Define a tic for me

[twobit]

New to board - here's my story and question.

 

My 8yr old daughter tested positive for strep, so both she and my 3.5 yr old son went on antibiotics. 10 days later, my son finished his dose and then 4 days after that, he started an incessant throat clearing. Just woke up and it was there for the first time ever. Three days later, he was still clearing his nose, running his fingers down his nose and then resting them on his nostrils, was hyper and eating much more than usual. Took him to the doc that night, they did a strep test which came back negative (ANTI STREP O and it came back at 51%) and then gave me some Clonidine for the tics. We gave him one tiny dose, hated the results and stopped. Got an appointment with the regular pediatrician and she made appointments with a neurologist and psychiatrist. Neurologist ran tests on thyroid (T3 & T4) because he didnt want to say these were tics ... yet. We have the follow up tomorrow.

 

My question is about tics. My son will either clear his throat if his hands are busy or touch his eyes, ears, nose, leg, or just about anything if he is not clearing his throat. These go on all the time while he is awake unless he is concentrating on something, like when he watches TV, he can sit there motionless wihtout coughing, but with his fingers resting on the tip of his nose. He can sit and make stuff out of lego for an hour and only cough. None of these actions are instantaneous. He takes a deep breath to clear his throat and sometimes will scratch his ear with my hand if we are holding hands. He can also machine gun several short breaths before saying words instead of one cough. Are all of these tics? They are not jerky or instantaneous. He tells us that he has a tingle that starts in his ear, moves down his throat and goes to his stomach. Aside from being a slightly more moody and hyper, he's the same. This is all very strange and confusing for me since neither side of our family has a history of TS. Dont like the same response from every doc so far:

He'll probably grow out of it. Wait a year and if theyre still there, then we'll talk TS.

[CSP]

Welcome Twobit,

 

We are not PANDAS, but I did want to welcome you.

 

My son's tics/habits he had when he was younger were different then what they are now (14yo) He is TS and the tics changed, when he was young he did some eye rolling, and sniffed his fingers, washed his hands and had a kissing noise. When he turned 12yo he started to scream, his body jumped all over the place. His body has been calm for 2 years. his vocal is still there but not screaming. He has not sniffed his hands since he was about 8 or 9. He washes his hands but it is only before he eats, or take out the trash. Not like when he was young he would wash a lot more, but not enough for me to ever wonder what was up.

 

Your son is so young, have you been able to ask him how he feels doing these things? He might be able to help you out in his own words. I know that might be hard for he is so young. But maybe he feels different then he did before the strep, and can tell you.

 

As far as tics, I have come to understand just about anything can be a tic or OCD. Sometimes that is even hard to figure out which is which. OCD is big for PANDAS so you may want to research that.

 

If you have not started with some fish oil that would be a good one.

 

I wish you the best of luck finding answers hear, and hope some PANDAS moms will post soon for you.

 

God Bless,

C.P.

[zma13]

New to board - here's my story and question.

 

My 8yr old daughter tested positive for strep, so both she and my 3.5 yr old son went on antibiotics. 10 days later, my son finished his dose and then 4 days after that, he started an incessant throat clearing. Just woke up and it was there for the first time ever. Three days later, he was still clearing his nose, running his fingers down his nose and then resting them on his nostrils, was hyper and eating much more than usual. Took him to the doc that night, they did a strep test which came back negative (ANTI STREP O and it came back at 51%) and then gave me some Clonidine for the tics. We gave him one tiny dose, hated the results and stopped. Got an appointment with the regular pediatrician and she made appointments with a neurologist and psychiatrist. Neurologist ran tests on thyroid (T3 & T4) because he didnt want to say these were tics ... yet. We have the follow up tomorrow.

 

My question is about tics. My son will either clear his throat if his hands are busy or touch his eyes, ears, nose, leg, or just about anything if he is not clearing his throat. These go on all the time while he is awake unless he is concentrating on something, like when he watches TV, he can sit there motionless wihtout coughing, but with his fingers resting on the tip of his nose. He can sit and make stuff out of lego for an hour and only cough. None of these actions are instantaneous. He takes a deep breath to clear his throat and sometimes will scratch his ear with my hand if we are holding hands. He can also machine gun several short breaths before saying words instead of one cough. Are all of these tics? They are not jerky or instantaneous. He tells us that he has a tingle that starts in his ear, moves down his throat and goes to his stomach. Aside from being a slightly more moody and hyper, he's the same. This is all very strange and confusing for me since neither side of our family has a history of TS. Dont like the same response from every doc so far:

He'll probably grow out of it. Wait a year and if theyre still there, then we'll talk TS.

 

 

 

I have two boys with Pandas. They have both had some of the tics that your son has. My youngest still smells his finger. Somedays more than others. He alo had a nose sniffing problem, he did not need to blow his nose but would continue to sniff. These tics seem to change but never go away. Everyone didn't notice my sons tics at first, but I did. There are times that I sit and watch to see what tics are still there.

[dut]

Hello

 

I can't comment about tics much but our 4 yr old daughter has just gotten over (nearly) her 1st episode of PANDAS, we believe. Her's was very strongly OCD with minor ticcing and lots of hyper/emotional behavior and funnily enough she was also eating a lot more. She had a positive strep culture but at the end of antibiotics had very low titers but we're still confident it was/is PANDAS as she is remitting so well after 14 days of amoxi.

 

I would keep following the strep thing.. it takes a number of weeks for titers to rise after strep so I believe. Even though her titers were low 2 weeks ago she is still getting better.. so maybe some kids are more sensitive than others to even low titers or maybe some residual damage/inflammation remains that has to be repaired..and chemar on this forum offered us up another idea regarding cholinergic system.

 

We're still very new to all this so I don't know much just thought i'd offer my penny's worth when I saw you mention the low titer thing and the eating more.... good luck with it...

[dut]

Hello again.. also remembered this...

 

a paper from National Institute of Mental Health looking at antibiotic prophylaxis for PANDAS mentions that quick antibiotic initiation may blunt strep titers... could account for low titers if you gt to the strep quickly... it's towards the end of the paper.. last page I think...

 

http://intramural.nimh.nih.gov/pdn/pubs/pub-9.pdf

[twobit]

Hi all. Thanks for the posts.

 

Not too impressed with our neurologist. He told us today that the thyroid tests all came back normal and then asked us, "So ... have you decided which tic medication you wanted to put him on?" Not really what I wanted to hear, so I asked him specifically about PANDAS and asked if we should take another ANTI STREP O to look for trends and why havent we done something to check his AntiDNase B levels which from what I have read, are a better indication of PANDAS? He looked at my wife and me and said, "Yes. I could do that." I was happy and a bit proud of my usually quiet wife when she asked him if she had ever treated anyone with PANDAS and he told us, "Yes. Several." I then felt like asking him how he had dealt with it, by telling everybody to wait a year to see if it is TS? At that point I thought of something my friend told me a few years ago:

Sometimes the path to your future is best lit by a burning bridge behind you.

 

Maybe its time for a new neurologist? Not sure, but I need to at least wait another 2 weeks for the latest blood work to get back.

 

DUT - irt low numbers - that's what the ER Doc told me when the original ANTI STREP O test came back low.

 

My next question for everybody is how long do symptoms for PANDAS last until the waning cycle starts? Do the symptome go away until the child gets strep again or does he have TS?

[Chemar]

Hi twobit and welcome

 

my son has genetic TS -- no PANDAS

 

my first advice....find a Doc who clearly knows what he/she is doing re PANDAS!

IMHO that would not necessarily be a neurologist I am sure neuros play a vital role inhelping many people but the overall reports for them on PANDAS and even TS are not very glowing when it comes to anything that isnt just writing a rx for a med or the standard....."wait and see"

 

 

We have an "essential threads" sticky at the top of this forum along with one for "finding medical help" which may also be helpful to you.

 

 

 

just wanted to also mention based on the last line of your post above mine

Do the symptome go away until the child gets strep again or does he have TS?

....yes, PANDAS (as with any infection) can trigger tics in TS kids, but a kid with PANDAS who tics does not necessarily have TS. It is believed that neurological inflammation from the strep triggers tics in PANDAS kids whereas TS tics are rooted more in the dopaminergic mechanisms in the brain, often genetically inherited.

 

from what i have seen reported by PANDAS parents, when on prophylactic antibiotics (many report zithromax/azithromycin works well) the tics/OCD etc are subdued. But exposure to strep (sometimes with no classic symptoms of the strep itself) can trigger waxing. I think I explained that right...hope so

 

 

If you use the search feature and enter PANDAS keyword you will get many many posts that may shed light and you can also filter by adding Ronnas as the member name...Ronna has done a number of posts to try to explain PANDAS and it's testing

 

I know you will find much support and lots of info here that will hopefully help you help your child

[michele]

We did the watch and wait route for about four years. I know how frustrating that is hen they are so young. Each episode seemed to get a bit longer and the symptoms got worse and went away less in the end. Our first tics were finger movements like piano playing and eye blinking too often. Also the emotional issues, crying and mood swings. His titers were elevated. However after a month or six weeks all the symptoms were gone. Each time he was sick the same thing happened. My daughter had alot of strep so I think he was exposed alot in the early years before she had her tonsils removed. Then last year the OCD seemed to be worse with marked likes that he couldn't stop thinking of and the hyperness and it seemed to stay on instead of going away like it had done in the past. He'd run to the potty all the time like a compulsion to pee. It was then that we went on antibiotic daily prophylaxis pen vk. It helped some in the beginning. The tics seemed to stay though and he was always cracking his joints and knuckles. Then he started a shreaking tic. I also started to hear him echo noises on TV especially Sponge Bob. At times I would hear him verbalize bad thoughts. It was then that we tried supplements and detox with Nystatin and Amino Acids. It helped alot with the yeast and his symptoms improved. However the ADHD continued to get worse. So we then tried Omnicef. It really worked well and the tics disappeared. His behaviors and moods were still bad so we put him on 2 mg Abilify daily which is like a antidepressant that helps with tics. He is like a new kid. He can concentrate and is less emotional. He is doing great and the tics are gone. Best of all he is having success at school and is so much easier to get along with. Now our battle is OT and handwriting because the gross motor seems delayed. keep an eye on this. My sons coordination is not so good because his muscles have low tone and he doesn't cross over his midline. I wish I would have sought out OT earlier. It wasn't until age 5 that I realized it was all connected. There are alot of avenues to this disorder and I don't think there is one quick fix! Best of luck to you.

 

 

Michele

 

.

New to board - here's my story and question.

 

My 8yr old daughter tested positive for strep, so both she and my 3.5 yr old son went on antibiotics. 10 days later, my son finished his dose and then 4 days after that, he started an incessant throat clearing. Just woke up and it was there for the first time ever. Three days later, he was still clearing his nose, running his fingers down his nose and then resting them on his nostrils, was hyper and eating much more than usual. Took him to the doc that night, they did a strep test which came back negative (ANTI STREP O and it came back at 51%) and then gave me some Clonidine for the tics. We gave him one tiny dose, hated the results and stopped. Got an appointment with the regular pediatrician and she made appointments with a neurologist and psychiatrist. Neurologist ran tests on thyroid (T3 & T4) because he didnt want to say these were tics ... yet. We have the follow up tomorrow.

 

My question is about tics. My son will either clear his throat if his hands are busy or touch his eyes, ears, nose, leg, or just about anything if he is not clearing his throat. These go on all the time while he is awake unless he is concentrating on something, like when he watches TV, he can sit there motionless wihtout coughing, but with his fingers resting on the tip of his nose. He can sit and make stuff out of lego for an hour and only cough. None of these actions are instantaneous. He takes a deep breath to clear his throat and sometimes will scratch his ear with my hand if we are holding hands. He can also machine gun several short breaths before saying words instead of one cough. Are all of these tics? They are not jerky or instantaneous. He tells us that he has a tingle that starts in his ear, moves down his throat and goes to his stomach. Aside from being a slightly more moody and hyper, he's the same. This is all very strange and confusing for me since neither side of our family has a history of TS. Dont like the same response from every doc so far:

He'll probably grow out of it. Wait a year and if theyre still there, then we'll talk TS.

[Ronnas]

Welcome to this great message board. I would continue to pursue PANDAS with your doctors. As said by others the trend in the titers is what is important. Here is some important informantion about the strep tests used...Overall, I would really recommend speaking with your doctor again and doing a trial of antibiotics again, azithromycin in particular, to see if you see an improvement in the tics and behavior BEFORE even considering some of the tic medications like clonidine etc. As well it would be helpful to ask for a referral to a doctor with experience with PANDAS or at the very least ask your doctor if he has even treated a child with PANDAS.

 

If you notice an improvement with the azithromycin then you are most likely on the right path with PANDAS and need to continue to pursue this. Hope this information below helps.

 

Ronna

 

Streptococcal antibody tests

 

 

Definition

 

Streptococcal infections are caused by a microorganism called Streptococcus. Three streptococcal antibody tests are available: the antistreptolysin O titer (ASO), the antideoxyribonuclease-B titer (anti-Dnase-B, or ADB), and the streptozyme test.

Purpose

 

The antistreptolysin O titer, or ASO, is ordered primarily to determine whether a previous group A Streptococcus infection has caused a poststreptococcal disease, such as scarlet fever, rheumatic fever, or a kidney disease called glomerulonephritis.

 

The anti-DNase-B (ADB) test is performed to determine a previous infection of a specific type of Streptococcus, group A beta-hemolytic Streptococcus. Identification of infections of this type are particularly important in suspected cases of acute rheumatic fever (ARF) or acute glomerulonephritis.

 

Streptozyme is a screening test used to detect antibodies to several streptococcal antigens. An antigen is a substance that can trigger an immune response, resulting in production of an antibody as part of the body's defense against infection and disease.

Precautions

 

For the ASO test, increased levels of fats, called beta lipoproteins, in the blood can neutralize streptolysin O and cause a false-positive ASO titer. Antibiotics, which reduce the number of streptococci and thereby suppress ASO production, may decrease ASO levels. Steroids, which suppress the immune system, consequently may also suppress ASO production. Also Group A streptococcal infections of the skin may not produce an ASO response. Antibiotics also may decrease anti-DNase-B (ADB) levels.

Description

 

Streptococcal infections are caused by bacteria known as Streptococcus. There are several disease-causing strains of streptococci (groups A, B, C, D, and G), which are identified by their behavior, chemistry, and appearance. Each group causes specific types of infections and symptoms. These antibody tests are useful for group A streptococci. Group A streptococci are the most virulent species for humans and are the cause of "strep throat," tonsillitis, wound and skin infections, blood infections (septicemia), scarlet fever, pneumonia, rheumatic fever, Sydenham's chorea (formerly called St. Vitus' dance), and glomerulonephritis.

 

Although symptoms may suggest a streptococcal infection, the diagnosis must be confirmed by tests. The best procedure, and one that is used for an acute infection, is to take a sample from the infected area for culture, a means of growing bacteria artificially in the laboratory. However, cultures are useless about two to three weeks after initial infection, so the ASO, anti-DNase-B, and streptozyme tests are used to determine if a streptococcal infection was present.

Antistreptolysin O titer (ASO)

 

The ASO titer is used to demonstrate the body's reaction to an infection caused by group A beta-hemolytic streptococci. Group A streptococci produce the enzyme streptolysin O, which can destroy (lyse) red blood cells. Because streptolysin O is antigenic (contains a protein foreign to the body), the body reacts by producing antistreptolysin O (ASO), which is a neutralizing antibody. ASO appears in the blood serum one week to one month after the onset of a strep infection. A high titer (high levels of ASO) is not specific for any type of poststreptococcal disease, but it does indicate if a streptococcal infection is or has been present.

 

 

 

Serial (several given in a row) ASO testing is often performed to determine the difference between an acute or convalescent blood sample. The diagnosis of a previous strep infection is confirmed when serial titers of ASO rise over a period of weeks, then fall slowly. ASO titers peak during the third week after the onset of acute symptoms of a streptococcal disease; at six months after onset, approximately 30% of patients exhibit abnormal titers.

Antideoxyribonuclease-B titer (anti-DNase B, or ADB)

 

Anti-DNase-B, or ADB, also detects antigens produced by group A strep, and is elevated in most patients with rheumatic fever and poststreptococcal glomerulonephritis. This test is often done concurrently with the ASO titer, and subsequent testing is usually performed to detect differences in the acute and convalescent blood samples. When ASO and ADB are performed concurrently, 95% of previous strep infections are detected. If both are repeatedly negative, the likelihood is that the patient's symptoms are not caused by a poststreptococcal disease.

 

When evaluating patients with acute rheumatic fever, the American Heart Association recommends the ASO titer rather than ADB. Even though the ADB is more sensitive than ASO, its results are too variable. It also should be noted that, while ASO is the recommended test, when ASO and ADB are done together, the combination is better than either ASO or ADB alone.

 

Streptozyme

 

The streptozyme test is often used as a screening test for antibodies to the streptococcal antigens NADase, DNase, streptokinase, streptolysin O, and hyaluronidase. This test is most useful in evaluating suspected poststreptococcal disease following Streptococcus pyogenes infection, such as rheumatic fever.

 

Streptozyme has certain advantages over ASO and ADB. It can detect several antibodies in a single assay, it is technically quick and easy, and it is unaffected by factors that can produce false-positives in the ASO test. The disadvantages are that, while it detects different antibodies, it does not determine which one has been detected, and it is not as sensitive in children as in adults. In fact, borderline antibody elevations, which could be significant in children, may not be detected at all. As with the ASO and ADB, a serially rising titer is more significant than a single determination.

Preparation

 

These tests are performed on blood specimens drawn from the patient's vein. The patient does not need to fast before these tests.

Risks

 

The risks associated with these tests are minimal, but may include slight bleeding from the blood-drawing site, fainting or feeling lightheaded after the blood is drawn, or blood accumulating under the puncture site (hematoma).

 

Normal results

 

Antistreptolysin O titer:

 

* Adult: 160 Todd units/ml

* Child: 6 months-2 years: 50 Todd units/ml ;2-4 years: 160 Todd units/ml; 5-12 years: 170-330 Todd units/ml

* Newborn: similar to the mother's value

 

Antideoxyribonuclease-B titer:

 

* Adult: 85 units

* Child (preschool): 60 units

* Child (school age): 170 units.

 

Streptozyme: less than 100 streptozyme units.

[twobit]

Michele,

What's OT?

 

Ronnas,

Thanks for the info - especially the numbers. When I got the intial results of the Antistreptolysin O, it only said <51%. (<100) IU/ml. Any idea how to interpret that?

 

Rob

[michele]

It is occupational therapy OT. This is one area with a common deficit for some of our kids with tics. They often have fine and gross motor problems. I was able to get a script from a Dr. and insurance will pay for weekly sessions. It is helping to build up his body and hand strenth.

 

Ronna, Thanks for the great article.

Michele

Michele,

What's OT?

 

Ronnas,

Thanks for the info - especially the numbers. When I got the intial results of the Antistreptolysin O, it only said <51%. (<100) IU/ml. Any idea how to interpret that?

 

Rob

[faith]

twobit,

less than 100 would indicate in the normal range, wich is up to 200 i believe. We are evidently not Pandas either, but upon testing the Aso was at 60 and we had two tests. The dnase also indicated low.

 

I think its good to at least get the tests done to point you in a direcdtion, but you will have to pay attention to the symptoms and times of flair ups as well. This may indeed be a wait for the next time strep comes along. Could I ask, does he still have tics now, or have they subsided? And what was the effect re the clonodine that you did not like?

 

Thanks

Faith

[twobit]

Thanks Faith.

I didnt understand the 51 being listed as 51% because on the far right of the page was 100%. Eh? I'll get updated results back next week along with the DNase B.

 

As far as waxing/waning. He started one month ago on Mon and to tell you the truth, I cant figure out if they are tics. Neurologist said they were strange tics. They seem to be soothing because he can sit for a long time with his finger in his mouth or touching his ear while he is doing something and he is fine. Then he does something with both hands and that's the point where he may cough. This cycle is absent during sleep, less frequent when he wakes up, but after about an hour,he is constantly rubbing his ears, nose, corner of his eye, arm, leg or clearing his throat/hyperventilating when he talks. Wonder if it is some OCD via PANDAS vice tics?

 

Clonodine dint stop any of his behaviors, but took away all personality and he seemed like a zombie. We gave him a quarter of a tablet like the doc said, but only gave it once.

 

2bit

[guy123]

and then gave me some Clonidine for the tics. We gave him one tiny dose, hated the results and stopped.

 

Hi,

 

What dosage did you give him? What were the results that you "hated?" Did it have any effect on the tics?

 

Thanks.

[EAMom]

don't let a doc rule out PANDAS due your child having "normal" titers...your son's symptoms started with a strep exposure/culture, that is what matters...

 

Positive cultures (even in sibling IMO) is plenty of evidence that there is strep exposure, esp. so closely correlated to onset of symptoms. Titers can be useful when too much time has passed to get a positive culture. However, there are lots of kids who have had strep that will have "normal" titers. You don't need titers to "prove" strep exposure...you have sibling's culture.

 

Check out "Buster's" post from 8/24/08 on ASO titers (applies to anti dnase B as well) for more information...how high titers are depends on the individual (some people just don't make a lot of titer), the strain of strep, the lab that runs the sample, how long after strep exposure the blood is drawn....also, and some people have titers that drop rapidly, some very very slowly. Some people have a low baseline so even "elevated" for them is still within the "normal range".

 

I agree with other posters that neurologists are not PANDAS experts. Our pediatric neurologist said she has seen only 2 cases (which she is convinced are PANDAS) in 10 years...our daughter is one of them. If this is representative of other neurologists then either they are missing lots of PANDAS cases or there just aren't a lot of PANDAS kids that make it to neurologists (or PANDAS is very rare, or underdiganosed...)

 

Our daughter's PANDAS was still going very strong when her titers "normal" (they started "normal" 2 mo. after strep and went even lower 1 mo. later). Azithromycin is what really cured her...feel free to check out my other posts. (That was the 4th antibiotic she was on....)

 

How is your son doing now?

 

Also, IMO a month trial of Azithromycin is a lot more benign than some of these other anti-tic, anti-ocd drugs these docs hand out like candy...