What is considered "sudden" or "acute" w/PANDAS

[momofone23]

Hi all,

 

First backgrounder, then my questions........

 

• 15.5 year old son had intermittent eye-blinking tic since age 2. Went misdiagnosed as allergies, etc.

• Developed Herpes on the bottom of one foot at age 3 following a high fever. It took several years and 3 dermatologists to finally get the correct diagnosis.

• Diagnosed with learning disabilities by 2nd grade. Major executive functioning and processing issues

• Displayed some characteristics of anxiety disorder and a little OCD here and there, but pretty mild

• Age 14, VERY rapid puberty onset, voice dropped dramatically in very short time

• At the same time, started onset of a variety of vocal and motor tics, some pretty complex.

• More severe anxiety and OCD symptoms followed, however OCD is mainly limited to the "O" part.

• Herpes seemed to migrate from his one foot to his mouth in the form of mouth ulcers during this same time period.

• None of this is what I would call "sudden" or overnight, however his tics did progress pretty rapidly from mild to moderate/severe, probably over a 2-4 week period

• Throughout all of this, even when his tics are at their worst, his personality and behavior has pretty much stayed the same, except for the typical teenage stuff.

• Now to the point where his tics, anxiety and "O" have made him just about non-functional. He goes to school 3 days a week, but even that is a huge struggle.

• Very sensitive to light, goes to bathroom, brushes teeth in dark. Also very sound sensitive. Puts fingers in ears a lot.

 

He had the initial "ASO titer" which was negative, but from what I understand there are a lot of other blood tests that can help in determining PANDAS or autoimmune issues. From everything I read about PANDAS, it seems like the symptoms (tics, OCD, etc.) are almost literally overnight, and not over a period of several weeks in the onset as with my son.

 

I wondered what you all think considering what I've described with my son's symptoms, onset, progression, etc.

 

Thanks much!

Karen

[bulldog24]

For my son and what i know.....

 

You put your child to bed they wake up . "mentally ill" thats sudden and acute

[bulldog24]

Doesnt sound acute and sudden to me just my opinion. My son is pandas and has normal titers

 

I am relatively new to all this but i literally put my son to bed and woke to a different kid.

[dut]

Hi - just our experience...

 

dd8 was what I would consider classic sudden onset. Went to bed Sunday night normal, woke up Monday with the whole laundry list of major and minor PANDAS symptoms. She has never tested with raised titers but has responded well to abx and steroids.

 

With hindsight, she had some vomitting worries following a couple of GI infections. They did stand out at the time 'cos she didn't get concerned with what had made her ill until a couple of weeks after it stopped. The time lag seemed unusual. She also had minor sensory issues round ages 2/3 but we just thought quirky - loving to rip clothes off when home/sock problems etc.

 

Ds is a very different but still PANS story. He would, to non PANS folk, seem like a normal 4 year old boy who now and again goes off the rails, behaviour wise. I imagine at these times he'd easy make a ADHD dx, sensory dx, maybe ODD dx. He has had all the minor PANS symptoms and it is only now as he gets older and can verbalise more that I am seeing the OCD stuff creep in. He also had a 3 week tic that abx stopped.

 

He has never had a raised titer but has swabbed positive during a flare of symptoms (no normal strep throat symptoms) and responded well to abx.

 

He has not been sudden onset as I think most people woiuld see it. We believe and have had that agreed with by a couple of PANS big gun drs, that he probably started when he was 7 months old, the same time his sis had her first recognised episode. It took me, with an already PANS child in the house, until he was 2 to realise that he too has PANS. Whne he was 7 months he had an overnight onset of extreme separeation anxiety. This is not uncommon at this age but the severity was. We and everyone round us said age and we also assumed the added emotional aspect of having a sick sister and distracted parents.

 

This was followed by regressions in behaviour and sleep at severe illnesses. It was like he got sickness behaviours like all little kids but his didn't go away for week or months.

 

I have absolutely no doubt in my mind that had his sister not got the sudden variant, I would never have put 2 and 2 together. Maybe as he got older, his behavioural regression/personality changes do fairly clearly follow illness but not just strep, we might have worked it out but I doubt it.

 

Both kids did the Cunningham test and tested high middle PANS range.

 

 

For me, the constellation of symptonms says way more than onset, especially if this has been happening since a very young age.

 

good luck

Edited January 11, 2012 by dut

[tpotter]

I totally get where you're coming from. DS15 was sudden onset (went to bed, normal, and woke up the next day not ok.) He was 8 at the time.

 

DS (now19) became suicidal at 15. He was hospitalized. At that time, and for years before, he was treated with psychotropic meds that did nothing for him. Prior to age 15, he was diagnosed first with ADHD (2nd grade), and Aspeger's 7th grade (although he was always Aspie-like.) Psych meds made him incredibly violent. We finally weaned him off. Because younger DS was finally seen by Dr. K, and he had written a paper on adult and adolescent PANDAS, we put 2 and 2 together, and figured out that he probably had PANDAS. Next 2 episodes of suicidal ideations were treated with abx, and we had instant (within hours) elimination of symptoms. We stumbled upon a first grade writing log that definitively showed massive changes in handwriting, and knew it dated back at least that far. We actually suspect it might have been either from the MMR vaccine that he had an allergic reaction to, or possibly even from birth.

 

We now know that there's even lyme and bartonella invovled (positive tests), but don't know if that was pre- or post- strep onset.

 

So, the reality is, that it's kind of hard to say that every child has a "sudden onset." Maybe my older DS did, but it just wasn't severe enough for us to notice.

[butterflymom]

=

Edited October 7, 2015 by tampicc

[smartyjones]

i do refer to ds7 as 'sudden onset' -- however, this is the story. . . at age 4.5, he had a wild behavioral flip around the time of halloween. he had school refusal, wild ODD difficult behaviors that were undeniable. he also had some issues such as strong thirst. (i can't remember all other symptoms right now).

we had taken a trip to Denver the july before. he had unexplained vomiting one night -- we attributed it to the high altitude. he had an episode of extreme cognitive inflexibility at an outdoor party. was his normal self the rest of the trip and once we got home until november.

 

he had had one or two other episodes of such type of extreme cognitive inflexibilty before in his life -- but of course, at that time, he was 3 or 4 and they were very short and it was easily attributable to age -- could still even be actually.

he had treated strep at 22 months -- 2 and a half years prior to onset -- of course, we never checked to ensure the treatment 'worked' and the strep was gone.

 

i now definitely believe the issues in july were related -- 4 months prior to 'sudden onset'. just kind of like low level things peeking through.

 

for us, 'sudden onset' was helpful as criteria b/c it was so bizarre and extreme -- however, i do think there are likely tons of cases that the 'sudden' is not so extreme and easily written off as something else that seems plausible and is missed but it really should fit. the exacerbation may not be so extreme and everyone believes it is part of the child's personality or 'a phase' and it goes unrecognized as an exacerbation.