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A question about age of onset?


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/hi everyone. :)

 

A friend of mine is a bit concerned that in last 5 months her 13 yr old son has developed what seems to be tics. He clears his throat, has a head/ neck jerk, hard eye blinking and has developed a stutter.

 

When she told me about this she was not aware that my son has tourettes {i don't see her often} but I said I would try and find out if the fact that he is 13 would make TS less likely. I know there is the chance that he has had very minor ticks that went unnoticed til now, we're just wondering what others think. Her DR doesn't know much and puts everything that's ever wrong with him down to hormones. She has read so much that says the onset is usually younger. I would appreciate any ideas here.

 

Thank you,

Lyn. :)

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Lyn,

Just quickly,

I would suggest to your friend to have him screened for celiac disease. I wrote a blog post last year that tells our story,

http://healthy-family.org/caryn/289

and in that article I mention a study that she might find particularly intriguing:

In 2006, Dr. Bruce Roseman, M.D. et al, created a brochure entitled: Pediatric Neurology and the Many Faces of Celiac Disease. In it he states, “We will present in our findings and show the need for all health care workers to be aware of the strong association between celiac disease and pediatric neurological problems in order to diagnose and treat children in a timely manner.” Here is an excerpt about a patient who tested positive for CD and presented with a progressive 6 week history of tics much like my son did:

 

“Case 4: An 11 yr male with IDDM who presented with a progressive 6 week history of neck tics. Patient would extend, flex, and rotate neck abruptly lasting for approximately 30 minutes. These movements were not associated with change of mental status. On review of symptoms patient complained of chronic abdominal pain, no nausea or vomiting. Patient had no recent history of Strep infection, excessive video game exposure or sleep deprivation. Irritable Bowel Syndrome diagnosed at 5 years of age. Paternal aunt had Celiac’s Disease. On physical exam patient had no focal neurological deficits. Investigation (revealed): Ig A level: <6 mg/dl; IgG: 1400 mg/dl; Anti-TTG IgA: <3, anti-gliadin Ig G: 19 U/ml, anti-gliadin Ig A, anti-reticulin Ig A and anti-endomysial: negative. Biopsy: flattening of villi.”

 

In our case no one in our family had ever been diagnosed with Celiac and we had no reason to suspect it. Now I have another relative recently diagnosed (within the last two months). Our son is consistent over the last year and a half without any wax on cycles as is typically noted by Pandas and T.S. parents. He had a neck turning tic early on before we changed his diet, along with a host of other movements. Now the most we will see is slight eye blinking when there is a slip in his diet. His road to recovery was long and adherence to the diet has to be strict, but the cure for us was nothing short of miraculous. We do gluten free, corn free and feingold over here.

On the first day of school (yesterday) the teacher gave our son a freeze pop-- not aware of the artificial colors or corn syrup in it. Amazingly he only had slight eye blinking afterwards. It was resolved by this morning. A year ago he would have had four or five tics and it would have lasted at least three, maybe four days.

Many on this forum have asked us if we planned to stick to the diet indefinitely. My answer is YES!!! It is working beautifully.

Good luck and hopefully your friend will find the answers.

Caryn

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--

Not sure about a link between strep and Celiac as far as scientific studies go, but I do know that chronic infections and bacterial problems are known catalysts for the onset of Celiac. I suppose it is a chicken and egg thing.

There are studies that link Gut Bacteria and Vit D deficiency in infancy to the onset of Celiac: http://www.celiac.com/articles/21605/1/Do-...ease/Page1.html

We were advised to check for Pandas in the beginning but our son did not have the classic titers. He did show that he was recovering from some kind of infection but his strep titers were not abnormal.

We never treated him with antibiotics for tics.

He did, however, have unusual amounts of antibiotics prescribed in his early years due to chronic and reoccurring illnesses brought on by his early diet which was high in gluten containing foods and milk. He was prone to ear infections and bouts of croup. I never had him tested for bad gut bacteria, but in hindsight I imagine that it was more than likely there but never caught. For all the antibiotics he was given I never gave him probiotics at all afterwards and never restricted known candida feeding foods.

I would say that adequate testing should be done to rule out Pandas just for your own sake. In many cases doctors (I've read) are now more likely to diagnose without elevated titers. In such a case I think I would then also try to rule out Celiac at that point just to be sure I have an idea of what's what, especially if it is in the family.

Caryn

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Lyn,

 

I have to ask, was your friends son immunized anytime within the past year? Do you know if he had any viral or bacterial illness prior to onset? Any injuries?

 

The only thing that I can add is that I had a very special friend who recently passed away unexpectedly, who developed extreme anxiety and tics after a case of naturally occuring chicken pox at around the same age. We have other parents here who have reported onset at a later age too.

 

If you can provide any other info about his circumstances, it may be helpful. Any high fevers lately? Mono?

 

 

Caryn,

 

Is celiac considered autoimmune? I didn't think it was, but in looking at the site that you linked, it almost looked like an autoimmune component is suspected?

 

This study looked interesting. There's the anti-ganglioside thingies again (PANDAS?). I'll post below what wiki says about ganglioside. This was the definition that I found for haptenization that is referred to in the study below

 

The combination of an antigenic compound with a carrier protein molecule, intended to achieve a high enough molecular weight to stimulate an immune response.

 

http://www.ncbi.nlm.nih.gov/pubmed/16766047

 

Transglutaminase-independent binding of gliadin to intestinal brush border membrane and GM1 ganglioside.Alaedini A, Latov N.

Department of Neurology and Neuroscience, 1300 York Ave, Weill Medical College of Cornell University, New York, NY 10021, USA. ara2004@med.cornell.edu

 

Anti-ganglioside antibodies have been described in celiac disease or gluten sensitivity, in conjunction with the presence of central and peripheral nervous system deficits. The observed antibody reactivity to gangliosides is postulated to be related to the anti-gliadin immune response, either through antigenic mimicry, or by formation of gliadin-ganglioside complexes and haptenization. We examined the possibility of the presence of ganglioside-like epitopes in gliadin, as well as the potential for complex formation between gliadin and GM1 ganglioside. Low levels of glycosylation were present in gliadin, but ganglioside-like carbohydrate epitopes were not detected. However, gliadin was found to bind to GM1 ganglioside and to the GM1-rich intestinal brush border membrane. The described complex formation and possible haptenization of GM1 by gliadin may be responsible for driving the anti-ganglioside antibody response in some patients with gluten sensitivity. Furthermore, binding of gliadin to GM1 on the intestinal epithelium might have a role in the anti-gliadin immune response and contribute to the intestinal inflammatory reaction in celiac disease.

 

http://en.wikipedia.org/wiki/GM1

 

GM1 (monosialotetrahexosylganglioside) the "prototype" ganglioside, is a member of the ganglio series of gangliosides which contain one sialic acid residue. GM1 has important physiological properties and impacts neuronal plasticity and repair mechanisms, and the release of neurotrophins in the brain. Besides its function in the physiology of the brain, GM1 acts as the site of binding for both Cholera toxin and E. coli heat-labile enterotoxin (Traveller's diarrhea).[1]

 

Antibodies to GM1 are increased in Guillain-Barré syndrome, dementia and lupus but their function is not clear.[2] There is some evidence to suggest these antibodies are associated with diarrhoea in Guillain-Barré syndrome.[3]

 

http://en.wikipedia.org/wiki/Ganglioside

 

Ganglioside is a compound composed of a glycosphingolipid (ceramide and oligosaccharide) with one or more sialic acids (AKA n-acetylneuraminic acid) linked on the sugar chain. The 40+ known gangliosides differ mainly in the position and number of NANA residues.

 

It is a component of the cell plasma membrane which modulates cell signal transduction events. It appears they concentrate in lipid rafts.

 

They have recently been found to be highly important in immunology. Natural and semisynthetic gangliosides are considered possible therapeutics for neurodegenerative disorders

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Thank you everyone for your help!!! :)

 

Kim, I know that he has been sick, he's missed a fair bit of school. My friend did mention how he's had strep {i found that interesting} and I mentioned to her what I knew from this site... she had no idea of any connection there. Because I'm not around them all the time it's hard for me to know, she has just said he has had a few bouts of sickness lately. He's been on antibiotics quite a bit too. Not sure about the immunisation, I'll ask her.

 

Another thing worth looking into is the celiac disease. {not sure I spelt that correctly}

 

This is a side I don't know much about as my son has straight out TS it seems.

 

Thank you everyone for your comments, it's a great help and I'll certainly pass all the info on to her.

 

I also know he has been very stressed as his mum is having big problems with her current partner, I guess this could contribute too, hey?

 

Thanks again,

Lyn.

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Kim,

I realize this thread is getting a bit further and further off topic--

But just briefly,

Yes, Celiac is an autoimmune disease, and is also associated with the development of other autoimmune disorders. It is believed the celiac comes first but the diagnosis of the other autoimmune disorders are discovered long before the celiac is.

In our case the gene that my son has for celiac is the trademark gene that causes other autoimmune disorders to develop. (There are something like 9 celiac genes.)

Tigger won the lottery, unfortunately.

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