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faith

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Posts posted by faith

  1. Allison (and others)

    re, the lights off in your son's classroom, how did you manage that? I am tempted to suggest that to the teacher, but you know, I don't want to call too much attention. She knows that he is a little twitchy, and that we are trying to get a handle on this with some docs, but am hesitant to make a big deal out of it, cause I don't want other faculty members to start asking questions. (I guess I just answered my own question!) But am curious how you got the teacher to do that. I laugh, because I know this teacher feels this is the worst class she's had as far as behavior is concerned (clowning, talking, not paying attn) so I wonder if I could make a suggestion pertaining to that- that the kids might feel calmer without the glare of flourescent lighting. :huh:

     

    Thanks

    Faith

  2. I am just curious if the increase in tics subsided when he was back from the cabin and back to usual activities in your home. May I also ask what his tic was that increased?

     

    I tried the no screens a little while back (no computer or tv, we don't have any lcd except for computer laptop) and I didn't really note any significant improvement. My husband was on board with this because I made him read some of the explanations on the threads from Claire. And the "technical explanation" was something he could clearly understand), so maybe you could try that.

     

    One interesting thing did happen tho, after I didn't see any real improvement, he opened my laptop (which is lcd screen) and started playing some "club penguin" game. He clearly started blinking alot, which he wasn't doing previously. I was so troubled that I practically pulled him off his stool to stop playing. Although, interestingly, it did not happen that significantly again. My thoughts was that it wasn't the screen, but the actual "game", i.e. colors, movement, flashing. I don't know. Since then he does computer stuff, but he hasn't put that game on again, as he is into something else now. We don't have any video games here except for that type of thing, so again, stumped.

     

    I do think I may want to try that again, tho (the no screens trial) Sorry, don't know about any glasses, but that sure is a good idea. And now that you mention it, once when he was playing indoor basketball under flourescent lighting in school gym, I tried to convince him to wear sunglasses while he was playing thinking it might help a little, since at the last practice he was really ticcing alot, and my husband was even upset. I said we would tell the coach that his eyes were bothering him from the brightness. But he wouldn't go for it.

     

    Thanks

    Faith

  3. Hello Ama,

     

    Could you tells us what the integrative doctor recommended? Was it just vitamin deficiencies that they tested for? How did you find he was deficient in B12 and zinc? Also, how long ago did you see that doc?

     

    Thanks and just keep reading,

    Faith

  4. Thanks Carolyn,

     

    Yay about cookies not having yeast. I wasn't sure. (but I'll still have to avoid corn, which I usually avoid corn syrups anyway). The foods he reacted strongly to were not things he really likes except for the pork being balogna and hotdogs, but he did have that very often since it was allowed on the elimination diet, and it was all I could get him to eat for lunch when in school. He has had breads lateley and although never drinks cows milk, he did have pizza cheese once in a while and also hidden dairy like whey, do you think that's enough casein for the test? I did give him a few splashes of milk in his cocoa and mac n cheese in days before the blood draw. But that's interesting about getting sensitive to foods you eat alot, I'd read about that. He's always been like that, being such a picky eater, when he finally liked something I would just let him have it everyday, and he'd have waffles for breakfast for like two months straight, and peanutbutter and jelly sandwich everyday last year for lunch. There is a rotation schedule, but I think we don't have to do that right away. She just wants to see how does off the main culprits and other remedies next couple weeks. I have to stress to him how we have to change around. We got some yeast free bagels last night and man, it was bad. It tasted sour, but I think it was spelt, maybe I should've looked harder but the store was closing. Isn't that funny about the flaxseed? I'm always hearing that some people don't do well on the fish oil, and here we are using flaxseed oil and that's his severe intolerance!

     

    Also, no he doesn't have amalgams, do dentists still use that? I think I asked the dentist a while back and they said they don't. It would be obvious right? Like silver? I don't see that in his teeth, and don't laugh but I can't remember if he ever had a cavity filled, I think maybe one. The naturo did ask us that. I have mentioned my concerns about chelation, and she does say it has to be done right. So it does sound like she is knowledgable about it and the receptionist did say there are different ways to do it depending on what your tests show. Right now she's preparing him for that with mineral drops should it come to that.

     

    Interesting about the yeast coming out,--curious, why are you having hydrotherapy? Is that like colonics? And I'm kind of curious as to where you got mercury toxicity. Did they have that in vaccines when you were young?

     

    Thanks

    Faith

  5. I wanted to relay results of my son's food sensitivity testing. It's kind of interesting. I'd love to know what you all think.

     

    If you recall, we did do an elimination diet through DAN doc for a month. I didn't really see any clear improvement so we never really did any reintroduction to see if any foods were reactive to him. The Alcat test shows severe intolerance, strong intolerance, and mild intolerance, and no reaction. Well, here's an interesting tidbit. He had one food at top of list showing severe intolerance--FLAXSEED! I've been giving him flaxseed oil for almost a year. And while on the elim. diet, I kept going back and forth with fish oil and flax, cause I kept feeling uneasy about the fish oil since many here have said they don't tolerate it well. And recently I buy this bottle of flax/borage oil and have been giving it for about a week. I'm wondering if that explains anything?

     

    Six foods were strong intolerance - bakers yeast, corn, eggplant, onion, pork, and sweet potato......

    I've been giving him bologna everyday for lunch on that diet and since; that's pork, right? Also, gave him sweet potatoes quite a bit, even cooked it in microwave and sent in lunchbox. Does anyone think that's kind of telling? I always wondered why I saw no improvement on that diet. I really hope this explains it. (BTW, no reaction to gluten or casein, although I'm surprised about the casein. I would have put money on that, guess I was wrong.)

     

    So now I have to find some yeast free breads. Do ingredient labels usually state "yeast". I haven't really seen it on any of the breads and baked goods we have. Is it just assumed? Are there such things as yeast free cookies? Carolyn?

     

    He is also getting alkaline water (with some extra homeopathic drops). Something on his blood test (anion gap) showed a little hight and apparently that means too acidic. Also she advised to stay on the B12 shots. I feel like she's kind of thorough and I feel comfortable with her approach. I pray we're heading down the right track.

     

    Heavy metal challenge showed lead and mercury coming outat a greater level than others. Its there, not off the charts high, but there. I think we will address that later after seeing how he does next couple weeks.

     

    So, I'm like hopeful that there's something in all this. Have many here had an actual food sensitivity testing, Igg or Alcat? Does it really help to avoid the foods?

     

    Thanks for any feedback,

    Faith

  6. Are you kidding, Kim, you are a gem. Your voice and others like you are desperately needed. Again I say, how do you come up with this stuff?! When I told Dr. Boris that I wanted to find out more about this before we tried it he just wrote on a peice of paper "Actos/and PPARs. and said I could find some stuff on the computer but there's probably very little. Why didn't he direct me to these things you are finding? I'm sure he must know that was published somewhere. Sheesh!

     

    I agree, it is very difficult to decipher with only an MBA in motherhood, but that's not gonna stop us from trying. So yes, I'm liking that stuff about the imflammatory process being a factor. Now I just gotta figure out what Interleukin-12 and TH2 and TH1 are! But yes, I think I'm further understanding the rationale of all this, however, my one concern is that most of this is all really involving the autism community and the symptoms that go with that. I'm not really sure how this fits in with the tics. That's my problem with it.

    Yes, I think my doctor tried the other stuff first, and feels since it didn't show any response yet, maybe this is the next thing. I don't just want my son to be an experiment to add to the statistics.

     

    This info helps a little, because what I'm feeling is that we havn't exhausted the other possibilities (treatments) yet, (and I will post about this separately), but I think I'm going to talk about this with the naturopath. She has opened up some new avenues based on the test results my son had. I like this doctor, because I think the naturo's way is to really study an individual's case and treat it individually, and I can see that so far she has done that.

     

    Regarding the inflammatory response, I'm thinking that no it's not totally PANDAS related, they don't mention that word in that Pubmed excerpt. I find it very interesting. I know there is something there. When we talk of "exacerbations" of symptoms (OCD, tics, etc.) somehow I think its all a matter of how you look at it. Maybe its the root of all of it, just when inflammation is at its worst, i.e. with an infection, strep, viral, or other unknown illness the body harbours, that's when the extreme onset occurs, but with the typical wax and wane tics, maybe its the same thing, just not as severe an infection. I say this because, even though I have seen tics here and there with my son since 3 1/2 yrs. old, last year (as I mentioned in another post) one weekend he started blinking and rolling eyes rapidly and had a real bout of hyperactivity at a birthday party. When we left the party he said his throat hurt, and after we saw doctor he said it was strep and gave antibiotic (amoxycilin). I'm telling you that with 24 to 48 hours later the blinking was over. A few weeks later we went to an infectious disease doctor who tested for the PANDAS connection, but his titres were within normal range. So even though he didn't show the strep titires, I'm sort of almost convinced something was there. That was just too coincidental to me. But I have nothing to go on.

     

    I'm just typing away of what comes to my mind, I don't claim to know anything either. But we should all just keep brainstorming. Like Melanie Griffith said in the movie "working girl" when she shows how she came up with her idea from reading something from "Page 6" in the Daily News, and her witchy boss rolls her eyes cause she thought it was a dumb thing to read, she says "You never know where the good ideas are going to come from". Assuming you all saw that movie! <_< I always liked that line.

     

    Well, thanks a heap for that and I'm going to read up some more on this.

     

    Faith

  7. Kim, you are a genius at finding info! I searched forever and never came up with that. Yes, this is exactly what I am referring to. (Chemar, please look at that link from Kim's post above). And as the blog mentions Dr. Boris, good old Dr. Boris once again, is our doc!

     

    If my son were an autistic patient, I think I would have no problem trying that, but I don't know about our situation. The doc says it has been used for MS, ADHD with about 50-60% success (because I asked) but I don't think he did for anyone with tics/TS (because I asked!). So I think this is trial and error, not sure.

    As I said, he didn't seem to want to go forward with anything else yet (why not test for metals -- yea, I asked! -- because I would think that would be a more plausible contributor, no?) I just wanted to see what he would say. I think his way is to do one thing at a time (as he says) and least invasive first. But..I need help now!

     

    Anyway, I saw naturopath this morming with results of ALCAT food sensitivity and metals urine challenge.

    I think I'll post on separate so as not to confuse the subject. Sorry to keep you in suspense! But I'm sure I'll have a whole other list of questions for that one!

     

    Thanks

    Faith

  8. Kim, thank you a bunch. I love that info. I feel like there is something in that, but I have to admit, I'm all over it trying to see where it fits in and am not getting anywhere fast. It's interesting about the folic acid/B6 that is mentioned but I'm not sure what it really means. The part about one thing having a calming effect vs. an excititory effect? What's your take on that? How does one achieve the calming effect? Does this only pertain to the chronic bacterial infections as they mention.?

     

    Has anyone here used tryptophan with any success?

     

    Faith

  9. Has anyone here heard of the drug Actos (pioglitazone) being used for autoimune diseases? This is the next thing our DAN doc wants us to try. It is supposed to be a drug used for diabetes, but apparently they have used it experimentally (not FDA approved) for autoimune diseases like MS, etc. I think the premise is that they believe that tics and tourettes is an autoimmune disease in which the bodies tissues attack itself, and the myelin of the nerves are injured and somehow this drug is supposed to aid in the repair of the myelin. But it takes quite a while, like about 9 months. (Carolyn, has your docs ever talked about this?)

     

    I'm a little leary of this, because it is a drug. I asked about side effects and he said maybe a little weight gain or swelling around the undereyes. I don't know what to do. He said it wouldn't interfere with any other treatments so I wonder if I could have my son take it, but still persue other avenues.

     

    I feel like I may have hit a little dead end or plateau with the Dan doctor. I asked about testing for metals (which we are doing with naturopath anyway) but he acted like he wanted to try other things first, and he only likes to do one thing at a time. I told him that I went ahead with the food sensitivity test with the naturo since we didn't really see anything with the elimination diet he put us on (and I was desperate!) and he said that was okay, but he feels its not a very accurate test. I think I will share with him whatever happens, and I also asked if he had any objections if the naturo did any homeopathic treatments, and he said no, (but I think he probably doesn't think much about that).

     

    So I'm wondering if you all had any experiences with DAN docs vs. naturo's. Did you just get inputs from both or is best just to stick with the one? I guess no one doc can do all, and its best to get the best of both worlds, is how I feel. Just wondering how to proceed? Anyone have more success and options with naturo? We will have our consult tomorrow, so I hope she can better lead us.

     

    Also, when I showed him my e-mail correspondence with the chiro/nutritionist doc who said that he believed the folinic acid was the wrong form to use for the methylation pathway, he said that "this guy is all wet, he's very wrong". He showed me the diagram of methylation paths and explained, and well now I just feel like the scarecrow from the wizard of oz trying to figure out which way to go!! Oh, well.

     

    Any thoughts? Thanks

    Faith

  10. John,

    You said you started a new vitamin regimen which included fish oil? Do you think maybe the fish oil is causing some problem as Chemar pointed out? Please let us know. I too had some questions, re fish oil. My bottle just ran out and am going to switch to flax/borage oil and see.

     

    Also, I was wondering about manganese and copper as it is in the minerals kit we were given by naturo. (please see my previous post above).

     

    C.P., did your son just start with tics at 12 or when he was younger? Is he still maintaing the improvements?

     

    Thanks all,

    Faith

  11. Yes, I'm sure that would be okay. The dose is only 1/4 tsp. so you can sprinkle it in fruit juice too. That is what I do. Just use a small amount of juice so as to be sure she drinks the whole product.

    (My pro-biotic complex says 10 bil. , if you want more just do twice a day.

     

    Carolyn,

    yes, I did stop that folinic acid too when I stopped the B12 but I see there was still 400 mcg. of folinic in his multi. (and 100 mg. of B6). As to the intramuscular vs. sub, I guess I have to ask doc about that today, however my feeling is that it may not matter for us, because we just need it to correct the methylation pathway, whereas the other way may be more important for the autistic children and the issues they use that for.

     

    Chemar,

    We have not had any vit. testing, just the metals and food sensitivity. I hope at the follow up visit this week I will get some things clarified. I think its a 1/2 hour visit (I hope) and hope I will be able to address all my concerns in that time. I really need alot of clarification and explanation, I'm not comfortable otherwise.

     

    Kim, could you please tell me if you still use Houston enzymes and your experience with that?

     

    Thanks all

    Faith

  12. Hi

    I'm kind of new here too, but have read your previous posts, and I totally understand. I was just wondering if you have sought or implemented any treatments like vitamins, doc visits, chiro, ect.

    With the leg problem he is having, maybe a chiropractor or osteopathic doc could shed some light?

     

    Also, if your child is in school, perhaps you could just say he is having some leg cramps and you are seeking treatments. I can relate to when you say that you used to do some things when you were little and your mom doesn't remember. I believe that I too had a few quirks. I remember distinctly bending my right leg back at the knee when I walked (about 10 yrs old I think) We even went to the doctor because I told my mother it felt tight, and the doct just said it was growing pains. My mother has no recollection of this (of course she is now 83 but believe me, a young 83, very on the ball and healthy for her age, thank God). So I don't know, like you say, my habits were never anything severe or alarming enough to warrant any attention. But for my son, she is beside herself!

     

    Hope everything settles down soon and you are in my prayers.

    Faith

  13. Okay, this is helping a little. If others are having experiences not doing well on b vitamins, maybe I'm onto something. Every little bit helps, believe me.

     

    My little one is almost 8 and only weighs 41 lbs. (47" tall). Does anyone have the opinion that perhaps all these vits are just too much for his little system? Maybe his immune system is being overstimulated? My feeling right now is about the folic acid, I've been reading my notes and posts that I've printed and folic acid seems to be something to watch for. Someone mentioned that Bonnie's vits contain that and some didn't think it was good for thier child. Any thoughts?

     

    I'm going to withdraw for a day, and then start over. Also, I have DAN doc appt tomorrow, its just our monthly visit, I really don't know what to ask about. I'm going to talk about the methylb12 shots and folinic acid questions I have, and I'm seriously thinking about stopping for a time and see what happens. I really have not seen any improvement, in any way. Chemar, when you say your son doesn't do well on the B12, did you mean with more ticcing? Honestly, 10 days after we started the B12, is when he started the blinking (before it was a soft vocal sound). But I did stop the B12 for about two weeks when I saw that and it wasn't like it all went away, so I don't know there. Does anyone have any ideas/knowledge of like how long it would take to get stuff out of system--I always thought it was about four days. O gosh, I am running in circles here. But I'm gonna keep going. If anyone else has any experience with adverse affects of vits, please share.

     

    (Deedee, the probiotic we use is also Klaire Labs, probiotic comples, 10 bil. powder form and must be refrigerated)

     

    (Also, Kim, just to tell you once when I was in hospital with a montesuma's revenge sort of thing, I was on antibiotics (IV) and my doctor did tell me to take acidpholis with the antibiotics I was given. And by the way, the doctor ws the physicians assistant to my primary care physician. Maybe the newer ones are starting to get up on these things!)

     

    Regards all and thanks

    Faith

  14. Hi all,

    I could just use a little help. I'm just trying to brainstorm a little. I'm going over some notes and diary for when my son started different supps, etc. My feeling has been that during last two months things are not getting any better, quite the opposite. So I'm feeling maybe I could find a culprit somewhere.

     

    Chemar, you mentioned B6 being a little high (when you thought it was 200 mg.) so I'm just wondering if anything in his multi might be not compatible with him. His last multi given by DAN doc had 100 mg. of P5P and the nu-thera has 50 mg. (taking since end of Dec 27). I did note that weekend of 30th and 31st, he had very minimal tics. But it didn't last. My thoughts are along the line of maybe the reduction of b6 was good for him initially, but after a while even the 50 mg. is not so great for him. I'm really just fishing. Any thoughts are welcome.

     

    Things I am also suspicious of are the folinic acid. There is 400 mcg. in the nu-thera, and he also gets a 1 mg. tablet given separately as an adjunct to the methylb12 shots. Maybe that's too much?

    Anyone? (these DAN docs seem to LOVE folinic acid!)

     

    Other suspicions are manganese. It has 1500 mgcs. (the previous multi had 2 mg.) (and I was also supposed to give a little from his mineral kit given by naturo. (the vits are from DAN doc.) And the mineral kit also has copper (none in multis)

     

    These are all just my own concerns. Something has to be there. I would appreciate any input or experiences from all of you. When I started with the DAN doc, he only had a small vocal, but is now moving on the blinks and head nods. All this supplementation and worse? Something is wrong.

     

    I mention these particular items because I am reading back over some notes and posts that I keep, like one from Claire that had info on "undermethylators" and vits not good for them. (Claire, are you still out there?!) There was some contoversy about folic acid, B12, choline, DMAE, and copper not being good for that. (I think it was som link from Dr. Walsh. (I havn't figured out how to post access to another link yet).

     

    Just because many of things are good for autistic spectrum doesn't mean it is good for children with tics. Please help me figure this out. Anyone? :wub:

     

    Huge thanks

    Faith

  15. That is interesting, Carolyn.

    I'm just curious, do they say what the purpose of the study in France was supposed to accomplish?

    Is it just to show that pepple with neuro disorders have hight mercury? Is there anything that will be done about it other than be used as some proof about the vaccines? I think what I mean is, what will do with those in the group, was there a plan of what to do as next step? Like do they need to be chelated next. Is that why they did that study? I'm very interested in that, I think mostly because I would like to understand if the chelation therapies are safe in the long run. Do you know how long they have been using these methods, i.e. DMSA, etc.?

     

    I'm not really up on all this, but I feel the passion, especially for the autistic kids and families.

     

    faith

  16. Thanks Chemar,

    The formula I have is hypoallergenic form of Nu-thera. It has 50 mg. of P5P.

    I don't see any mention of the sucralose. It says "does not contain casein, gluten, sucrose, art. color, flavorings, preservatives, yeast, soy, wheat or milk. This was purchased right at the DAN docs office.

     

    Also wanted to add that I do watch the art. stuff and especially high fructose corn syrup.

     

    Hopefully my next visit with naturo for results of food sensitivity test will uncover something. My fear is that it will be a laundry list :wub:

     

    Also, I wanted to ask you if your son ever had heavy metal testing, and how you handled that aspect. I know you mentioned you use some natural stuff (chlorella) Is that on your own or with guidance?

     

    Thanks,

    faith

  17. Patty,

    I just wanted to give a run down about what I have done so far for my son (since you asked!)

    Any thoughts are welcome.

    When he had a vocal last year around this time (like a mmm and then progesssed to like a little hehe), I removed milk and obvious dairy (not hidden in cookies and cakes), and cut back on colors and flavors, no artificial juices, used some organic food (not all) and some cookies without artificials or hydrogenated oils. He stopped the vocal within a week or so. I was convinced I was on to something.

    I also gave magnesium (similar to natural calm) B6, and then flax oil and taurine, and I think his regular multi.

    End of summer he started again, I thought it was some ice-cream he would have once in a while. But during this time we would cheat sometimes as long as all was okay. So then we cleaned up again, but I haven't been able to get back that first success.

    That's when we started with the DAN doctor. He did

    - environmental allergy testing (only moderate for cat and mold and dustmite). We have a nasal spray with the neutralization, and took all precautions. (hepa vaccuum, hepa air filter, dustmite covers for bed, clean as much as we can, keep cat out of room (They said it was okay to keep cat)

    - did elimination (GFCF) diet for one month. By end he still had tics.

    - methyl b12 shots (1 month on intranasal and past month on shots)

    - supplements are Super nu-thera multi, magnesium, fish oil, (i add extra magnesium, taurine, probiotic by klaire labs and some extra b1 and 6 sometimes.)

    - cut way back on junk. Never give artificial juices, only about 1/2 cup 100% juice w/ no artificial colors or preservatives.

    - Also did about 6 chiro adjustments recently.

    He does not have asthma or allergies. He never displayed any symptoms before the environmental testing.

    - filed for bankruptsy :wub:

     

    Since September, things have not gotten any better (although on New years eve weekend his tics were very minimal. I can't figure out what I could attribute that to, but he did have a chiro appt. that Friday, but since then things I would have to say are worse, not better.

     

    So prayer is all I have left. But I know and believe thats alot, maybe the all...Faith

     

    If you or anyone else has any input, I'd appreciate.

  18. Hi,

    re: the fish oil

    Can someone please help. We had my son on flax oil for about 10 months now, and was one of the first things I added (along with magnesium, B6 and taurine) and I thought he did very well. His tic at the time did diminish, and so I stayed on that. Right before school a small throaty gasp started and then about two months later some eye blinking. Even during this we stayed on the flax. But around End of November we started a fish oil by nordic naturals given by the DAN doctor (along with nu-thera multi).

    My question or thing I want to figure out: I know some people say they don't tolerate the fish oil. I assume you mean with more ticcing? It's hard to figure out because he already had the tics going, but even as I started it, I would stop for a few days to a week just to see, but I don't know. Is that long enough to tell. If someone is already ticcing, how do you know if the fish oil (or anything new) is causing a problem. Would there be a new tick or just that one getting worse. It was hard to tell.

     

    So now that the bottle is finished I'm going to switch to a flax/borage by Now brand. Just curious if anyone has any input.

    Also, in the mineral kit we were given by our naturopath, it includes copper and manganese, both of which I am always leary about since some say its not good for tics (I asked her about it and she said to take it if the test indicates he needs it (the test is a taste test, if it tastes like nothing or just okay taste, then that's supposed to indicate you need it). Any thoughts?

     

    Thanks

    Faith

  19. Hi Daniel,

    Sorry, I didn't get that line"we noticed a change in free". (a typo?) Please clarify.

    Did you think the enzymes reduced tic symptoms before seven months or you only saw improvement after seven months. I just wonder if the enzymes helps the foods break down better and not cause the problems associated. How is your child doing presently? Thank you and regards, Faith

  20. Michele, I too am curious about the flus shot your son had. Why did you get that and was your child already exhibiting symptoms long before that? And are you saying that he only gets the tic symptoms after an illness or on and off all the time? How long is he tic free in between? Also, there was another mom (was it you or Patty) that said not long ago on another post that she was talked into a flu shot for her child, just curious.

     

    Sorry for the questions, I am very analytical and like to know of all experiences, you never know where the next clue could come from.

     

    Thanks

    Faith

  21. I just want to add something here, since you mentioned it. How do you differentiate PANDAS from PITANDS. I know what it stands for but how do you test for the PITANDS? Is that also having to do with the strep connection or just any viral illness? My son did have blood tests which test for the ASO titres, twice. His were below 60, which I believe is normal and so this does not seem to be the case for him.

    I just want to mention for those looking into this, I think the PANDAS thing is not an official diagnosis. It is, I believe an ongoing study that connects people who have escalations of OCD or tics with strep infections, and subsequently high strep titres as found in the blood tests. Even if this is found, I think (what I was told anyway, is that it is still not a definitive thing, but something that they are just starting to connect the dots with. I think that is where the PITANDS comes in, as now they are feeling it could be with any pediatric viral or infections, not just strep. Forgive me if I'm not too clear on this, I barely understand it myself.

     

    Anyway, I just want to tell of one incident I had with my son back in May of last year. He was doing well (after he had vocal that went away coinciding with our removing milk and obvious dairy) He came home one friday afternoon and was blinking and looking up with his eyes. Then over the course of the weekend it got worse and worse. We were at a birthday party at someones house/yard and he was also very hyperactive and extremely annoying, I felt like I couldn't control him. I was in tears. On the way home he said his throat hurt, and so that monday we went to the doctor who believed he had strep throat (he had red dots at back of throat). I wasn't even there for that, I was just so concerned about the blinking and wanted to start addressing that. He gave us amoxycillin for the strep-- and it was wierd--within two days the blinking stopped. I thought about it and read and read and so somewhere along the line told the pediatrition of this, and asked if he knew anything about the PANDAS. He was familiar, but not an expert and so referred me to an infectious disease doctor. We went and he knew all about what it was and did the proper testing. (As I mentioned, I am in New York, so finding docs are not usually too difficult).

     

    SO, anyone reading this would probably assume that this was most probably an issue for us, but NO,

    the titres were not high. (less than 60). And we also had another one done when we started with the DAN doctor in October, and it was roughly the same. So its all so confusing to me what that episode was all about. So I wonder if there is something else, not strep, but some infection that can cause the exacerbation, because as I said, he does have two things going on right now, in spite of all our efforts. I'm just throwing this out there to add to the confusion!!

     

    Any thoughts are welcome.

    Faith

  22. Thanks for that guys, it helps to see what others are doing and the effects. I have been following much of these suggestions over the course of last year and so am stumped as to how I can be doing all these healthy things and still having a big problem. I Has anyone here had a long road to success? I mean, now I am dealing with two to three different tics at a time and I guess I just can't understand. I would think at best he should be doing much better, not worse.

    So I guess something else is lurking here. I know I have to wait for the answers for I am working under guidance of naturopath and DAN doctor, but its hard.

    Somehow my gut feeling is that my son's problem has to do with dairy and caesin. Just my feelings from past. About 9 months ago, when he had a vocal, I stopped giving dairy, (just obvious dairy like mild, ice-cream, cheeses) and he stopped within a week or so. I was convinced that's what was making him make the sounds. And it stayed away all summer. I stuck to the diet clean up about 90% and all was good.

    Maybe his intolerance is routed deeper, like to hidden dairy too? But we did a month of dairy free, caesin free, (everything free!) elimination diet, and I still heard something. But now that I have reintroduced some things, just not milk and ice cream, it does sound a little harder or obvious, so maybe there is something there. So I am stumped. That is why I went ahead and did the Alcat food sensitivity test. I pray this uncovers something.

    What do you all think? Anything ringing a bell here for anyone? Would enzymes to break down gluten/casein help? Has anyone tried with success? Searching....

    Thanks

    Faith

  23. Thanks Carolyn for all of that. It is a new morning and I pray today is a little better.

    Just wanted to mention, no I didn't give him any medicine for throat. And we have done some chiropractic work since right before Christmas. He had about maybe 6 adjustments, (2x week). Once he had a great weekend after one friday adjustment, but then next time not so good. So I kept on, but right now we are resting for like 10 days or so to see if he levels out. I'm not sure what if any effect its had, but I had to try.

    I am thinking about the massage or cupping next as you suggested. (As I type he's a little calmer while eating his breakfast) I pray that's a good sign for this day. Thank you honey for your input and encouragement.

     

    Faith

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