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evol
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hello. I am new and have been reading this forum for a while. I have TS, however, my husband does not know I have it. He obviously knows my symptoms, but he just thinks I am being corky. I haven't been able to tell him because I am afraid of how he will react and I have been keeping this from him for so long (we met in high school). I also was aware that I could pass this on genetically to my children and chose not to disclose that with him as well. Now, my 6 year old has been ticcing midly for a year and I know she is going to be a victom of TS. My son who is 2 1/2 has recently also been doing odd things like a nose tic and screaming out of the blue. He seems young to be showing symptoms but I know its not impossible. My DH just thinks all kids do these things and blows it off. I know the right thing to do is to come out with it all, but it has been such a deep-rooted secret (even by my family) for so long I don't know how to go about it. I keep hoping they will just be transient tics and go away. I have tried to improve their diets but haven't added any supplements. I am just waiting for the day the tics get severe and then I feel like all ###### will break loose. Is there anyone that has been in this position and I could greatly use some advice since I am losing it here. I can't think about anything else! Oh, also, there is definitely a chronic tic disorder on my DH's side of the family so does bilineage transmition mean my children will have more severe symptoms?

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Hello and welcome!

 

I am sorry to hear you are going through so much right now. But have hope there are so many different things you can do to help your children. I wanted to share with you what I have discovered with my own son. I truly hope this helps you because I cannot tell you how much it helped us. I thank God for ultimately showing me the direction I needed to go to help my son.

 

When it comes to your husband, not knowing you have Tourettes, my gut is the burden of you holding this in is much greater then any reaction he may have. You may be very surprised that he does not react the way you perceive he will. The "giants" we create in our minds, with fear running ramped, are in reality more like "itty bitty little bugs" when the fear is actually faced. I know from my own experience fear can take over like wildfire and when you stop giving into that fear it makes a world of difference. I know for me when I face my fears I think to myself why did I live with that fear for so long when it was so unnecessary. For me, I am a Christian, I would pray about how to talk to my husband and then let God do his part to work on your husband's heart.

 

Well getting back to my son who has had tics since he was 3. 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 .

 

I have found two supplements to be VERY effective for my son. One is 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 http://www.latitudes.org/forums/index.php?...Carolyn+N\ and http://www.latitudes.org/forums/index.php?...Carolyn\.N .

 

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 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.

 

God Bless,

 

Carolyn

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Hi Evol...

 

From what I know, just because there are tic genes on both sides of the family, it does NOT mean your kids will have more severe symptoms.

 

Just like when it is inherited, the second one that gets it doesn't necessarilly have the same as the 1st... and so on.

 

I know what you mean about the "secret". My son is 8 and has mild Tourettes.

 

My brother has Tourettes. But nobody ever spoke about it, he is 8 yrs older than me, and I always remembering him having some type of tics. He is much older now and they did seem to ease alot as he became an adult, he only tics mildly now.

 

However, I can't even bring myself to talk to him about my son because my brothers TS was always a taboo. Mum did take him to the DR when he was 10 but nothing was known about it then. I assume my brother ended up getting his own diagnosis as he got older.

 

The only reason I know he has TS is as I got older I wanted to know why he did it, and did my own research. Little did I know that a future child of mine would have it one day.

 

So I do understand where you're coming from. Don't feel bad, you were raised with it as a secret, so obviously you wouldn't have felt open to telling your husband.

 

Things will be OK.

 

As Carolyn N. said, keeping it inside is not going to help you. I really feel for you. Your husband will understand once you tell him how you were made to feel like it was a secret. Trust me, you wouldn't be the only one.

 

Take care,

Lyn.

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Evol...

 

Just want to add something ... I reread your post and I'm concerned that you feel your son will be a "victim" of TS. I know they are only words, but I feel because you were raised needing to keep it all hushed up that it's given you the thought that it is a really bad thing. That was the way many people handled it back then unfortuneatley. :) .. but now it is more out in the open {but not as much as it should be}... The thing we need to change is how when people hear Tourettes they automatically think of severe tics and swearing because that is all that gets portrayed on TV.

 

Evol, you have no reason to feel ashamed... I just wanted to make that clear.

 

I will admit that I totally lost it in a way when I realised my boy had it, but I soon calmed down when I found out they didn't need to be victims. There are so many ways we can help.

 

The only reason I don't feel right telling some people about my son is because I'm sure they'll assume the worst, which isn't the case... and in most cases it isn't.

 

Please keep us posted,

Lyn.

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Welcome Evol.....i know you will find the support you need here on this forum.

I wanted to let you know how similar our stories are. I too have TS.....never formerly diagnosed b/c, like you, it was never talked about growing up. I suspect that's b/c it wasn't as widely known about as it is now. Or the ppl who did know about TS were only aware of the very worst symptoms. I remember being told to "stop that".....when i couldn't, i wondered why and with that came alot of shame. That shame/embarassment i carried with me until very recently. I am still trying to get past it at times.

When it comes to my dh, he said he always knew i had TS, but the one time he tried to ask me about it when we were dating, i started crying. so he NEVER brought it up again. I guess the little goofy noises i made/make, were endearing in a way b/c he married me anyway. So 9 years of marriage go by and one day our dd (4 at the time) presents with an eye blinking tic. That is when I "came out of the TS closet". i'll always remember that first night we really TALKED about it. We cried like babies, read bible passages, held each other, and yes, of course worried about dd. That worry continues today, almost 18 months later; though she is doing pretty well. I have to tell you what an enormous weight was raised from my shoulders after we started talking about it. I spoke with my parents about it, my sister, my good friends, even people i didn't know all that well. I think you will find that it does get easier and easier to talk about. I was told by a cousin that these tics are such a miniscule part of my life that ppl that know me well probably hardly notice them. That made me feel so good b/c in my mind the tics were ALL ppl could see/hear. I thought when someone thinks about ME, they think about my tics. How refreshing to find out that wasn't true.

Anyway, i do hope you are able to talk about it. If you are sooo worried about telling your husband, maybe you could talk to someone else about it first. I've been wanting to see a therapist for myself just to get over those lingering feelings of shame. I feel that if my dd is going to have TS, i want her to feel completely normal and most importantly able to talk about it openly, with anyone. I know how cruel kids can be (hey i taught 5th grade) and i think if a child with TS can be open about it and educate their peers, the teasing/bullying will be much less.

Praying for strength for you to get through this first hurdle......so glad you found this forum.

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Welcome Evol,

 

I just wanted to let you know coming from the wife of a husband who has TS, I still love him dearly. He knew he had something growing up, but did not know what it was. He is the one who heard about TS on the radio coming home one day from work and told me he thinks he has this thing he heard on the radio. I thought wow you must have a very mild case I never noticed it, or had I ever heard of it. It left my brain.

 

So when our son exploded with it I remembered what he said. He is the rock of this family, and because he is so understanding he focuses on how I'm doing more then how our son is doing.

 

Now yes my son has it pretty bad, but he did not when he was small. I'm hoping this is just because of his age, and things will get better again.

 

No need worring you may have been worring for nothing. I'm so glad I had no clue about TS until he was 12. I had many wonderful years enjoying him, and 3 great years homeschooling him.

 

God Bless,

CP

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Hi Evol and welcome

 

like CSP, I have a husband and youngest son (now 18yo) with genetic Tourette Syndrome

 

I have a link in my signature here as to what has been helpful for my son

 

for people who have genetically inherited TS, magnesium deficiency does seem to be a core issue and so supplementing that is a very good place to start. Many members here have found that a magnesium product called Natural Calm and the children's version of Kids Calm is very beneficial, as are those epsom salts baths (my son has footbath when not enough time for a full soak, and we also keep homemade epsom salts creme on hand)

 

there are many other potential triggers that you can also begin looking into and we will all be here to try to help you take it a step at a time....trying to absorb too much info all at once can become very overwhelming.

Maybe start with our Essential Threads sticky http://www.latitudes.org/forums/index.php?showtopic=2459

 

you will find a lot of different issues discussed here as the forum covers many things that can cause tics, in addition to the genetic disposition for the disorder that some of us represent. not everything discussed is relevant to all of us, but there are some unifying themes that do seem to link much, one of which is we have almost all seen much improvement by eliminating "junk" food from the diet, especially the chemical food additives

 

there is a helpful article on Finding Triggers for Tics along with other helpful info on the Latitudes/ACN website

http://www.latitudes.org/tics_tourettes.htm

 

I would join in encouraging you to talk to your husband. The stress of the "secret" is not good for you or your relationship, and now that your kids are showing symptoms of the TS spectrum, being able to face the challenges in partnership with your husband will be so much better for your whole family

 

we look forward to getting to know you and supporting you wherever we can

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Welcome Evol.....i know you will find the support you need here on this forum.

I wanted to let you know how similar our stories are. I too have TS.....never formerly diagnosed b/c, like you, it was never talked about growing up. I suspect that's b/c it wasn't as widely known about as it is now. Or the ppl who did know about TS were only aware of the very worst symptoms. I remember being told to "stop that".....when i couldn't, i wondered why and with that came alot of shame. That shame/embarassment i carried with me until very recently. I am still trying to get past it at times.

When it comes to my dh, he said he always knew i had TS, but the one time he tried to ask me about it when we were dating, i started crying. so he NEVER brought it up again. I guess the little goofy noises i made/make, were endearing in a way b/c he married me anyway. So 9 years of marriage go by and one day our dd (4 at the time) presents with an eye blinking tic. That is when I "came out of the TS closet". i'll always remember that first night we really TALKED about it. We cried like babies, read bible passages, held each other, and yes, of course worried about dd. That worry continues today, almost 18 months later; though she is doing pretty well. I have to tell you what an enormous weight was raised from my shoulders after we started talking about it. I spoke with my parents about it, my sister, my good friends, even people i didn't know all that well. I think you will find that it does get easier and easier to talk about. I was told by a cousin that these tics are such a miniscule part of my life that ppl that know me well probably hardly notice them. That made me feel so good b/c in my mind the tics were ALL ppl could see/hear. I thought when someone thinks about ME, they think about my tics. How refreshing to find out that wasn't true.

Anyway, i do hope you are able to talk about it. If you are sooo worried about telling your husband, maybe you could talk to someone else about it first. I've been wanting to see a therapist for myself just to get over those lingering feelings of shame. I feel that if my dd is going to have TS, i want her to feel completely normal and most importantly able to talk about it openly, with anyone. I know how cruel kids can be (hey i taught 5th grade) and i think if a child with TS can be open about it and educate their peers, the teasing/bullying will be much less.

Praying for strength for you to get through this first hurdle......so glad you found this forum.

Thank you so much for your reply; it was very helpful. I must say, part of me is thankful that my ts was a secret growing up because I believe it forced me to suppress my tics more (I know that is not always a good thing), but it allowed me to experience a positive social upbringing which I honestly don't know that I would have had if my ts was out in the open. I like to think that your peers are excepting and understandig of everyone's "differences" but I am not sure that is always true, especially with children. I was just me, not me with ts. I think if it was out in the open, I would express my tics a lot more and be more symptomatic, which I don't want. Does that make sense? That goes the same for my children. I fear that a label will stigmatize them. If symptoms are not severe, I don't see a reason to inform the "world" about the ts label. If the symptoms are severe, obviously society would benefit from an explanation and education (although I don't know if this would eliminate peer teasing anyway). Obviously, I still have not come to terms with this burden and I need to.

 

As far as my husband goes, I worry that he would feel so betrayed that I kept this from him, not necessarily that I have ts. I feel like I tricked him into marrying me and having children with me by not giving full disclosure. I keeping waiting for the other shoe to drop, and that is when I will have to confront this issue. Being open and honest with this forum is my first step and it has been very helpful. I am sorry to have droned on.

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Evol,

I think this forum is great "practice" for talking about your TS. It has been for me anyway.

You said your TS was a "secret" while growing up. I'm just wondering.....did you KNOW that you had TS or did you and possibly those close to you, wonder why you did what you did. were you able to keep your tics completely hidden in front of others? Did you have both motor and vocal tics? thanks for sharing your story, Evol.

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Evol,

I think this forum is great "practice" for talking about your TS. It has been for me anyway.

You said your TS was a "secret" while growing up. I'm just wondering.....did you KNOW Myou had TS or did you and possibly those close to you, wonder why you did what you did. were you able to keep your tics completely hidden in front of others? Did you have both motor and vocal tics? thanks for sharing your story, Evol.

I had just one or two simple nose tics that started around age 7. When I turned about 14 is when the full ts symptoms started to show. I have had mainly motor tics with a few simple vocal tics. When my symptoms first presented, my mom would get mad and tell me to stop. She even punished me once for them. Then, as I grew older, they were more embarrassed than anything, which is why I don't think it was ever brought up to doctors. (Remember, this was way before the internet and access to so much information.) When I was in high school, my mom gave me an article to read about ts, that she had gotten from somebody else, but it was never discussed. I did go to the doctor specifically for it once when I was 21 and always wished I hadn't because now there was record of it somewhere. I guess I was pretty good and supressing my tics in school and around my friends(but not always). I only ever had one friend ask me about it once in passing, and I avoided the topic. Nobody else has ever said anything to me, even though I would consider myself to have moderate ts. But I am sure it has been talked about behind my back. I realize that all my shame and trying to keep it a secret came from my parents, because it was so obviously embarrassing to them. I guess the good thing about that is I know I wll never make my children feel that way. Thanks for taking an interest in my story.

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Hi Evol...

I'm glad you weren't teased or anything like that growing up. It's hard to figure out what my brother went through, as I said he was 8 yrs older than me, so I don't know how things were for him.

 

But I do know that he seemed to have a large circle of mates , still does.

I know he has TS, and I'm the one who told our mum a few yrs ago.Mum had never known why he did tic. this was after I looked into it after seeing a story on TV.

 

I don't think Mum was embarassed by him, just bewildered. I'm sure she accepted him, she is a lovely mum. Dad on the other hand was very nasty, and treated him like he was an outsider. there was no attempt at understanding. How on earth my brother ever got through that I'll never know.

 

But even now he still has some tics, he has a very good job, keeps getting promotions, has many friends it it doesn't really seem to be much of an issue. He has more of social life then I could even dream of having. : :lol:

 

The only reason I think I noticed was because Dad was always carrying on about it.

 

but to me, it was just how he was. No big deal.

 

But then my dad was the type of person who had to have only "perfect" children... that's because he thought he was so perfect, lol. Dream on.... -_- {mind you none of his kids measured up to the "perfect" rule... so...}

 

I am so glad things have changed now, but still not enough.

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hello evol,

I just wanted to tell you that I, myself have some compulsions and I know I had some tics or habits as a child. I guess it was sporadic and went under the radar as my parents did not notice them, nor did anyone else. It was never an issue. Fast forward to now, and my son (who is 9 now) has had tics since about 3 or 4 yrs old. He has mainly eye twitching and vocal clearing or sounds. I never had either of those, so technicaly not ts.

 

But my point in telling you this is that now that my son has this, I have pointed the finger at myself and know he must have inherited this from me, even though I never knew I "had anything" or even thought it WAS anything. When things were becoming obvious, I did tell my husband that "I know he must have this because of me".

 

Evol, if your symptoms are noticeable to your husband, than surely he "knows" you have these things, even if he doesn't know the name to call it. And if he doesn't notice, then obviously your symptoms are minimal, and so than maybe your son's will be too. So you can just say, "maybe our son has this because he gets this from me", I seem to have these habits too". .... And leave it at that. I can almost promise he will not blame you or feel you were deceitful. You just didn't know that this was anything that could be passed on. It certainly never dawned on me at any time in my life that this could be so. ....

 

If you never went to the doctor for it, then you were not formally diagnosed, so that is not being deceitful. You may have suspected you were tourettes, but so what? I don't recall having any tics after puberty, although maybe I did, but had control over them as I do now? Don't know. I think I am only aware of them now (mostly tapping things and some head tightening, never vocal or blinking). So when you start talking about this with your husband, you don't have to necessarily "confess" anything, just tell him that you "suspect" this is what may be going on.

 

Don't know if this helps at all, but I do feel it is not as big a deal as you might think. Although I do understand the upset and the fear associated with having a child with this disorder, I am certainly in that boat with you and many others here. But others out there probably do not notice what we notice or know, and even if they do, many have attested here how it has not affected their relationships (I have to keep reminding myself that) As I mentioned I did some things as a child, and can tell you unequivocally (sp?) that my friends did not care one bit, it was just a "habit" and taken in stride. I just worry now because when people hear tourettes, they associate it with the more severe symptomsm and we do not want our children to be looked upon like that. I feel for what you are going thru, but I do think everything will be okay.

 

Faith

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Evol,

 

 

What if this were a different medical condition that we were talking about here? Do we have the obligation to disclose everything that may have a genetic component to potential mates? I bet there are many of us that could beat ourselves up over not disclosing or scrutinizing partners, if that were the case. So you knew that there was a possibility that you could pass something on to future kids. Well, there was a possibility that you weren't going to either. Also, you mention that there is a tic disorder on hubbies side. Would your kids have even had any symptoms without a genetic contribution from both sides? I don't believe the answers are definitive in that dept. at this point. Please don't waste time feeling bad about this and don't allow anyone else to make you feel that way either.

 

Just my two cents :lol:

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Hi again Evol...

 

I agree with Kim and everyone else, don't feel bad about it.

 

as I've said before, my son's TS could well be passed from my side of the family, but even though I knew my brother had it, I didn't know it was genetic til I was researching about my son. .... so, if I had known would that have put me off having kids??? No way on earth. :)

 

Actually, my brother chose not to have children {not because of TS} and now regrets that decision.

 

We all pass things on to our children, both good and bad, {my mum and I joke that us kids get all the bad things from my father :D } .

 

Also as I've said before only one out of my five kids has TS. And I wouldn't trade my little man for the world. :wub:

 

Take care,

Lyn.

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Hi again Evol...

 

I agree with Kim and everyone else, don't feel bad about it.

 

as I've said before, my son's TS could well be passed from my side of the family, but even though I knew my brother had it, I didn't know it was genetic til I was researching about my son. .... so, if I had known would that have put me off having kids??? No way on earth. :)

 

Actually, my brother chose not to have children {not because of TS} and now regrets that decision.

 

We all pass things on to our children, both good and bad, {my mum and I joke that us kids get all the bad things from my father :D } .

 

Also as I've said before only one out of my five kids has TS. And I wouldn't trade my little man for the world. :wub:

 

Take care,

Lyn.

Thank you all for your responses and support. I think, as you all know, in the beginning you are terrified about what may come of the future. But then you get acclimated to the current situation and things calm down. I am trying not to wait for the other shoe to drop and just live in the now. My daughter is doing fine; just a nose tic right now, however we are reaching that one year mark. My son is so young yet, it's hard to tell if what seems like a tic is or not. He has had 3 different occurences of what seems like tics (eye rolling and nose tic) that have only lasted a few weeks each since he was just over one year old. This site has been so helpful in so many different ways. I'll keep you posted:)

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