8 yr old boy just diagnosed with tics - new member

[Dedee]

I'll give you my opinion / suggestion. I would fire the jerk neurologist first thing. Then find someone informed who will take the situation and your concerns seriously. I can not tell you if it is a case of PANDAS or not. I can tell you that you deserve to find answers without uninformed health care professionals giving you ignorant opinions. Certainly there is enough concern here to warrant further investigation by someone who has knowledge and experience in this area. I wouldn't hesitate to seek out a recommendation of someone that you know will take you seriously. I would stop wasting time on closed minded idiots who think they are helping their patients and find someone who you know will be their for your family. I don't know where my family would be now if it weren't for the wonderful recommendations that we received here. Good luck to your family and keep up the hard work. It will pay off.

 

Dedee

[littleDaniel]

I'll give you my opinion / suggestion. I would fire the jerk neurologist first thing. Then find someone informed who will take the situation and your concerns seriously. I can not tell you if it is a case of PANDAS or not. I can tell you that you deserve to find answers without uninformed health care professionals giving you ignorant opinions. Certainly there is enough concern here to warrant further investigation by someone who has knowledge and experience in this area. I wouldn't hesitate to seek out a recommendation of someone that you know will take you seriously. I would stop wasting time on closed minded idiots who think they are helping their patients and find someone who you know will be their for your family. I don't know where my family would be now if it weren't for the wonderful recommendations that we received here. Good luck to your family and keep up the hard work. It will pay off.

 

Dedee

Hi Dedee,

We are taking little Daniel and his younger sister in today and request a throat culture for strep. Hopefully, the doctor's ablige to our request.

Thank you for the recommedations and comments. Many of Daniel's actions fall into the Pandas description so we would like to find out if he is or isn't.

[Caryn]

Our son had frequent urination and OCD-like tendencies prior to his dietary changes. What kind of allergy test did you get done? Was it and IgE or IgG? In our case the IgG test showed gluten intolerance and corn intolerance, two key triggers that when removed caused our son to go into what I consider 'remission'. We had a sudden onset too but had normal strep titers. We also felt in the beginning that we might be dealing with PANDAS but now I am confident that our son's triggers are not related to strep specifically or fall into the categories that are set up for proper diagnosis of the condition. Our doctors were also conservative on the PANDAS criteria. Both believe in it but felt in our case our son did not present with enough symptoms. In many cases the symptoms can overlap with the two conditions (OCD is present in both sometimes). It is hard to know. Just go with your gut instincts and be very observant of possible triggers. Strep is very common in the general population.

I just recently made a new post, if you'd like to check it out. Sheila Rogers is coming out with a new book about Natural Treatments for Tics and Tourette's (she is the owner of this board). Her first book was very instrumental in helping us find the causes and for getting the condition under complete control.

Our son is doing fantastic now and is completely tic free, has no symptoms of ADHD, sleep problems, or behavioral concerns. He is happy and well adjusted. It was a long, slow recovery process for us and we waded through a lot of confusing information and did try different treatments before we settled into our most successful regime. I think the anxiety is the worst when you don't know what is causing it and feel like things are totally out of control. The stress alone will make him worse. Just keep reading as much as you can about it and continue to get the testing done that you are doing.

http://healthy-family.org/caryn/704

[EAMom]

Hi LittleDaniel,

I posted a follow-up to this discussion on the PANDAS section of this forum (since PANDAS and Tourettes are now separate). It was mainly for CollenRN but you also may find it to be of interest.

[Chemar]

Sheila Rogers is coming out with a new book about Natural Treatments for Tics and Tourette's (she is the owner of this board). Her first book was very instrumental in helping us find the causes and for getting the condition under complete control.

 

http://healthy-family.org/caryn/704

 

Hi littleDaniel

 

it is good that you are exploring all possible answers and getting the allergy testing done as well as checking re strep. Sometimes so many of the symptoms overlap and so one really has to be very careful to get an accurate professional diagnosis and correct treatments. And often kids can have more than one issue so good to check as many areas as possible.

 

 

I noticed Caryn mentioned Sheila's book and wanted to also give the link to it for you as it has a wealth of information

http://www.latitudes.org/book.html

 

all the best to you and I hope you will soon see that light at the end of the tunnel

[Caryn]

littledaniel,

I also wanted to link you to an article I found while researching PANDAS for ourselves. The diagnostic criteria can be taken liberally by some medical professionals--

 

PANDAS May Be Overdiagnosed, Contributing to Overuse of Antibiotics

Paula Moyer, MA

Information from Industry

The largest trial of its kind involving adults with ADHD

View the study design and results of the largest placebo-controlled stimulant trial of adults with ADHD.

Read more

 

November 2, 2006 (San Diego) — The pediatric autoimmune condition known as PANDAS may be overdiagnosed and the overdiagnoses, in turn, may be contributing to the overuse of antibiotics, according to a team of investigators who presented their findings here at the 53rd annual meeting of the American Academy of Child and Adolescent Psychiatry.

 

PANDAS stands for pediatric autoimmune neuropsychiatric disorders associated with streptococcus, and it is characterized by the acute onset of obsessive-compulsive disorder or tic disorder in a patient who has group A beta-hemolytic streptococcal (GABHS) infection. The study investigators were concerned that the PANDAS diagnosis had been widely adopted in the community without confirmatory scientific evidence, and that antibiotics were being used to treat it without empirical justification.

 

"Our findings showed that PANDAS may be diagnosed in the community before they have met the diagnostic criteria," said Barbara Coffey, MD, MS, in her presentation. Nearly one third of patients diagnosed with PANDAS in the community may not meet those criteria, she and her colleagues found. Dr. Coffey is an associate professor of psychiatry at New York University in New York City.

 

The investigative team conducted a retrospective chart review of 176 subjects seen at New York University's Child Study Center. The subjects met the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision, criteria for obsessive-compulsive disorder, tic disorder, or both. The center used diagnostic criteria for PANDAS that were based on research criteria established in 1998 known as the Swedo criteria for their founder, Susan Swedo, MD, from the National Institute of Mental Health. The Swedo criteria are as follows:

 

* presence of obsessive-compulsive disorder, tic disorder, or both;

* with prepubertal onset;

* sudden, severe symptom onset and an episodic course characterized by remissions and abrupt exacerbations;

* a link in time between either the symptom onset or exacerbation and a GABHS infection;

* adventitious movements or clumsiness.

 

Among the children in the review, 30 (17.05%) had received a PANDAS diagnosis in the community. However, when the staff at the center applied the Swedo criteria, the PANDAS diagnoses were reduced to 19 (10.9%). Within the original 30, 18 who were diagnosed with PANDAS did not meet the criteria used by Dr. Coffey and her team. The remaining 7 patients who were diagnosed by the staff had not received that diagnosis in the community.

 

Of the 18 patients with the PANDAS community diagnosis that did not meet the center's criteria, 13 of them (72%) were treated with antibiotics or immunosuppressants. Subjects who got the diagnosis in the community were significantly more likely to be treated with antibiotics or immunosuppressants (P < .001).

 

"Is PANDAS overdiagnosed? Yes and no," said Tanya K. Murphy, MD, in a phone interview seeking independent commentary. "A lot of primary care pediatricians have not even heard of it, therefore not looking for it and diagnosing it. Some of the primary care doctors use the criteria of high titers and obsessive-compulsive disorder," she said. Dr. Murphy, who was not involved in the research, is an associate professor and chief of child and adolescent psychiatry and director of the anxiety disorders clinic at the University of Florida in Gainesville.

 

"The investigators say that 17% received a community diagnosis and 11% received a research center diagnosis," Dr. Murphy said. "That's not a huge discrepancy, but the primary care physicians may use weaker criteria."

 

The gap reflects the fact that PANDAS still has nebulous criteria that may need more refining, Dr. Murphy pointed out. "I have followed over 100 patients with PANDAS presentations prospectively. Whether the diagnosis is appropriate depends on how long the patients have had the illness."

 

Dr. Murphy continued, "If you look at the younger age group, probably up to 25% to 30% of those with obsessive-compulsive and tic disorders would meet the PANDAS criteria. If you look at older children, the 11% is probably what I am seeing as well." Sudden onset should cause a suspicion, she said, noting that testing titers can help hone the diagnosis if the titers are high for 2 tests taken 4 to 8 weeks apart.

 

In children with PANDAS, the standard interventions for obsessive-compulsive and tic disorders are effective, Dr. Murphy said. These consist of cognitive-behavioral therapy, reversal therapy in the case of tic disorders, and pharmacologic therapy.

 

"Just because they have PANDAS doesn't mean you should withhold established treatments," Dr. Coffey agreed. "Cognitive-behavioral therapy can help prevent a more severe episode in the future."

 

AACAP 53rd Annual Meeting: Abstract C21. Presented October 26, 2006.

 

The article is posted in Medscape: http://www.medscape.com/viewarticle/547096

 

I agree with Cheri, you have to look into the many possible causes and get as much testing done as possible.

[lurker]

Interesting citation, Caryn.

 

Dr. Murphy's estimation of 11% to 30% actually surprised me a little though. Susan Swedo, herself, has conceded that she believes only 2% to 5% of OCD and tic disorders to meet PANDAS criteria -- that leaves a lot of other possibilities.

[littleDaniel]

Has anyone looked into the claims for curing tics by the following website www.facialtics.org.url? They are offering to sell a book with the answers.

[Chemar]

they also offer money back if not satisfied and one of our members is still waiting for that

 

be very very careful of people selling "cures"

most of these books contain info you can find free here and on other free sites

they just collect it and package it and sell it

[littleDaniel]

they also offer money back if not satisfied and one of our members is still waiting for that

 

be very very careful of people selling "cures"

most of these books contain info you can find free here and on other free sites

they just collect it and package it and sell it

Both 72 hour cultures (our son with the tics and his sister ) came back negative. Perhaps this is not PANDAS but TS(the neurologist initial diagnosis)

One thing we have realized is that although these major tics just started about 5-6 weeks ago, he really had different forms of tics in the past two years. We remember him having a 3 month period of clearing his throat last year. We also remember him snorting for about three months 2 years ago. We thought he either had allergies or a cold.

 

Two days ago he started a new tic with his lips rubbing against each other making a sound (kind of like a rasberry). Broke my heart, because now it definitely fills the description of TS (motor and vocal).

 

He also now has a fear of baseballs hitting him. Because of this we have decided to take him out of little league. We could see an increase of tics while in the outfield or when coming to bat.

 

Does anyone know of a naturapathic or environmental doctor in Southern California?? We live in Orange County California.

 

Thank you everyone for your support.

[littleDaniel]

they also offer money back if not satisfied and one of our members is still waiting for that

 

be very very careful of people selling "cures"

most of these books contain info you can find free here and on other free sites

they just collect it and package it and sell it

Both 72 hour cultures (our son with the tics and his sister ) came back negative. Perhaps this is not PANDAS but TS(the neurologist initial diagnosis)

One thing we have realized is that although these major tics just started about 5-6 weeks ago, he really had different forms of tics in the past two years. We remember him having a 3 month period of clearing his throat last year. We also remember him snorting for about three months 2 years ago. We thought he either had allergies or a cold.

 

Two days ago he started a new tic with his lips rubbing against each other making a sound (kind of like a rasberry). Broke my heart, because now it definitely fills the description of TS (motor and vocal).

 

He also now has a fear of baseballs hitting him. Because of this we have decided to take him out of little league. We could see an increase of tics while in the outfield or when coming to bat.

 

Does anyone know of a naturapathic or environmental doctor in Southern California?? We live in Orange County California.

 

Thank you everyone for your support.

Our pediatrician has suggested melatonin for sleep....Does anyone have any experience with that? Could it make things worst or better?

 

tx

LD

[mariewilliams]

Hello,

 

I just joined this forum today in hopes of some answers myself. I felt your blog was very similar to what is happening to my daughter. My daughter, Hanna, just turned 8 Oct. 9th. I noticed about 3 weeks ago she started twitching her neck. At first I thought she was just dancing or moving around as she is a very active 8 yr old. But I've noticed it's gotten worse. When she watches TV or plays video games it seems to happen very often. She also has started to sniff all of the time. She says she can not help it when her neck twitches when I have asked her about it. I don't want to overly ask her about it because I don't want her to have a complex. She is very emotional and has a lack of confidence. The other day she told me she doesn't understand why she has things wrong with her. This breaks my heart.... She has been taking gymnastice for about 3 years now and is very good. I hope the twitching isn't going to get in the way. I've ordered a book called - Tics and Tourette's: Breakthrough Discoveries in Natural Treatments"

by Sheila J. Rogers. I noticed it's been a highly recommended book for the natural route for tics. I have not taken Hanna to a Dr. yet as I wanted to read up and study tics first on my own. Do you feel changing your son's diet is working for him? Any suggestions are appreciated.

 

Thanks,

 

Marie

[littleDaniel]

Hello,

 

I just joined this forum today in hopes of some answers myself. I felt your blog was very similar to what is happening to my daughter. My daughter, Hanna, just turned 8 Oct. 9th. I noticed about 3 weeks ago she started twitching her neck. At first I thought she was just dancing or moving around as she is a very active 8 yr old. But I've noticed it's gotten worse. When she watches TV or plays video games it seems to happen very often. She also has started to sniff all of the time. She says she can not help it when her neck twitches when I have asked her about it. I don't want to overly ask her about it because I don't want her to have a complex. She is very emotional and has a lack of confidence. The other day she told me she doesn't understand why she has things wrong with her. This breaks my heart.... She has been taking gymnastice for about 3 years now and is very good. I hope the twitching isn't going to get in the way. I've ordered a book called - Tics and Tourette's: Breakthrough Discoveries in Natural Treatments"

by Sheila J. Rogers. I noticed it's been a highly recommended book for the natural route for tics. I have not taken Hanna to a Dr. yet as I wanted to read up and study tics first on my own. Do you feel changing your son's diet is working for him? Any suggestions are appreciated.

 

Thanks,

 

Marie

Hi Marie and welcome to this forum. Sorry I didn't reply sooner. I seem to have been so obsessed with this that I have gone a few days without following up.

I have been on this forum for about a month now. The ideas that are presented and offered are very helpful yet overwhelming because of so many varying possibilities.

 

My immediate impulse after seeing my son tic was to take him to a doctor who of course just said it was TS and he would have to live with it. The neurologist we saw said the same thing. He even went on to say that PANDAS was for quacks. Not that I believe my son has PANDAS but it is sad that some doctors are so closed minded. However, I have since convinced my doctor to provide more tests that people have suggested on this forum. The least these tests could do is rule things out. We had three different strep throat tests done (quick culture, 72 hour culture, and the ASO titers - blood test). We have had the standard allergy test (tests for about 20 most common allergies), tested for Celiac and Mercury and tested for magnesium levels. We are trying to get them to test for Dysbiosis but haven't convinced the doctor that it is warranted. We are also scheduled for an EEG this Saturday with a biofeedback session next week.

 

The only thing that has come up positive was an allergy to Dust Mite which is at 3 (levels of 1-5, 5 being the highest). The doctor believes a 3 is pretty high. I performed a "Field Day" on his room to remove all dust and purchased a 99.97% air filter for his room. I also purchased a special allergy cover for his pillow cases and mattress. He does appear to be sleeping a lot better overall since these dust proof additions. However, he does still have some bad days. We have purchased melatonin as a natural supplement for him to sleep when he has bad days. We haven't tested it yet.

 

Magnesium levels in his blood were normal but I had already started him on a high magnesium diet prior to the blood test so he might have been low initially. I've had him on a high spinach, halibut, beans, and just started giving him sunflower seed snacks. My LD had a major hyperactivity component to his TS and magnesium appears to have reduced it significantly. He is much more calm since increasing Magnesium which in turn can help reduce anxieties. Anxiety is big trigger for my LD.

 

He still triggers high with TV even though I changed to an LCD screen. I minimize his TV time because of it. However I dont' want to completely remove everything he enjoys in life. He is still just a kid. I have't allowed him to play with his video games since the onset of Tics. I expect to allow him sometime in the near future but more controlled than before.

 

One of my biggest obstacle is not being able to get doctors to due specific tests due to not believing in anything. Also, unforturnately my wife and I are at odds with this whole thing. She just follows the TSA and the MDs who say that it is genetic and you have to live with it.

 

My son says there is nothing wrong with him. I can't find myself telling him he has TS although I might eventually have to do it. I really want him to be a normal child with a normal childhood.

He is also very emotional and occassionally lacks confidence.

 

I am planning on also trying Omega 3. I have read that it has reduced tics in some. I have even read that the TSA (Tourette Syndrome Association) has started some research on Omega 3.

Other than the above, like yourself I am still hoping to find the "smoking gun" to help our son. I guess my overall current synopsis is test as much as I can (to try to find a possible cause), reduce the environmental conditions that can worsten it (reduce TV, video games, dust mites, etc.), and improve his diet to strengthen his immune system or supplement any diet difficiencies.

 

I am currently also reading the Sheilla Rogers book which summarizes a lot of what you will read in this forum.

 

Good luck and take care.

[JSCCMOM]

It sounds like you and I are on the same track! My son has had Tourettes for2yrs. now and my husband really thought it was all in my head and that he wanted attention or something. My son is VERY outgoing and has never met a stranger. So, when all this started to happen, it didn't match him. He was losing friends, teacher problems, for starters. It just didn't make sense for a kid who wanted to be around people SOOO very much to act weird to push them away.

That's when I began my research. I cut out all dairy and food colorings and 1-2wks later he was a changed boy! His teacher came up to me and said " Whatever you are doing is working!" We were so thrilled!

Well, over the summer and beginning of school, he's had a few ticks that have slowly surfaced. I know it's because there's more in his diet he's reacting to. So, I'm first taking him off his diet before going to the Neurologist so he can 'diagnose' him. Then I'm taking him to an environmental physician for an in depth allergy test. Then we're off to get a 'dry blood test'. I read about it here. It's interesting. After I get all thet done....I will know for sure what he can/can't have. If the Sheila Rogers book (I just got mine too..had it on preorder) doesn't convince your wife, I'd say just keep at it until you have yourself a changed boy and 'seeing is believing' for her. GOOD LUCK!