Anyone else have all symptoms except tics? Is it PANDAS?

[FrogPrince]

It was suggested by a doctor about 3 years ago that my then 4 year old son my may have PANDAS. It seemed that he either had strep or was getting over strep. When he had it, he would be a completely different person. After doing research, it seemed that he had every single symptom except tics.

 

His behaviors completely change and he goes from this sweet little person to an extremely aggitated, angry guy and experiences every single symptom on the PANDAS checklist.

 

This is were it gets a little complicated. He is currently diagnosed with anxiety and bipolar. It is manageable until he gets sick, whether it's a cold, ear infection, losing a tooth, etc. he becomes a completely different child. Basically any time his system is effected the PANDAS symptoms kick in.

 

Does this still sound like PANDAS? Can someone weigh in on this?

 

It seems as though there used to be more focus on the behavioral side of it a few years ago but now the focus seems to be on the tics.

 

THANKS!

[Chemar]

Hi and welcome

I am bumping your post up so others can reply

 

as far as I know, tics don't have to be present for it to be PANDAS

[scossio]

my son was just dx with pandas by Dr. B and he does not have tics.

[dcmom]

I have two children with pandas, who have responded very well to treatment, and NEITHER have tics. They present mainly with ocd, but also urinary frequency, difficulty sleeping, anorexia, sensory issues, anxiety, temper tantrums, mild agoraphobia, etc. When they are not sick, they are 100% normal thanks to pandas treatment.

 

My suggestion: get to an experience pandas doc for proper evaluation and treatment asap.

[airial95]

My son had no tics at onset and dx. All behavioral as you note. About a year post onset he started small facial tics, unnoticeable if we didn't know what we were dealing with. 21/2 years in, he has his first "real" tic that's identifiable.

 

My daughter was dx last year, onset about a year ago- all symptoms are behavioral, no tics.

 

So yes - it can be PANS without tics

[MomWithOCDSon]

Just another "yay" vote for getting checked out and at least giving an antibiotic trial a go.

 

Yes, PANDAS can be the culprit, even absent tics. My DS's symptomology looks a lot like DCMom's DD's, despite the gender and age differences (he's just shy of 15 now).

 

Is your DS not only better when he's not "sick," but also better when he's taking antibiotics for some other condition, say an ear infection? If so, that alone is a significant clue, IMHO.

[nicklemama]

I believe the current diagnostic criteria says and/or tics. I'd have to look that up, though. I'm going to just put this out there, keeping in mind I'm no doctor. I'd bet money your son does not have Bipolar. My bet is on all his symptoms and behaviors being caused by PANDAS. Anxiety is a part of PANDAS. My DS was diagnosed w/ Aspergers and Bipolar just before he was diagnosed w/ PANDAS. We never had him on any meds for bipolar and the antibiotics and IVIG took away the bipolar like behaviors, as well as the Aspergers behaviors.

 

My DS's behaviors ramp up w/ colds, ear infections, losing teeth, teeth cleaning, etc.... Now that he's on abx, the ramping up is really no more than a minor flare. Its nothing like it was before treatment for PANDAS.

 

My son did develop tics but not until after he'd gone a long time w/out a diagnosis or treatment for PANDAS. His main presenting behaviors were severe separation anxiety, anger, irritibility and OCD.

[Kiera]

Yes, it certainly can be pandas. Please read 1tiredmama's post "new here, waving to everyone". My ds started out like this too, and as the years go on, new and new diagnosis keep getting added to the pile. Just cut to the chase and go see a pandas expert to get properly evaluated and on the right track now. So wish I had done it 2 years ago, hindsight is 20/20!!

[FrogPrince]

Thanks for the quick replies!

 

I feel like we have to keep peeling the onion back to get to the center here.

 

He was originally misdiagnosed with ADHD because of the manic state he gets at times. After two years of the wrong meds and multiple doctors we found a couple that thought the ADHD systems were stemming from his extreme anxiety and that he also had a mood disorder. Made sence. He was put on clonidine to help with anxiety and risperdall to help with moods. Benedryl as a PRN.

 

Everything was good for awhile (sleeping for the first time in years, calm state, doing better in school, etc) and then BAM!!! PANDAS.

 

Overnight he became a differnt child again. As he gets older it seems to be getting worse and he gets in a very manic state with lots of aggression. We submitted him into a pediatric phyc unit becuase he was becoming a danger to himself and his mother.

 

The doctors at the hospital didn't buy into the PANDAS and kept going back to the anxiety and bipolar. Then they ran a bunch of tests and he had an ear infection. Bingo! There is the trigger for PANDAS.

 

So peeling it back, yes, the ADHD symptoms are from the anxiety and mood disorder but those are biproducts of the PANDAS...which nobody around here wants to touch.

Edited February 9, 2012 by FrogPrince

[dcmom]

Frog Prince-

 

The unfortunate reality is that many parents need to travel, sometimes across the country, for pandas treatment

 

I would try to get an appt with a doc experienced in treating pandas aggressively asap.

[Iowadawn]

Run, don't walk to a doctor skilled to address your son's needs. Welcome.

[momcap]

Thanks for the quick replies!

 

I feel like we have to keep peeling the onion back to get to the center here.

 

He was originally misdiagnosed with ADHD because of the manic state he gets at times. After two years of the wrong meds and multiple doctors we found a couple that thought the ADHD systems were stemming from his extreme anxiety and that he also had a mood disorder. Made sence. He was put on clonidine to help with anxiety and risperdall to help with moods. Benedryl as a PRN.

 

Everything was good for awhile and then BAM!!! PANDAS.

 

Overnight he became a differnt child again. As he gets older it seems to be getting worse and he gets in a very manic state with lots of aggression. We submitted him into a pediatric phyc unit becuase he was becoming a danger to himself and his mother.

 

The doctors at the hospital didn't buy into the PANDAS and kept going back to the anxiety and bipolar. Then they ran a bunch of tests and he had an ear infection. Bingo! There is the trigger for PANDAS.

 

So peeling it back, yes, the ADHD symptoms are from the anxiety and mood disorder but those are biproducts of the PANDAS...which nobody around here wants to touch.

 

My DS8 was also misdiagnosed with ADHD when he was 6. I had been looking for help since he was 3, and I had no idea what was going on, but I knew it was NOT ADHD!!! He went on to be diagnosed with mood disorder (nice way of saying bipolar), and general anxiety disorder. He also has a severe ramp up of symptoms with every/any illness. I tracked symptoms, behaviour, and illnesses on a calendar for almost 2 years before I found out about PANDAS. DS does not have any motor tics. When he's severely stressed (usually at school) he does have vocal tics. I don't know if they are true vocal tics, or more of an OCD repetitive thing. But they do seem mostly uncontrollable and they are very disturbing to others - shrieking, squeaking, beeping, chicken noises, hooting, etc. Sometimes he will get stuck on a word and repeat it hundreds of times. We tried Risperdal, which didn't really help. He had a script for Clonodine that I never filled because by then I found out about PANDAS.

 

When we initially treated for PANDAS he had a dramatic improvement on abx, and we couldn't believe it. But he could not sustain the improvements. We went on to treat with higher dose, stronger antibiotics (augmentin and then biaxin), and instead of getting better he got new symptoms - swollen joints, rashes, fevers. We went on to discover that he has lyme disease - something we knew nothing about. Today he is being treated for strep (ASO has been elevated for 3 years!!!), borrelia (lyme), and bartonella. He's improved so much I think it's fair to say he's not even the same kid anymore. Last year he was unable to attend school, was attending a juvenile bipolar clinic, and was supposed to go to a special school for children with emotional/mental health difficulties. Today he's in a regular grade 3 classroom, excelling academically and making strides socially. Finally we have answers, and HOPE!

 

In answer to your question - YES, it does sounds like PANS. Don't give up on peeling that onion! There are many infections that can cause PANS - strep, mycoplasma, lyme & co-infections, mono, etc. Many of us are finding out that our children have more than one. Do you have a good doctor who can look into all of this?

[EAMom]

You don't need tics to have PANDAS.

 

Your son sounds like classic PANDAS. Many PANDAS kids are misdiagnosed with bi-polar and anxiety (and tourettes, and adhd, and well, the list goes on.)

 

Did you say where you live? maybe someone can rec. a doc

[FrogPrince]

Rochester, NY

[FrogPrince]

Momcap...sounds very similar.

 

My son doesn't have tics but he does do things like clapping, yelling, shrieking, etc. All when he sick and isn't regulated.

 

He was taken out of his class a couple months ago and put in an 8-1-1 class. He was doing well before this episode. Now they are talking about a special school for children with emotional/mental health difficulties as you mentioned.

 

Thanks for sharing!