PANDAS or TS I'm totally confused now!

[tantrums]

I haven't posted much in the past several months, so I'll summarize again. DS will be 7 in June. This past fall, he started with some major behavior issues, tics (both motor and verbal), failing in school (mainly reading and writing while his math skills excelled), complaints of body aches, etc... After a rage attack in which he came after me phsychially, I finally decided this was off the hook and brought him to the doctor. Wonderful ped and wonderful immunologist later and we were diagnosed with PANDAS and given antibiotics for 6 weeks. He improved greatly! Tics all but vanished and he was much more stable and doing well in school.

 

We were referred to a neurologist and other doctors wanted him to determine use of long term ABX. Well, he was, I thought at the time, pretty useless. Said DS has tourettes, which can be aggravated by strep. Just treat any strep infections as they come and do nothing for TS. At this time, DS was already starting to crash again. After an incident at school where he threw a book at the teacher, the ped agreed to a 6-9 month ABX course herself. He is more "stable" but just "okay" I would say. Main symptoms now are major mood liability, inability to focus, sleep disturbance and very minor ongoing tics.

 

In all of my reading that I've done now for months. I am starting to wonder if the neuro was actually right? How do you know if a child has TS vs. PANDAS? I mean, he DID have pos strep cultures (still waiting on the ASO results). But he just hasn't responded to the ABX as well this time as the first. And in looking back, I had realized intitially that he had minor transient tics since 2 years old, but I'm only connecting now how MANY he had! He really did have a lot I just didn't connect them as tics.

 

Ped said another neuro probably wouldn't be much good to me. I don't feel he needs psych meds at this point. I have the ABX so I feel I'm covered there for now. We are on the wait list for a developmental ped, but it's a year wait! Meanwhile, I have an unhappy child, a stressed out me and feel like I should be doing more!! Should I try a rheumatologist? Or someone else? A DAN doctor?

[Fixit]

I haven't posted much in the past several months, so I'll summarize again. DS will be 7 in June. This past fall, he started with some major behavior issues, tics (both motor and verbal), failing in school (mainly reading and writing while his math skills excelled), complaints of body aches, etc... After a rage attack in which he came after me phsychially, I finally decided this was off the hook and brought him to the doctor. Wonderful ped and wonderful immunologist later and we were diagnosed with PANDAS and given antibiotics for 6 weeks. He improved greatly! Tics all but vanished and he was much more stable and doing well in school.

 

We were referred to a neurologist and other doctors wanted him to determine use of long term ABX. Well, he was, I thought at the time, pretty useless. Said DS has tourettes, which can be aggravated by strep. Just treat any strep infections as they come and do nothing for TS. At this time, DS was already starting to crash again. After an incident at school where he threw a book at the teacher, the ped agreed to a 6-9 month ABX course herself. He is more "stable" but just "okay" I would say. Main symptoms now are major mood liability, inability to focus, sleep disturbance and very minor ongoing tics.

 

In all of my reading that I've done now for months. I am starting to wonder if the neuro was actually right? How do you know if a child has TS vs. PANDAS? I mean, he DID have pos strep cultures (still waiting on the ASO results). But he just hasn't responded to the ABX as well this time as the first. And in looking back, I had realized intitially that he had minor transient tics since 2 years old, but I'm only connecting now how MANY he had! He really did have a lot I just didn't connect them as tics.

 

Ped said another neuro probably wouldn't be much good to me. I don't feel he needs psych meds at this point. I have the ABX so I feel I'm covered there for now. We are on the wait list for a developmental ped, but it's a year wait! Meanwhile, I have an unhappy child, a stressed out me and feel like I should be doing more!! Should I try a rheumatologist? Or someone else? A DAN doctor?

 

Autoimmune....and then hit bad immune system with something else and things are worse...JMHO

I don't know where you live but i would suggest go see Scott SMith in Melbourne FL....

http://www.creationsown.com/index.html

Edited May 17, 2010 by Fixit

[dcmom]

Tantrums-

 

I think you should try more.

 

My kids are clearcut pandas. TOTAL overnight onset, both OCD- not tics- totally helped by pandas treatments.

 

But I have to say this for everyone FOR SOME PANDAS KIDS, ANTIBIOTICS ARE NOT ENOUGH.

 

For both of my girls, their first episode remitted with antibiotics. But, since then the antibiotics do not cut it. We moved to steroids- they help tremendously- but we ended up with pex because we couldn't maintain the improvement.

 

If antibiotics dont work, it does not mean it isn't pandas. Also- ibuprofin has never really had a noticeable effect on them either.

 

I would suggest you consider doing the Cunningham test- as part of your clinical picture- and then seeking the advice of a REALLY good, pandas knowledgeable doc (Dr L or Dr K)

[T_Mom]

I am sorry it sounds like a tough time right now--I can share that our d's OCD and face stretching tics improved significantly with steroids (the Dr K "testing" technique for PANDAS) and then long term antibiotics. I have read that if a child has tourettes that steroids may not be the route to go-- I would see one of the doctors who have been treating Pandas on this one certainly.

 

In our case a month of long term antibiotics made such a difference that we continued--still on it.

Saving Sammy is an obvious example of the possible effects of long term antibiotics on Pandas, that book was an encouragement.

 

(--just read DCMom's response--and would certainly agree that for some Pandas kids antibiotics may be worth a try as a first-rung treatment.)

Edited May 17, 2010 by T.Mom

[MomWithOCDSon]

How do you know if a child has TS vs. PANDAS? I mean, he DID have pos strep cultures (still waiting on the ASO results). But he just hasn't responded to the ABX as well this time as the first. And in looking back, I had realized intitially that he had minor transient tics since 2 years old, but I'm only connecting now how MANY he had! He really did have a lot I just didn't connect them as tics.

Boy, that's the million dollar question, isn't it? I keep coming around to the same question for my DS on the OCD side of the spectrum; how do you know if a child has OCD vs. PANDAS?

 

And, like your son, my DS had an almost miraculous response to abx the first 3 months or so, but that impact seems to have waned substantively. I keep reminding myself . . . by keeping a journal, noting his snail-paced progress, watching his handwriting and homework, etc. . . . that he IS still improving over where he was about a year ago this time, but it is now a crawl instead of a jog. So you start to wonder . . . IS it PANDAS, or is this just the way it is, for a lifetime . . . a psych diagnosis (in our case, OCD, in yours, TS).

 

But, I gotta tell you, the more I read and the more I hear, I'm just not sure that there's anything legitmately "regular" about either TS or OCD. I'm not convinced that most of these "behaviorally-classified mental conditions" are not entirely responses to inflammation which triggers or exacerbates a genetic predisposition. And for what it's worth, I ran that past Dr. K. when we saw him a couple of weeks ago, and he agreed that there is almost certainly something genetic in the genesis of PANDAS, and that inflammation may be at the root of so many behavioral manifestations, but there's a lot we still don't know.

 

Also, for what it's worth, we disclosed to him that DS has been on abx (Augmentin XR, almost exclusively) for the last several months and showed him some dramatic handwriting samples of "before abx" and "after abx." We also noted for him, however, that their dramatic assistance to DS seems to be on the wane. It is his opinion that the effectiveness of abx will eventually wane for almost all PANDAS because the abx alone cannot keep up with the pace of the underlying auto-immune condition; that DS will eventually become overwhelmed by the auto-antibodies despite the abx unless the immune system is entirely "rebooted."

 

Personally, our jury is out on that for the moment, but we continue to watch and listen and learn and consider the long-term . . .

[tantrums]

I live in Eastern PA. I was just on Dr. T's site again... I've written his number down countless times. I don't know - I've just read stuff that holds me back there. But I'm getting desperate for an answer here. A clear diagnosis would be a GREAT start! Whichever it is would be a wonderful thing at this point.

 

He does also have OCD symptoms. Obsessive thoughs - mainly of death, dying and poison.

 

The fear that TS treatment could make PANDAS worse and PANDAS treatment could make TS worse terrifies me!!!

 

His progression was very quick, but not totally overnight. His only issues prior were the transient tics. But he had just started first grade in a new school, so I attributed it mostly to that adjustment and it wasn't until the first full blown rage attack that I realized something was very wrong.

 

He was tested for Lyme and that was negative.

 

I'm not comfortable with sitting and waiting much longer. Maybe another ABX should be tried - he is on amoxi at the moment. I know people say augementen is really good, but he had a rough time with that once when he was younger so that makes me nervous.

[Fixit]

Tantrums-

 

 

But I have to say this for everyone FOR SOME PANDAS KIDS, ANTIBIOTICS ARE NOT ENOUGH.

 

For both of my girls, their first episode remitted with antibiotics. But, since then the antibiotics do not cut it. We moved to steroids- they help tremendously- but we ended up with pex because we couldn't maintain the improvement.

 

If antibiotics dont work, it does not mean it isn't pandas. Also- ibuprofin has never really had a noticeable effect on them either.

 

I would suggest you consider doing the Cunningham test- as part of your clinical picture- and then seeking the advice of a REALLY good, pandas knowledgeable doc (Dr L or Dr K)

 

 

well said........

.just because somethng triggered it before doesn't meean that's what's going on now....

.ds ALWAYS remitted completely with abx...then 4 months later new onset with new step......last couple of times completer remit with abx...coulnd't find strep..but gone in 4 weeks...4-5 months later new illness , repeat.....this last time....well i think with puberty and so many streps and illnesses and we went to docs day before this onset as he said he didn't feel good(so ironic)......his body just cant stop fighting..(fighting self)

my ds is dx with ts.....but no one listeing to me....and as things got bad i got a perscription for cholindine...and was going to call for somthing more substantial...but my HEART/GUt just wont' let me do it....besides so many bad reposrts on meds(because they are treating symmptons not cause) i just have too many indicatins that the neurot are wrong!!!!! and though my hubby has a head nod and blink..(vairifing neruos take) they don't consider that he may also have aautimmune iissure...(to repeat dh mohter has thyroid/lupus, his borhter has really bad psorisis, his other brother really bad allergies) blah, blah.....

[Fixit]

But, I gotta tell you, the more I read and the more I hear, I'm just not sure that there's anything legitmately "regular" about either TS or OCD. I'm not convinced that most of these "behaviorally-classified mental conditions" are not entirely responses to inflammation which triggers or exacerbates a genetic predisposition. And for what it's worth, I ran that past Dr. K. when we saw him a couple of weeks ago, and he agreed that there is almost certainly something genetic in the genesis of PANDAS, and that inflammation may be at the root of so many behavioral manifestations, but there's a lot we still don't know.

 

Also, for what it's worth, we disclosed to him that DS has been on abx (Augmentin XR, almost exclusively) for the last several months and showed him some dramatic handwriting samples of "before abx" and "after abx." We also noted for him, however, that their dramatic assistance to DS seems to be on the wane. It is his opinion that the effectiveness of abx will eventually wane for almost all PANDAS because the abx alone cannot keep up with the pace of the underlying auto-immune condition; that DS will eventually become overwhelmed by the auto-antibodies despite the abx unless the immune system is entirely "rebooted."

 

Personally, our jury is out on that for the moment, but we continue to watch and listen and learn and consider the long-term . . . :huh

 

 

 

 

YES, YES, YES!!!! Gosh i wish i could write some of this stuff...but they are the originators and have a better grasp of it.......

Edited May 17, 2010 by Fixit

[Debbie1]

You may want to consider Dr. B. as an option. He is in Connecticut. Let me know if you need contact info.

[tantrums]

Who is Dr. B? I can do CT in a day, so that is a possible option. Just give me the name and I can look him/her up. Thanks!

 

Oh I also meant to add, I have wanted to try the ibupfrophen, but it is the weirdest thing... when I can tell he needs it, DS will NOT take it. He normally likes taken medicine but I get the evil eye and he has thrown it across the room if I try to slip him some ibu

[Debbie1]

Dr. Bouboulis is an immunologist in CT who has several PANDAS patients. We have found him to be extremely compassionate. Here is his contact info:

 

Dr. Denis Bouboulis

 

Stamford Office: 203-323-7744 (Monday, Wednesday)

Darien Office: 203-655-9904 (Tuesday, Thursday)

Edited May 17, 2010 by Debbie1

[Chemar]

Hi

 

good that the doc was willing to give you the rx for a longer period of antibiotics

 

I dont think that TS and PANDAS are necessarily mutually exclusive ie I dont think it has to be either or in some cases but maybe a combination of the two

 

from someone whose child does have "genetic TS" (long family history of it spanning many generations) I can tell you that the neuroleptic meds that are conventionally rxd for TS only made things worse for my son. They also had him on SSRIs for the OCD...again just a heap of nasty side effects

 

 

so at this time, where you know you are dealing with PANDAS, treat that with what is known to help IMHO and dont complicate the healing by adding those TS meds with their potential for ick side effects, especially as you have no firm evidence that there is separate TS as opposed to TS like symptoms from the PANDAS

 

there are numerous ways to help the TS side of things more naturally, and many of them can also be good complimentary treatments for a PANDAS child too, even if no TS, as where TS is known to be in some way resultant of a dopaminergic system malfunction, the immune/inflammatory connection seems very evident, so areas of overlap

 

I have what helped my son documented in my signature link and there is a ton of info on the TS/tics board here that may be helpful for you

http://www.latitudes.org/forums/index.php?showforum=1

Edited May 17, 2010 by Chemar

[smartyjones]

But, I gotta tell you, the more I read and the more I hear, I'm just not sure that there's anything legitmately "regular" about either TS or OCD. I'm not convinced that most of these "behaviorally-classified mental conditions" are not entirely responses to inflammation which triggers or exacerbates a genetic predisposition. and that inflammation may be at the root of so many behavioral manifestations,

 

 

i so agree with momOCD.

 

tantrums - can't give you any insights into your question, just to tell our situation. my son's presentation was/is on the surface, totally behavioral. we were lucky that a behavioral therapist suggested pandas. he had high titers and + culture. with abx, he initally improved 100% but backslide when off and then not back to 100%. through further investigation, he's been diagnosed with lyme, toxoplasma gondii, and cytomegalovirus.

 

the help we sought in the beginning just wanted to write him off as becoming challenging and put him on meds as a first step, write me off as mom who didn't want to see her child as troublesome or with a problem.

 

it is still baffling and amazing to me, that we could have tried to treat him behaviorally for years. . . years! now i know his body has been contending with 2 serious bacterial infections, a parasitic infection and a viral problem. he's healthier and bigger now but at the time he was only about 35 lbs -- a 4 yo, 35 lb body with all that. how could he possibly have been acting 'normally'?!

 

granted, some conditions are just what they are. . . from all i've learned, i think it's imperative to check out what infections/conditions may be affecting the body physically first.

[CSP]

Do all the PANDAS children on this forum have rages, tantrums, ect....?

 

My son DX tourettes has alwas been a very good boy. He has had major ticcing, but nothing else in the behavior dept. like some of what I have read here.

 

Could this be a clue? True TS is just ticcing, and true PANDAS is something more effecting the brain and body?

 

Any PANDAS parents have clear PANDAS children without the rages, ect... just OCD and tics?

 

CP

[Phasmid]

Nope. Our PANDAS boy was a rage machine, but it didn't last that long. It was a very early sign, and I think only lasted a couple weeks. Back then we all thought TS, but the mood/behavior thing was very suspicous.