May have found all the answers today....

[myrose]

Well after 2 years of researching my families history and contacting one after another. I FINALLY got some answers today. Its been a long road and this person living in Germany was my last hope.

I have found out today that my Father displayed signs of Tourettes. He had a constant grunting tic and a movement in which he raised his thumb over his shoulder. No one knew this in my family and as I sit here thinking and thinking I think I may have remembered this but was always told he got it from the war. From the knowledge I have gained so far throughout this whole ordeal I have come to the conclusion that what I am being told is that my Dad indeed had tics and probably TS.

My parents were 22 years apart in age, the last time I saw my Dad....well I cannot remember. They divorced when I was really young.

It appears in his case the tics never went away and continued throughout his old age. My Father was born in 1925, he is still alive and from what I am told doesn't look a day his age at all.

So I guess I can somewhat understand where the tics came from now. What I am puzzled about is this:

My Father had two daughters with his first wife....he had my brother and I after he married my Mom. We later found out that he had another child that we never knew about. We did meet this grown man a few years back....he has 6 kids now....all boys.

So out of 5 children (2 boys, 3 girls) NO ONE else has tics or anything like it. Also my 1/2 sisters have 5 and 6 children...a mix of boys and girls....NO TICS. My brother has triplets (2 boys and 1 girl) NO TICS there either. I have only one little girl and she started the tics after her 9 shots.

I will also add that one of my 1/2 sisters daughters has 2 children of her own now as well....NO TICS!!

 

I have done EXTENSIVE research and probably spent most of my life on the phone the past few years gathering all I could from everyone.

NO ONE else in the family has tics, much less ever heard of them. How can this be. Why did the tics ONLY show up in my daughter.

Its sort of like it all made sense to me for a second but now I feel puzzled as can be again.

 

The only thing I can think of is that the 9 shots that day brought out the pre-dispostion of tics for her. I will add that no one in my family or there children EVER had a mix of 9 vaccinations in one day either.

 

I wonder also if I should have reported it or should report it to the CDC..maybe its too late?

I just cannot come to any other conclusion. She was normal before the shots that day. I will never forget it.

 

What does everyine think about it all.....it just does not make sense to me.

[Chemar]

wow myrose.....what a path you have been on huh! Yet in a way you must almost feel a sense of strange relief at the new and large piece in the puzzle............

 

 

you know the last place we looked was a TS diagnosis.

 

even though it is clear now that this is what my husband and his dad had disorders on the Tourette syndrome spectrum, yet we never realized the TS connection till my son was diagnosed and my husband had many remembrances of stuff he did as a kid. We had alwas thought my hubby and grandpa "eccentric"

 

Truth be told, I did not know what Tourette was when a young boy in my sons elementary joined the class with TS. He and my son bonded and became friends. It was his parents who years ago, after my son had spent the weekend with them, told me they thought he had TS. I was rather indignant, stating my son had ADD, CAPD, SID etc.......which were his 4-5yo diagnoses...............................

 

then came that time of his 10th birthday and the dramatic OCD/depression onset and the road to a diagnosis of the spectrum of disorders he has and the one for TS....

and the realizations that so much of what we had been labelling as "bad habits" or "disobedience" "difficult" etc were in fact truly things he "couldnt help" as he had told us time and time again

 

 

I dont know clearly know the trigger....a number of things overlapped at that time.....

but something switched on in my son overnight to bring out the full manifestations of his TS/OCD. I usually put those two together, although he has others, but I have realized that my son's tics and OCD are intertwined.

 

I strongly feel that it is likely manifestations of genetic disorders can be triggered by so many things, vaccinations, microbes, illness, allergens and chemicals in food and environment, trauma(physical and emotional), sensory issues etc etc etc. A lot of those things mess with the immune system too

 

I have often wondered why my oldest son never manifestTS, but youngest did, but I do see a mild OCD in oldest, and know I have that myself, as does my mom. I wonder too if maybe some things that I remember about cousins and an uncle on my dad's side could actually have been TS now.

 

so for us, myrose, the possible genetic trail has a lot more componants that you are seeing with the knowledge that your dad possibly had TS, I do know tho that genetics can play a role even when you dont have manifestations in each generation or close relatives. I am not very genetically clued up but I do know it is likely all to do with which dominants and recessives combine and also with those subtle changes in the genes that occur and then blend in the new individual.

 

anyway I am rambling....your post just reminded me so of the path we had been on before the TS dx

 

praying for you as you continue toward that light at the end of the tunnel ((((myrose))))

 

(ps you may want to link to this thread on the TS forum too as I know members there who maybe dont read here will be very interested to hear the connection you have found. )

[Betty04]

Well after 2 years of researching my families history and contacting one after another. I FINALLY got some answers today. Its been a long road and this person living in Germany was my last hope.

I have found out today that my Father displayed signs of Tourettes. He had a constant grunting tic and a movement in which he raised his thumb over his shoulder. No one knew this in my family and as I sit here thinking and thinking I think I may have remembered this but was always told he got it from the war. From the knowledge I have gained so far throughout this whole ordeal I have come to the conclusion that what I am being told is that my Dad indeed had tics and probably TS.

My parents were 22 years apart in age, the last time I saw my Dad....well I cannot remember. They divorced when I was really young.

It appears in his case the tics never went away and continued throughout his old age. My Father was born in 1925, he is still alive and from what I am told doesn't look a day his age at all.

So I guess I can somewhat understand where the tics came from now. What I am puzzled about is this:

My Father had two daughters with his first wife....he had my brother and I after he married my Mom. We later found out that he had another child that we never knew about. We did meet this grown man a few years back....he has 6 kids now....all boys.

So out of 5 children (2 boys, 3 girls) NO ONE else has tics or anything like it. Also my 1/2 sisters have 5 and 6 children...a mix of boys and girls....NO TICS. My brother has triplets (2 boys and 1 girl) NO TICS there either. I have only one little girl and she started the tics after her 9 shots.

I will also add that one of my 1/2 sisters daughters has 2 children of her own now as well....NO TICS!!

 

I have done EXTENSIVE research and probably spent most of my life on the phone the past few years gathering all I could from everyone.

NO ONE else in the family has tics, much less ever heard of them. How can this be. Why did the tics ONLY show up in my daughter.

Its sort of like it all made sense to me for a second but now I feel puzzled as can be again.

 

The only thing I can think of is that the 9 shots that day brought out the pre-dispostion of tics for her. I will add that no one in my family or there children EVER had a mix of 9 vaccinations in one day either.

 

I wonder also if I should have reported it or should report it to the CDC..maybe its too late?

I just cannot come to any other conclusion. She was normal before the shots that day. I will never forget it.

 

What does everyine think about it all.....it just does not make sense to me.

 

Myrose,

In case you don't know, you can look up adverse reactions reported for the 9 shots your daughter received. Just get a copy of her records and you can look it up by vaccine lot numbers to see if others reported any adverse reactions for those specific lot numbers. My son's adverse reaction to the flu shot was registered and there is detailed information about his reaction and others. Hope that is helpful?

[myrose]

Betty04,

Thanks so much for the information. I had no idea I could do this. How do I do it???

[myrose]

Chemar....I accidently placed my post on the Pandas board. I realized it only after reading your comment. How do I get the link on the TICS portion of the board? Just copy and paste? Thanks Cheri...

[Betty04]

Betty04,

Thanks so much for the information. I had no idea I could do this. How do I do it???

 

 

Myrose,

 

You can look adverse reactions up at the National Vaccine Information Center (NVIC, www.nvic.org). Here is the link below to enter the lot numbers specific to your daughter's vaccinations:

 

http://www.medalerts.org/vaersdb/hotlot.html

 

Let me know if I did not send the right links?!

[myrose]

Yes Thank You, the link was correct. I am now not sure how to get the lot numbers and manufacturer name???

 

I still do not know why she received 2 chicken pox shots. I always remembered it just being one.

 

Were your children/child given vaccinations? If so, did it include two of the Chicken Pox?

[Chemar]

myrose

I have merged your replies from the pandas board in here and left a redirect there for members to follow to the continuation here.

[faith]

myrose,

good detective work I must say. And I totally understand how you feel, I sometimes go as far to think things like "why do the moms I know that have 3 and 4 kids each and they have no issues, and I have one.........." But you know, then I think, there are many more issues that families have that we may not even be aware of. Which brings me to my reason for replying.... I am curious, are you physically in contact with all the family members that you spoke to and do you see the children of these people? I mean, is it possible that you got the whole truths, could anyone be holding back for the same reasons some of us here (myself included) do not really want to talk too freely about our kids and the ts issue? I have mentioned on other posts recently that I had noticed during the summer a facial grimace in my first cousin's son and a shoulder shrug in my nephew who is about 28. I have never been aware of this before and certainly never heard about it from anyone in the family if there was any issue with them as kids. I also do not definitively know of anyone in my family who may have had ts aside from a few "habits" I remember having as a child and some compulsions I have now....but where did I get them from?... Just some food for thought.

 

Faith

[lynsey]

Myrose:

 

The internet has oodles of websites that explain the latest findings about the causes of

Tourette's syndrome. Wikipedia netted it out quite well:

 

http://en.wikipedia.org/wiki/Causes_and_or...urette_syndrome

 

 

But most importantly, it points out that Tourette's Syndrome is a condition of "incomplete penetrance",

meaning that not everyone who inherits the genetic vulnerability will show symptoms.

In addition, Tourette's also shows "variable expression", which means that even family members with

the same genetic makeup may show different levels of symptom severity.

 

You were talking about your family, how it doesn't really fall into a pattern as regards to TS, I

think this is true of many families, for the reasons above.

My husband's father had mild tics (the family refuses to acknowledge this but I have observed it

myself). My husband has significant tics, our 2 sons have tics, my husband's two sisters show no evidence of tics, and his sister's daughter shows

no evidence of tics. This doesn't necessarily mean they don't carry the TS gene, but that they

are not showing symptoms, or are not showing symptoms that are noticeable.

 

Lynsey

[lynsey]

Also I read the primary characteristic of TS is that it is a neurobiological

disorder stemming from the abnormal metabolism of a common chemical

neurotransmitters - dopamine, and also seratonin and norepinephrin.

ADD similarly stems from this abnormal metabolism, which is why you

often see people with TS who also have ADD and other co-morbid conditions

such as OCD.

[myrose]

myrose,

good detective work I must say. And I totally understand how you feel, I sometimes go as far to think things like "why do the moms I know that have 3 and 4 kids each and they have no issues, and I have one.........." But you know, then I think, there are many more issues that families have that we may not even be aware of. Which brings me to my reason for replying.... I am curious, are you physically in contact with all the family members that you spoke to and do you see the children of these people? I mean, is it possible that you got the whole truths, could anyone be holding back for the same reasons some of us here (myself included) do not really want to talk too freely about our kids and the ts issue? I have mentioned on other posts recently that I had noticed during the summer a facial grimace in my first cousin's son and a shoulder shrug in my nephew who is about 28. I have never been aware of this before and certainly never heard about it from anyone in the family if there was any issue with them as kids. I also do not definitively know of anyone in my family who may have had ts aside from a few "habits" I remember having as a child and some compulsions I have now....but where did I get them from?... Just some food for thought.

 

Faith

 

 

Faith,

I was around pretty much around all of the family growing up. I even used to babysit my 1/2 sisters children. My brothers triplets I see only once a year now because we left New York. My brother and I talk almost everyday though and are very open. His wife is even recommending a shot schedule to her Ped that she feels comfortable with (just to be safe I guess)

I never noticed anything with my 1/2 sisters growing up nor my brother either. I also have a very close relationship with the brother we just found out we had last year. We talked about tics for quite sometime and for many many days. He was trying to help me figure it all out but we just never could find a connection (meaning a jerk, a twitch, a funny sound, ect.).

 

I guess what really puzzles me is that there are alot of kids (boys I might add) in the family from my Father and no one else showed signs. My Father obviosuly was never diagnosed either so I am mad about that. I would love to pick up the phone and track him down but I just can't. The conversation just would not go well or start well. In other words he would be of no help to me and no he doesn't seem to care about his grandchildren...much less his children.

 

I just don't understand either why my daughter never displayed vocals. Last year and before Topamax I even started tape recording whole nights at home thinking maybe we missed something. I always thought you had to have a vocal and a motor to qualify for tourettes. My Father apparently had a vocal and motor all the time, all day, but my daughter seems to not have vocals at all.

Now I really wonder about whats to come when we taper off from Topamax.

 

OH...Lastly...I have ocd tendencies, but everyone I know seems to have a little bit of it going on. We all have our thing I guess.

Gianna did some hand washing that lasted about a week and also displayed wanting perfection in her drawings but it never became a problem and went away quickly. I feel I am getting ready to close the book on this whole thing. Its just too much sometimes, it never ends, always something....do you know what I mean?

I know I need to be Thankful that my daughter has mild issued compared to some I read about but if only I could understand why, than maybe I would be able to deal with it all better.

Think I am rambling now...sorry

[myrose]

lynsey,

Do you think it is or could be possible that someone who has TS can only display OCD as a symptom and nothing else? Or only display ADHD and nothing else?? I hope I am making sense....sometimes I can't find the right words. My brain seems to be fried.

 

 

 

 

 

Also I read the primary characteristic of TS is that it is a neurobiological

disorder stemming from the abnormal metabolism of a common chemical

neurotransmitters - dopamine, and also seratonin and norepinephrin.

ADD similarly stems from this abnormal metabolism, which is why you

often see people with TS who also have ADD and other co-morbid conditions

such as OCD.

[Toms_Mom]

Re the vocals- My son has had motor tics since age 6 1/2-some minor tics at 5 we didn't recognize- he is now 8- turned 8 in August -and has just recently started vocals. From what I understand sometimes they start with the motor tics and then the vocals come later.

[lynnie1264]

Hi...

 

I believe in the whole "carry the gene with no symptoms". My older brother has TS, the only one of 5 kids who got it. Out of my 5 kids, only one has it. My brothers have 4 kids between them and none of them have it.

 

I'd say we could all be carrying the gene without showing it. My brother who has TS chose not to have children, so I can't comment on that part. But it does probably mean that any of my other 4 kids without TS could end up having a child with TS.

 

Is it possible that someone else in the family does have very minor tics that are barely noticeable? This happens so often, and it isn't til you really look for it that you notice things. Before my son started with the neck jerk thing, I would never have guessed he has TS. So id I'd been asked at that stage my answer would've been a huge "no".

 

This is an interesting thread...

Lyn.