There is light at the end of the tunnel

[Toms_Mom]

Lynsey,

You are so right about our husbands. I often think how would I handle this without him? I really do depend on him to keep me rational and to reassure me everything is going to be alright. I just NEED to hear it every so often. I also think you are a Godsend to this forum -no matter how long you stay. You are giving some great advice I think a lot of us needed to hear!

 

Mary

[lynsey]

lynsey,

 

No, my DH did not tic, really still does not tic. He has 2 vocal words, "BUDDY" and "LOVE" He put these words in between sentences. No body tics at all, but did have them when he was younger. He did not know he had TS his family told him he had "Habits."

 

 

Yes, my husband is a very hard worker too, and a wonderful father. Always making the kids laugh, and giving me the most tight hugs. I'm hoping our son will be just like him.

 

Did your husband's father have ts too? My father-in-law does, but a very smart man and retired as head of IRS. He is very healthy and enjoys golf every day in CA. I'm very hopeful.

 

CP

 

Yes, my husband's father did have TS, but I think his tics were fairly mild. By the time I met my husband, my father-in-law was 60 and he had an almost imperceptible (but umistakeable to me), head nod, plus he would raise and lower his hand at the same time. However his entire family would never acknowledge these as tics. My mother-in-law - they are both european - denied her husband had any tics whatsoever. That's ok, I understood,

they are from a different culture and a different era. Isn't it funny - she told me that her son (my husband) just had a

"bad habit", just like your husband's family told him!!! Unfortunately my husband's tics (he's 47) are fairly significant - severe head

nods, blinking, sniffing and head jerking. However he has the ability to "shut them off" when we are with other people or he

is at work, and then "lets go" at home. Also, he does all the worst things to aggravate it - eats too much sweets, plays

rapid-blinking video games (yes, he's like a kid!), drinks too much coffee.....so he just lives with the consequences.

If he wants to lower his tics he knows what to do....

[mommyof2]

Thank you so much for your words. I know this routine did help him very much... We are awaiting to hear back from his doctor about a doctor in our area that does cognitive behavior therapy...maybe this will help him again if i was able to do it for him the first time

I also have an email in to his teacher about the teasing...have not heard back from her yet but will see her tonight at swimming where we both take our daughters and if will ask her if this has been taken care of with the boy. Our school has a CARE program and one is respect..he is not following the program. I just try and tell my son that most kids who tease do it because they are unhappy with themselves and feel they need to hurt someone else to make themselves feel better. He is home today from school, he was sick yesterday and just not up for school today... I am not sure if it is sickness still or just needing a day home with mom. This is the first day in a while he stayed home or wanted to... so i am not pushing him, happy to say the tics are on a down level just a few hand motions and face glimishes....the one where he is lips go into an ohhhh! when talked to...

 

Mary

 

 

 

Dear Mary and CP

 

Mary, you mentioned that except for the teasing he gets at school, he otherwise enjoys school.

I would not put up with the teasing! I would go to the school principal and say, this should

not be happening, you should make this stop immediately. I would get your son to tell you names of

who is teasing him, and I would put the kaibosh on the teasing, pronto. This is an era of "zero tolerance".

I have intervened on my son's behalf MANY times. Some of the more aggressive episodes of

teasing were handled by giving the offender a suspension of anywhere of 1-3 days. The teasing issues were addressed right away,

and believe me, they stopped. I didn't care if the principal told the teasing student that the parents had called him,

I WANTED them to know that there was a mother lioness behind my son, and damned if I was going

to let them get away with teasing or bullying. Thereafter, they treated my sons with the respect they deserved,

and if they saw me in the school, it was "Hello Mrs.", they treated me respectfully too.

Those that demand respect, get it. Don't be afraid to intervene if you think the teasing is excessive.

He doesn't have to put up with it.

 

Also, the "routine" you used with the "kissing hand" - absolutely PERFECT. What you did was you offered him a strategy

to deal with an anxious situation. This is "cognitive behaviour therapy". You instinctively did the absolute

right thing, and soon enough, he didn't even need this strategy, he slowly learned to handle it as he matured.

BRAVO TO YOU! You are a very instinctual and smart mom and your son is blessed to have you.

 

CP, yes it is wonderful when you see other friends appreciate your child for all the qualities and talents they possess.

Most children really do ignore the tics, they get used to seeing them, and then they don't pay attention to them any more

and they just look at the "great friend" they have.

Did you notice the TS in your husband when you met him? My husband wasn't ticcing when I met him, but later on he

did, and when I asked him what it was, he told me he was afraid to tell me about it before because maybe I wouldn't

love him. Oh my goodness, he had so many wonderful qualities, I didn't care at all about the TS, but only that it

hurt his neck sometimes. I never met anyone like him. He's never gotten angry at me (in 20 years marriage!), he's gentle, he's

hardworking, he's devoted.....all the things I wanted in a man.

[lynsey]

Mary

 

Cognitive behaviour therapy is sometimes difficult for a child to grasp.

My pre-teen was not interested in it at all when I took him. He thought it was ridiculous.

(It's not, but he was too young still to understand how it could really help him). The doctor had

warned me they don't understand it as well as adults or older teens.

I learned quite a bit of cognitive behaviour therapy for my own anxiety issues

and I sort of tailored my approach to teach him a few things, but even at

15, he is not of the mindset yet to really grasp it's value.

 

Here is a book I found that may be more geared to your child's age -

you can get a book right away and read it, and try their suggestions, and not be limited

to waiting to find a doctor. That's what I did, before I found the right doctor.

There are also other books out there but this is one I've used before:

 

http://www.amazon.ca/gp/reader/1572241918/...357#reader-link

 

hope this helps!

[bmom]

Lynsey,

Can you tell me a little bit about your sons health prior to tics? Did they have many infections, allergies, asthma, bouts of strep throat at all? Infections such as ear, pneumonia?

[lynsey]

Lynsey,

Can you tell me a little bit about your sons health prior to tics? Did they have many infections, allergies, asthma, bouts of strep throat at all? Infections such as ear, pneumonia?

 

Hi bmom

 

Prior to tics, my oldest son had recurring, chronic ear infections and high fevers. He did have strep, once. Then he had surgery for hernia

repair, then following that he had surgery for tonsils and adenoid removal. Then he developed asthma which flared up only when he

had bronchial infections - but these were frequent. Thereafter he had surgery for ear tubes, which solved many of his problems.

His tics were always much worse when he was sick. Many times, sicknesses would CAUSE a tic, particularly if

it was a bronchial infection where he was coughing a lot, without fail he would get a throat-clearing tic that would

last for a long time. He did have pneumonia once or twice, and a partially collapsed lung one time. He was a little

boy that was sick an awful lot. (he's much better now. We sought the top doctors for him and their conclusion was

that he had perhaps a slightly narrower airway than other children, hence the problems....and he would grow out of it.

He has, for the most part).

My youngest son was not sick very often and when he was, he could shake it off quickly. However, he did have

a terrible strep infection when he was 4 - his tonsils were so enlarged and infected, the doctor coined them "kissing tonsils", because they

were touching each other. Thereafter we had his tonsils and adenoids removed. When he was a

baby, he had the worst - the WORST - case of colic. It lasted until he was almost a year old. Cried constantly.

We observe his tics to be more related to stressful situations. Starting school, a very stressful occasion

for him, was the start of his tics - and it continued, because he was always under stress at school.

 

By the way, after I did research about vaccines, I did not allow my sons to have Hep B or meningitis vaccines

that the school was giving all students (I live in Ontario, Canada). It raised some eyebrows because I was

the only one not allowing it, and the nurses tried to tell me I had to, but I didn't allow it, and I'm glad I didn't

[bmom]

Thank you. Do you feel that your boys had evenly matched severity of tics? Or were they both pretty consistent and even?

[lynsey]

Thank you. Do you feel that your boys had evenly matched severity of tics? Or were they both pretty consistent and even?

 

Well, neither of them had horrendous tics, so in that way, I guess I would say their severity was evenly matched,

but the tics were different and they emerged at different times and for different lengths of time.

 

I remember asking my TS doctor, "I know this question sounds silly, but is it possible that

my genes would "dilute" my husband's genes, in terms of how my children's TS would

manifest itself?" He said certainly this could be true. My friend though this was ridiculous -

she said you either inherit something or you don't. But, I know you can inherit the TS gene and

not show any tics at all. Your children then may inherit the gene from you, and display tics.

This is why people often say their parents never had TS, but this is because the tics never manifested.

I also thought, if a woman of color, and white male (or vice versa) have children,

the skin color is often neither black nor white, but a combination of the two. Same thing often

happens (but not always) with hair color, eye color, freckles, height, etc. Don't you think?

This gave me some hope that my kids would not have TS with the same severity as my husband.

I'm off topic here, but I thought that was something to hold on to

[bmom]

That is funny. My husband has tics. They are mild. I have come to believe that it is likely he had TS as a child. He did not tic or know anything about it except that he had some "habits" as a child that his family would say stop that about. His mother took him to the doctor and he said it was caused from stress. His tics started to return some in his 30s. He has a stressful job and I have read that 30's sometimes they do return some. Anyway, I also have thought about the diluted idea. Although when I started to look into my family, I have found some interesting stuff related to autoimmune that I can't rule out my family as part of the problem. Darn it!! I have decided that my son is probably PANDAS as my husband tics and my grandma had rheumatic fever and possibly some PANDAS as well. He was an asthma, allergy, sick kid and my daughter is really the opposite. He had many cases of strep and my daughter had one. My husband had infections, sinus etc as a child. I am just trying to figure out if there is a connection with these and hoping my daughter will be different as her immune system seems so much better.

[lynsey]

That is funny. My husband has tics. They are mild. I have come to believe that it is likely he had TS as a child. He did not tic or know anything about it except that he had some "habits" as a child that his family would say stop that about. His mother took him to the doctor and he said it was caused from stress. His tics started to return some in his 30s. He has a stressful job and I have read that 30's sometimes they do return some. Anyway, I also have thought about the diluted idea. Although when I started to look into my family, I have found some interesting stuff related to autoimmune that I can't rule out my family as part of the problem. Darn it!! I have decided that my son is probably PANDAS as my husband tics and my grandma had rheumatic fever and possibly some PANDAS as well. He was an asthma, allergy, sick kid and my daughter is really the opposite. He had many cases of strep and my daughter had one. My husband had infections, sinus etc as a child. I am just trying to figure out if there is a connection with these and hoping my daughter will be different as her immune system seems so much better.

 

 

You're right, both sets of genes play a role. My mother-in-law got quite upset with me once, that I was insinuating the TS came from their side of the family.

Well, it did! But having said that, both my boys inherited the anxiety gene from MY side, and that has been far more problematic for

them than the tics! So I can't say I have the superior gene pool!!

My husband's tics subsided in his 20's somewhat, but have exploded since, yes, I guess about his 30's. Now he's 47 and they're pretty significant

(head nods, head jerks, eye blinks, constant sniffing). The TS doc said he is unusual, most ticcing abates as you age.

But as I said in another post, he does everything possible to aggravate it - doesn't watch what he eats, plays blinking video games....

so I told him, he's a big boy, he has to look after himself.....

[ilovedogs]

Lynsey,

I have my ds in therapy for the anxiety but I don't see it helping very much. It just seems like he can't think logically about his fears yet. Now, I see that you tried it with your son at 15 and he still struggled with it! I'll try out the books you recommend. It just seems that the older my ds gets, the more emotional he gets with his anxiety and the more it affects his GI system. He throws up before football games now and he has a VERY sensitive stomach to begin with. He threw up last night b/c he ate too many Fritos(which my dh shouldn't have bought anyway) and I gave him a supplement chocolate drink that was the icing on the cake. Yet, many times he throws up and then says, "Ok, I'm good now!" He's also had more of a generalized anxiety where he just would throw up and wouldn't be able to tell me what was causing his upset stomach. Just a general feeling of unease and anxiousness would overcome him. We are also taking him to a naturopath who has put him on glycine and glutamine to help calm his system but, quite frankly, I don't see the benefits. Maybe it just takes time?

 

Can I ask why you didn't try meds for the anxiety? I know a lot of people who give their kids prozac and celexa for anxiety or OCD. I also have a friend whose son has TS and she started him on Prozac and it has minimized his tics. I know that some kids can't tolerate meds and I certainly don't want to go that route unless I feel it's absolutely necessary. I was just curious since you chose meds for the tics.

 

Sorry to keep this thread alive!

 

Bonnie

 

Mary

 

Cognitive behaviour therapy is sometimes difficult for a child to grasp.

My pre-teen was not interested in it at all when I took him. He thought it was ridiculous.

(It's not, but he was too young still to understand how it could really help him). The doctor had

warned me they don't understand it as well as adults or older teens.

I learned quite a bit of cognitive behaviour therapy for my own anxiety issues

and I sort of tailored my approach to teach him a few things, but even at

15, he is not of the mindset yet to really grasp it's value.

 

Here is a book I found that may be more geared to your child's age -

you can get a book right away and read it, and try their suggestions, and not be limited

to waiting to find a doctor. That's what I did, before I found the right doctor.

There are also other books out there but this is one I've used before:

 

http://www.amazon.ca/gp/reader/1572241918/...357#reader-link

 

hope this helps!

[lynsey]

Lynsey,

I have my ds in therapy for the anxiety but I don't see it helping very much. It just seems like he can't think logically about his fears yet. Now, I see that you tried it with your son at 15 and he still struggled with it! I'll try out the books you recommend. It just seems that the older my ds gets, the more emotional he gets with his anxiety and the more it affects his GI system. He throws up before football games now and he has a VERY sensitive stomach to begin with. He threw up last night b/c he ate too many Fritos(which my dh shouldn't have bought anyway) and I gave him a supplement chocolate drink that was the icing on the cake. Yet, many times he throws up and then says, "Ok, I'm good now!" He's also had more of a generalized anxiety where he just would throw up and wouldn't be able to tell me what was causing his upset stomach. Just a general feeling of unease and anxiousness would overcome him. We are also taking him to a naturopath who has put him on glycine and glutamine to help calm his system but, quite frankly, I don't see the benefits. Maybe it just takes time?

 

Can I ask why you didn't try meds for the anxiety? I know a lot of people who give their kids prozac and celexa for anxiety or OCD. I also have a friend whose son has TS and she started him on Prozac and it has minimized his tics. I know that some kids can't tolerate meds and I certainly don't want to go that route unless I feel it's absolutely necessary. I was just curious since you chose meds for the tics.

 

Sorry to keep this thread alive!

 

Bonnie

 

 

 

Hi Bonnie!

 

Don't apologize about keeping this thread alive, I think these issues are very important that we talk about.

 

First I'll answer your questions about meds. For a long time, I was adamantly against meds. I was terrified at the prospect

of going down that road. Didn't want to face that perhaps their symptoms were more than I could treat just

by diet and lifestyle changes. Sure those things helped, but not to the extent I hoped. Had long, long talks

with my TS doctor about this. He kept saying to me, "Lyn, if your child was in pain, wouldn't you give them

something to help the pain? If they had a broken leg, wouldn't you give them crutches?" I understood what

he was saying, but I was still afraid of side effects. He told me, try it, and if the side effects are not good,

we can always take them off. That was what finally tipped the scale for me. Nothing was irreversible. I

could try it, and then take them off if side effects were not good. From that moment, I felt like a weight had

been lifted off my shoulders. I knew I had opened up another world of options for my children, and I started

them on the clonodine. We found the dose to be too sedating for them, and made them irritable, so we lowered

it to the lowest dose possible, and it seemed to work well.

Second, you were asking about meds for anxiety. Yes I most certainly did look into this. Again, I took the

conservative approach, and thought I'd start by treating them when they had real bad "episodes", not

unlike what your son goes through. Since my sons' anxieties were both mostly situational, particularly performance anxiety,

I decided to treat it as it occurred, rather than have them on a daily anxiety medication, which could have

more side effects (but not always). We discussed lorazipam, and finally decided on clonazepam. If they have

something that is causing them so much anxiety they are beside themselves, we can give them 1/4 tablet and it relaxes them nicely

for about 8 hours (I think). It gets them through that situation.

They really hardly ever take it, but just knowing that it's there for them when they need it has lessened

their anxiety tremendously. P.S. I take it too and it works well for me. You should know that it's habit-forming,

but we never take it often enough for this to be a concern.

But from what you describe about your son, he may benefit from a daily anti-anxiety medication - you should

discuss this with your doctor. Living with anxiety is torturous, I can attest to this. I have several excellent books on

anxiety and worry, if you need their titles please let me know

 

 

Mary

 

Cognitive behaviour therapy is sometimes difficult for a child to grasp.

My pre-teen was not interested in it at all when I took him. He thought it was ridiculous.

(It's not, but he was too young still to understand how it could really help him). The doctor had

warned me they don't understand it as well as adults or older teens.

I learned quite a bit of cognitive behaviour therapy for my own anxiety issues

and I sort of tailored my approach to teach him a few things, but even at

15, he is not of the mindset yet to really grasp it's value.

 

Here is a book I found that may be more geared to your child's age -

you can get a book right away and read it, and try their suggestions, and not be limited

to waiting to find a doctor. That's what I did, before I found the right doctor.

There are also other books out there but this is one I've used before:

 

http://www.amazon.ca/gp/reader/1572241918/...357#reader-link

 

hope this helps!

[ilovedogs]

Thank you, Lyn, for your candid responses here! How old were your boys when you started trying the meds? My ds seems so young and I just keep thinking that if I give him more time to mature, he'll be better able to handle things. Mostly his anxiety is separation anxiety stuff(worrying about something happening to me while I'm away from him and he worries that I won't pick him up from children's church). He also has health anxiety, big time! He has even worried about the checkbook in the past! But, mostly it's just the questions that I get are always topped with anxiousness and nervousness. He always has to know everything: what time are we doing something, then what are we doing, etc? He hates being late(he gets that from me!), and is scared to death of the dentist and doctors! Life is definitely challenging with this boy and I pray daily that we will make it through. That's why I am enjoying this thread. So many of us here are in the throes of not knowing what to do or how to handle it that we become burdened by our own anxiety. Thanks again.

 

Bonnie

[CSP]

Hi Bonnie,

 

I know you are waiting for Lyn to answer, but I just wanted to let you know that my son has outgrown a lot of anxiety. He would worry bout a lot of what you said your son does. Maybe a little more since he knows he has a very deadly allergy to peanut and has already had that rescue squad ride to the hosp. He was always thinking he was going to die if he was around anyone with peanuts.

 

Just yesterday he came home from playing football with friends and washed his hands and told me the boys were eating peanut butter. He did not react as he used to, he just washed his hands and went up to wash the football and played for about another 3 hours. If this had happened when he was younger he would have quit and came home.

 

Just wanted to encourage you that I do think these things work out as they get older.

 

God Bless,

CP

[lynnie1264]

Lynsey... I just read your beautiful post. Thank you for that. That is exactly what we need to hear. And you have been so honest with how you felt.

 

I was the same for a while, I couldn't look at him, it hurt to much. Then, the fact that I couldn't look at him is what hurt me the most, and what made me come to my senses. I remember thinking "I am his mother, if I can't look at him then what do I expect others to do?"

I was more upset by my own attitude than anything else. My kids are my world, always have been, and I was so disappointed ion myself for letting myself feel that way. That was my wake up call, and I'm glad it happened. It took a while for me to be able to accept what he had. My brother had TS {probably moderate} and that's all I had to go by. I admit I was devestated. But all in all that feeling only lasted a few weeks. I realised that he was still the same beautiful little man he was before and he needed to be treated the same as before.

 

I have also reduced artificial stuff and he no longer drinks cola {although when he's doing well I do lt him have treats still, he's still a kid afterall}.

 

My son has mild TS, but yes they change. I know that most of my worry comes from "what will the future bring." And what good is that going to do me or my son? Worrying about something that may never happen. {but that's me all over, not just with TS, with anything. I always worry about things that are never going to come about so I guess it's natural I'd worry about this }

 

I, like so many others here, used to watch him all the time, almost as though I HAD to see each tic to keep on top of it. Drove me crazy, but the worst thing was that my son noticed me watching and I'd see his sad little face, I could tell he was thinking "There must be something really wrong with me, she's watching me all the time."

 

So I stopped all that and accepted that whatever happens will happen and we'll deal with it as it happens. He has the right to feel "normal" and loved and accepted... because he is normal, loved and accepted.

 

There are far worse things that children have, and this is not the end of the world at all.

 

Thanks again for your post, and everyone else who has written, it's a lovely thread to read.

 

Thanks so much,

Lyn.