PANDAS in 16 year old?

[emma1]

My daughter is 16 years old. About four months ago, she began having a vocal tic. It is not (usually) really disruptive, but definitely there and had never been there before! I believe she attempts to control it, and goes to her room and plays music if she can't. At first I thought it was stress, as school was very stressful during that time. I started watching her, and recently became to notice some OCD as well. I spoke with her doctor about it (my daughter will NOT talk about it), and he said it was probably just a vocal tic -- like it was no big deal! We did go in for an examination, and blood tests were ordered checking for a variety of things. Today, the doctor called and said everything had come back in the normal range, except the strep titre which was "abnormally high." He did not say how high. He said he was putting her on amoxicilan for 10 days, and then wanted to recheck the titres. I have been researching Bonnie's vitamins and Chemar's program. Any ideas on what we should be doing? Can a 16 year old get PANDAS -- or is there an adult version???? Also, she has been having allergies, and went on Zyrtec three days ago, and the tics got a lot better -- anyone else experience this?

[mmazz]

My ped. told me that allergies are a trigger. The smallest sensation can cause tics. When my son is stuffy he grunts to clear his ears/throat, hence the tic. Sometimes if it was not for the grunting sound I would not know to give him allergy meds. because he really doesn't complain about stuffiness. I am not a big fan of meds and we are dealing with a lot of tics this last week but between school, allergy and the stress of a house guest and his grandfathers illness who wouldn't tic?

 

I hope i answered your question.

 

Marie

[faith]

Hello Emma and welcome,

I find your experience very interesting. Could I ask what kind of vocal is it? Is it just a throat clearing like when someone tries to clear mucous, or sound like a grunt or a "HUH"? You say you have never noticed this in her before ever, or any other small tics in the past? Also, what type of doctor did the titers test and was that just part of the blood test or did you request it? I'm surprised your doctor knew to do this if she didn't have any sore throat , or did she? Have they prescribed antibiotic, and if she starts taking them, please let us know what effect it seems to have.

 

Also, when you say she had recent allergies, do you know what it was from? And the zyrtec was helpful?

 

sorry for the third degree, but my son has had a vocal (the "huh" sound) for some time and I am heavy into figuring out all the variables, so knowing others observations helps me alot. Do you have any pets? I'd be interested to know that.

 

I can't anwer your question about PANDAS for sure, but I suppose anything is possible and the two symptoms (vocal and some ocd) in conjunction with elevated titers does sound like there is something there. I'd be interested to know what your doctors tell you.

 

Thanks for your input.

Faith

[emma1]

I am pretty close with my daughter, and I can say with some certainty that she has never had any tics or ocd symptoms whatsoever before four months ago. The only time she would talk to me about it, she said it started happening to her at about the same time I noticed it.

 

I cannot think of anything in our home or her school that has changed. It started during a time when school was stressful, but she was also having a very active social life. The only thing I could remember was that she stayed home part of one day because she had a sore throat. But she said she felt better, and went in at noon. About a week or so later, I noticed sounds. Sometimes it is a hum, but often sounds like she is repeating the same short phrase over and over.

 

I am actually not sure what all the various blood tests were -- but I asked that he run carnitine levels and a strep titre (based on info from this board). When titre came back high, he prescribed antibiotics.

 

The allergy symptoms (basically sneezing) started about three weeks ago -- again, no idea why. And no idea why the Zyrtec helps -- or if it really is the Zyrtec or a coincidence. Every once in a great while, she does have allergy-type symptoms, but they usually go away in a few weeks -- I usually just use something OTC.

 

We do have a bichon -- supposed to be allergy free -- have had her for four years.

[kim]

Emma 1,

 

Can you recall the last time your daughter received any type of vaccination?

 

Just wanted to add, that my son improved with zyrtec, but it was mostly behavioral change for the better. I think he was really suffering with histimine issues.

He didn't have the normal watery eyes, stuffy nose symptoms, but he did itch from head to toe.

 

I was also wondering, if you got a copy of any of the lab results that were done? Do you know if zinc levels were tested by any chance?

 

Kim

[Ronnas]

Although the information regarding PANDAS in older adolescents and adults is limited there is some information in medical journals regarding this. Hopefully you will see an improvement with the antibiotic. In our situation with PANDAS the improvement has always been with 1-2 days. Would your daughter be more willing to talk if you explained strep and PANDAS to her? Really in order to help her you need good communication with her so that you know what is going on. My son is on azithromycin prophylatically (1 1/2 years) and does well with this. If you do not notice an improvement with amoxi. then a 5 day course of azithromycin or another antibiotic like clindamycin may be helpful.

 

 

1: Biol Psychiatry. 2001 May 1;49(9):807-10. Links

The question of PANDAS in adults.Bodner SM, Morshed SA, Peterson BS.

Department of Psychiatry, Yale University Medical School, New Haven, Connecticut 06519, USA.

 

BACKGROUND: Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections (PANDAS) are a well-defined cause of obsessive-compulsive disorder in children. However, they have not been described or fully investigated in adults newly diagnosed with obsessive-compulsive disorder. METHODS: We describe an adult with onset of obsessive-compulsive disorder at 25 years of age after a severe antibiotic-responsive pharyngitis. He was evaluated with multiple psychiatric rating scales for obsessive-compulsive disorder and Tourette's syndrome, as well as with serologic assays and radiologic studies. RESULTS: In all respects except age our patient fulfilled established criteria for PANDAS. Assays for antibodies to group A beta-hematolytic streptococci, serum D8,17 lymphocytes, antistriatal (neuronal) antibodies, and anticytoskeletal antibodies all supported the hypothesis that a poststreptococcal process was active. Magnetic resonance imaging was abnormal and is described. CONCLUSIONS: The findings suggest that this patient's illness is similar to PANDAS in presentation and that poststreptococcal disease may result in adult-onset obsessive-compulsive disorder.

PMID: 11331090 [PubMed - indexed for MEDLINE]

[emma1]

Ronnas, thank you for the information.

 

My daughter seems to have gotten more tics since starting the antibiotic (amoxicillin). Someone said that it could be something artificial -- and the pills are pink. If the tics aren't gone after the amoxicillin, should I push for the azithromycin? Does it matter what the strep titre does? My doctor said he would want to get the titre down, but did not say he would keep her on meds until tics subsided. Do I wait after we finish the amoxicillin, or immediately ask for something more?

 

You said your child had been on meds for a while -- is his titre normal, or does it just not go down? Was it difficult to get the doctor to keep your son on it prophylatically -- did you need to find a specialist?

 

Thanks for all your help!!!!!

[faith]

My ped. told me that allergies are a trigger. The smallest sensation can cause tics. When my son is stuffy he grunts to clear his ears/throat, hence the tic. Sometimes if it was not for the grunting sound I would not know to give him allergy meds. because he really doesn't complain about stuffiness. I am not a big fan of meds and we are dealing with a lot of tics this last week but between school, allergy and the stress of a house guest and his grandfathers illness who wouldn't tic?

 

I hope i answered your question.

 

Marie

 

Marie,

what allergy treatments do you use for your son? Are you saying when you give him the allergy med, it diminishes his tic? Are you using it now for last weeks, or prefer not to give allergy med?

 

Thanks

Faith

[Ronnas]

1: J Child Adolesc Psychopharmacol. 2007 Aug;17(4):533-8. Links

Tics, Anxiety, and Possible PANDAS in an Adolescent.Coffey B, Wieland N.

NYU Child Study Center, 577 First Avenue, New York, NY 10016. Barbara.coffey@med.nyu.edu.

 

PMID: 17822348 [PubMed - in process]

 

I don't have an abstract to post for this study but obviously from the title it is a report of PANDAS in an adolescent.

 

The high titers may or may not be related to the appearance of the vocal tic and OCD. Below is information I have posted before...

 

I have put some info below from the NIH. The majority of information that I have read would put a normal range for a strep titer test at 0-400. The majority of children with PANDAS that I have read about had very high titers. 600, 800, 1000's, 2000's. There is NO test for PANDAS.

 

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.

 

One of the best articles on PANDAS in my opinion:

 

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

 

The ASO and Anti-DNAse-B titers that are elevated in association with other symptoms of PANDAS such as a DRAMATIC onset of symptoms, etc means that it is suggestive that strep could be a trigger but the best doctors can do is make an association between symptoms and the onset of tics or OCD. There is no full proof way to rule out or confirm a PANDAS diagnosis...therefore the CONTROVERSY among doctors.

 

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.)

 

I wish I knew what to advise re: antibiotics. If your doctor will give it a try I would recommend a 5 day course of azithromycin, there seems to be better results with azithromycin with PANDAS than with amox. Years ago we tried PenVk with my son and it did not help at all. At that time we used Keflex and the doctor wanted to switch to PenVk but my son did not respond to it the way he did with Keflex.

 

Over time your daughters titers should come down. It's kind of a complicated story but my son has never had strep titers done.

 

In terms of having prophylactic antibiotics prescribed for my son, we had an infectious diseases doctors prescribe clindamycin as needed years ago...basically if he showed PANDAS symptoms we would give him a course of clindamycin and this would settle him down. When the study below re: azithromycin was published I took it to my family doctor and she agreed to switch from clindamycin to azithromycin with very good results.

 

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