Vanessa2
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Posts posted by Vanessa2
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Yep....frustrating....the exact same thing happened to me.......the lab ran the double stranded DNA test instead of the AntiDNAase B the first time we had labs done after onset. If you had the blood drawn recently...call and see if they still have the blood and can run the correct test off it (they usually hold for a week or two)...that is what I did. It will save you a blood draw...those are never easy.
yes, thank you. Actually on hold now with my fingers crossed hoping they still have the sample.
P.Mom, they no longer have the blood. I understand that PANDA's is complicated for various reasons. Seeing that his ASO Titre was high is it necessary to get the AntiDNAase B done as well?
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Yep....frustrating....the exact same thing happened to me.......the lab ran the double stranded DNA test instead of the AntiDNAase B the first time we had labs done after onset. If you had the blood drawn recently...call and see if they still have the blood and can run the correct test off it (they usually hold for a week or two)...that is what I did. It will save you a blood draw...those are never easy.
yes, thank you. Actually on hold now with my fingers crossed hoping they still have the sample.
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So, long story short. My 8 yr old son started ticcing when he was 5 1\2. I usually read the tourettes board and i apologize if the answer to my question is somewhere in previous posts. Does anyone have any idea how to read this and or what it means? For his blood Anti-ds DNA 37.2 (up to 200.0) IU/ml and his ASO titre 242 HI (should be < 65) IU/ml. Any help would be greatly appreciated.
thank you
Vanessa
Vanessa.....
As you probably read..that ASO is high and indicative of a strep infection (diagnosed or not)...but, what I reaaly wanted to tell you is that the other test you mentioned is called an Anti-double stranded DNA test....it is NOT the test you should have done to test for strep antibodies....that test is called the AntiDNAase B titer.....they are easily confused...make sure you get the correct one.
Yes! i noticed that too and i was thinking it didn't look right. Thats so frustrating I know it was written correctly in the req' so the lab totally made a mistake.
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So, long story short. My 8 yr old son started ticcing when he was 5 1\2. I usually read the tourettes board and i apologize if the answer to my question is somewhere in previous posts. Does anyone have any idea how to read this and or what it means? For his blood Anti-ds DNA 37.2 (up to 200.0) IU/ml and his ASO titre 242 HI (should be < 65) IU/ml. Any help would be greatly appreciated.
thank you
Vanessa
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Hi Mylittleangle
I PM'd you a few days wondering if you could send me the info for the TMJ specialist in our city. Stms i think my PM's dont go through.
thx!
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I too have been curious about stem cells. I haven't come across stem cells for tics though.
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Vanessa,
"miss clarification" here again, lol...sorry, but did you mean the craniodondist was world-renowned or that he said Dr. Stack was world renowned for HIS approach to TMJ treatment and that the dentist has witnessed some of his work?
if so, then I guess you are saying that Dr. Stack has a reputation amongst the dental profession?
thanks
Faith
Yes, Dr. Stack was world renowned...
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My opinion is that the vaccine is potentially very dangerous and will not be adequately tested. I fear they will try to make it mandatory. I disagree with giving it in the schools. I want the right to self quaranteen my family, but the more I read, the more afraid I am that I will not have that option. I will not be getting it or letting my children get it.
So far, everyone in my community that has had H1N1, has had a mild case and recovered quickly. One of my kids has already been exposed to it- not gotten it yet. I think I would rather get it now, then we will hopefully be immune for the fall and winter.
IF you get the swine flu or any flu, I HIGHLY recommend taking oscilloccocinum. It is FDA approved and works similiarly to Tamiflu, WITHOUT the side effects of Tamiflu. I have taken it while pregnant, have given it to a one year old-12 year old. It cuts the viral load in half, and after the first dose, you start feeling better. It has worked wonders for us through many flu seasons.
Colleen
Is oscilloccocinum a homeopathic remedy?
thx
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I had a friend of mine pass the case study and a video on to her dentist. I believe he is a craniodontist...in Canada. He said he has known Dr. Stacks for many years and has had some course with him. He is world renowned about his approaches to TMJ and overall health has witnessed many videos about the improvement his patients have had.
I also spoke breifly to the neuroscientist. He said the paper did grab his attention and that the neurophysiology behind it is accurate.
I am still waiting to hear back from neuroanatomy prof from the chiropractic college.
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mylittleangel
i am sorry to hear this. i dont know if this helps and i dont know how severe your sons tics are but what we do sometimes in between all of the different alternatives we try, we take a Break... In the end i just want my boy to be a little boy and not always have the focus on his tics. that might mean not saying "STOP, you cant eat THAT!". It also means for me taking a break from searching and looking for answers. That way we can focus on family time and not just tics. Again, i am sorry about that. I dont think this means to give up hope on this theory but unfortunately it seems as though it is in the early stages of development.
hugs
V
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you might consider supplementing Ca, Mg, Vit D supplement. A side note to consider, i was off dairy and using all the box alternatives..almond, rice even a quinoa\rice mix. What I realized is unless it is a cardbord milk container the box containers that do not have to be refrigerated are lined with plastic. Not good if you are trying to avoid BPA's... i went back to milk, i guess its a trade off.
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mylittleangel
before considering having the device permantely inserted. Your son is still young in terms of his jaw growth according to this theory. Maybe you could ask Dr. Sims at your next visit what he thinks about giving your son time to mature a bit so he is more aware and can consciously bite down correctly.
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Faith
i think you are awsome for considering all those questions. I have to agree that they are questions that are important and most certainly the answers are unknown, most likely because there is no research. What would happen if we "messed" around with the jaw?
I also wanted to let those interested know that the pilot study article is going to be reviewed by an anatomy and neuroanatomy prof at the chiropractic college in my city. He is a chiropractor,BSc, Msc and a Phd. He taught me and he is outstanding in his fields. He said he would get back some time next week. As well the paper is in the hands of one of my collegues and also a neuroscientist Phd.
hang in there and i will try to do the same!
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ok...i have decided to send the Pilot Study to as many professionals i have at my disposal. i was initially going to wait before posting them until i could compile everyones opinions however, it seems as though decisions on whether to book appointments are being made quickly... Below is the opinion from a periodontist who is also a full time prof at the university (Dentistry) where i live. Needless to say, i think i cried all day last week after reading his take on the paper.
i am sorry if it upsets anyone but i think its important for us to have a much knowledge as possible. if i recieve any more opinions i will post them. i am currently waiting for two more...
Here it is....
First a disclaimer: I have not followed the TMJ/TMD literature closely for some years now. I am not a neurophysiologist or neurologist. I have not researched the most recent work on TS, in particular those that address etiology and treatment outcomes. I an unsure how many Randomized Clinical Trials there are but those should be carefully reviewed. My short note reflects my impression of the single article you had given me (Sims, A. Tourette’s Syndrome: A pilot study for the discontinuance of a movement disorder. J. Cranio.11-18,27(1), 2009.
If I were to do a comprehensive review I would start with the Cochrane Collaboration (http://search.cochrane.org/search?q=tourette&restrict=review_abstracts&scso_cochrane_or)
A quick look at a paper on Nutrition and TS has been withdrawn - http://www.cochrane.org/reviews/en/info_74...1509502848.html I wonder why?
At any rate the paper is a very poorly reported and documented case report. Although the inclusion criteria for the six patients seem well defined there is virtually no reporting of the results and certainly no analysis at all. There are no clearly defined outcome measures. My summer students could not get away with this. The hypothesis for the NCVD to work is based on speculation of neurophysiology that may result (if cross talk really happens) in elimination of noxious stimuli into the CNS via the auriculotemporal nerve and if used in developing children would redirect the child’s growth pattern. These are two huge presumptions that theoretically could work but one wonders whether there is any evidence for them (non presented in the paper). The only good thing about the NCVD is that it is unlikely to do harm because it is non-invasive. As many pseudo-scientific notions aired by poorly trained pretend-scientists this one plays into creating false expectations for patients and their families offering non-invasive method vs unpleasant, complicated and very invasive once – this in itself, in my view is a very “invasive” act because it plays on vulnerable people. Of course, some of these ideas may work and may be proven in time to have good science behind them. After all great ideas come from simple observations (the lowest level of evidence in science). The difference is that real science then sets up hypotheses and test them by well-defined and proven scientific methods. What this paper proposes does not pass the test by which trained health care professionals work: recommending unsubstantiated and unproven treatment equals malpractice, it is unethical and a flagrant violation of the Hippocratic oath. This stands in contrast with non-trained lay people who could recommend treatments that are non-invasive and are unlikely to harm. But than again would you take advise from the unwise?
I wish I could say that this is it for little J . But I cannot -again within the limitations of my review outlined in the disclosure.
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we have bamboo through out our house...environmentally friendly. Not sure about the process of putting it down, i think its just a nail gun. it is also in our kitchen and has held up nicely. on the same lines we are thinking about doing our counter tops and we want something without toxins etc...i have read certain types of granite emit radio activity..
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There may not be muscles directly on top of the head but there are musccles attached to the forehead, temples, sides of the head and base of the skull. As well as connective tissue overlaying the skull. Muscles have charactisitc referral patterns so if there is spasm or a trigger point in one muscle it is possible to feel it else where. So perhaps the feeling of spasm on top or to the side of the head is possible. You could try a scalp massage...who doesn't love that!
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Just wondering if anyone else has noticed that their child does not get dizzy. For example, when my son spins around in circles like most kids like to do to entertain themselves, it doesn't affect him, he doesn't feel dizzy. My husband thought there may be a connection he says when they travelled by airplane last year for a short vacation he virtually didn't tic...so he's thinking air pressure in the ear and also how the ear is affected while in a car. He tics more in the car. I don't think the ear is affected much by driving. I have only found some info on inner ear problems and the connection to not experiencing dizziness and ear infections. Up until age 51\2 our son suffered from ear infections also. Maybe, we are grasping here!
As an update, we are waiting for our results from immunolabs...
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i have wondered about the c-section issue and possible connection to tics. My son was a c-section and thankfully my daughter (2nd baby )was not, she is 3 years old and so far so good.
I waited until my son was 18 months before any vaccines. He had 3 out of i think a total of 4 or 5 Penta, which is the standard first year shots here. He did not have the MMR or any further shots. My daughter has only had 1 penta at around 22 months and only because i was nervous about travelling out of the country. I always struggled with this decision, i don't know if there is a clear correlation between vaccines and tics but if I were to have any more children i would not vaccinate. Yes, I would still worry about illness related to common childhood disease but I too was vaccinated and as a child still had the measle. All we can do is take it one cold\virus at a time...
I would be interested in hearing about others birth experiences i.e. c-section vs. natural childbirth. My son was a scheduled c-section as he was a frank breech, we did everything possible to try and turn him but he wouldn't budge. We had planned a home birth so this was definitly way more intervention than we ever expected.
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Thank you all for your responses. I have read about the salicylates, gluten intolerance and night shades...probably most of the issues we have all become aware of through this fourm and researching. I think I was feeling somewhat defeated as we saw no real changes. Before I decided to get carried away with something like eliminating gluten, I decided to take a step back and get some more tests done that are not conventionally available. Soooo, I spoke to immunolabs today and am looking forward to making use of there IgG and IgE tests and will take it from there. I suppose the only downside is that for the purpose of testing we have to allow the wheat and dairy etc...
Here is an interesting site, it is based on canines and the GFCF diet...he takes about viruses being the cause of various illnesses\ autoimmune and otherwise. http://dogtorj.tripod.com/id107.html
thanks again and any info is always welcome!
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HI Chemar
Thanks so much for your reply, you and I actually corresponding last year via email when I was feeling so much despair.
We are really quite diligent about keeping the chemical\artifical foods away. So they may be a possible trigger but I don't think they are now. We have used epsom salt baths and a for a short while kids calm but not consistently. Actually, both the detox factor and the ZMA contain magnesium. Our first go at my sister-in-laws TCM clinic had him in tears as soon as the first adn only needle went in. So we have not re-visited acupuncture again. I will often adjust his upper cervicals as I find there is a lot going on between the occiput and C1-C2. I often wonder if what I find in his neck is due to all his tics that seem to come from the nose and throat.
In terms of environmental triggers, he seems to wake up with a stuffy nose (one of his tics is snorting). Maybe there is a dust allergy.
Yes, I am totally sticking with this and only wish I had done all the tests besides the standard blood\urine...so now I will be sending out to immunolabs and such.
thanks again!
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I have never posted but I have been reading ALL your posts for the last year...which is when my 6 year old son started his tics. I feel like I am back at the beginning again...feeling all the same emotions that comes with this all over again! Yuck
For the most part of the beginning I was looking for information. Last May we went to a holstic nutritionist. For the past 4-5 months we have been wheat, dairy, soy and corn free. We have always been aware of processed food and food dyes\additives so that was never an issue and we eat organic. My son completed an 8 week program of dietary supplements in what I would say were at the mega detox dosages. He was on a detox factor, ZMA, Quercetin, homeopathic drops, probiotics and psyllium (i may be forgetting some). At times just taking the supplements alone caused him a great deal of stress.
So needless to say we are at the one year mark for what I feel was the beginning of his tics and they are no better. I can't say we have ever really seen an improvement in his tics. I would say they have changed in there manifestations. However, family has mentioned at times that they don't notice them but of course I am like a hawk and know what to look for. Also, I have not been able to find a specific connection to any particular food. However, he has consistently had symptoms while eating as well as bedtime stories and in the car at times.
We had a blood and urine test almost one year ago which found low Vit D, mercury 10.0 nmo\L (0.0-18.0), high Urea and AST, Albumin 51 G\L (35-50), IgE high 132 (norm less than 75 KU\L), lead o.10umol\L.
So...I am scambling (got a cancellation appointment for tomorrow) to get together another list of tests to have my alternative MD do for us as well as repeat what was already done. We did not test for strep so that was at the top of my list (at one time he seemed to have to pee a lot...but that seems to have subsided), would that be to late? Soooo sorry for the time crunch but any information would be great!
Thank you.
"miss clarification" here again, lol...
How parents cope?
in Tourette Syndrome and Tics
Posted
I just read another post which mentioned dealing or not not dealing well with their child's tic. I admit, I don't believe I deal very well and wish I could find a more positive outlook. So, if anyone is interested in posting their thoughts positive or not... Maybe it would give some of us struggling parents a different perspective.
thx