new here...son was diagnosed with TS

[hsingmommy]

Hello everyone! Our son was recently given a "clinical" diagnosis of Tourette Syndrome based solely on what I told the pediatric neurologist. This has outraged my husband and I. We thought he would be more thorough and do further testing to rule out anything else. Our son started having tics at age 4 and started with eye blinking/twitching. It then moved on to facial grimacing and more recently arm/leg jerks. He's also had a habit of sniffling (hard to rule if it's allergies or TS) and throat clearing. So, after I shared the story with him, he said, "I will give you a clinical diagnosis of TS. It will wax and wane, and it can be mild, moderate, or severe. There's no need for medication b/c it's not interfering right now (we are adamant about no meds anyway b/c of everything we have read), and there's no need to come back in unless you feel you need to see us again later on if things change."

 

He's now 6.5, and he has had periods of non tic movement. However, we aren't sure if that was because he suppressed it or if it did it's waxing and waning. Until we knew what we were dealing with, we unfortunately would fuss at him for his movements. Now that everything has come into place, we now accept that it is what he does.

 

He has good days and bad days. There are days we hardly notice his tics, and then there are days when everyone he's around notices them. We're heartbroken to see him going through this, but we also know that God has a plan.

 

We are in the process of seeking a 2nd opinion because we were not happy with the pediatric neurologist. We know that we will probably have to drive a good 2 hours north for that 2nd opinion, but we're fine with that.

 

Anyway, I just wanted to share a little of our story and introduce us.

Thanks for reading!

Sherrie

[sf_mom]

Sherrie,

 

You should really rule out ALL possibilities for the cause of your son's TICS prior to accepting TS diagnoses. Our son started out with a coughing TIC at age 4 1/2 and exploded with multiple TICs/OCD at age 5 1/2 shortly after an illness. What we now realize is our son was exposed to a child with Acute Rheumatic Fever at age 3.75 and had a delay auto-immune response at age 4 1/2 'first tic'. It turns out in our situation, it was all strep related!!!!!!!!!! Our son just turned 6 and has been treated for PANDAS for the last six month and is 98% recovered.

 

There are many possible causes for your son's illness. I recommend you check into the PANDAS and PITANDS section of this forum for further possibilities and understanding.

 

http://www.latitudes.org/forums/index.php?showtopic=6265

 

-Wendy

 

Hello everyone! Our son was recently given a "clinical" diagnosis of Tourette Syndrome based solely on what I told the pediatric neurologist. This has outraged my husband and I. We thought he would be more thorough and do further testing to rule out anything else. Our son started having tics at age 4 and started with eye blinking/twitching. It then moved on to facial grimacing and more recently arm/leg jerks. He's also had a habit of sniffling (hard to rule if it's allergies or TS) and throat clearing. So, after I shared the story with him, he said, "I will give you a clinical diagnosis of TS. It will wax and wane, and it can be mild, moderate, or severe. There's no need for medication b/c it's not interfering right now (we are adamant about no meds anyway b/c of everything we have read), and there's no need to come back in unless you feel you need to see us again later on if things change."

 

He's now 6.5, and he has had periods of non tic movement. However, we aren't sure if that was because he suppressed it or if it did it's waxing and waning. Until we knew what we were dealing with, we unfortunately would fuss at him for his movements. Now that everything has come into place, we now accept that it is what he does.

 

He has good days and bad days. There are days we hardly notice his tics, and then there are days when everyone he's around notices them. We're heartbroken to see him going through this, but we also know that God has a plan.

 

We are in the process of seeking a 2nd opinion because we were not happy with the pediatric neurologist. We know that we will probably have to drive a good 2 hours north for that 2nd opinion, but we're fine with that.

 

Anyway, I just wanted to share a little of our story and introduce us.

Thanks for reading!

Sherrie

Edited April 10, 2010 by SF Mom

[Chemar]

Hi and welcome

 

where I absolutely agree it is always worth checking whether there may be PANDAS or PTAND, yet there are also many other possible causes for tics, including genetic Tourette Syndrome, allergies( food and/or environmental), photosensitivity, TMJ and many more, as well as the ubiquitous "transient tics"

 

I do think that doctor was too quick to give a TS diagnosis tho, and hope you will keep looking into other possible causes

[hsingmommy]

Chemar -- there are no cases of TS in our family history that we are aware of...that's why we're really puzzled by all of this. Granted, there could be some distant relative that has TS that we have no clue about, but there are no cases that we know of.

 

We, too, think that maybe there's more to this situation. Our son hasn't even been tested for ADHD (although I won't argue that we've wondered), and the doctors haven't done any other testing either. No allergy testing, hormonal testing (refer to other thread), etc.

 

We are so hoping that a 2nd opinion will be more thorough and extensive and look at our WHOLE child and not just the tics. I think my DH is headed into the pediatrician's office this week to express his concerns and get the ball rolling faster.

 

I have heard about PANDAS, but from what I can remember, our son has had strep once. So, I'm not sure if that could be related or not. I would hope that the doctor would again do testing to rule it out.

 

We're also curious about some sensory issues that we've noticed and are just now making sense. Our DS would freak out and have crying fits about his socks aggravating him. He'd also complain about the tags in his shirts. More recently, he has expressed complaints about his underwear bothering him. So, we're not sure if there's an underlying sensory issue as well. It's all so darn overwhelming, and it's all so new to us!

 

Thanks for your replies!

Sherrie

Edited April 11, 2010 by hsingmommy

[sf_mom]

Here is an easy to understand article regarding PANDAS. The tipping point could have been the initial strep infection, there could be co-infections, it could be lyme, etc. If you do not have a genetic history of TS, I recommend you keeping searching for answers. Keep reading the PANDAS and PITANDS section of this forum and I think will find very similar stories.

 

 

PANDAS is controversial in medical circles with some physicians questioning whether such extreme psychiatric symptoms can be triggered by strep antibodies. However, according to Dr. Swedo, there is little doubt that the body's efforts to fight the strep bacteria set off a chain of events leading to PANDAS symptoms. "The science is clear now," Swedo asserts. "We not only have a direct relationship between the anti-strep antibodies and the anti-neuronal antibodies, but also have demonstrated that the antibodies interact with receptors in the brain that could produce the symptoms observed."

 

Normally when the strep bacteria enter the body, they defend themselves by mimicking healthy cells and elude detection by the immune system. Using the stealth strategy, the strep bacteria create an infection. In response, the body naturally creates antibodies - cellular components designed to find the bacteria, bind with them and direct the immune system to destroy the bacteria. When this happens as designed, the antibodies find the strep bacteria and the immune system wins the battle.

 

However, antibodies are not terribly discriminating and sometimes cannot tell a streptococcus bacterium apart from a healthy cell. In some children, these antibodies pass into the brain and look for something to connect with. In PANDAS, the strep antibodies are unable to discriminate between strep and healthy brain cells. However, the union of strep antibody and neural tissue is not a match made in heaven. Recent research, reported last fall by University of Oklahoma researcher, Madeleine Cunningham, suggests that the antibodies connect with parts of the brain which regulate repetitive behaviors and movement, such as compulsions and tics. According to Dr. Swedo, such autoimmune actions may have the direct result of producing obsessions, compulsions and tics; and in addition, they might indirectly offset the critical balance of brain chemistry which regulates mood and emotion.

 

Compounding the problem is the durability of strep antibodies. They can remain on the prowl for a hook up weeks after the strep is gone. Subsequent infections or even colds can stimulate the immune system to produce more of the same kind of antibodies which the triggered the original symptoms. PANDAS children can then abruptly re-experience the same symptoms after a symptom-free span of time. Dr. Swedo explained, "We see a saw-toothed pattern of symptoms, extreme outbursts of behaviors for a brief period in response to the infections and then the child may be relatively symptom-free for a period of time."

 

http://www.christianpost.com/blogs/health/...c-09/index.html