Giselle

Hi there everyone, long time no talk!!! Hoyt has been doing super well of late and only had issues during pine blooming time. But Fifth disease is rampant at his school and now both he and I have it! It is supposed to be very mild and with me it is but oh my gosh he's really suffering. He's had a temperature of 103 now since Saturday night, swollen glands, sore throat, red itchy eyes and he's sore all over - he even spiked at 104 for a short time but has gone back to 103 and holding. Checked for Strep - no, thank goodness. I know he has an overactive immune system - is it perhaps ramping up too much? Has anyone had any experience with this supposedly harmless childhood disease? Hope you are all well! Giselle

Hello, I feel terrible that the Rescue Remedy didn't work - and worse had such ill effects! As I said we ALL take it (now even my husband) and find it so helpful. It most definitely sounds like an allergic reaction. It works so quickly that I hope it got out of her system as quickly. Good luck, Giselle

Hi again! Yes, we are so thrilled!!! Kim, yes it was challenged/provoked. All his metals tests have been, with DMSA - is that a bad thing? I hope not, regardless, this test shows amazing results compared to the last ones we did (3 years ago, 2 years ago, 1 year ago). Someone told me (Caroline?) that your body gets rid of things in order-ish. Mercury goes, then lead, then other things start leaching out? Don't know if that's true but it would explain the mercury going down so much and less gains in the lead (although his lead wasn't that high to begin with and did improve over all). Patty, we got his food sensitivities down because I have become what I affectionately call myself: A food Nazi. I am religious in the avoidance of his food allergens. It has been a trying path, one that had me in tears often when I realized I'd goofed up (those early days) but if he's showing antibodies to it it just simply doesn't pass his lips - ever. Yesterday we really celebrated his strict avoidance by talking all about the ways he feels so good right now. I told him that all his hard work is finally paying off and he really can feel it. He says he feels smarter (he's not ticcing so he can actually listen to the lessons and get them the first time around!) And he says he has so much more energy at P.E. (well sure, he isn't burning it all up ticcing!). I found amazing recipes that don't include his allergens so he never had to do without good stuff, just couldn't eat commercial stuff. Which was hard like at birthday parties, at the movies, etc. We found restaurants that had choices that didn't include his allergens. Lastly I rotated most all of the foods he could eat. Early on I had him eating the foods he could eat all the time - then he developed allergies to those because he ate them too much so his allergens went up - now that I rotate his food we have been rewarded with this great news. I think he's just hypersensitive to getting the same stuff all the time - it was most definitely harder for me but I am so happy now that I've done it! He can never go back to eating all those allergens all the time but now I can rotate some of them in occasionally with hopefully no ill effect. Funnily the one I'm most happy about is tomato! You really can't cook a lot of saucy stuff without them. There were so many times I just wished I could make a good healthy chilli but without tomatos? How? P.S. I despise!!!! cooking so I figure I'm going straight to heaven because this is most definitely penance!!! By the by he only gets organic food (so dang expensive!!!) and no artificial anything, no colored anything! 81lumberjack, I have no idea how we got his clostridia down - we didn't even know he had it! He just got better (after 2 months of the worst tics ever). We did basically nothing all summer because of his condition so he got lots of rest. It sucked because he couldn't even go to the premiere of his Dad's movie Underdog (he did the special effects). But he was ticcing so badly he just couldn't go. But now our DAN doctor has given us Florastor which supposedly really helps with it. He had been taking probiotics throughout all this so perhaps that helped? Maybe it's not gone? I have to research this as I'd never even heard of it and as we just found out yesterday I haven't even had the chance!! Anyway, keep your fingers crossed for us! And THANK YOU for all your prayers for him, me - I can't even tell you how much knowing I have you all here does for me!!!!

Hi everyone, I have simply the best news! As some of you know Hoyt had an abysmal summer - the worst tics ever. We decided we'd retest everything and added many more tests to boot (still waiting on the genomic test by the way). So happy we retested. While waiting for results however he got so much better - to the point that he's enjoying some of the best health he's had in years! Well the tests told us a lot, still has some of his already known deficiencies (B-6, magnesium, Vit. C) but his lead is almost at normal and his Mercury has gone down so much he's just peeking into the yellow whereas he was mid-level red before! And that was totally on his own - we didn't chelate at all, perhaps his immune system is kicking in? AND I found out what made his summer so horrible - he'd had a horrible case of clostridia sp? (a bad guy bacteria in his gut). Which obviously must have rectified as he's doing so well right now! Also his delayed food allergy test showed him reacting now to only 6 foods!!! (He started at 17, went UP to 23 and is now down to 6!!!) All this was from his DAN doctor. We go to his Environmental doctor next Monday (I want her to muscle test him to confirm the IGg test) as well as get some of the results from the tests she did during the same "bad" period, and then on to Nancy Mullen at the end of October. Anyway - just had to share some good news!!! Hope I don't jinx it!!! Love ya all, Giselle and Hoyt

Hi Kim! I've missed you! Our main doctor recommended it ages ago and he will get the results but we also are going to start seeing Dr. Nancy Mullan (Burbank) who won't even begin seeing you until you have the results in hand. It was her office who told me to only get the $700 test because Dr. Mullan interprets the results - when you order the more expensive test you get Dr. Yasko's interpretation with it - I believe that is $300 more. Both Dr. Schwartz and Dr. Mullan were recommended to us by Jacquelyn McCandless (the Autism Guru). We shall see! What was interesting when first talking to the lady in Dr. Mullan's office when she was going over everything is that there are 6 forms of B12! Apparently this test will tell you what forms of the different vitamins are best for you. 6 forms! I was only aware of 2 (not that I did extensive research or anything but still!) It sounds like they are having many positive outcomes, at least with the Autism patients, as not many other spectrum kids have tried this. And yes, reading the information is quite a challenge - what was cool is they sent over a very detailed Krebs cycle chart (looking at that gave me a flashback into my Bio101 final YIKES!) - but it made it quite digestable and right away looking at it I know where some of his breakdowns HAVE to be and those were confirmed with some of the things we already know about him - that was cool, that yes, we at least are on our way to figuring some of this out. Anyway, I most definitely will post the results. And, dare I say this and jinx it, he had a very good day today. Hoping you are well! Giselle

Hi! My two cents - the Rescue Remedy is amazing! It works for ME, my son (who it is mainly for) my husband, and all my animals! It just takes the edge off of anxiety for a calming effect. The night time one is also great! Giselle

Hi everyone, long time no "see"! Been so busy with summer, Cub Scouts, new pets and life in general! Hoyt isn't doing so great, got really sick and his tics went nuts and I was also pretty lax about his food on a summer trip but he is starting to improve - hopefully can go to school. But I recall always having this worry just before school - will he go?, will I home-school? - and so far he's always rectified just before school - let's hope it happens again! Anyway, with this latest huge bout of horrible tics we redid a lot of tests but two new ones and I'm really interested to see if anyone else has tried one of them. One of the new tests was to test his amino acids but the other one is what I'm mostly wondering about your experience with. It's Amy Yasko's Genomic Testing. Apparently it tests the child's DNA/RNA SNPS to find out where the biochemical breakdowns are. Apparently a lot of people in the Autistic community have benifited from it - anyway, it's not cheap $700! but we decided to try it. It takes 8 weeks to get the results and we only took it last week (it's a finger prick blood test) but will keep you posted! Feels very CSI to me Sharing a Hoyt witicsm - he is always making funny little aside comments mostly to the air, testing to see if anyone "gets" his humor: On our last trip to Target: "Gosh does that dog want his eye shot at?" I just thought that was so funny! Ta for now! Giselle

Hi Carolyn, well that sucks - guess you won't be buying it then - although you might still try it as Hoyt reacts quite strongly to artificial anything but not to this. Mind you we don't use that much of it - only on cinammon toast now and that's maybe once every other week. He's been eating olive oil with anything else we used to use margarine or butter for - but if I recall you have issues with olives? I've even been putting olive oil on popcorn and using lots of salt - oh, I forgot to tell everyone, last round of testing showed he wasn't reacting to corn anymore! What a total relief - I have gone back to it only sparingly but it makes eating out so much less scary and he gets the odd evening of popcorn and a movie! Yeah - especially for me because I only eat the things he can eat so that he doesn't feel so alone so now I get popcorn too! (organic of course!) Good luck with the margarine. Giselle

Hi Everyone, thank you for your kind words about Hoyt. He got a little better and then is down again - it will pass, it will pass, it will pass. In the meantime my Mom forwarded this to me and I thought it was perfect for our little "puppies" - perfect but just different. A farmer had some puppies he needed to sell. He painted a sign advertising the 4 pups. And set about nailing it to a post on the edge of his yard. As he was driving the last nail into the post, he felt a tug on his overalls. He looked down into the eyes of little boy. 'Mister,' he said, 'I want to buy one of your puppies.' 'Well,' said the farmer, as he rubbed the sweat off the back of his neck, 'These puppies come from fine parents and cost a good deal of money.' The boy dropped his head for a moment. Then reaching deep into his pocket, he pulled out a handful of change and held it up to the farmer. 'I've got thirty-nine cents. Is that enough to take a look?' 'Sure,' said the farmer. And with that he let out a whistle. 'Here, Dolly!' he called. Out from the doghouse and down the ramp ran Dolly, followed by four little balls of fur. The little boy pressed his face against the chain link fence. His eyes danced with delight. As the dogs made their way to the fence, the little boy noticed something else stirring inside the doghouse. Slowly another little ball appeared, this one noticeably smaller. Down the ramp it slid. Then in a somewhat awkward manner, the little pup began hobbling toward the others, doing its best to catch up.. 'I want that one,' the little boy said, pointing to the runt. The farmer knelt down at the boy's side and said, 'Son, you don't want that puppy. He will never be able to run and play with you like these other dogs would.' With that the little boy stepped back from the fence, reached down, and began rolling up one leg of his trousers. In doing so he revealed a steel brace running down both sides of his leg attaching itself to a specially made shoe. Looking back up at the farmer, he said, 'You see sir, I don't run too well myself, and he will need someone who understands.' With tears in his eyes, the farmer reached down and picked up the little pup. Holding it carefully he handed it to the little boy. 'How much?' asked the little boy. 'No charge,' answered the farmer, 'There's no charge for love.' The world is full of people who need someone who understands. At times like this I totally worry about Hoyt's future. I know that all his classmates love him, we love him - he'll do fine.

Well here we go again - spring sprung early here in So. California - and Hoyt is just crippled with tics. He's been doing really well and then spring comes and he tics about once every two seconds- poor guy. I started the Zyrtec last night to try to alleviate his rising Hystamines but so far nothing. He was sick recently so I think some of the conjestion is left over from that but this is just painful to watch. He went to the chiro on Friday and our Osteo yesterday with no relief (they usually help a lot). We were supposed to go to Disneyland with another family today and he said he was too tired! I doubt he'll go to school. I always feel like I've made peace with his Tourettes (accept it, deal with it, ignore it) and then episodes like this happen and then I feel angry all over again - it gets SOOOOO bad - it just sucks!!!! No need to respond, just wanted a place to vent - this too will pass, I know, it's just that. . . well. . . IT SUCKS!!! Giselle

Hi Carolyn - mine does contain artificial flavoring - but it doesn't seem to effect Hoyt - but I hardly use any - just every once and a while - usually on cinammon toast which is maybe every other week or three. I'd be interested to know what the artificial flavoring is made from so if you find out I'd love to know. Giselle

Hi everyone - more monkey business with antibiotics - we're doomed - now I never have to remind myself why I pay $10.99 a pound for organic beef! http://www.washingtonpost.com/wp-dyn/conte...0301311_pf.html Giselle

Hi there, we had the first test done as the second wasn't available back then - but next time we do it I'll do the second - it sounds like it's a lot more comprehensive. If money is really tight though the first test is really good too. It really helped out my son. Giselle

Daniel, you're so totally right! It just so happens he's doing really well right now and I really didn't expect him to tic at all so wasn't really looking at that, more at whether he would get the words correct because there were two verses that are so similar as only a few words change in them (he got them right) - but thought you all might like to know as this is the board for it. He was so tired this morning he didn't want to go to school - and even mused why would they have school after such an exciting event? I told him it was for people to be able to tell him he did a good job - he perked right up after that! Such a ham! You know I never get to use this icon but today I can, he's my little star!!!! Thanks to everyone!

SO HAPPY! Hoyt did wonderfully! He was great! He didn't tic at all as I expected but apparently there was SOME movement up there - he told me "my knees were knocking together I was so nervous!" You would never have known it though. There was about 600 people there and everyone loved it. I was taking NO chances - he soaked in a magnesium bath for 40 minutes before he had dinner. Dinner consisted of grass fed beef, artichokes, brown rice and a little extra B12! The cutest part was that he told the girl he's had a crush on for two years that she looked pretty and that her dress was nice. She waited awhile and then told him "you look so handsome." He was over the moon about THAT! What a great night! Thank you all for your support in this - it totally turned out perfectly and he was SO proud of himself!!! Giselle

I think with magnesium - if taken orally you take it to bowel tolerance (when your stools get runny you cut back the dose until stools remain formed). I don't know what the signs are for taking it transdermally (the baths) but Hoyt gets a carton in a semi-full tub each evening and is only the better for it. He's almost 9 and weighs only 60 pounds (he's tall but very slender and slight - lucky him!). My son's Environmental Doctor suggested the enzymes he's taking they are called "Total-gest" and will check on what's in them when I get back - the play that Hoyt's singing solo in is tonight and I'm helping with all the actors, costumes, etc. at 1:00! Talk to you soon! Giselle

Hi Patty, I think what the magnesium baths show is that he might be magnesium deficient. Which many of Tourettes kids are (and actually our DAN doc believes about 70-80% of the regular population are as well and believes that many of the newish auto-immune illnesses can be attributed in part to this). Your son might benefit from the No-phenol if phenols are a problem for him - they might not be - although I believe this product helps somehow with yeast if I recall (I don't remember why but if you search this forum I'm sure it's somewhere - or perhaps Kim might pipe in - I think she knows a lot about it). I don't know if you've done this yet but a delayed food allergy test (IGg) would be a wonderful tool for finding food related tic triggers. It helped us immeasureably. At the time all this roller coaster started for us I couldn't wait for our first appointment with our DAN doctor so I tried an elimination diet. I first ruled out the ones that many people say effect our kids: gluten and dairy. He got WORSE - but when we got the test results back from the IGg test I found out why - he WAS allergic to gluten and dairy but he was also super allergic to corn! I had replaced all his wheat things with corn things hence why he got worse. To this day he's even more reactive to corn than dairy, soy and gluten combined; so much so that he gets grass fed beef from Whole Paycheck, I mean Whole Foods. He was reacting to beef and we finally figured out it was what they ate that bothered him not the actual cow! We have started enzymes recently and they seem to be doing the job for him. He was showing that he was reacting to his vitamins - but he desperately needs his vitamins. Daniel Quan really urged me to try enzymes which we have. He is off all his vitamins except B12, B5, and his omegas. I was really worried about his P5P as he was B6 deficient (but that seems to be the one he's reacting to the most). But after a few days (7) on his enzymes he has been reporting remembering his dreams again! A good sign for B6 I believe. And his tics are remaining stable! Giselle

Hi again, so glad epsom salts work well - they really do for Hoyt too - just to let you know Kirkman labs makes a magnesium cream you apply to the skin for times when a long bath is out of the question. One really excellent thing for detox that is super yummy is Artichokes! Who knew? Hoyt just liked them (his favorite food! actually craves them sometimes, then I found out that thistle is excellent for detox and it all made sense). We bought a pressure cooker just to make them. I put olive oil, garlic and salt in a dish, stir it up and drizzle it over them before they cook - super delish! Hoyt's been having a tough time on and off and that's exactly what he gets - artichokes for dinner and a magnesium bath. We use chlorella too. I actually used it after an unplanned removal of a mercury filling (it literally crumbled out while I was having my teeth cleaned!). Also was told to make a salad with beet greens and parsley - kinda yucky but only ate it for a week or so. Giselle

Hi there, I didn't totally read all the posts on this but just wanted to add that if I give my son B6 (or P5P in his case) I can't give it at night as it gives him more energy and he has a hard time falling asleep. I give it in AM and at lunch only - just him perhaps but B vitamins seem to ramp him up some. Good luck, Giselle

Hi Patty, one thing about his swollen lymph nodes and an increase in tics - swollen lymph nodes usually means that your son is getting sick or fighting an illness, my son always has an increase in tics when he's getting sick. Giselle

YEAH!!!!!!! She gave him the part - she decided today! We had a week off at Thanksgiving and actually over this time Hoyt had a horrible time with his TS - no offending food but I think he's reacting to his vitamins so as of Sunday I took him off everything again! I had to keep him home from school on Monday he was doing so badly. He was getting much better by Tuesday but I still kept him home. Sure enough she called that day asking what was up (I was expecting this! and let me interject - it's unusual for the teachers to call home. He's been at the school 4 years now and I've only been called once before and that was because he had a fever - she was very invested in this decision!) I didn't tell her anything except that he hadn't been feeling well (the truth) but that he'd be back the next day (Wednesday). They had chapel yesterday (parents are aloud to sit with their kids for chapel and I go every week) and usually she sits at the piano during the homily. This Wednesday she sat in the choir loft and stared at Hoyt - it was awful!!! He only ticced once which was a total surprise because they had used incense earlier and the lady sitting in front of us was wearing perfume (death to him usually). He had music for the first time today Thursday. My stomach was doing flip flops when I went to go pick him up because I knew she would have made her decision. I didn't say anything about it and waited for him to tell me. He told me as soon as we were out of the hallway. He was so proud and happy and I was so relieved and of course proud and happy too! But I was so thrilled that she either got over her prejudice or decided to give it a chance. Of course he knows nothing of the drama that has been going on and I'll keep it that way. The sense of relief I had was overwhelming! I'm really glad I didn't get in the middle of this - this has been her decision and there was no pressure from me whatsoever. I thought if I'd made a big deal about it then she might have chosen him because of that - I wanted to see what she would do. I had a great idea though had she NOT chosen him - kinda of more my style. I was going to give her CDs of Andrea Bocelli, Stevie Wonder, Ray Charles, and Itzhak Perlman for Christmas . He still has 5 more years with her so I thought if I'd given her the CD's I would have subtley made my point and perhaps she'd rethink the next time - kinda shame her a little - but I didn't have to - she came through! YEAH!!! Thanks for all your support and prayers!

Hi Patty, yes, my son has many food allergies (gluten, soy, dairy, corn, dyes, bananas and others) and a few environmental allergies and is super sensitive to all chemical smells - they give him an instant headache as do many perfumes. I agree that I want him to absorb his vitamins from his foods and am starting with enzymes (thanks Daniel!). I actually believe this last horrible bout of tics is because of his vitamins - something in them is bothering him when it didn't before. I took him off everything again and he's almost perfect again - but he needs them, especially B6 (P5P) and zinc. I'm hoping he will last the next 2 1/2 weeks before the Christmas break and then I'll try to reintroduce them (perhaps a different brand) - perhaps the enzymes will have kicked in by then - hope he can tolerate these too. But he's much better today and hardly ticced at all, I could have sent him to school and am doing so tomorrow. I wonder about NAET - and even my son mentioned it during summer as he said he'd like to eat some of the foods that he's not able to now. Only so much one can do at a time and on Thursday we start seeing a Cranial Sacral Osteopath who is about 40 minutes from us - going to give that a try as everything seems so rooted in his jaw, head, and first vertebrae (that's what is always out when we see the chiropractor). The Osteopath asked some pertinent questions: Difficult birth? - yes, breech and C-section. Head falls? - one when he was 2 1/2 straight into a door jamb, about six months before we saw the first tics (which we didn't even know were tics at the time - conscious grinding of his teeth that he couldn't stop doing). Strange nursing presentation? Yes, would only nurse one way, I couldn't flip him and had to cradle him on my left breast but football him on my right (he would nurse with my breast on his right cheek, not look the other way and nurse with it on his left cheek). A couple of other questions about his teeth (which don't match up, the middle of the top is almost two teeth off from the middle of the bottom). He thought he'd benefit from it - I hope so! So glad it's working for you. Do you have to avoid the food or vitamin for 25 hours? One practioner I spoke with said she had a technique to bypass this. Giselle

Hi there, no we haven't but we did try NAET - it seemed to work for a little while, at least with eggs, but now not so much. A good friend of mine did NAET and she found the same to be true. Good luck though, some things work for some and not others. Giselle

Hi Patty, you know I used to think I had it all figured out but it seems like all bets are off these days. We religiously stay away from his allergens (I do it with him so he's not alone, plus he gets a dollar for each food item he refuses - adds up quick, all those darn cupcakes at school! ), we also had a really good handle on his deficencies and the neurotransmitter needs. He would do wonderfully - no tics at all for months on end and only have tics when he came down with something or if something offensive was blooming. Then all he** broke loose and he hasn't been doing well for sometime (on and off so quite a roller coaster - it sucks how much my mood is tied to how well he's doing. . .or not doing). He was taking LOTS of stuff but one thing was a neat product called CalmPRT by Neuroscience which contains rhodeola rosea which in different dosages either excites or calms the nervous system. It seems that he developed an aversion to it - it started to make him tic more - then it seemed EVERYTHING he took made him tic more. We took him off everything which calmed things down for a short period but then he bottomed out and started needing stuff so I've been trying to get the combo correct ever since. He's so hyper-sensitive that it makes it very hard. He has some good days and some very bad days. Last night he couldn't fall asleep. His back, neck and jaw were ticcing like crazy - for two solid hours! I kept him home from school today and I'm trying a new combo which seems to be helping - I added B1 and B2 - but then again he's preoccupied with playing with the dogs so when he's active like this he doesn't tic as much - such a puzzle. The main reason he's home though is because when he's doing these particular tics they are SO violent and are accompanied by this huge vocal tic like when a weight lifter is lifting and they expel all the air when they pick up the heavy weight. Quite loud and very often - I keep jumping out of my skin each time (I won't be having a second cup of coffee this morning - my nerves are already shot!) As to his teeth - he often does a jaw tic that just kills him but he doesn't do that often thank goodness (makes me cry to see him in such pain that I can't take away). He had his check up and apparently has a cavity and a new tooth is very close to coming in (the roots of the baby tooth are almost totally reabsorbed and you can see the new tooth coming down on the x-ray. The dentist will be filling the cavity on Friday and she suggested pulling the baby to perhaps alleviate the stress on his mouth of the new one having to push through - I don't know if this is what's bothering him right now - but it is something different so it is the only straw I have to grasp. When he gets like this I almost hope he's getting sick because then I KNOW what's going on - no such luck this time. He is complaining of a headache every so often which I mostly attribute to him being hungry. I swear sometimes he's his own worst enemy - he doesn't listen to his body. He'll wait until he's starving before he eats - and not for lack of my offering him food - he just doesn't seem to want to sit down, or take the time. Same with thirst! Not keeping on top of this for him also triggers tics. It has got to the point that even when he's doing super well he'll start to tic when he's hungry, thirsty, hot, or tired (not when he's nervous though which I think a little unusual). Luckily I can tell the difference between those tics and regular tics - they seem to be more rapid and repetitive and disappear once he's eaten, drank, taken his jacket off or gets rest. Here I am babbling on - but as you said in another post, it helps to talk to people who know what it's like. My friends are really supportive (except one, she knows a teenager who takes medication and keeps telling me I should do that for Hoyt). And he has amazing little friends too - who knew him when he didn't tic and honestly don't seem to care that he does now - even when he's at his worst - he's very lucky and I wouldn't dare change schools as a result! One thing interesting - even when his tics are off the charts (like now) he completely STOPS when he plays chess. As a result I had him teach me how to play. I had to write down all the different movement allowances for each player - to boot it's a silly Star Wars chess set so everything is truly alien!. So there we sit- him playing like a champ and me with my pad of paper, very much out of my box (I HATE strategy games) but it gives him so much relief for the half hour or so it takes him to beat me Good luck and have a great day! Giselle

Hi Patty, without a doubt! He always gets worse then is better - it is weird. Our chiro says it's because of the release of toxins and has him drink lots of water. I'm not sure about that although we do drink the water. I think it is their hyper-sensitive systems almost rebooting. Giselle