New...son may have PANDAS...some questions

[rhyanen]

Hi, I am new here. I have an 11 year old son who was diagnosed with autism at age 3. He is considered high functioning and has been doing well academically and socially up until the past 6-8 months. We started noticing a regression and tic like behaviors. Many are vocal tics which have become increasingly more frequent and of a very lewd, sexual nature. He will blurt out things that are absolutely disgusting all the while making sexual gestures. Along with it is alot of hyperactivity. He also has minor tics like throat clearing, grunting, blinking the eyes.

 

We are seeing a DAN doctor who is testing him for anti strep antibodies and also for a mitochondrial disorder and pyroluria. We are still awaiting the labs.

 

So my questions are, how common is PANDAS in autistic children, and secomd, how common is PANDAS with sexual type tics of coprolalia and copropraxia? It is getting very disruptive and difficult to be around my son anymore. We love him like crazy, but it's taking a toll on our family.

 

Amy

[peglem]

My opinion...PANDAS is very common in autistic kids, but the symptoms are frequently disregarded as autism characteristics. I also think that sexual compulsions/obsessions/tics are very common (although not talked about as frequently as nonsexual) especially around the time of puberty. In PANDAS sensory input/response often gets scrambled.

[Ozimum]

Hi and welcome!

I agree with peglem. Also I wanted to say that we're having good outcomes seeing a DAN! dr and dealing with vit/mineral deficiencies and gut dysbiosis as well as PANDAS. Hang in there!

[rhyanen]

Thank you both for the replies. I am hoping the bloodwork will steer us in the right direction. Even if it comes back negative, I have confidence that our DAN dr. can help us out. I will keep you posted. Happy holidays!.

[EAMom]

We are seeing a DAN doctor who is testing him for anti strep antibodies and also for a mitochondrial disorder and pyroluria. We are still awaiting the labs.

 

 

Hi rhyanen,

 

re the anti-strep antibodies:

just be aware that lots of PANDAS kids have low (or "normal") strep titers (ASO or anti-dnase b ) ... our dd did (despite positive throat cultures in herself and sister) and PANDAS severe enough to require hospitalization.

 

so, my recommendation would be to get throat cultures (do the 72 hour if the rapid is neg) on EVERYONE in the household. When we learned of PANDAS our PANDAS dd was culture positive (no sore throat, no pharyngitis or other signs of strep (aside from OCD/tics/anorexia/bipolar behavior) at that time and her sister was also positive (also no sore throat). We think they had been positive for over 2 mo. (when symptoms started). They also infected some friends (sleepover) who got symptomatic strep from them.

 

Of course a neg throat culture doesn't 110% rule out strep. Sometimes it is hard to get a good swab. Other times strep is "hiding out" in the sinuses (or skin, or vaginally in girls). That is when titers are useful, when you want some evidence of strep but the throat swab is negative.

 

I think the problem with a lot of PANDAS kids, they get strep without the typical throat signs, they get behavioral symptoms instead. And the strep goes untreated b/c they don't have the sore throat that would trigger the ped to even consider strep/do a throat culture.

 

Also, be aware that other infections (eg. mycoplsma) can trigger symptoms in a PANDAS child. And once the wheels of autoimmunity are in motion, Pandas kids will reacts to many other things (vaccines, viruses, family members with strep).

Edited December 19, 2011 by EAMom

[bulldog24]

my son has PANDAS and his blood work is normal. My son also has confessions of a taboo nature. I was told its common. My son is 6

[LaurenK]

So my questions are, how common is PANDAS in autistic children, and secomd, how common is PANDAS with sexual type tics of coprolalia and copropraxia? It is getting very disruptive and difficult to be around my son anymore. We love him like crazy, but it's taking a toll on our family.

 

 

I was under the impression that the tics and OCD seen with Autism were essentially PANDAS and that the two disorders typically go hand in hand. Can tics and OCD co-exist in Autism w/o PANDAS?

[3boysmom]

Our son was diagnosed with Aspergers at 3. At 9 the sexual intrussive thoughts began along with many of the other characteristics you describe. 2 years later after getting help for PANDAS. He is no longer considered on the autism spectrum.....he had constant ear infections as a baby/ toddler and 2 PANDAS drs believe he was having strep infections in his inner ears and the diper rash that would never clear up....probably strep. Untreated PANDAS can have characteristics of many other disorders and because many doctors have not heard of PANDAS, they diagnos as what it looks closest to.

[3boysmom]

Our son was diagnosed with Aspergers at 3. At 9 the sexual intrussive thoughts began along with many of the other characteristics you describe. 2 years later after getting help for PANDAS. He is no longer considered on the autism spectrum.....he had constant ear infections as a baby/ toddler and 2 PANDAS drs believe he was having strep infections in his inner ears and the diper rash that would never clear up....probably strep. Untreated PANDAS can have characteristics of many other disorders and because many doctors have not heard of PANDAS, they diagnos as what it looks closest to.

[LaurenK]

Our son was diagnosed with Aspergers at 3. At 9 the sexual intrussive thoughts began along with many of the other characteristics you describe. 2 years later after getting help for PANDAS. He is no longer considered on the autism spectrum.....he had constant ear infections as a baby/ toddler and 2 PANDAS drs believe he was having strep infections in his inner ears and the diper rash that would never clear up....probably strep. Untreated PANDAS can have characteristics of many other disorders and because many doctors have not heard of PANDAS, they diagnos as what it looks closest to.

 

 

Does your son currently have any problems after treatment for PANDAS? My sons just recently got an aspergers diagnosis as well. My son wasn't normal before he was on the spectrum and I'm concerned that after IVIG he won't be completely normal either.

[3boysmom]

I think each child is different and some may be truely on the spectrum and ALSO dealing with PANDAS. However it appears that the characteristics and concerns that we could not explain as he was growing up, were issues and flare-ups from strep (pandas) that made him appear "aspergery". His PANDAS diagnosis was acctually a bit of a blessing, because he was becomming more and more autistic like, but now that we are treating the correct problem, no one would ever believe that he was once on the spectrum. When he has a flare up, his ability to answer questions and his interest in friends and brain fog ramp up... But with time and treatment, things are less and less severe. Not sure were the answers will lie for your child, you may get a pleasent surprise. Blessings, Linda

 

Sorry about spelling- no reading glasses while using an iPhone = danger for my spelling.

Edited December 19, 2011 by 3boysmom

[tpotter]

Hi, I am new here. I have an 11 year old son who was diagnosed with autism at age 3. He is considered high functioning and has been doing well academically and socially up until the past 6-8 months. We started noticing a regression and tic like behaviors. Many are vocal tics which have become increasingly more frequent and of a very lewd, sexual nature. He will blurt out things that are absolutely disgusting all the while making sexual gestures. Along with it is alot of hyperactivity. He also has minor tics like throat clearing, grunting, blinking the eyes.

 

We are seeing a DAN doctor who is testing him for anti strep antibodies and also for a mitochondrial disorder and pyroluria. We are still awaiting the labs.

 

So my questions are, how common is PANDAS in autistic children, and secomd, how common is PANDAS with sexual type tics of coprolalia and copropraxia? It is getting very disruptive and difficult to be around my son anymore. We love him like crazy, but it's taking a toll on our family.

 

Amy

 

 

Very common. DS (now 19) has been diagnosed with Asperger's for many years. Following the 2nd IVIG, his social skills jumped 7 years overnight. That being said, you may also want to see about ruling out seizures (maybe see Dr. L. for that). Temporal lobe seizures can also cause the kind of sexual issues you are talking about. Since it is significant, and he is also diagnosed with PANDAS (and most docs don't understand PANDAS,) I would see a pediatric neurologist who understand seizures and PANDAS (that's why I specifically suggested Dr. L.)

[3boysmom]

Actually I did foget to mention that we also started out with Dr. L to rule out any neuro things. She confirmed PANDAS and added Sydenhym's Cohrea. We then went to Dr B for the immune issues.

[rhyanen]

Thank you everyone. It's nice to feel validated and not feel like my son is the only one on the planet having these issues. His obsessions are getting worse. He's been very graphic lately with violent, bloody thoughts. I know he's not violent in action, but he says things like he loves the cat so much that he'll squeeze him till his head pops off and blood spurts out, among other things lewd and disgusting. Still haven't received the labs yet. Our DAN! dr. is gone for the holidays, so I am assuming the labs have been interpreted and are waiting for him. In the meantime I am desperate to try anything that may help until I can talk to his doc. Any suggestions?

[EAMom]

Thank you everyone. It's nice to feel validated and not feel like my son is the only one on the planet having these issues. His obsessions are getting worse. He's been very graphic lately with violent, bloody thoughts. I know he's not violent in action, but he says things like he loves the cat so much that he'll squeeze him till his head pops off and blood spurts out, among other things lewd and disgusting. Still haven't received the labs yet. Our DAN! dr. is gone for the holidays, so I am assuming the labs have been interpreted and are waiting for him. In the meantime I am desperate to try anything that may help until I can talk to his doc. Any suggestions?

 

You can try advil (aka motrin, ibuprofen). Give it 3-4x a day for a few days and see if you notice a difference in behavior. Make sure you give it with some food (not on an empty stomach).