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PANDAS or Tourettes?


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19 replies to this topic

#1 tattoomom

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Posted 17 May 2011 - 03:40 PM

X-posted with the Tourette's board-

My son, now 10, started ticcing at age 5. He was recently diagnosed with Tourette Syndrome. We've never connected his tics to a strep infection but his tics started after a long bout with Mycoplasma. Antibiotics really help him when he has a flare up of tics so it's hard to say. He also takes Intuniv and Zoloft and is doing quite well.

Last November, his younger sister started burping constantly and we thought it might be a tic but took her to the doctor in case it was acid reflux or something of that nature. To our surprise, she tested positive for Strep throat! She was treated with abx and the burping subsided. The burping is back in full force along with some OCD's (she has to burp 148 times before she falls asleep), she won't step on yellow lines, she's obsessed with time, she picks her fingers around the cuticles until they are bleeding and down to the meat) and just a few days ago, she started an eye tic. She's widening her eyes (how you look when your surprised!) and she does this randomly throughout the day.

I called the Pediatrician and she has an appt. next Tuesday to check for strep.

What are the odds??? Is it more likely to have 2 kids with Tourette's? How unlikely is it to have 1 child with Tourette's and 1 PANDAS child? Or could she and my son both be PANDAS?

I have 3 kids and am pregnant with my fourth. I'm terrified that since 2 out of the 4 have tics and OCD's that this might be genetic! Help!!

Tricia

Mommy of 4

Ethan (3/01)- PANS 2/06
Olivia (9/03)- PANDAS 11/10
Ava (9/08)- PANDAS 2/11 

Emma (11/11)- so far so good



#2 peglem

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Posted 17 May 2011 - 04:24 PM

Mycoplasma is a known PITAND trigger. Its very common to have more than one child w/ post infectious "symptoms." I wonder, did you notice your son's tics increase or change when your daughter had strep? Its also very common for PANDAS/PITAND kids to flare in response to exposure, even if they do not get an infection. (its the antibodies, not the pathogen that cause the problem.)

Just my opinion- I don't know much about tourettes, but it seems to me that tics are a symptom of some underlying condition and finding the underlying condition is key- be it allergy, autoimmune, injury, etc.

-Peggy, mom to 19yo PANDAS daughter w/ onset probably in infancy. Manifests w/ severe autism symptoms and currently nonverbal.


#3 tattoomom

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Posted 17 May 2011 - 05:03 PM

My son's tics DEFINITELY increase when his sister has strep. We've noticed that several times. Our Pediatrician is awesome enough to treat him when she has a strep infection and the abx help his tics tremendously.

I just wonder how common it is to have 2 siblings with Tourette's v/s 2 kids with PANDAS?

Tricia

Mommy of 4

Ethan (3/01)- PANS 2/06
Olivia (9/03)- PANDAS 11/10
Ava (9/08)- PANDAS 2/11 

Emma (11/11)- so far so good


#4 dcmom

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Posted 17 May 2011 - 05:13 PM

Tatoomom-

I have two kids, both have PANDAS :(

I think there are quite a few of us on this forum with multiples. They do think there is a genetic component- although many moms her have a bunch of kids- not all have pandas, so I wouldn't panic.

My girls are also very sensitive to strep exposure.

#5 tattoomom

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Posted 17 May 2011 - 05:26 PM

So how do they know it's PANDAS and not Tourette's?

Just wondering if my son's TS diagnosis is wrong now that his sister has tics/OCD associated with strep?

Tricia

Mommy of 4

Ethan (3/01)- PANS 2/06
Olivia (9/03)- PANDAS 11/10
Ava (9/08)- PANDAS 2/11 

Emma (11/11)- so far so good


#6 rockytop

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Posted 17 May 2011 - 06:09 PM

I would be suspicious of the TS diagnosis- I have 2 with PANDAS & a third with year-plus of incessant vocal tics that cleared with a month of steroids and zithromax.
That child would proabably have been diagnosed with Tourette's disorder, had we not known about PANDAS and had a PANDAS doc not given us the steroids & abx. She has been tic free for 4 months!

Edited by rockytop, 26 May 2011 - 02:58 PM.


#7 dcmom

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Posted 17 May 2011 - 06:12 PM

Well, firstly my kids have not had tics- only ocd (plus frequent urination, sleep issues, restrictive eating, sensory issues, etc). Both girls had an overnight onset at the same time as positive cultures for strep. Since, they have reacted to other triggers (other illness, strep exposure, loosing baby teeth). It has been hard, but they are happy and doing well. The label will not change the symptoms- so don't be upset- in fact, there is treatment for pandas, if needed. You will find a lot of support here.

#8 peglem

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Posted 17 May 2011 - 06:24 PM

So how do they know it's PANDAS and not Tourette's?

Just wondering if my son's TS diagnosis is wrong now that his sister has tics/OCD associated with strep?

The fact that you get tic reduction from abx would seem to suggest that the tics are connected to a bacterial pathogen. I don't think its necessarily one or the other. Tourettes is a description of a neurological manifestation- it can be caused by immune dysfunction.

-Peggy, mom to 19yo PANDAS daughter w/ onset probably in infancy. Manifests w/ severe autism symptoms and currently nonverbal.


#9 kimballot

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Posted 17 May 2011 - 06:56 PM

So how do they know it's PANDAS and not Tourette's?


TatooMoom - That is the million dollar questions-- and (quite honestly) the experts have spent several years battling this out in the literature with research studies. For me, PANDAS was more fitting for my son because his symptoms always flaired very suddenly with sinusitis, and often his ONLY symptom of sinusits was behavioral changes (which was then confirmed with sinus ct scan). Also, his behaviors always improved with antibiotics.Plus - he had symptoms that are not usually associate with tourette, like sudden on set urinary frequency, separation anxiety at night, handwriting decline, and loss of math skills. Finally, we had his blood drawn and sent to Dr. Cunningham's lab for testing in her research study. It wast worth it for us, because the blood test showed that the antibodies in my son's blood reacted with neurons in the same range as other kids with PANDAS - while kids with Tics, OCD, and ADHD without PANDAS did not react the same way. This is not an FDA approved blood test for PANDAS, but seeing my son's numbers in the PANDAS rage affirmed what I had been suspecting for years.

Edited by kimballot, 20 May 2011 - 03:28 PM.

Parent of teenager with PANS from young age. Mild primary immune deficiency. Chronic sinusitis. Possible bartonella,  Antibiotics.  IVIG. History of severe exacerbations.  Continues to show improvement. There is hope for our children.  Let's work together for early identification and treatment!


#10 amyslp

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Posted 18 May 2011 - 03:47 AM

Don't know if I read your post right, but the first thing I'd do is get a strep test today, not a week from today. This type of problem warrants a sick call appt. If the symptoms improve with ABX, it's likely PANDAS. Sounds like you might want to see a PANDAS doc. for both your kids.
Allison, age 8, dx. PANDAS at age 4 after 6 months of chronic strep infection and EBV
Jillian, age 5, dx. PANDAS at age 3 initially after impetigo.
Myself, my sisters, my father and my paternal grandmother all with symtoms consistent with PANDAS/OCD

#11 chodnett

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Posted 18 May 2011 - 06:34 AM

I would check yourself for lyme. This has turned out to be the problem for my children as well. I have passed lyme on to them.

#12 tattoomom

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Posted 18 May 2011 - 06:48 AM

Don't know if I read your post right, but the first thing I'd do is get a strep test today, not a week from today. This type of problem warrants a sick call appt. If the symptoms improve with ABX, it's likely PANDAS. Sounds like you might want to see a PANDAS doc. for both your kids.



That's what I thought, too! But when I called, the nurse said she'd talk to the dr. and call me back. When she called back, she gave me an appt. for next week! I'm wondering if we've missed the window for the positive rapid strep test anyway, since her symptoms flared up quite a while ago?

Tricia

Mommy of 4

Ethan (3/01)- PANS 2/06
Olivia (9/03)- PANDAS 11/10
Ava (9/08)- PANDAS 2/11 

Emma (11/11)- so far so good


#13 tattoomom

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Posted 18 May 2011 - 06:50 AM


So how do they know it's PANDAS and not Tourette's?


TatooMoom - That is the million dollar questions-- and (quite honestly) the experts have spent several years battling this out in the literature with research studies. For me, PANDAS was more fitting for my son because his symptoms always flaired very suddenly with sinusitis, and often his ONLY symptom of sinusits was behavioral changes (which was then confirmed with sinus ct scan). Also, his behaviors always improved with antibiotics.Plus - he had symptoms that are not usually associate with tourette, like sudden on set urinary frequency, separation anxiety at night, handwriting decline, and loss of math skills. Finally, we had his blood drawn and sent to Dr. Cunningham's lab for testing in her research study. It was costly, but worth it for us, because the blood test showed that the antibodies in my son's blood reacted with neurons in the same range as other kids with PANDAS - while kids with Tics, OCD, and ADHD without PANDAS did not react the same way. This is not an FDA approved blood test for PANDAS, but seeing my son's numbers in the PANDAS rage affirmed what I had been suspecting for years.


Thanks for the info! BOTH of my kids have experienced sudden on set urinary frequency and separation anxiety at night. Interesting...

Tricia

Mommy of 4

Ethan (3/01)- PANS 2/06
Olivia (9/03)- PANDAS 11/10
Ava (9/08)- PANDAS 2/11 

Emma (11/11)- so far so good


#14 tattoomom

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Posted 18 May 2011 - 06:54 AM

I would be suspicious of the TS diagnosis- I have 2 with PANDAS & a third with year-plus of incessant vocal tics that cleared with a month of steroids and zithromax.
That child would proabably have been diagnosed with Tourette's disorder, had we not known about PANDAS and had a PANDAS doc not given us the steroids & abx. She has been tic free for 4 months!

I have 8 kids and only 3 affected. I hope to keep it that way.



Wow!! That's wonderful that she's been tic free for 4 months!! That's the other thing with my son that made me question the TS diagnosis... he will go MONTHS tic free and then BAM! He will tic. Then break again. It's not constant.

My husband experienced a vocal tic as a child that was transient; went away and never came back. He definitely didn't have Tourette's but it makes me wonder if he has a gene?

Tricia

Mommy of 4

Ethan (3/01)- PANS 2/06
Olivia (9/03)- PANDAS 11/10
Ava (9/08)- PANDAS 2/11 

Emma (11/11)- so far so good


#15 tattoomom

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Posted 20 May 2011 - 03:05 PM

So I spoke to my son's Psychiatrist (the one who diagnosed him with Tourette's) about his younger sister's sudden onset of symptoms and she said, "Well, Tourette Syndrome runs in families." :(

When I suggested PANDAS, she said, "Well, no matter what the cause, the treatment is the same." Meaning talk therapy mixed with psychiatry medications. While those things have helped my son, I do not agree with her that that's the correct way to treat PANDAS.

Hoping the Pediatrician will be more helpful on Tuesday.

Tricia

Mommy of 4

Ethan (3/01)- PANS 2/06
Olivia (9/03)- PANDAS 11/10
Ava (9/08)- PANDAS 2/11 

Emma (11/11)- so far so good





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