, I have bumped up a recent thread on this. For many this is a last ditch resort, but since you are moving to drugs, it might be the time to try it if you haven't already. For us, it solved the immediate problem, then we treated the causes of the photosensitivity, and ultimately reintroduced the computer/TV/movies with no limit (other than parental prudence for general health). Still no CRT screens, but other than that, it will be 3 years next month since he had any tics. Honestly, for all you have done, this is what I would do next for 7 days if your son is motivated or can be bribed in some way. Claire

Cum Passas, It would help us help you if you would post more specifically what you have tried and how you went about it. There has been a definite process of both testing and trial and error for almost all of us. Sometimes we can spot something relevant based on our experience. Also, you don't mention if you went under the direction of an alternative MD. A good one can make a difference. The darkest hour is just before dawn... God bless. Claire

SORRY for so many posts tonight, but here is the last survey thread that would be good to update right now. We have other threads on commonality in test results (low glutathione, low zinc, metals), but that would be for another time. Again, the first posts says what information would be appreciated. Let's pass the torch and help other families with what we have learned. Claire

Again, anyone who has tried this one, please let us know what happened, miracle cures or nothing at all. I noticed that although some recent posters have commenting on noticing a correlation, I rarely see anyone doing this anymore. Not sure if it is just 'too hard' or whether they tried and failed. Please help us update this if you have information. Photosensitivity in particular to me is a clear sign that something else is going on that can be addressed. Screen avoidance isn't intended to be a permanent thing. Claire

I have a FAVOR to ask! Can we update this survey on improvements (or not!) seen from food elimination diets? The first post says what information is good to post. I will compile the new updates here. I have noticed that the IgG food sensitivity test and food elimination approach has become a fairly common thing for new posters to try for their kids. At one point, we did this 'survey' thread, which showed a high success rate for that approach. However, we have much more data now, and I think it is very important to update it with the new information, to keep our data points 'accurate'. As Patty hinted at on another thread, if you don't eliminate all the sensitivities, you might not see improvement, so this can skew the results, so please be specific on whether there was a test done, what was eliminated, and for how long. These diets are a lot of effort for the parent and certainly challenging for the children. It will really help our community to help us understand whether it still seems to be worthwhile. So be 'honest' if no improvement, we aren't looking for folks trying to agree, we are looking to uncover the most common paths to success. And for those for whom this seemed to work, if the tics came back later (while the food was still out of the diet), let us know. This is important given the thinking that these tics can just wax and wane. I will bump up other survey threads for the same reason ...it has been a LONG time since they were posted. Claire

I bumped a 'test' thread for you. It has tests that can be ordered w/o a doctor's signature, including IgG tests for food sensitivities. I bumped a couple of other threads too. It is important to understand that their are multiple avenues to try (e.g. Jeff's suggestions on artificial ingredients...) and that the path may differ for different children. Good luck. Claire

bumped.

Bumped for Ilovejadin.

Hi Kim, This is so very sad. So many people are so desperate to have their autistic child lead a 'normal' life. They have no idea that their child could have underlying issues that cause the symptoms. They trust their mainstream doctors completely, who don't know any better. Some will be hurt by this. Claire

I have not read this thread at all until tonight. I had read a lot about OCD when my son got fears during 2 bouts of strep. I just wanted to emphasize and reaffirm what 2 posters hear have said: "Voices" can be an OCD symptom. (This is aside from the drug-related affects that Kim discussed). We all know that OCD-tendencies are often co-morbid with tic syndromes. Not that OCD tendencies aren't something to be addressed (and also commonly associated with immune issues), but certainly it is less frightening for most of us to think about. I also think that Giselle's child is a good example of how a child hearing 'voices' then later saying it wasn't really voices demonstrates how communication is so difficult for what is going on, which others have also pointed out. Also, I read it is extremely rare for schizophrenia to manifest itself until the teens. Even so, the Pfeiffer clinic did a number of studies on schizophrenia, and found many immune system disorders associated with it, that when corrected, corrected the schizophrenia. The immune disorders highly overlapped with the ones we are finding here. I remember reading that it was important to correct and catch the immune disorders early to have recovery. Sorry that I don't have the links to what I read, but anyone can google for voices and OCD, I am sure. Claire

Well the irony is that the mercury in the vaccines can depress the immune system and make the allergies/asthma worse. Tough balancing act for a parent. Yes the thing to do is to find out for sure if the flu mist has it or not. We have one of those foam antibacterial lotions in the glove compartment, and whenever he gets in the car he 'washes' his hands. It made a huge difference in what he caught. Claire