chronic PANDAS kids

[kcdc3]

Susan: What dose of zith are you on and how long have you been on it?

[Suzan]

Susan: What dose of zith are you on and how long have you been on it?

 

DD8 had her drastic improvement on 500mg of zith daily. She improved within 1 day. Before that she was on 250 mg daily since around July and she had some initial improvement but eventually started failing. We increased her zith around November 1st. She did well until I decreased her meds at Christmastime. She weighs 72lbs

 

DD7 did her best on 250 mg daily (started in July and did that for about 2 months). She was like another kid. She did OK on 250 mg every other day but has been slowly failing so I hope to see her improve on her dose increased back to 250mg every day. She weighs 46 lbs.

 

Susan

[monarchcat]

I would say DS(8) is chronic. Behavior turned right after 5th birthday, but nothing that would indicate a medical problem at the time. Tics started at age 6. First confirmed strep infection at age 7 (explosive onset of tics with that infection after being tic-free for several months). I would say that over the years he's waxed and waned but never really gotten back to baseline except for a few brief times. We didn't realize it was PANDAS until last year and didn't begin treatment w/ abx until last Aug/september. He has done azith 250mg/day (for about 2 months) with some improvement then regressed, 30 days of prednisone after which we thought we saw some brief improvement in behavior/mood but then he regressed, and now are about 3 weeks in to a course of augmentin 2000mg/day. I think we are seeing more gradual, sustained improvement now. At least we hope so. There is definitely no "quick fix" for him, though, but my hope is that "slow and steady wins the race."

[thereishope]

Could a sudden onset child have been originally chronic then they just had the "one that broke the camel's back" and sent them over the edge?

 

I wonder how many sudden onset kids had any type of disorders or issues prior to that overnight change.

[MomWithOCDSon]

Could a sudden onset child have been originally chronic then they just had the "one that broke the camel's back" and sent them over the edge?

 

I wonder how many sudden onset kids had any type of disorders or issues prior to that overnight change.

 

I wonder the same thing, and I'm in the process of going through my son's medical record history, from birth up to now, to see if I can pinpoint when, what, why and how.

 

He had chronic ear infections from about 18 months until we had tubes put in his ear drums at 3. At about 2 to 2-1/2, we recognized that he was hyper-sensitive to some things, like noises and the feel of his clothes, and that he could be hyper-reactive, also, to spontaneous changes in his routine, etc. Could the ear infections have begun all of this?

 

The OCD was diagnosed in first grade when he first had a major meltdown at school that he couldn't move on from, and then the raw, red, over-washed hands surfaced just days later. We sent him to CBT, and he did well until mid-year in second grade, when I think we saw the first "dramatic onset" event; in the course of about 3 weeks in February, he went from being pretty much "like any other kid" in his class to having dramatically regressed in almost all his skill sets, academic and social. He basically forgot how to read and fell more than a full grade level in terms of that skill. Again, we'd heard of PANDAS but thought that since he'd been diagnosed with the OCD over a full year prior, he didn't meet the "dramatic onset" criteria, so we didn't pursue it at that time.

 

As I think about it, the story has been more or less the same over the years, with setbacks and leveling off (waxes and wanes), none of which were ever tied to a strep infection because he is completely asymptomatic (that is, if you ignor all the neuro-psychiatric signals, which unfortunately, we all did for far too long! But it wasn't until this latest onslaught of OCD behaviors that were entirely "untameable" by the means we'd come to rely upon over the last 6 years that we circled back around to PANDAS.

 

Some people (me and his dad) are just late bloomers, I guess.

[dcmom]

vickie- I have actually wondered the opposite. Did the chronic kids have a sudden onset, but was it milder, and at a time when it could have been considered a "stage". I know lots of pandas stuff, esp if it was a bit milder, are things other kids go through at times: bathroom issues, picky eating, defiance, tantrums, clothing issues, school and/or focusing issues. Lots of well meaning people were telling me Julia was going through a "phase". Then maybe with misdiagnosis and time, things progress to an unmanageable point. Are these kids harder to treat because the strep has gone intracellular and will take longer to get rid of, and because the behavoir has been in place while the brain has been developing- so do they need a bit more therapy and time.

 

I have to look back and read the posts- I am not sure if I understand what is meant by "chronic"? Is it that the child has had this since they were very young? Or is it that they have not gotten back to baseline since pandas started, don't respond to treatment?

 

Julia had her first pandas episode last January- we are close to our one year anniversery. Although she has responded well to treatment- I do feel in a way she is chronic: out of the last 12 mos, about 7 of them were spent in pandas episodes. She is doing really well now- but she is not 100%- she still struggles with some low level issues. I hope that we can maintain the progress she has made- but at times I am very fearful of the future.

 

It is so hard- we have such a hard time getting the appropriate treatments, and then when they don't work......

[thereishope]

dcmom...I actually should have added "and vice versa". I do wonder if it could change both ways.

 

If the child starts as sudden onset then becomes chronic would that be result that the body is just always fighting something? I mean, is the immune system always fighting something?

 

I understood chronic as the symptoms seem to just always be there. They linger. One cannot really pin point when they started. They become one with the child.

[fuelforall]

Are these kids harder to treat because the strep has gone intracellular and will take longer to get rid of, and because the behavoir has been in place while the brain has been developing- so do they need a bit more therapy and time.

 

DC MOM- I highlighted this specifically because this is what I believe. Does anyone else? Buster?

[laurenjohnsonsmom]

Bummer...I HATE tics!

 

If I take the definition of Chronic to be Trifilleti's and Pavone's definition (i.e., gradual onset, carrier state, more tics than OCD), then I don't think my daughter would qualify. Her symptoms remitted with antibiotics -- but came back when antibiotics were discontinued. In addition, her exacerbations were linked to strep in the house. Once treated it remitted.

 

Looking at case histories, it seems like those with tics definitely take longer to remit.

 

Buster

 

Folks,

As the parent of a chronic PANDAS sufferer, vs a sudden onset sufferer, how much success have you all had with treatment? I don't know why I suspect the chronic sufferers are tougher nuts to crack.

 

Please weigh in with thoughts on this. Thanks in advance, Buster, if you respond to this.

 

Michael

 

Hey Michael --

 

I'm not sure, but I think we qualify as "chronic." Son diagnosed with OCD at 6, waxes and wanes (or exacerbations) throughout the last 6 years and only moved on to PANDAS about 4 months ago. We are about to begin our third month-long dose of abx, and we ARE seeing improvement . . . slow, saw-toothed, but improvement nonetheless. I think you're right though . . . I feel like these are "tougher nuts to crack," maybe because the duration of their illness (and early mis-diagnosis) has permitted the strep to go intracellular? Maybe because the brain has taken on some more permanent configurations or accommodations during the illness prior to abx intervention? Maybe because the associated behaviors have become more ingrained over the extended time period, so even once the physical issues are addressed, it takes longer to turn back the clock on the learned behaviors?

 

I'll be interested in hearing what Buster has to say, also!

[peglem]

Are these kids harder to treat because the strep has gone intracellular and will take longer to get rid of, and because the behavoir has been in place while the brain has been developing- so do they need a bit more therapy and time.

 

DC MOM- I highlighted this specifically because this is what I believe. Does anyone else? Buster?

Yes, this is what I think! And the intracellular strep is slowly and constantly released, keeping the antibodies present always, at least in small amounts. Then there is some tissue damage (strep containing cell destruction) from teething, dental work, or other stuff, and WHAM lots of strep gets released and we see a symptom exacerbation. When that's over we go back down to less symptoms, but not eradication altogether.

[smartyjones]

dcmom...I actually should have added "and vice versa". I do wonder if it could change both ways.

 

i do think that is a valid concept and probably two sides of the same coin.

 

My son had "sudden onset" at 4 years, 4 months with extreme separation anxiety resulting in extreme school refusal. It's a Montessori pre-school ages 18 mths - 6th grade. it's been around for 25 years. they had never encountered such a thing. this was coupled with obnoxious and other troubling behaviors. obviously, sending us for help.

 

however, 3 months prior, he had an isolated incident of extreme cognitive inflexiblity and separation anxiety. we were on vacation, at a wedding - so many ways to 'justify' it.

 

he'd had strep at 22 month, 2.5 years prior to 'sudden onset'. in the following 2 years, i usually termed him as "more tempermental than your average kid' and with a "defiant streak". not that we couldn't handle or was troublesome to stop or even change our daily life. when potty training at age 3, he developed extreme potty phobia -that was the main troublesome issue and obviously very odd. i now believe all of this to be pandas related, however, at the time, it was all within the realm of 'normal' 3 and 4-year old behavior.

 

i do agree with the 'tough nut to crack' theory - from the other side. even though i believe he's been affected by PANDAS for quite some time, we were relatively lucky in discovering it when things exploded and i believe he's responded well to treatments. i think he falls into dr. T's category 1 and did see immediate improvement with abx - although backslid when got off abx.

 

not sure this will be helpful but . . .we are following a different treatment path than most but if anyone is interested - and this is something i don't really understand - i believe it's an equivalent to "intercellular" but they term it a 'cell wall deficient' microbe (i think it's microbe, but i know it's cell wall deficient). point being that what is troublesome is not recognizable by the white blood cells so they cannot eliminate them from the body - they just hang out and continue to cause trouble.

[thereishope]

In reference to needing more therapy and time...

 

I still have this feeling that some problems, such as OCD, do become residual for some kids and the abs will not fully be the answer for that problem, but therapy is necessary. I realize PANDAS kids during a full blown exacerbation will probably not benefit fro CBT or maybe even ERP, but when you feel you have hit a road block and you are so close to recovery, therapy should be considered (in addition to continuing abs).

 

If CBT can retrain the brain to think the right way and MRI of the brain show that CBT alone can change the chemical balance, then why can't a healthy brain be retrained to do the wrong thing.? Like a bad, reversal CBT?

 

Maybe I think this because my son had residual OCD.

[dcmom]

Vickie- My dd definitely has some residual ocd issues. I plan on re starting therapy for her (hopefully with an ERP trained specialist). At this point I am just giving her some time to be a kid- she is VERY resistant to therapy, and HATES to discuss anything- so it may be something where I have to go to learn the tactics to use at home. Her main issues are: on/off minor urination issues such as avoidance and wiping compulsively, sensory issues or only wearing certain types of comfortable clothing, having to dry herself extremely well after a bath, food issues of being very particular in how stuff is arranged on her plate (forget serving her something). After what we have been through these are very minor- but of course moving forward and growing up, I would like her to be able to conquer these issues to live as anxiety free as possible.

[thereishope]

dcmom,

 

My son was very resistent to therapy. He couldn't do CBT because to him nothing was wrong. I ended up learning tactics on my own, charted improvement on a charts provided by the therapist, and reported back to her once a month until he was better. I was the therapist. It actually was me meeting alone with her every month for one on one.

 

So, if your daughter wouldn't cooperate with in-office stuff, it doesn't mean there's no hope. But when you decide to start, make sure you are ready too. It takes devotion from the parent for it to succeed. There were times when I put off tackling another OCD habit because I needed a break from the impending anxiety I knew would occur.

[smartyjones]

My son was very resistent to therapy. He couldn't do CBT because to him nothing was wrong.

 

 

vickie - so how did you deal with the fact that the goals were not his? how did you get him to participate when he had no desire, thought or motivation to change? i've been able to do some things with my son just by making them part of the routine but i do get hung up on the fact that the goals are really not his so he has no motivation to work toward them. the potty has really been our main issue as far as this is concerned. he now goes at home, not at school.

 

if he doesn't want to do it, no 'thing' or priviledge matters. i could go on and on about all the rewards that were left by the wayside when trying to potty train. nothing is as big as not doing it. i agree there has to be something but it's impossible for us to figure out. the only way i've been successful is by getting it into the routine. like now, we do a 'step' in the potty at school when i pick him up. i get worried that we're never getting to the end goal - he'll participate with the step but only so far.

 

thanks