Back again...

[Tattoomom]

I was here on this forum back in 2007. My original post is here-

 

http://www.latitudes.org/forums/index.php?...amp;#entry15688

 

Ethan is now 8 years old. To bring you up to speed... we put Ethan on a gluten free/casein free diet the summer of 2007 and he did great on the diet, tics were basically nonexistent!! His behavior was still rotten but I was thrilled to see such a reduction in his tics. We decided to take him off the diet in October 2008 to see if the tics would come back and they did. He started blinking again in December, but that coincided with him getting a Wii for Xmas so I wasn't sure if it was food or the video games. We decided to keep him off the diet despite the blinking. Gluten free food is so very expensive and this kid eats A LOT! Anyway, what is so wild is he blinked from December until February and then it stopped for no reason I can find. He was eating what he wanted, he was playing video games, he was stressed due to his baby sister having medical problems, he was being tested at the end of the school year (we homeschool but I paid a teacher to test him) and he did not tic once. He was tic free from February until August and then he started blinking again.

 

In September, he developed a new tic, an eye roll. He did this a very short time (I'd say a couple weeks) and it went away. In October, the blinking came back with some minor throat clearing. In November, he started doing something new, a finger flick. He looks like he's trying to flick something off his finger and he does this on every finger on both hands. And just this past week, he started doing a shoulder/chest shrug where he looks like he's trying to adjust his shirt, but it's clearly a tic.

 

I have definitely noticed his tics flare up right after he's been sick. He had Swine Flu in October and since then, he's had several tics, new ones.

 

I said in my original post in 2007 that there was no family history of TS or tics but just recently learned that my husband (Ethan's father) had tics as a child. Not sure exactly what kind of tics he had but he does remember having a vocal tic, some kind of clicking noise. Obviously they were transient and went away because I've never seen him tic, ever!

 

I'm so confused!

 

~Does Ethan sound like TS? He had a long break this past year(6 months) but has ticced for almost 3 years now on and off, both motor and vocal.

~Would my husband have a TS gene but only got transient tics from it? Or are transient tics not related to a gene?

~Should I try to find a way to put Ethan back on the diet, even though we really cannot afford it?

 

I'm doing Natural Calm, Epsom salt soaks and we try to eat as clean as possible.

 

Ethan sees a psychiatrist (who also tics!) and he put him on Zoloft for his anxiety/tantrums. I've been very reluctant to try meds but caved and took the prescription this time. He took his first dose this morning.

 

I'm worried about him and just feel overwhelmed all over again just like I did in 07 when this started! My husband doesn't understand why Ethan's tics bother me so much. I guess as his mother, I just want to fix everything for him.

[lukes_mom]

Have you considered the possibiity of PANDAS? I don't know, but it sounds entirely possible with the lapse in symptoms and the fact that he gets worse after being sick. There is a PANDAS section on the ACN forum.

 

I was here on this forum back in 2007. My original post is here-

 

http://www.latitudes.org/forums/index.php?...amp;#entry15688

 

Ethan is now 8 years old. To bring you up to speed... we put Ethan on a gluten free/casein free diet the summer of 2007 and he did great on the diet, tics were basically nonexistent!! His behavior was still rotten but I was thrilled to see such a reduction in his tics. We decided to take him off the diet in October 2008 to see if the tics would come back and they did. He started blinking again in December, but that coincided with him getting a Wii for Xmas so I wasn't sure if it was food or the video games. We decided to keep him off the diet despite the blinking. Gluten free food is so very expensive and this kid eats A LOT! Anyway, what is so wild is he blinked from December until February and then it stopped for no reason I can find. He was eating what he wanted, he was playing video games, he was stressed due to his baby sister having medical problems, he was being tested at the end of the school year (we homeschool but I paid a teacher to test him) and he did not tic once. He was tic free from February until August and then he started blinking again.

 

In September, he developed a new tic, an eye roll. He did this a very short time (I'd say a couple weeks) and it went away. In October, the blinking came back with some minor throat clearing. In November, he started doing something new, a finger flick. He looks like he's trying to flick something off his finger and he does this on every finger on both hands. And just this past week, he started doing a shoulder/chest shrug where he looks like he's trying to adjust his shirt, but it's clearly a tic.

 

I have definitely noticed his tics flare up right after he's been sick. He had Swine Flu in October and since then, he's had several tics, new ones.

 

I said in my original post in 2007 that there was no family history of TS or tics but just recently learned that my husband (Ethan's father) had tics as a child. Not sure exactly what kind of tics he had but he does remember having a vocal tic, some kind of clicking noise. Obviously they were transient and went away because I've never seen him tic, ever!

 

I'm so confused!

 

~Does Ethan sound like TS? He had a long break this past year(6 months) but has ticced for almost 3 years now on and off, both motor and vocal.

~Would my husband have a TS gene but only got transient tics from it? Or are transient tics not related to a gene?

~Should I try to find a way to put Ethan back on the diet, even though we really cannot afford it?

 

I'm doing Natural Calm, Epsom salt soaks and we try to eat as clean as possible.

 

Ethan sees a psychiatrist (who also tics!) and he put him on Zoloft for his anxiety/tantrums. I've been very reluctant to try meds but caved and took the prescription this time. He took his first dose this morning.

 

I'm worried about him and just feel overwhelmed all over again just like I did in 07 when this started! My husband doesn't understand why Ethan's tics bother me so much. I guess as his mother, I just want to fix everything for him.

[Fixit]

Hi Tattoomom,...I'm so sorry you had to come back...

As far as the genetics, I could be wrong, but i don't think there's a gene...

So far i think its immune, celiacs, allergy(food, pollens), toxins, structural (tmj), infections(strep, virus),,some tendency or predispostion that gets triggered by something, due to inflammation of some avenue.

I agree with lukesmom it's so hard!

[Chemar]

As far as the genetics, I could be wrong, but i don't think there's a gene...

So far i think its immune, celiacs, allergy(food, pollens), toxins, structural (tmj), infections(strep, virus),,some tendency or predispostion that gets triggered by something, due to inflammation of some avenue.

 

the genetics of celiac disease and and many autoimmune disorders is already determined

and there is already much documented research and evidence on Tourette Syndrome genetics

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1683024/

 

http://www.tourette-syndrome.com/ts_genetics.htm

 

Genetic Markers in TS

 

Gene Map

 

there are many more references

 

you can also check the research at the Tourette Syndrome Association for information on the genetics

http://www.tsa-usa.org

 

 

that is what "predisposition" is often all about....genetics.

[Chemar]

I was here on this forum back in 2007. My original post is here-

 

http://www.latitudes.org/forums/index.php?...amp;#entry15688

 

Ethan is now 8 years old. To bring you up to speed... we put Ethan on a gluten free/casein free diet the summer of 2007 and he did great on the diet, tics were basically nonexistent!! His behavior was still rotten but I was thrilled to see such a reduction in his tics. We decided to take him off the diet in October 2008 to see if the tics would come back and they did. He started blinking again in December, but that coincided with him getting a Wii for Xmas so I wasn't sure if it was food or the video games. We decided to keep him off the diet despite the blinking. Gluten free food is so very expensive and this kid eats A LOT! Anyway, what is so wild is he blinked from December until February and then it stopped for no reason I can find. He was eating what he wanted, he was playing video games, he was stressed due to his baby sister having medical problems, he was being tested at the end of the school year (we homeschool but I paid a teacher to test him) and he did not tic once. He was tic free from February until August and then he started blinking again.

 

In September, he developed a new tic, an eye roll. He did this a very short time (I'd say a couple weeks) and it went away. In October, the blinking came back with some minor throat clearing. In November, he started doing something new, a finger flick. He looks like he's trying to flick something off his finger and he does this on every finger on both hands. And just this past week, he started doing a shoulder/chest shrug where he looks like he's trying to adjust his shirt, but it's clearly a tic.

 

I have definitely noticed his tics flare up right after he's been sick. He had Swine Flu in October and since then, he's had several tics, new ones.

 

I said in my original post in 2007 that there was no family history of TS or tics but just recently learned that my husband (Ethan's father) had tics as a child. Not sure exactly what kind of tics he had but he does remember having a vocal tic, some kind of clicking noise. Obviously they were transient and went away because I've never seen him tic, ever!

 

I'm so confused!

 

~Does Ethan sound like TS? He had a long break this past year(6 months) but has ticced for almost 3 years now on and off, both motor and vocal.

~Would my husband have a TS gene but only got transient tics from it? Or are transient tics not related to a gene?

~Should I try to find a way to put Ethan back on the diet, even though we really cannot afford it?

 

I'm doing Natural Calm, Epsom salt soaks and we try to eat as clean as possible.

 

Ethan sees a psychiatrist (who also tics!) and he put him on Zoloft for his anxiety/tantrums. I've been very reluctant to try meds but caved and took the prescription this time. He took his first dose this morning.

 

I'm worried about him and just feel overwhelmed all over again just like I did in 07 when this started! My husband doesn't understand why Ethan's tics bother me so much. I guess as his mother, I just want to fix everything for him.

 

Hi Tatoomom

 

so sorry things took a downturn again

 

I do agree that it would be worth checking into possible PANDAS/PITANDS connection as usually with TS one doesnt see that kind of "remission" ...

 

you may also want to check in with member Caryn as she is very clued up re celiac/gluten intolerance.

It honestly wouldnt surprise me that you would see this pattern is by chance your child is gluten intolerant as sometimes a build up of allergens can have a delayed reaction re triggering things

 

I know the term transient tics is used often by doctors, but to me it has always seemed there must be an underlying cause for them. It is great that they resolve for many people (eg your husband) but seem to also sometimes resurface as you are seeing with Ethan.

 

so sleuthing to find that trigger (or triggers....) is the only way to go...along with keeping his diet and environment as trigger free as possible while you look for clues.

 

btw do just keep a cqreful eye on his reaction to the zoloft...he may be fine with it but SSRIs do bring big side effect risks and one also needs to come off them very gradually, so work up slowly so you can come down faster if you see he isnt tolerating it well

 

there is a new research study out about personality changes with SSRIs, and more warnings re their use in young people....so just be watchful. hopefully he will tolerate it well and be helped by it

 

all the best and hope you find what is causing the relapse

[Tattoomom]

Thanks guys.

 

Back in 2007 when this all started, he was tested for PANDAS. -Anti-Streptolysin & DNASE B Antibody blood work was NEGATIVE-

 

The weird thing is... his younger sister is going to the doctor later today for fever & sore throat so I'm taking him with me to get swabbed, too.

 

 

Should I be relieved that his father outgrew his tics during childhood or does that have no baring on Ethan's future?

[Chemar]

check the PANDAS board...seems the negative blood test results are no longer considered a totally reliable method to rule out a possible PANDAS case

[Fixit]

Thanks Chemar,

 

i have a few questions as my head is flooded and the hamster can bearly stay awake in the carasel...

 

is this the genetic link D3 or are they still looking for it, or they've excluded 60% and are still looking

 

"Molecular Genetic Studies: The TS Genetic Consortium has pursued a total genomic search in 11 large families from the United States, Canada, the Netherlands, and Norway and tested over 600 genetic markers under the assumption of genetic homogeneity and incompletely penetrant autosomal dominant single major locus inheritance [448, 449]. Over 90 percent of the genome has been excluded [450]. Comings and colleagues [451] reported increased homozygosity for the D3 receptor gene, but there has been at least one failure to replicate [452].

 

A role in linkage analysis has been excluded for several genes involved in catecholamine (D1-D5 receptors and DBH, DAT, TY, and TH genes) [453-457] and serotonin (5-HT1A receptor, tryptophan oxygenase) [458] pathways, under incompletely penetrant autosomal dominant or intermediate major locus models. There have been several reports describing chromosomal abnormalities in single TS patients, including a 9p deletion [459], an 18q deletion [460], t(7;18) translocation [461], and a 46 XY, t(3:8) (p21.3 q24.1) balanced translocation [462-464]. Although a positive multipoint lod score of 2.9 was initially obtained on 3p in several pedigrees [462], subsequent analyses using improved map data and additional markers led the authors to conclude that this region was not involved in the etiology of TS [464]. A YAC spanning the translocation breakpoint at 18q22.3 in the TS proband carrying the balanced t(7;18) translocation [461] was identified; among the limited number of relatives in the family studied, no one without the translocation was diagnosed with TS [465]. Co-segregation of the translocation with TS of course could be coincidental, especially given that the frequency of a carrier of a balanced translocation in the population is about 1 in 1, 000."

 

And then in this study http://www.sciencedirect.com/science?_ob=A...cd3de685942f3c7

 

it talks about a brain inbalance developementally? and plasticity...that's what the brain balance program tries to adress....which we did..his tics did not go away which was our main concern....some teachers were a little concerned in 1,2,3 grades about add/or adhd and we don't seem to have that this year??? easy going teacher, he grew up, or brain balance???? accounding to what they say we scored him and the scored him?????

 

We just have these crazy tics????

 

Or is this it???

 

.0001 TOURETTE SYNDROME [sLITRK1, 1-BP DEL, 1264C]

In a boy with Tourette syndrome (137580) and ADHD (143465), Abelson et al. (2005) identified the deletion of a cytosine at nucleotide 1264 of the SLITRK1 gene, resulting in a frameshift at codon 421. If stable, this frameshift would result in 27 amino acid substitutions, followed by a premature termination codon. The truncated protein would lack a substantial portion of the second LRR domain as well as its transmembrane and intracellular domains. The mutation was also found in the proband's mother, who suffered from severe trichotillomania. The mutation was not found in 3,600 control chromosomes.

 

.0002 TOURETTE SYNDROME [sLITRK1, +689G-A, 3-PRIME UTR]

In 2 unrelated individuals with Tourette syndrome (137580), Abelson et al. (2005) identified a G-to-A substitution in the 3-prime UTR of the SLITRK1 gene at position +689 from the TAA stop codon. This variant, termed var321, replaces a G:U wobble base pair with an A:U Watson-Crick pairing at position 9 of the miRNA189 binding domain within SLITRK1. In 1 of the families, this mutation was also identified in the proband's mother, who had facial tics. This variant was absent from 4,296 control chromosomes, demonstrating a statistically significant association with Tourette syndrome (p = 0.0056; Fisher's exact test).

 

AND I AM SO TIRED does this explain his tic to pandas....or just 5 or 8 coinsiccdences, or allergies?

 

AND i don't want it to be this kind of genetics...but can we get tested, I just want someone to give me some answers And so if it is genetic in this manner as opposed to Low Iga levels...and praying my son who is so smart, FUNNY, and kind, can have a normal life and get married, he could then do genetic testing so he and his kids won't have to go through this!!!!

 

Thanks again!