faith
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Hello Juls and welcome,
I'm so glad things are going well with what you are using for your son. just curious, did you start those supplements all at once just to try on your own? And you feel your son's tics subsided after a few days on those supplements or just when you added the carnitine? I've wanted to try the carnitine, but haven't yet. My son has had a vocal too, but right now it seems to be somewhat diminished so I don't want to do anything different now.
May I ask if your son's tics were mild or if you ever used any meds? Have you consulted any alternative docs or done any testing? I'm so glad you popped in to share that info with us.
P.S. Why do you homeschool? (nosey me!)
Thanks
Faith
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Hi C.P.
100 mg. of B6 is usually the upper limit and that should be okay..I don't want to say what to do, but I would go 50 mg. to start. Just my thought. You could always work up. Wish I could help more but I don't know too much on how it works though, but think its good for depression so must have something to do with seratonin? Are you still adding supps or staying with what you were doing? Are things still stable?
Regards
Faith
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Hi loren,
When you say D-nase is negative, not sure what that means. Like ours was a low number, it stated < 50.
And the ASO was 174, (less than 200 considered in range, not an issue). Whatever number you have may just indicate strep was present in last couple months. I think its normal for it to be elevated a little in school age children, but not too much. The expected range is usually listed on the lab report.
If your doc does not know, than she needs to consult with someone else. She must know someone--I believe an infectious disease doctor would be familiar. Or you'll have to consult with someone in another state via telephone. If she doesn't, then you have to make some calls. If need be, I'll give you the name of the doc that did our test and you could call for advice. How is your child currently doing?
Faith
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Hi all,
I just wanted to shout out a Happy Easter to ya all. I kind of get the impression most of us here pray alot, so I think its okay if I share a little "faith".
This year I paid a little more attention to the Stations of the Cross (The Passion of the Christ). At one of our church services, the priest invited us to all take a stone out of a basket at the alter and keep it as a reminder of the stone that was rolled away from the tomb of Jesus, and how it was to be a reminder that we are all "blocked" with our own stone, and when we can finally roll it away, we will rejoice at the light that we see. And so my prayer is that we all find that in bearing our "crosses", we too, will be able to roll that stone away and rejoice.
This day, I am feeling alot of that. Looking back on today, and much of this past week overall, my son has had a very good week. Today was remarkably well. His vocal is down so much. As he lays beside me watching tv.....quiet....a few small murmers here and there. I pray it stays like this. I hope all the anxieties of school don't come back next week and......no, I'll just take today, and say "thank-you, God".....................
Faith
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Yes, that's a good question too, Lenny.
And it depends on what someone considers severe. I mean, I was very upset at every little thing. My son started eye blink at 3 1/2 but it wasn't constant over next couple years. And looking at the whole picture, he just turned 8 and this school year he had a few things around the same time so, that, to me is not a good thing. Because it becomes really noticeable. He had a vocal last year and this year, so vocal is hard because in a quiet classroom it is noticeable. But if he does it sporadically throughout the day anywhere else, its not. So far I feel second grade has been the worst so far ..... I pray everyday it doesn't get any worse......If I can keep most under control, to a minimum, then that is my prayer.
And also, for those using the natural approach -- please let us know if the symptoms at the worse times are when practicing good health and natural healing or not yet. Does anyone think the younger ones may be able to stave off that pubescent waxing time, BECAUSE of the natural healing we do?
Faith
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I wonder if the amoxycilin didn't work anymore because, you know, they say that you can become resistant to antibiotics if used too much? I know when I was a kid, we used erythromycin all the time for sore throats and then after a while that one never worked for me anymore, had to go to something else. And as an adult was given Biaxin when I had bad bronchitis and while on it got worse and turned into pneumonia--that antibiotic probably didn't work on me. I was sick for a couple months.
I am curious to know if anyone has used azithromycin who is not dealing with the PANDAS issue. I wonder if it would work with tics in general, wouln't that be interesting? I keep thinking back to the time my son used amoxy for a supposed case of strep and the tic subsided within days. (testing showed PANDAS not to be the issue--titers were normal.)
Faith
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C.P.
Okay, that's interesting. Goldenrod is a late august blooming flower, did you know? See I don't know how much weight to give allergies, since he never showed any symptoms (we just tested as part of the DAN doc treatment). Interesting you should say the same thing, and the same time of increased vocal. My son's was quiet from about Feb/March last year through the summer (except for minimal at bedtime) and started again right before school too, (first subtle and then more as time went on). Before I began on this search, I remember the first time I saw him do a facial tic at age 3 1/2, it was early November, I remember distinctly. ........ maybe there is something to this.
Itsme,
Have you had any allergy testing of any type for your child? Hope others will answer too.
Faith
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Hi all,
I have to ask, since most seem to be dealing with springtime allergies -- does anyone have symptoms flair in late summer and fall? That's when I notice my son's vocal start, and he test moderately allergic to ragweed. I understand this is a fall allergen. Does anyone else have that correlation?
Also, when you get treated, i.e. allergy shots, does that erradicate the allergy? or just make it more manageable? We were given a neutralization dose which is in a nasal spray. We have been lax on it lately, but when he was using it everyday in November, I don't think I felt anything was getting better. (In fact, maybe a little better now that not using it presently). Should allergy symptoms, if this is what the ticcing is from, subside when not near the allergen (the ragweed or whatever) or does it stay with you for a while?
Faith
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Hello GINA
On one hand I am feeling sad along with you that your son seems not to be doing well right now, but on the other, it is very uplifting that you describe him as having a high grade point average, having lots of friends and president of student council...yay! That makes me feel so good, that this TS has not impacted him socially. I think that is what many of us are inwardly fearful of, that our children's full potential will be impeded.
You did say his symptoms seemed to be in control for a while, are you still managing it the same as always, and could you elaborate more on what you have done in the past? Did you only recently see a natural doctor, and I am very interested to know what type of metal detox was used, and how long that took, since you mention it is "completed". My 7 yr old diid a urine challenge test with DMSA and showed mercury and lead also.
Sorry to ask so many questions when you are not feeling too "up", but there are many of us here facing the same challenges and it is good to bounce things off each other to see what seems to work for some....or not.
Also, I noticed on one of your previous posts you were wondering about sharing a tape on TS with the school--would you mind if I asked how you handled that aspect since I am currently having to start discussing my son's issues and concerns with his teacher and school psychologist. Did you do this early on, I mean has he had any educational plan in place for several years now.? I am wondering if it is better for his peers to be aware of his issues at an early age, or to not say anything until necessary. Thanks in advance for your response, and hopefully some of us here will have some input on your protocol, since it seems its been a while and maybe there are newer things you have not tried yet. Things have gotten better in the past, so maybe they will now too. A saying I've heard that I like is "the biggest prophet of the future......is the past".
Regards
Faith
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thank you, but copy and paste from where? Where do I copy it from, my favorites center? it doesn't seem to get onto my posting screen. Could you give an example?
thanks much
Faith
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okay, I am a computer reject.
Could someone please give me a quick lesson on how to post a link in my post. I am using the side panel where it says post a link topic, but can't figure out how to get it there. Do I have to type in the www. etc. title myself, or can you somehow cut and paste?
I'll keep practicing meanwhile....
thanks
Faith
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hello aj,
Even with TS in the family, I sort of think its possible to just have some transient tics or twitches here and there. I wanted to mention something that someone told me. When I was at the pediatrition once when my 7 year old was having some tics and I was at the beginning of seeking answers and treatment, the assistant there told me that her daughter had a few tics when she was in first grade. She mentioned that mouth open that you described and she also jutted her arm out to the side and a small vocal. She said it lasted about six months, and her daughter was now about 12 and did not have any tics after that time.
So, there is hope that it is possible to have childhood tic that sails away and never comes back.
That is what I always wonder, if we are getting the children healthy at an early age, is it possible that it will present itself milder than the previoous generation? So (here I go, guys) might I ask if your brother always had the same tics, and what treatment was available in his childhood days (if any)?
As you read and become more informed, you will adapt the solutions you feel most comfortable with wether it be dietary change, nutrition, seeking allergy connections, etc. Most of all, try to have hope.............
Faith
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Hi itsme,
You mentioned that you have TS since a child? If you don't mind, may I ask what your symptoms were/are? Were they always mild or no? Just like to put together a picture, and I too, am curious if there are clues as to how this will run its course.
I am the mom of an 8 yr. old boy with tics, but just to mention, since your post reminded me of something about myself as a kid (I don't believe I fall in category of TS, but think I had a few twitches as an adolescent. And I do remember doing exactly what you are describing about the breath thing. I think I was about 10 or so, and I felt like I couldn't take a big enough breath to fill my lungs and feel satisfied. I distinctly remember going to the doctor about it, and well, in those days they didn't make too much of anything. But it did go away eventually. I can't say if that was a tic for me or not, but maybe, we just didn't know about that stuff then.
I don't know if I am so good on advice, but I would of course go through the route of seeking medical help and advice to make sure nothing is definitively wrong concerning his health, and then keep reading and you will find things to do one by one.
Good luck and welcome
Faith
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Hi fitforit,
sorry things are not going well right now. If you need info on what type of doctors to go to please let us know. I have sent you a personal message, you must log in to get it.
Faith
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Petb,
How long on the amoxy? Are you giving correct dosage and consistently? Just curious, I feel tics should get better, not worse on antibiotic. NOW, when the course of antibiotic is OVER, maybe that's when tics would creep back and get worse. Just a quick recap, (and we don't have the strep/Pandas connection--had the blood tests tho) but one time my son started that eye roll/looking up tic last May one weekend and acted way more hyper than would be considered usual at a backyard birthday party, I couldn't control him. On way home he said his throat hurt and when I brought him to the doctor next day (really I went because I was freaked by the eye tic) and he said he had strep, (just by examining the throat, no test) and gave amoxycilin. Within two days that tic stopped. Thats when I did the research, but apparently, when tested several weeks later, he did not have elevated titers. In fact we did it six months later per our DAN doctor and it was the same. BUT I still can't believe that was a coincidence, most tics do not just last a few days. So, I somehow think it had something to do with it, but, who knows. ........so it just kind of correlates with what colleenrn was stating about trying antibiotics when the child was sick just to see and it did seem to help with her. I don't know.....not saying antibiotics are the way to go, cause there are problems with that too, just relating my experience.
You mentioned that the carnitine had helped with the vocal tics before--is he still on that?
Faith
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Kim,
Okay, that's interesting. This is just the kind of thing I am very interested in. You say you havn't been giving him his usual supps for--how many days now? And is this unusual for you to see this type of tics? I mean, if you definitely see some differences related to him getting his usual stuff, and now things a little awry since having to cut some due to the azith, then that tells something. My feeling is the antibiotic itself is not responsible for that behavior--I tend to lean more to not getting his usual supps that seem to keep him in check. That gives me more hope and confidence that nutritional balance is essential.
Try to get back on track and see. Maybe give all the supps as soon as he gets home from school and the azith am and pm (whatever the time schedule is). Or if you have to, as soon as you wake him up, maybe even an hour earlier, just to give one or the other, so enough time will pass before he walks out the door for school and you could give a supplement or two. How many days on azith? I guess you don't feel that has any beneficial effect on at least the tic department?
Faith
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We are all having a fun day, aren't we?!
Loren, I don't know how far you are from a big city, but if you are somewhere near New York City or Philli, I think you can pick any doctor you want to go to. I would look in the yellow pages for an Infectious Disease doctor and call to ask if they know what you are referring to. My doctor gave us the name of one and we just went there. I think being in a major city helps, so just try to find one on your own. Your regular docs may not be up on this stuff and will probably give you the run around. I think you mentioned your insurance not being too good, but you could probably save running around by doing some phone calling around first. Good Luck.
Faith
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Thanks girls for your advice. And for your insight on the "boy" behavior. I tend to agree since I talk to so many moms and we all moan and groan about the same type things. I distinctly got the impression that psychologist has been in the class to observe other (probably boys) since she kind of hinted at it. A number of them have been to my home to play and they are all the same; we moms have lots to talk about! I know the teacher is always phoning someone or another. I had to laugh about that spelling zinger, Kim, yea my guy gets a kick out of watching my temperature rise too!
Okay, I guess I'll have a better picture of this after I meet with them. This week the second graders are taking these terranova tests to see how they compare with the rest of the state or nation? I'm in agony wondering if his noise is up or down during the quiet time.
Faith
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Thanks for that, C.P.,
sorry you had to go through that--it is the hard part, not knowing what exactly is happening when they are at school, wondering how our "babies" are doing. Did you feel the school encouraged medication? Like, did you feel they exagerated his noises to make you think it was worse than it really was? I hope the teacher doesn't do that just so we could get on with this and go by the book on it. You know? I think that's what I'm fretting over, although the school psychologist sounded very respectful and did say that it was not up to them on how to treat (meaning medical treatment) a child, but are concerned about how to make it better for him in terms of education, and that's cool with me. I just hope its all confidential, I don't have any problem with the faculty knowing what is going on, but I don't want to put it out there for the students unless it became necessary for his good. Our meeting will probably be that week too. By the way, did you feel he had any adverse side effects from the resp? If not, and it seems to help him, you could try to wean later when school is out........ Off to my prayer group, and will be thinking of all of us here.
Loren, how is it going? Please keep us posted.
Faith
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Loren,
I am just a regular Nancy Drew, eh? Thanks for that background.
yes, the strep test is called ANTI DNASE B TITER and ANTI-STREPTOLYSIN O (Dnase and ASO titers).
They are done with a blood draw. The other will be a throat culture that is not a quick test, but must be cultured for 24 hrs. However, I'm not sure any regular pediatrition will just know what that is or if they even will do it. My doctor referred us to an Infectious Disease doctor, where they are more familiar with the term PANDAS. (I'm assuming you have done some reading on this, and maybe you could copy some pages for him/her to look at so he knows there is a such thing). Now, we had this done, but it did not seem to be the case for my child, so I can't give you any recs on how to treat--the others will help you if that is the case.
For now, I would definitely start him on some magnesium and many here are using the Kids or Natural Calm. I do sometimes, and something similar called Super Mag. It's a powder disolved in small amount of hot water. Anything else, I think you should start slow on that, do the research like your friend, she probably knows alot of what type things are good. The others have given good advice so far.
I totally relate to the way you describe your son's tics. It is only now that he has this vocal squeak that it has come to the attention of the teacher. Before this, no one (except grandma) would notice them to be a repetitive behavior. The first time I informed the teacher about his eye blinking in November, she called me back and told me she hadn't noticed anything. Now she's all over me. And that is why I'm not keen on giving him this formal label in his file in order to get special services. If it weren't for this vocal, I'm sure it wouldn't be an issue.
You mention you're father-in law--was he involved in that because there is TS in the family? Also, (I'm a nosey one) does your friend's daughter have noticeable tics and is it an issue in school--I ask since that is my problem to deal with right now.
Thanks and good luck
Faith
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CP, my sons D -lactate on metametrix urine was 0.9 and the number for D-Arabinitol (yeast/fungal) was 51. Do you have your son's #'s handy?
Also, did you see this from the link that Carolyn posted on the other thread?
D-Lactate elevation is an exception to the rule for probiotic potential just described. Lactobacillus acidophilus is widely
considered a favorable bacterium to colonize the human gut. It has beneficial effects in many individuals. However, if you have
any tendency for carbohydrate malabsorption, even favorable organisms (e.g., L. acidophilus) can grow so fast that your blood
becomes highly acidic due to the formation of D-Lactate. This condition is revealed by high D-Lactate in urine. Discontinuing
all probiotic intervention, while considering antibiotic therapy, may be warranted when D-Lactate is high. Special forms of
probiotic organisms that do not form D-Lactate may be used to avoid neurotoric effects of this lactic acid isomer
This also gives some good info
CDSA Genova
http://64.233.167.104/search?q=cache:ncbPS...;cd=2&gl=us
Good overview
Gut Flora
Hmmmm,
Kim, and others,
i am no brain surgeon, but i'll try to get across what I see here. We havn't had any of this test you talk about, and have no known issues of yeast, however his Alcat food sensitivity test did show a mild reaction to candida albicans, and so the rec was avoid brewers years, beet and cane sugar and mushrooms........And I just give the probiotic on my own, the naturo said it was okay, but did not give that as her protocol just yet.
Now..... when I read that part above about the lactic acid stuff, its just reminding me of something on my son's regualr blood chem workup. He showed his ANION GAP a little elevated and that seems to be what the naturo is working on. Interestingly, it has something to do with his blood/body being too acidic (I think not good) and she gave us this alkaline water he drinks with something called Pleo drops (one is lactic acid, one is citric acid and two others that I add to the water). Its supposed to balance his PH I think and bring that anion gap down. He also was given those B vits I spoke of, because, well here is quote from something I read:
common causes of an elevated Anion Gap include: (I'll just quote this one-it's from dr. kaslow's site)
- Lactic acid overproduction due to respiratory failure (the tissue has inadequate oxygen), genetic defects of enzymes of carbohydrate metabolism, nutritional deficiencies that impair the bodies ability to metabolize lactic acid (B vitamins, especially vitamin B1).
If anyone has their child's blood workup handy and the ANION GAP is mentioned, I'd be interested to know if it was out of range. I don't know what I'm getting at, but it could all be tied in---the yeast issues, this lactic acid and carbohydrate not being metabolized. I keep reading it all, but can't seem to put it all together. I knew I shouldn't have majored in underwater basketweaving!
Yeeks, if this means anything to anyone, well who knows...
Faith
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C.P.
Yes, you can get Klaire probiotics directly from Klaire yourself. You have to order over the telephone, not the internet though.
They ask for your doctor's name, and I just gave them Dr. McCandless as that's what she said to do to get the discount.
Shipping is free with Klaire if your purchase is over $75. They charge a $7.50 fee for the handling of probiotics. So it's best to
order multiple bottles at once.
Faith-you are so lucky to have Klaire probiotics right in your health food store. We have 3 small local health food stores in my city and none of them carry Klaire probiotics. Either does Whole Foods. They carry many other probiotic brands though.
Carolyn
Yup, that's us New Yawkers, we have a pizza place, chinese take-out, and a Home-Depot on every commercial block! ............ so Klaire Labs products in our local refridgerated section .........piece of cake!!
Faith
P.S. thanks for that suggestion re Sheila Rogers, I think I will try that. Will let you know.
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Kim,
just wondering if your son's (the one who was prescribed the antibiotic) tics are up at all? Sorry, my mind is chockful so forgive my questions. If you decide to give the antibiotic, please let us know if it eradicates any of his usual tics. Did he ever take antibiotics before, I mean in last few years, and if so, any effect one way or another? I'm pretty sure yours did not have any strep connections? but still, it would be interesting if it did have some effect.
thanks
Faith
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Hi all, I just wanted to add to this because the school psychologist gave me a call at home today (we havn't had any meeting yet) to discuss if we could meet. Oh I want my mommy.
So, she seemed very nice (and young!) and thought we should meet to discuss my son's issues that the teacher was concerned about. The tics are one concern, but she is also concerned of the other issues (see my post above--it basically summed up what my son's work habits are). So I think they want to figure out if there is a way we can help him, in terms of possibly a IEP plan? I am not very familiar with these type things. I rambled away on the phone about what I was doing in terms of treating him and she was okay with that and explained that they were not there to tell me how to treat, just to figure out how we can make it better for him in school in terms of his educational needs. (She did say this would be an informal meeting between me, her and the teacher) Also, when I questioned, she did say that she was in the classroom just to informally observe at the request of the teacher, and has been there several other times for other kids too.
BUT...she did say that I would have to have a formal diagnosis in order to put something like that in place--I told her I had been to doctors about the tics, but "tourettes" was not exactly diagnosed--just that he did have tics. So, could anyone please guide me on how to go about this. I really didn't want to have to do that, but if it becomes necessary in order to deal with other issues he has regarding his learning, well, what did you all do? The biggest thing is that he's always last to finish work, he doesn't seem to focus on paying close attention--stops to do "other" things first, chats alot. (One time I peeked in the window of the lunchroom last year and he was sitting there happily chatting away to his cronies while his lunch sat unopened on the table--then when the monitor tells them to start clearing their tables, he's shoving it in his mouth and is the last guy sitting there). That is him. Consistently.
Does this sound like their child at all? Is this characteristic of TS? I'm wondering that they may think this is so. He's not hyperactive, and I don't believe he acts impulsive or has the criteria of ADHD. Can anyone who has a IEP plan or that 504 plan in place for their child, please tell me how that came about. Kim or Patty or C.P. or anyone else, does the school have that type of plan in place for you, and is the school aware of your child's issues? Cheri, I know you have been through this. I know you have all given me this info in the past, but am not sure if they were formally diagnosed and this is in their file. Is this always confidential? Carolyn, did you ever have any problems with attention when you were a child?
In talking to her, she was very polite and respectful, but I just want to make sure I'm not gonna just agree to what they want to do for him and rush into anything without knowing what I am doing. Like, what do I tell me son? He knows he has tics, but how is he going to feel about having a plan? She explained it that having these extra considerations, i.e. smaller setting, more time to do testing, may make him feel more at ease. Oh, I'm going on and on, I don't even know if I'm making any sense. But I think you all get the pic. Please help me with these questions. And if anyone has maybe a simple outline of things I should talk about or present to them, that would be great.
Thanks a bunch
Faith
5 year old with sudden Tics
in Tourette Syndrome and Tics
Posted
Hello kkver and welcome,
Sorry, I just want to understand better, did you say your son has only had this for two or three weeks now? Did you have that testing about the strep done because of the tics, and when you said he got better after the antibiotic, did you mean the strep throat was better or the tics? Were the different tics all at once or here and there? Did you mean you already saw a neurologist before this? Sorry for so many questions, I wasn't sure what you meant.
Hope all goes well tomorrw and please check back in.
Faith