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Hi all.

 

I was just hoping for some feedback.

 

My 7 yo son has had a variety of motor tics this past year or so. A lot of facial and arm tics, which were very noticable and frequent. We've tried a lot of the supplements, and they seem to help.

 

Right now, however, he's ticcing a lot, but it's all abdominal tics so no one can see them unless he's not wearing a shirt. And, he seems completely unaware/unconcerned about them. When I notice them, I figure it must be painful or bothersome, because sometimes it's pretty frequent (multiple times per minute), but he truly seems unaware of them. Can he really not be noticing them?

 

Any thoughts, since he seems unconcerned, and they are not an issue socially, since no one can see them? It's been about 3-4 weeks of this particular tic now.

 

I am still seeking ways to reduce/eliminate ANY tics, but I've gotten so tired of being constantly vigilant. Is this a good time to just sort of relax the vigilance?

 

Thanks for any insight.

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ifran,

 

As for me, i started to relax more when my son's symptom is under control and that i have a better handle on it. We have been at this for 21/2 years now and have figured out some of his triggers and know how to treat it.

 

But really, i still stay vigliance about his diet and allergy issues because i want his immune system to heal and out grow this.

 

Pat

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Hello,

 

I understand exactly what you are saying. I remember being so aware of every tic my son did and it was so troubling to me. This is what drove me to find answers for him.

 

I now can say, since I know what is generating his tics, when I see him tic I am completely at peace about it. The uncomfortableness for me, prior to understanding what was going on, was from the fear of not knowing what to do for him.

 

I have already posted this several times this weeks on the board, but just in case you have not read it, this is what we found out greatly helped my son. I hope it might help your child.

 

We found out that my son is highly sensitive to MSG, Yellow Dye number 5 and 6, Red 40, and High Fructose Corn Syrup. The problem with MSG is it is under so many different names. Here is a posting I did regarding the MSG problem and all of its various names (yes there is MSG in certain hot dogs. Usually it is listed as a hydrolyzed ingredient). http://www.latitudes.org/forums/index.php?...aded&start= . You will see this in the post but school hot lunches are a source of a lot of MSG.

 

I created a list of foods on another posting that I found my son could eat. Here is the list http://www.latitudes.org/forums/index.php?...;hl=trader+joes .

 

Here is a link regarding my research as to what is actually going on within my son's body regarding why he cannot process certain foods well http://www.latitudes.org/forums/index.php?...mp;hl=sulfation .

 

Here is a link with what has so greatly helped my son regarding N-Acetyl-L-Cysteine and the other is straight potassium bicarbonate (I believe you can only get the potassium bicarbonate through a Naturopathic Doctor. Although I think Faith posted that Alka Selzter Gold has it in it). Anyhow here are the links .

 

Here is a link regarding my theory as to what is actually going on within his body and why he is not processing certain foods correctly .

 

After you have read the above posts you will see my son is on many different products. By no means could I ever say that these two supplements alone are doing the trick but they have given him GREAT improvement. He is also taking Bonnie's Grimaldi's TS-Plus which has magnesium taurate and high B vitamins. He is also on some others but they are listed in the above postings.

 

The other thing to consider is candida. This is an overgrowth of yeast in the intestinal system. This seems to be a pretty common problem for someone with tics. So you might want to do a search on the forum about candida because there have been many postings.

 

I am curious if you now what brand of hot dogs you feed you daughter. To me it seems pretty likely that she could be very sensitive to MSG like my son.

 

I should also say when he does get an "overdose" of artificial, MSG, or High Fructose Corn Syrup it takes about a week to clear out of his system. But I have found to get it out of his system faster to give him epsom salts baths (2 cups in a nice full tub of water). You can even do this twice a day. Also I give him an extra boost of B6. He is 7 years old and about 59 pounds. I give him up to 100 mg's on days when his tics start to flare. It helps to get his system back into balance. I would not do the extra B6 every day, but I usually do it about once every week to two weeks). My naturopathic doctor told me to do this for him.

 

I also have to say that when Daniel would get something in him that bothered him I would start seeing symptoms within about a hour to two hours. All of a sudden tics would increase. Although stress causes tics too and so does tiredness.

 

I hope this helps. Just hang in there. I know from my own experience it is very frightening now knowing what to do for your child especially when they think mom and dad should have all the answers already. But there are answers. There is something triggering this and it is just a matter of finding out what it is. What greatly helped me understand what was going on with Daniel was a lot of research on this forum, doing daily food journals to track what he was eating and how bad his tics were that day, and most importantly prayer!

 

 

God Bless,

 

Carolyn

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Carolyn,

thanks for continuing to post such good information (you are so thorough with your links!). Your info has helped me so much. I wish I could be as relaxed as you though.

 

So, are you saying that you feel you have a handle on what makes him tic, and sometimes he DOES still have flairs of tics, but when they surface, you are able to get them back under control within a few days or so by sticking with your protocol? And things DO settle quickly?

 

Since our last waxing this past April/May, I have added the NAC and then Gaba, and B6. I am never 100% sure about anything wether it be the triggers or the supplements or the diet, but I continue to do what I believe helps and is necessary. Having said that, things have settled during the summer considerably to a point where I should be at peace, but now that school is here I am still walking on eggshells. Everytime he walks thru the door, I hold my breath and listen, scared of something starting again. And if I do hear a vocal sound, I am petrified that it will all start up again, or I am wondering how it is going in the quiet of the classroom. He did have a flair a couple weeks ago where he vocalized for a couple days alot, and I was in a real state. I did look at what he could have consumed too much of and promptly removed it along with doubling some of the supps for a few days (and oh yes, lots of prayer too). I did seem to get him back on track, but why oh why can I not have more confidence in this? By the way, I have not had to be absolutely diligent with corn in that he is consuming regular bread all summer and seems to be okay for it, but I do continue to watch the high fructose corn syrup. I think the fruit (salicylates) and dairy seem to be his problem areas, so I keep them out. Just wish I could be more positive about what seems to be working

 

Faith

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It wouldn't hurt anything to check for strep (throat cultures, titers).

 

Re possible PANDAS...For starters, check out a couple of recent posts started by CSP "Dx Tourettes now has + strep, what should I expect" and "Wow! A New Child After Antibiotics".

 

Even if your child isn't techincally PANDAS, strep can definitely be one of many triggers. Any strep in other household members? The strep infection can be asymptomatic eg. no sore throat or even fever....some moms report the only sign is increased tics (or OCD...does you son have any other mood/behavior changes?).

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Just thought I would mention on this thread all tests came back neg. Strep titers and lyme.

 

The vocals did get better first day after amox. And the violent head jerk is gone, however he still has vocals, and I would say his case is not PANDAS. I guess He just waxed because of the strep. And what about the red dye in this stuff, and the bubble gum flavor. I'll be praying he wanes even more once off this stuff.

 

CP

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We had to use the amox, or pen vk pills because the red dyes could not be tolerated. My son stopped the repeat finger cracking but still has vocal squeals throughout the day. I am thinking they may be TS as a result of the basal ganglia repeat exposure to the PANDAS strep reaction. Isn't it strange at how many of our kids are neg for strep but get the behaviors just from being around strep? Like you said the behaviors must wax from the strep. Did your sons tics come out initially during a case of strep? Ours did come on overnight with strep high fevers, emotional, compulsions and chorea finger movements and blinking and hyper. They lasted about two months and then improved until the next strep infection. His titers were elevated in the beginning but Dr's did not do a good job of following them. He had a very saw toothed episodic reaction to strep over the course of four years. Then exploded again after kindergarten shots. I just wish there was a clear cut way to cure this immune issue. The wait and see approach his Dr's used caused the damage I believe we see today. Now he is never completely better.

 

Michele

Just thought I would mention on this thread all tests came back neg. Strep titers and lyme.

 

The vocals did get better first day after amox. And the violent head jerk is gone, however he still has vocals, and I would say his case is not PANDAS. I guess He just waxed because of the strep. And what about the red dye in this stuff, and the bubble gum flavor. I'll be praying he wanes even more once off this stuff.

 

CP

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michele,

 

This is so hard, my son has never came up + for strep until last week. I find it hard to believe he has never had strep before. I wonder how long he has had some kind of untreated strep. That make me sick to think about, because I don't know how much damage has been done.

 

The biggest help the amox has done is, he is much more nice to us all. He does has not said "NO!" to many of the things we asked of him.

 

His vocals are still there just not every sec. I will be intrested in see what he does in church tomorrow. He will do the head jerk, because he is trying to be quiet.

 

He seems so calm and school seems to be no big deal.

 

I still have my thoughts on the teeth.

 

CP

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Hi CP,

 

I just want to warn you that strep titers can be neg/normal and it can still be PANDAS. Our dd got strep (FEVER) January. Our dd's titer's were all normal/low (in March and April) even when she was competely full blown PANDAS (anorexia nervosa, OCD, contamination fears, tics, psychotic behavior) and her throat culture was postive in March (rare growth after 48-72 hours, plus her 5 year old sister was positive on the rapid).

 

We tried 3 other antibiotics (March until June) before she went into remission on Azithromycin. She is still on Az. (since June). The ped. rheumatologist and ped. neurologist both agree it is reasonable to keep her on 1 year...then maybe we'll think about switching to pen. prophylaxis which is not so broad spectrum. Even, with the Azithromycin, her turnaround wasn't overnight. After 3-5 doses she was yelling at us less. After 8-10 doses she "decided she wanted to get better" and started eating 3 meals a day. After 1 mo. she was 97% normal but there was still and "edginess" to her (and tics still present, but OCD and anorexia nervosa gone). After 2 mo. on Azithromycin she was pretty much 100% (no more tics, "edginess" gone). I think it just takes a while for the inflamed basal ganglia to "recover" once antibiotics are started. Also, I wonder if it takes a while for the strep toxins to leave their system?

 

We think dd is a strep carrier (strep was living in her throat for 2mo...normally her immune system should have cleared it). This may be why she responded to the Azithromycin and not the other antibiotics. Also, the Azithromycin has some anti-inflammatory/immonodoulating effects that the others don't have.

 

Re low titers...some kids don't make a lot of titer even if they do have strep (postive culture and pharyngitis). Other kids have titers that rise and fall very rapidly so by the time the blood is drawn (after a couple of months) the values are "normal". Some kids have a very low baseline so even when their titers rise the values are still "normal".

 

For a PANDAS diagnosis, it really doesn't matter if your child's titers are "normal" if throat culture is postive...that is all the evidence of strep that you need. Where titers are useful is when you child is no longer culturing positive and you are looking for "evidence" of a prior strep infection. Also, some people notice their child becomes symptomatic when titers rise above a certain number. In Swedo's studies, titers rose *after* OCD/tic increases...which makes me believe it's not the titers themselves that was the direct cause of the PANDAS, but more of a marker of strep. Perhaps PANDAS is more directly from the strep (toxins) vs. the antibodies themselves.

 

Yes, I wonder how many kids with tourettes would not have their disease if strep A did not exist....how many kids who are actually PANDAS have damage to their basal ganglia (after years of untreated strep) and will have tourettes/tics even once antibioitcs are started. And, then there are probably some kids with tourettes who would still have tourettes if strep A didn't exist, but perhaps, strep acts as one (of many) triggers. (I don't know if I would call this group of kids true "PANDAS"....but they still should go on antibiotics.)

 

Anyway, I'm not saying that your child does or does not have PANDAS...just don't discount it on soley the basis of low titers. (Conversely, just becaue your kid has "high titers" doesn't automatically mean she has PANDAS...)

 

A lot of kids get "strep" with no symptoms (so parents don't know it's there) which muddles the PANDAS diagnosis business even more.

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one more thing...

Did I already warn you about toothbrushes/toothpaste? Get you child their own toothpaste they don't have to share with family members. Also, change toothpaste/toothbrush a couple days into abs treatment. It is possible for a person to get re-infected from their own toothbrush since the strep can live on toothbrushes for a couple of weeks.

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CP,

How long has he had the head jerks,tics and emotional behaviors? We hear alot of "no" responses here also. Also uses the word stupid alot too. I have stopped taking him to church because one day I had a good cry in church when I realized how all the younger kids could participate and cooperate in church but he couldn't sit still and wouldn't. I felt like everyone was watching his bad behaviors and wondering why he was aloud to act this way. Andrew can control the noises at places also but lets them out at home or outside or in a loud place. It must be hard for them to hold them in during the school day and I guess that is why they become so anxious or frustrated at home. Is he calm now because of the antibiotic or is he always this way? How about his emotions. My son can ball over the smallest of things. He is very happy one minute, sad the next or angry the next.

 

Sorry this is off topic but I am stressed out right now. I wonder how much of this is genetic? I think my MIL is bipolar even though they don't discuss it. Everyone is always careful to give her her own way. She is very manipulative too. She acts so perfect (religious)but in realty is very disfunctional right down to the fact that she has divided the whole family so none of my husbands siblings even talk anymore. She has put a giant wedge down the family and nobody has even tried to rectify the mess she created. She has made it so that my sister in laws haven't spoken to me in years. I don't even know why but my MIL must have said some bad things to turn everyone against each other. My husband says it is not my problem and not to worry. None of his brothers will speak up to her either and call her out on it even her husband allows it to go on. My kids don't even know their aunts, uncles or cousins on his side. My family is so close and talk daily which my husband and his parents resent. I can't stand the fact she has allowed this dysfunction to effect my kids. She is a mean person and one time when I tried to tel my IL about Andrew's PANDAS a few years ago, they got up in a restaurant and screamed at me for never telling them anything(not that they had ever asked about the kids to me), and left (including the bill for the steak and lobster they ordered). Never an apology and it was even my birthday! I know the best thing to do is to forgive but these people have just added stress to my worries since the days of my wedding planning. They also buy my kids affection and think that is the way into their lives. They always have to buy the biggest gifts. My sons back to school shopping with them ended up being three toys! I just have to bite my tongue because I think she wants confrontation so she can tell people how horrible I am. I refuse to do it. With her she will always think she is right no matter what I say anyways. She is very all about herself. People like that should not have kids. When she found out I was pregnant with Ava, she was telling me how I was going to kill my husband from all the stress I put on him(because I stay home with my kids). She is the one who calls him and interferes. I said why are you upsetting me, I am pregnant again and she said in a mean tone "yes I heard and you are going to give Todd a heart attack for sure". I said to her if you would stop calling him at work and let him do his job maybe he would have less to worry about. She makes plans with him but never calls to check with me when I am home with the kids. I know they won't ever change but when will my husband grow a pair and speak up for his wife and mother of his 4 kids? Sorry to ramble but these mental behaviors seem to have been passed down from my MIL to my husband and now to my son. I am now seeing issues with my husband the more I have learned about my son's condition. My husband could never make eye contact with people, was a loner with no friends, cracks his knuckles all the time, has a bad temper, can be mean and moody and say rude things, takes things wrong. His family would never have admitted there was something wrong with him though. My husband takes prozac at my insistence but I don't even think that is enough to help him. I am starting to wonder if he is adult aspergers? Anyone else have these family genetic ties they can trace? Luckily I am going to a psychologist next week with Andrew. The stress has caused me alot of health issues. I have fibro and arthritis and now some degenerative disc disease causing neck/back pain constantly. Sorry to ramble.

 

 

 

Michele

michele,

 

This is so hard, my son has never came up + for strep until last week. I find it hard to believe he has never had strep before. I wonder how long he has had some kind of untreated strep. That make me sick to think about, because I don't know how much damage has been done.

 

The biggest help the amox has done is, he is much more nice to us all. He does has not said "NO!" to many of the things we asked of him.

 

His vocals are still there just not every sec. I will be intrested in see what he does in church tomorrow. He will do the head jerk, because he is trying to be quiet.

 

He seems so calm and school seems to be no big deal.

 

I still have my thoughts on the teeth.

 

CP

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(((((((((((michele,))))))))))))))))

 

He has had the head jerks since late winter. He is pretty much a good boy, just testing the waters to manhood.

 

I'm so sorry about the trouble with the IL.

 

Try not to miss church because of that, sooooo many graces come from going to church.

 

I hope this makes you feel better, but just today I had several parents ask my son if he would be an alter server. They all know what he has, and don't care.

 

I'll be praying for you.

 

CP

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Hi Michele... sorry to hear what you are going through with your MIL. My father was very much like that. He was spiteful and was never happy if my brothers and myself were getting along, he'd always talk behind eachothers backs... once we got old enough to have our own opinion he wiped us for a year or so... he enjoyed the misery. Mum and I have talked about it and both agree that there wwas something "not right" with him. He died 18 yrs ago, but has left a path of destruction behind. I only speak to one brother {he has TS} and the other 2 brothers only talk to eachother because they wollow in misery together, and nastiness. Those 2 are just like my dad though that was once what they feared the most.

 

Is there a link? Mum and Dad had 5 kids... {one boy died as a baby} so... two of those 5 kids are "challenged" like my dad...my good brother has Tourettes, and I think I'm normal :) ... but I think I'm a bit OCD but I control it.

 

THEN... out of my 5 children ,2 have epilepsy, 2 have OCD {probably only to the extent I do}, one of those girls has depression also, then my little boy has Tourettes. A fine mixture there... so is there some kind of link between it all? ... forgot to mention my dad also had epilepsy but denied it... he took medication in secret. Typical!! lol

 

Michele, don't let these people bring you down, just think how miserable their lives must be just from being the way they are. lol. You know you're a good person and that's all that matters.

 

Take care,

Lyn.

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