5 year old with sudden Tics

[kkver]

Hi

I am new here but found so many useful experiences here so though of posting my problem for some suggestions. I have a 5 yr old son who started tics around 2.5 weeks back. He had a strep through and was treated with antibiotics for 5 days from 17th of Feb to 22 of Feb and he got better. But after 24th I can see noticeable tics like in legs and little headshake with vocal noise. Some times it has gone worst and some times it gets noticeable better. He’s active kid and able to do all physical activities like cycling and skate boarding. One thing I noticed is when he is really into something like study or making puzzles it disappears. His blood test were negative for anti strep bodies (count was 2 much below normal 200 range) so I guess PANDAS was ruled out. His pediatrician says he has seen cases and this will go away with time but for us each day is difficult to pass and we trying to hang in there. After reading this forums I am starting him on some extra vitamins and Magnesium/Calcium Combo with Fish oil from yesterday and hope will get some positive result. He’s asthma/allergy problem so is in QVAR ( one puff morning and night ) and some time on Zertac depending upon the season. I don’t want to start him ay medicine like ( catapress,clonidine) as suggested by one Neurologist I saw so I am seeking some input from all you about his case. I have a another appointment with another Neurologist tomorrow and will post what he says.

some Question

1) Has anoone seen this kind of behavour and seen them gone away . How long will they go away?

 

thanks

[Cum Passus]

kkver,

 

Welcome... You will find a lot of support here. I'm glad your looking for answers. I hope the vitamins work quickly for your son. I really hope your Dr. is right and this will clear up for him. Soak up as much info as you can here, and take it slow.

 

C.P.

[faith]

Hello kkver and welcome,

Sorry, I just want to understand better, did you say your son has only had this for two or three weeks now? Did you have that testing about the strep done because of the tics, and when you said he got better after the antibiotic, did you mean the strep throat was better or the tics? Were the different tics all at once or here and there? Did you mean you already saw a neurologist before this? Sorry for so many questions, I wasn't sure what you meant.

 

Hope all goes well tomorrw and please check back in.

 

Faith

[kkver]

Hello kkver and welcome,

Sorry, I just want to understand better, did you say your son has only had this for two or three weeks now? Did you have that testing about the strep done because of the tics, and when you said he got better after the antibiotic, did you mean the strep throat was better or the tics? Were the different tics all at once or here and there? Did you mean you already saw a neurologist before this? Sorry for so many questions, I wasn't sure what you meant.

 

Hope all goes well tomorrw and please check back in.

 

Faith

 

 

He had fever 16 th march so took him to doc on 18th and after checking his throth which was so bad doc gave antibiotics without the culture for 5 days. He got better after antibiotics but 2 days later he started tics . Mutlitple heard jerk with voice ( hmmmmm) and shake of legs and some time shoulders. It went on for 3 days ( 28th march ) and i took him to neurologist where she took the blood for test to check the antibodies for PANDAS. after 29th march we have seen some gradual decline and flareups of both vocal and motor tics. Blood result came out negative for antibodies and nuerologist suggested use of catapres if they don't go away soon . I went to his regular doc again 4th april and he said it's Tics and chances are these to go away with time may be 2 months to 6 months but adviced to get another checkup with different Nuerologist. So got another appointment on 10th april with a different nuerologist . Mean while going through this fourms have started him on fish oil and mag/cal suppliment . Just read about L Carnitine so will get it tommorow. Each day goes with heavy heart after watching his Tics and keeping a hope it might go away as it came.

[Sunshine]

Welcome to the forum, kkver.

 

I am sorry to hear about your son. I know all too well just how stressful it is to watch your child struggle.

 

I am no expert, but I did wonder about a few things.

 

I was curious that your doctor ruled out PANDAS so quickly. From what I know, strep antibodies can take several weeks to rise following an infection. I believe they can rise as early as one week later, but it can take 5-6 week to reach a peak. Check with your doctor, but you may want to do some more blood work to confirm the diagnosis.

 

After being on antibiotics, your son might have a problem with yeast. Antibiotics kill all the good and bad gut flora, leaving an opportunity for candida to set in. This can cause tics in some children. You might find it helpful to start your son on probiotics to balance out his gut.

 

I am not familiar with puffers, but I believe that ones containing steroids can also contribute to tics.

 

Good luck with your endeavors!

[patty]

kkver,

 

Welcome!

 

My son have used albuterol, cingular, flovent and flonase in the past. Shortly after my son stop using flovent, he had a sudden acute onset of tic. I am not certain that the medication cause his tics but i suspect it is one of the contributing factors.

 

As you may already know, stimulant type of medication can be a tic trigger. On the brighter note, since we have been using alternative treatments, along with dietary changes to treat the tic, he has been asthma-free. His nasal allergy is also getting better, and i believe he will continue to get better over the course of the treatments.

 

IMO, it is best to avoid steriod medications whenever possible.

 

Patty

[kkver]

kkver,

 

Welcome!

 

My son have used albuterol, cingular, flovent and flonase in the past. Shortly after my son stop using flovent, he had a sudden acute onset of tic. I am not certain that the medication cause his tics but i suspect it is one of the contributing factors.

 

As you may already know, stimulant type of medication can be a tic trigger. On the brighter note, since we have been using alternative treatments, along with dietary changes to treat the tic, he has been asthma-free. His nasal allergy is also getting better, and i believe he will continue to get better over the course of the treatments.

 

IMO, it is best to avoid steriod medications whenever possible.

 

Patty

 

Thanks Patty

I will like to know what kind of Diet related changes did you do . I am on the process of stating the vitamins and other things but will like to know more about Diet like what to avoid and what to eat . Eight now i am planning on cutting sugar like cnadies choclate ice cream .

 

 

 

Sunshine

Thanks for posting about candida , I will look in to it ASAP and will make a trip to Vitamins store tommorow.

[patty]

kkver,

 

My son has food sensitivities, such as wheat, gluten, milk, yogurt, casein.... We had a blood test done thru a ND. We used NAET to treat wheat & dairy last summer and still have a few more food items not yet treated, which we will start in a couple of months. Since we treated for wheat & dairy, i allow that in moderation in my son's diet. We also eat mostly organic, and eliminate artificial sweetner and flavor, MSG, food coloring, perservatives, nitrate and additives. We also limit sugar, maybe a small piece of candy every other day.

 

I would suggest to you to get a blood test done on your son first before avoiding anything. In the meantime, i would eliminate dairy since people with allergy & asthma can greatly benefit without it (causes mucus).

 

Patty

[Chemar]

welcome kkver

 

I too would suggest asking your doctor to run the comprehensive BLOOD tests to check for strep antibodies and so PANDAS

A throat swab is not going to give that info and yes, it does take a while for the antibody levels to be detectable

 

Altho it is good to begin healthy diet and supplements, yet, if PANDAS is the underlying cause, the lurking strep needs to be treated

[Ronnas]

Now I really am a broken record! A single ASO titer does not provide much info in terms of confirming PANDAS or not...it is the trend over time that is important.

 

From the NIMH:

 

A. The anti-streptococcal antibody titer determines whether there is immunologic evidence of a previous strep. infection. Two different strep. tests are commercially available: the antistrepolysin O (ASO) titer, which rises 3-6 weeks after a strep. infection, and the antistreptococcal DNAase B (AntiDNAse- titer, which rises 6-8 weeks after a strep. infection.

 

Q. What does an elevated anti-streptococcal antibody titer mean? Is this bad for my child?

 

A. An elevated anti-strep. titer (such as ASO or AntiDNAse- means the child has had a strep. infection sometime within the past few months, and his body created antibodies to fight the strep. bacteria. Some children create lots of antibodies and have very high titers (up to 2,000), while others have more modest elevations. The height of the titer elevation doesn’t matter. Further, elevated titers are not a bad thing. They are measuring a normal, healthy response – the production of antibodies to fight off an infection. The antibodies stay in the body for some time after the infection is gone, but the amount of time that the antibodies persist varies greatly between different individuals. Some children have "positive" antibody titers for many months after a single infection.

 

Q. When is a strep. titer considered to be abnormal, or "elevated"?

 

A. The lab at NIH considers strep. titers between 0-400 to be normal. Other labs set the upper limit at 150 or 200. Since each lab measures titers in different ways, it is important to know the range used by the laboratory where the test was done – just ask where they draw the line between negative or positive titers.

 

It is important to note that some grade-school aged children have chronically "elevated" titers. These may actually be in the normal range for that child, as there is a lot of individual variability in titer values. Because of this variability, doctors will often draw a titer when the child is sick, or shortly thereafter, and then draw another titer several weeks later to see if the titer is "rising" – if so, this is strong evidence that the illness was due to strep. (Of course, a less expensive way to make this determination is to take a throat culture at the time that the child is ill.)

 

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http://www.cmaj.ca/cgi/content/full/165/10/1353

 

We recommend evaluation of all children who present with the sudden onset or exacerbation of obsessive–compulsive symptoms, using the approach summarized in Fig. 1. This diagnostic algorithm, which is based on the literature summarized earlier as well as our clinical judgement, begins with a history-taking, mental status examination and focused physical examination. Initial investigations in children with a history suggestive of streptococcal infection or a strong family history of rheumatic fever, or both, should include throat cultures and antistreptolysin O titres. These titres should be repeated after an interval of approximately 3–4 weeks, because a correlation of symptom severity with changes in antibody levels is far more informative than an isolated antistreptolysin O titre. We recommend antistreptolysin O titre, because the other antistreptococcal test reported in the PANDAS literature, namely, antideoxyribonuclease-B (antiDNAse , is expensive and not widely available in Canada.

 

As stated in this article a single blood test for strep can not rule out or actually dx PANDAS. Whether a level is rising or declining will give much more information. Some children do have chronically elevated strep antibody levels, what matters is the pattern...rising=a more recent infection...declining=recovery.

 

 

BLOOD TESTS

 

Streptozyme: Detection of multiple antibodies to extracellular antigens of streptococcus with streptozyme is of some diagnostic value but should never replace more standard tests such as streptolysin O antibody (ASO) or DNase-B antibody. These antibodies may be detected in patients after streptococcal pharyngitis, rheumatic fever, pyoderma, glomerulonephritis, and other related conditions. In evaluating a patient with suspected acute rheumatic fever or nephritis, determination of ASO, DNAse-B antibody, and streptozyme will likely yield a positive result in 92-98% of cases.

 

Streptolysin O Antibody (ASO): the ASO test is used to provide serologic evidence of previous group A streptococcal infection in patients suspected of having a non-suppurative complication, such as acute glomerulonephritis or acute rheumatic fever. Use of the ASO for diagnosis of an acute group A streptococcal infection is rarely indicated unless the patient has received antibiotics that would render the culture negative. An ASO performed on serum obtained during the presentation of a non-suppurative complication that shows a titer two dilutions above the upper limit of normal is evidence for an antecedent streptococcal infection. It is recommended, however, to use a second test such as the anti-DNase B to confirm antecedent infections. Elevated serum ASO titers are found in about 85% of individuals with rheumatic fever. When both ASO and anti-DNase B are used, the result is over 95%. Skin infections with group A streptococci are often associated with a poor ASO response.

 

Reference Interval:

0-1 year: 0-200 IU/ml

2-12 years: 0-240 IU/ml

>13 years: 0-330 IU/ml

 

DNase-B Antibody: The majority of group A streptococci produce significant quantities of DNase-B, while most other groups of streptococci do not. High levels of neutralizing antibody to DNase-B are commonly found in patients following a group A streptococcal infection. Since it persists longer than other streptococcal antibodies (2-3 months), it is the preferred test in patients with chorea suspected due to rheuamtic fever. Since it is not influenced by the site of infection, DNase-B antibody is more reliable than the ASO test in providing evidence for streptococcal infection in patients with post-impetigo glomerulonephritis. Elevated titers are strongly suggestive of recent or current infection with group A streptococci. Fourfold increases in itier between acute and convalescent samples taken approximately 2 weeks apart are confirmatory.

 

Reference Interval:

 

1-6 years: < 1:60

7-17 years: <1:170

18 years and over: <1:85

 

So these are the "tests" for PANDAS which are not actually tests confirming PANDAS but rather the presence of a streptococci infection in association with the onset of neuropsychiatirc symptoms in a child.

[kkver]

thanks Ronnas for posting I looked at Blood Test report and his Anti-StreptolYSIN O was .2 but he was still experienceing the Tics . Doctor wanted to go medicine route but i declined as i read the similar artical at NIMH site and my belive that it happened after the Strep Infection which was dealt with Antibiotics.

Anyway I started him on MAG + Calcium 2 days back and today his Tics were kinda low. At some intervals absent and some times not as bad as they were 2 weeks back. I also got some high Vitamin C 500mg Tab along with proboitics which i will intorduce tommorow. Today I will still use MAG aron 200mg + Calcium 200 MG ( i am keeping 1 to 1 ratio for some time ) with Multivitamin , 1 teaspoon fish oil around 1000 mg omega 3 fatty acid and Higher dose of Vitmain C around 800 mg in all and will keep a watch how it goes tommorow. Will intoduce proboitics and may be L carnitine in last resort only if things don't turn around.

Saw a second Nuerologist today and He found nothing wrong and adviced against the medicine. I was in his room for 1 hour and He did't Tick a single time in there. After seeing this he adviced for no medicine route and told that he will use meds only in extreme case. We are keeping our fingers crossed and keeping a HOPE it will fade away . Diet wise i have't made much changes as i wanted him to get better on same things he was eating before but will try to make some adjustments if required. though he ate some Cheese Pizza today but I didn't see any adverse change .

 

Thanks alot for reading my posts and posting replying .

[patty]

kkver,

 

I am looking for a Calcium and Magnesium combo supplement. Can you give me the info on the Cal & Mag supplement name? I was told by someone that Cal & Mag with a 1:1 ratio actually works better than 2:1. Is that why you choose to use to 1:1 instead of the 2:1 ratio?

 

Thx!

 

Patty

[kkver]

Patty

First 2 days i used nature's calm adult supplement with 1 teaspoon for my kid which is around 200 mg instead of 615mg 3 tsp for adults and used Calcuim sours 2 gummy bears from costco ( 200 mgs) . I had to use the Adult one as cause of Easter most of shops were closed and i was able to find Adult one in Henry's . today I bought the kids calm and used approx. 200 mg of that. The difference i found in two is kids calm have extra vitamin C and Zinc but Adult one is only Magnisium. I am keeping my fingers crossed after using the kids calm and hope it will work else i will go back to adult supplement in 200 mg dose . It was just a hunch to use 1:1 as my kid gets more Calcuim supply from milk and cheese. But last 3 days i have given him one meal with spinach and made sure at least one Banana goes in him.

 

In addition i gave him one pill of probiotic today

Yum-Yum Dophilus

[kkver]

Another Day

 

his tics reduced considerbely both motor and vocal throughout the day in the evening i started his vitamin C and saw some vocal tics returning so was wondering if it was Vitamin C which caused it to come back I will try to observe again tommorow as i start him vitamins from 5 PM to 9 pm . Has anyone seen vitamin C bringiing back the tics. kinda tough too see his days pass by but getting lot of courage from this place.

Another thing we are trying to observe is when he's engaged in some thing like puzzle , game or with some friend they kinda go away wondering Why ?

[patty]

KKver,

 

Thx for the info. Just in case you are not aware of this, calcium carbonate is not bioavailable and it is the most available form of calcium around. Also, be sure that the gummy calcium does not have any artificial colors or flavors.

 

Patty