8 yr old boy just diagnosed with tics - new member

[littleDaniel]

Hi All!

 

We just discovered that our son is allergic to dust mites.....Has anyone else had this and could this be the cause of his tics??

 

 

thank you,

LD

[EAMom]

Don't know...

 

I have heard allergies can set off tics.

 

But, kids with PANDAS can be prone to allergies.

 

I would still do the throat cultures to make sure it's not strep. Lots of kids have allergies.

[littleDaniel]

Don't know...

 

I have heard allergies can set off tics.

 

But, kids with PANDAS can be prone to allergies.

 

I would still do the throat cultures to make sure it's not strep. Lots of kids have allergies.

The ASO Titers test came in extremely low (per the doc)...no sign whatsoever of strep. Magnesium levels were normal and no additional allergies (other than dust mites) for this standard allergy test.

[EAMom]

My dd's ASO was also low (39) and she had full blown psychotic pandas...do the culture.

 

(Upper limit of normal for ASO is 150-300 depending on the lab.)

[Chemar]

Hi All!

 

We just discovered that our son is allergic to dust mites.....Has anyone else had this and could this be the cause of his tics??

 

 

thank you,

LD

 

Hi

 

my son has dustmite allergy which definitely triggers his TS tics, plus irritability

 

we use a HEPA filter in his room as well as non plastic protective mattress and pillow covers

 

frequent vacuuming/dusting helps as well as trying to keep things that harbor dust (eg stuffed animals) out of room or frequently washed. We have tile floors not carpets which also helps

 

this may not be the primary cause of the tics and it is good you are looking at other possible causes, but allergy definitely makes things worse IMO

[EAMom]

Re ASO titers:

 

http://www.latitudes.org/forums/index.php?...6&hl=buster

 

You can have low titers and have PANDAS. Below is from Buster's post:

 

One final comment, Swedo does not require high ASO titers or even rising ASO titers to diagnose PANDAS. The titers are checked only when a positive strep culture is not available and you are retroactively looking for an indication of past infection. The flaw with using titers as an indication of prior strep infection is (as I stated above) that "low" values can still be associated with prior strep infections since the rate of ASO titer decline is not known, most people only have a single sample, and the ASO response is variable across individual and strep type.

[littleDaniel]

Re ASO titers:

 

http://www.latitudes.org/forums/index.php?...6&hl=buster

 

You can have low titers and have PANDAS. Below is from Buster's post:

 

One final comment, Swedo does not require high ASO titers or even rising ASO titers to diagnose PANDAS. The titers are checked only when a positive strep culture is not available and you are retroactively looking for an indication of past infection. The flaw with using titers as an indication of prior strep infection is (as I stated above) that "low" values can still be associated with prior strep infections since the rate of ASO titer decline is not known, most people only have a single sample, and the ASO response is variable across individual and strep type.

We saw the primary care doctor's referred Neurologist yesterday who has told us he doesn't believe Pandas exists ...he says it is for quacks...

This is very frustrating...

However, we did convince him to schedule an EEG.

[P_Mom]

okay, HAD to reply to this one. We were told the same thing by our neurologist at a major University Hospital....I can say this with the UTMOST confidence....don't waste your time even going back to him.........ditch him ASAP.....just ask any of us who have dealt with a child who literally changed and became mentally ill/littered with tics overnight....PANDAS does indeed exist!!!!

 

Wonder if he would change his mind if he himself had a child do the same thing???????!!!

 

 

Find a doc that KNOWS PANDAS does exist!!!!

[EAMom]

We saw the primary care doctor's referred Neurologist yesterday who has told us he doesn't believe Pandas exists ...he says it is for quacks...

 

That neurologist is an idiot.

 

P. Mom...Yes, that is my secret dream (not that I would wish an illness on a child)...that these stupid docs who insist PANDAS doesn't exist would see a clear cut psyhotic case of PANDAS in their own child...I think they would change their tune pretty quick.

 

littleDaniel...Do the throat culture. If you wait too long your child may fight off the strep on his own and the culture will be neg. Any evidence of strep will be gone.

[EAMom]

I took him to the doctor who says it is just transient tics and they should pass in a month.

 

Hmmm...I wonder how many of these transient tic kids are actually undiagnosed/untreated mild PANDAS where the tics go away when their own immune system clears the strep after a couple of weeks (which most people/non-carriers will do).

[EAMom]

I took him to the doctor who says it is just transient tics and they should pass in a month.

 

Hmmm...I wonder how many of these transient tic kids are actually undiagnosed/untreated mild PANDAS where the tics go away when their own immune system clears the strep after a couple of weeks (which most people/non-carriers will do).

[littleDaniel]

He appears to have body tics at night just before sleeping....I read someone mention bladder tics. He also has had a major need to go every night for a long time. Could these be related? Is it a bladder tic? Is a bladder tic common with TS or Pandas?

 

tx

[colleenrn]

EAMOM- You posted that if your child has had untreated strep for a period of time, the throat culture may come back negative, therefore there would be no "evidence" of strep. I am awaiting the 72 hour culture results on my 5 yo son who I suspect may have had strep for a few weeks. There have been countless times over the past 7 years that I KNEW my two oldest children had strep based on their behaviors, the culture would be negative, but my kids would always respond to the antibiotics which definitely confirmed for me that it was strep. It makes sense to me after reading your comment that it could be b/c I waited too long (as I am always second guessing whether they have strep b/c they have NO physical symptoms) and that is why the cultures are negative. I luckily have a Dr who will give them antibiotics if I think they have strep regardless of the culture, but I honestly think they don't believe my children could have strep with a negative culture. Any more info would be greatly appreciated. Thanks, Colleen

[EAMom]

Yes, bladder problems (urinary urgency) is a PANDAS symptom. In fact, sometimes it is the *only* symptom.

 

Prospective identification and treatment of children with pediatric autoimmune neuropsychiatric disorder associated with group A streptococcal infection (PANDAS).

Arch Pediatr Adolesc Med. 2002 Apr;156(4):356-61.

"BACKGROUND: The current diagnostic criteria for pediatric autoimmune neuropsychiatric disorder associated with group A streptococcal infection (PANDAS) are pediatric onset, neuropsychiatric disorder (obsessive-compulsive disorder [OCD]) and/or tic disorder; abrupt onset and/or episodic course of symptoms; association with group A beta-hemolytic streptococcal (GABHS) infection; and association with neurological abnormalities (motoric hyperactivity or adventitious movements, including choreiform movements or tics). OBJECTIVE: To assess new-onset PANDAS cases in relation to acute GABHS tonsillopharyngitis. DESIGN: Prospective PANDAS case identification and follow-up. RESULTS: Over a 3-year period (1998-2000), we identified 12 school-aged children with new-onset PANDAS. Each patient had the abrupt appearance of severe OCD behaviors, accompanied by mild symptoms and signs of acute GABHS tonsillopharyngitis. Throat swabs tested positive for GABHS by rapid antigen detection and/or were culture positive. The GABHS serologic tests, when performed (n = 3), showed very high antideoxyribonuclease antibody titers. Mean age at presentation was 7 years (age range, 5-11 years). In children treated with antibiotics effective in eradicating GABHS infection at the sentinel episode, OCD symptoms promptly disappeared. Follow-up throat cultures negative for GABHS were obtained prospectively after the first PANDAS episode. Recurrence of OCD symptoms was seen in 6 patients; each recurrence was associated with evidence of acute GABHS infection and responded to antibiotic therapy, supporting the premise that these patients were not GABHS carriers. The OCD behaviors exhibited included hand washing and preoccupation with germs, but daytime urinary urgency and frequency without dysuria, fever, or incontinence were the most notable symptoms in our series (58% of patients). Symptoms disappeared at night, and urinalysis and urine cultures were negative. CONCLUSION: To our knowledge, this is the first prospective study to confirm that PANDAS is associated with acute GABHS tonsillopharyngitis and responds to appropriate antibiotic therapy at the sentinel episode."

[EAMom]

Hi Collen,

 

Several possiblities for neg culture (yet actually has strep):

 

1) Most (sorry, don't have the reference handy but could find later when time allows) people will "fight off" a strep infection after about 2 weeks even if there are no antibioitics. (This was not the case with dd, still cultured positive after 2 mo.) Of course, a child could still have behavior changes (eg. brain inflammation, ongoing immune response) even though the "trigger" (strep) is gone.

 

2) Some strains of strep are anareobic...so unless the strep is cultured correctly (blood agar actually "punctured") the strep will not grow.

 

3) Just a rapid is done or the culture is only grown overnight, not 72 hours. (My dd had rare growth after 72 hours.)

 

4) Culture swab not done correctly (didn't get a good sample) on an uncoorperative child.

 

5) I don't know if anyone has any more ideas?