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Swab Results Back: NOT Strep (Waaaa/CRY)


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Hi everyone....

 

First off - I feel like such a "taker" on here right now....constantly coming here for help but not having much if anything to offer. I'm not always like that hopefully I'll get around to having some pearls of wisdom of my own to offer some day - but right now, I just need to accept help!

 

We had realllllly bet the farm that Jackson's sinus infection was going to come back Strep. Really, I would have bet money on it. And it would have made sense with the PANDAS. But I got the call today that it was Staph. And I was literally stunned. I had to consciously make the choice to not think about it at all or I think I would have slipped into despair.

 

I am having to try and be soooo careful to not fall into a weird thinking that I WANT this to be PANDAS - but part of me does. It would fit. Make sense. Be a reason. Now I know that doesn't mean it's easy - I know it's not. But somehow KNOWING would help and I just want there to be a REASON for all this odd behavioir. I'm sure that is not coming off exactly how I mean it and hope I'm not offending...

 

Now, I know that someone (or someones) on here has indicated that there are new thoughts on this that it isn't JUST Strep that exacerbates the symptoms. And off the bat - I tend to think that makes TOTAL sense. But again, I want to make sure it doesn't make sense because I WANT it to. Is there any literature that anyone can point me to that indicates that this is a new "hypothesis"? It's hard enough dealing with Dr.'s that either don't believe and/or think it's over diagnosed...now to have to share with them that it's NOT "just" strep - when all the literature points in that direction? I'm exhausted just thinking about it....Somebody PLEASE help.

 

And while I'm on thsi subject....as I read some of the other posts and see what others with FAR more extreme cases then ours are going through - my mind also wants to play a trick on me that that must mean MY child can't have it. BEcause I GUESS if I could "label" his degree of PANDAS (if indeed it is PANDAS)...I would have to classify it as moderate (from mild, moderate, severe). And at the low/medium end of the "moderate". So how do I process that thought?

 

Thanks in advance....GH

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There is likely a more recent document than Swedo's original 50+ from 1998, but here is a start: http://intramural.nimh.nih.gov/pdn/pubs/pub-3.pdf

 

Two clinical notes should be made. First, not all

symptom exacerbations were preceded by GABHS infections;

viral infections or other illnesses could also

trigger symptom exacerbations. This is in keeping with

the known models of immune responsivity—primary

responses are specific (e.g., directed against a particular

epitope on the GABHS), while secondary responses

are more generalized. Thus, the lack of evidence for a

preceding strep infection in a particular episode does

not preclude the diagnosis of PANDAS.

 

She does want (for this study) a strep connection, but not in every exacerbation. No clinician worth his salt on PANDAS now requires that, as if you missed testing the kid for the first exacerbation, you can no longer prove it either way. That's why it is no a clinical diagnosis - extreme exacerbations that respond to abx help the diagnosis. So does a Prednisone test. So does the Cunningham test, etc. Most of us keep really good graphs showing symptoms over time, along with illnesses or exposure & then times on abx. It often is very obvious this way.

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Hi everyone....

 

First off - I feel like such a "taker" on here right now....constantly coming here for help but not having much if anything to offer. I'm not always like that hopefully I'll get around to having some pearls of wisdom of my own to offer some day - but right now, I just need to accept help!

 

We had realllllly bet the farm that Jackson's sinus infection was going to come back Strep. Really, I would have bet money on it. And it would have made sense with the PANDAS. But I got the call today that it was Staph. And I was literally stunned. I had to consciously make the choice to not think about it at all or I think I would have slipped into despair.

 

I am having to try and be soooo careful to not fall into a weird thinking that I WANT this to be PANDAS - but part of me does. It would fit. Make sense. Be a reason. Now I know that doesn't mean it's easy - I know it's not. But somehow KNOWING would help and I just want there to be a REASON for all this odd behavioir. I'm sure that is not coming off exactly how I mean it and hope I'm not offending...

 

Now, I know that someone (or someones) on here has indicated that there are new thoughts on this that it isn't JUST Strep that exacerbates the symptoms. And off the bat - I tend to think that makes TOTAL sense. But again, I want to make sure it doesn't make sense because I WANT it to. Is there any literature that anyone can point me to that indicates that this is a new "hypothesis"? It's hard enough dealing with Dr.'s that either don't believe and/or think it's over diagnosed...now to have to share with them that it's NOT "just" strep - when all the literature points in that direction? I'm exhausted just thinking about it....Somebody PLEASE help.

 

And while I'm on thsi subject....as I read some of the other posts and see what others with FAR more extreme cases then ours are going through - my mind also wants to play a trick on me that that must mean MY child can't have it. BEcause I GUESS if I could "label" his degree of PANDAS (if indeed it is PANDAS)...I would have to classify it as moderate (from mild, moderate, severe). And at the low/medium end of the "moderate". So how do I process that thought?

 

Thanks in advance....GH

 

Hello - I don't know if your son has PITANDS, but I know mine does and mine gets exacerbations with sinus infections. We have never found strep in his sinuses (but we have not looked all that closely). We did find fungus with one sinus surgery and staph with another other sinus surgery. Here is some original info. on PITANDS from 1995 (before the term PANDAS was coined).

 

http://www.jaacap.com/article/S0890-8567(09)63789-8/abstract

 

 

Case Study: A New Infection-Triggered, Autoimmune Subtype of Pediatric OCD and Tourette's Syndrome

 

Albert J. Allen, M.D., PH.D., Henrietta L. Leonard, M.D., Susan E. Swedo, M.D.

 

 

Accepted 9 December 1994.

 

ABSTRACT

A review of clinical observations and literature reports leads to the hypothesis that, via a process analogous to Sydenham's chorea, infections with group A β-hemolytic streptococci, among others, may trigger autoimmune responses that cause or exacerbate some cases of childhood-onset obsessive-compulsive disorder (OCD) or tic disorders (including Tourette's syndrome). If this hypothesis is correct, then immunological treatments should lead to decreased symptoms in some cases. Four cases with abrupt, severe onset or worsening of OCD or tics are presented from an open treatment study. All were boys aged 10 to 14 years. One had OCD, one had Tourette's syndrome, and two had both OCD and Tourette's syndrome. Clinically and on standardized rating scales, their symptoms were in the moderate to very severe range. Two had evidence of recent group A β-hemolytic streptococci infections, and the others had histories of recent viral illnesses. Two were treated with plasmapheresis, one with intravenous immunoglobulin, and one with immunosup-pressive doses of prednisone. All had a clinically significant response immediately after treatment. Diagnostic criteria are provided that describe these cases of pediatric, infection-triggered, autoimmune neuropsychiatric disorders (PITANDs). Suggestions are made regarding the evaluation and management of patients who may have this condition

Edited by kimballot
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Don't rule PANDAS out just because strep test was neg. Looking back, our oldest son started PANDAS symptoms after mono and got worse after strep throat. Our other son showed PANDAS symptoms when he also tested positive for mono, but that was about 5 years after his brother had mono. So, when it happened to our second son, we had a better idea of what to do. We put him on antibiotics right away and the tics stopped after about 3 days. Now, we are about 9 months from mono in second son and we are symptom free with no antibiotics. For our family, I guess we are on the PITAND side and mono seems to be our trigger. If you have the symptoms and antibiotics bring relief, I would follow the PANDAS/PITAND protocal - just my opinion. Also, seems any event that "turns on" the immune system results in increased symptoms - so don't think strep is the only trigger.

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If a previous PANDAS exacerbation occurred in past (even if undetected by you because it was minor or dismissed as a result of age), he could be having a subsequent exacerbation right now with a different infection...which can happen with PANDAS.

 

However, I think there's at least 2 people who have said staph was the infection that they believe caused their child's first exacerbation. One is not on latitudes. I think the other is NancyD. If you read this, Nancy, tell me if I'm remebering right.

Edited by Vickie
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Listen, DS2 is at his worst (pandas-wise) when he has staph...so I would still say it is pandas (well, technically pitand, but I think everyone refers to everything as pandas these days). Things will get easier when they lump all of this into one diagnosis (when they change the name and take "strep" out of the name).

 

Does anyone in the house have impetigo? Just curious b/c once when DS2's impetigo was flaring, DS5 got a positive throat culture for staph (and yes they both were an OCD nightmare at that time). Also, I ended up with staph on my finger where I had a hangnail (and I got very sick during all this, like the flu). This is very contagious stuff.

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Here's another Staph story. Daughter had been feeling good (no previous problems that we knew of) went away to a summer program 4 days after being there was a mess. Called to come home couldn't stay, GI symptoms etc. This was well before we knew about Pandas. Once we learned what had been happening all these years, looking back she told me the girl she had been hanging out with for the past 4 days was recovering from a staph infection. Daughter seemed to rebound after that the whole summer was good and was then exposed that winter to strep that caused us the most problems.

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Don't rule PANDAS out just because strep test was neg. Looking back, our oldest son started PANDAS symptoms after mono and got worse after strep throat. Our other son showed PANDAS symptoms when he also tested positive for mono, but that was about 5 years after his brother had mono. So, when it happened to our second son, we had a better idea of what to do. We put him on antibiotics right away and the tics stopped after about 3 days. Now, we are about 9 months from mono in second son and we are symptom free with no antibiotics. For our family, I guess we are on the PITAND side and mono seems to be our trigger. If you have the symptoms and antibiotics bring relief, I would follow the PANDAS/PITAND protocal - just my opinion. Also, seems any event that "turns on" the immune system results in increased symptoms - so don't think strep is the only trigger.

 

I'm starting to wonder if my dd is PANDAS or PITAND.. I really don't know anything about PITAND and have only been learing about PANDAS for the last 5 months when my doctor told me that is what she had..

BUT I can pinpoint her symptoms and the change in her starting when she had Mono back in Jan 2009. She has been having touble ever since.. sometimes only mild symmptoms other time much bigger ones... adding all the little ones together and there the biggest thing that had me take her in was sensory issues and just basicly acting crazy when I would make her put cloths on, she would scream and yell that they hurt her crying and crying and trying to rip them off.. on good days she would just complain they didn't feel right, on middle ground days she would wear her 14 year old sisters cloths(she was only in a girls size 6 wearing teenage cloths) on bad days even my cloths and my husband cloths would hurt her and she would sit naked and then cry when she would have to sit back on the couch or lay in bed because just the stuff touching her would hurt her.. ALL this started when she had mono and I didn't think anything of it for a good long time because I thought it was a side affect from being sick with mono you know if your not feeling well you don't want things touching you.. but when it didn't get better I thought about taking her in, then it seemed like it would lessen so I thought OK she is getting better, must have just been the Mono, then it would get worse again.. and I would call the doctor, then it would seem to start getting better then would get bad again.. This past spring I couldn't deal with the daily fighting over her putting on cloths anymore and her crying her eyes out jumping up and down rolling on the floor and screaming that the cloths were hurting her.. and I just didn't call the doctor I took her in and let him see her.. see how she was acting..

He told me he thought she was OCD, and had anixity and had a conversion disorder where she was taking her fears and anixity and converting it into a physical symptom. and that she needed to see a psychiatrist right away..

ONLY there was waiting list and you had to go though councellor to see one, So while we were waiting to get into someone for that.. She started acting extreamly bad, the only way I can really discripe it is that she was acting totally crazy and out of her mind with the pain she was in from sensory issues.(found out now she really was feeling that pain, my poor poor baby) For 2 days she didn't sleep and couldn't really funtion and couldn 't go to school because she couldn't stop crying she pretty much sat in my bedroom with the door shut in the middle of my bed crying and watching cartoons.. it was the only way to distract her from the pain, she would watch for 15 mins then cry for a few more hours then watch then cry.. on the 3rd days she started running a high fever and I got her back in with the doctor.. ONLY I had to get her to put cloths on and that started the biggest melt down I have ever seen in my 37 years... She was screaming at the top of her lung, that it was killing her and she did this for 2 full hour even at the doctors office.. at the she was running around the room jumping on the chairs in the waiting room screaming "GET IT OFF OF ME"..."IT'S KILLING ME"... She was ripping at her shirt trying to rip it off her body..

It took 4 adults holding this little 45 pound 8 year old girl down, and one prying open her mouth to get the strep test done.. Sure enough it came back Pos. we didn't see our normal doctor for this strep test either, he was not in the office that day so we saw his NP. I looked at her and told her, this is the sort of stuff I have been trying to explain to her doctor but he has never seen it 1st hand.(though at that time I had never seen her so bad) The NP after we left called the doctor explained it to him and told him she did test pos for the strep..

He spent the next 24 hours looking at her charts and doing going though his medical papers. The next day he called me up and talked to me on the phone over and hour.. 1st thing he said was I have good news and bad news.. Good news is I don't think she has a conversion disorder, but I"m 99.9% sure what she has is PANDAS. He asked me how has she been since starting the a/b(she had been on it 24 hours at this point) and she was like a whole new child.. like she was before getting the mono like a year and a half befor.. she was still having her cloths bugging her, but she wasn't crazy in pain and freaking out anymore.. After two weeks on it alot of other stuff that I just thought was nothing like her fear of the dark and not letting me out of her sight at night was gone, after a month on it she was 99.9% back to her old normal self.. Happy again, back to going to her friends houses for sleep over, there was no more fear of just totally off the wall things(which also started happening with all this) and all the sensory stuff was gone... over this summer she only had a handfull of symptom days and the funny thing was they were always triggered when one of my other kids got sick.. like she had symptoms for about 3 days before my oldest got sick and ran a fever.. We tested my oldest for strep throat at that time but it came back neg, what she had was a sinus infection.. They didn't do anytest to see what kind of sinus infection... I didn't even know there were Kinds of sinus infection.. Am I reading this right can a sinus infection be Strep????

OH back to my MONO thing.. I asked my doctor if it was the Mono that brought this on, he said NO it's only strep(but he is also the 1st to admit he doesn't know alot about strep and dd is the 1st case he has seen of it and he would never have believed in it if he didn't see her) He also said that she had a strep infection at the same time as the mono, which I do remember now that he told me.. but I didnt' think a thing of the strep at the time because she has always gotten strep alot.. and MONO was something totally new and seem to make her the sickest I have ever seen anyone.

 

So I guess I'm wondering now about the connection with Mono and PANDAS??? and if Mono can trigger PANDAS symptom??? I mean how does that work.. I know once you have mono you carry the EBV with you for the rest of your life correct?? So if the EBV triggers symptoms what does that mean for PANDAS children.

 

The reason I wonder about PITAND vs PANDAS.. is because of her MONO and also how She seems to get symptoms when those around her are sick, even when they are not sick with strep.

 

really I don't know what I"m asking LOL.. I'm just trying to figure it all out.

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Has she had any immune function testing? Sounds like her immune system kinda got thrown for a loop there- or maybe was already in trouble and that's why she caught everything at once? When she had strep at the same time as mono, did she get abx for the strep?

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My son age 8 has severe PANDAS. At the time of his most severe symptoms,he did not have a throat swab. All tests were normal except for a complete sinus opacification seen on the MRI. In retrospect, his doctor believes that this was strep. He has never tested positive for strep with a throat culture in his entire life. His doctor believes that he gets all of his strep in his sinuses. My younger son is 6 and has had strep 10 times. What are the chances that a child could have strep throat (Group A strep about 5 times) and not transfer it to his older brother? I would say impossible. Strep is sneaky. It can hide in the sinuses and in the anus. During his peak symptoms and before the diagnosis of PANDAS,my older son would constantly be scratching his anus. When I asked his doctor if we should remove his tonsils she said, "Why bother? He doesn't get strep there."

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Has she had any immune function testing? Sounds like her immune system kinda got thrown for a loop there- or maybe was already in trouble and that's why she caught everything at once? When she had strep at the same time as mono, did she get abx for the strep?

 

No she has not had any umune function testing.. but yes she was treated for the normal 10 days of abx when she had the strep with the mono.

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My son age 8 has severe PANDAS. At the time of his most severe symptoms,he did not have a throat swab. All tests were normal except for a complete sinus opacification seen on the MRI. In retrospect, his doctor believes that this was strep. He has never tested positive for strep with a throat culture in his entire life. His doctor believes that he gets all of his strep in his sinuses. My younger son is 6 and has had strep 10 times. What are the chances that a child could have strep throat (Group A strep about 5 times) and not transfer it to his older brother? I would say impossible. Strep is sneaky. It can hide in the sinuses and in the anus. During his peak symptoms and before the diagnosis of PANDAS,my older son would constantly be scratching his anus. When I asked his doctor if we should remove his tonsils she said, "Why bother? He doesn't get strep there."

 

My older son who is now 10 broke out in a bumpy nasty rash all over his bottom when he was about 6 years old.. I couldn't figure out for the life of me what in the world it was.. took him to the doctor and it ended up being anal strep.

My kids have always seem to get strep rather easily.. my oldest 14 has only had it about 3 times in her life, but my middle two(my 10 year old ds and my 8year old PANDAS dd) has had it more then I evern remember atleast once a year and often more then that. The baby of my kids who is my ds who is now 5. I don't recall him ever getting strep or ever having to be tested for it. wonder if I should have him tested when the others end up with it just to make sure he isn't a carrier?

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I guess my understanding of it all is that PANDAS actually IS a subset of PITAND - one of the several infections that can lead to a neuro psych disorder...

 

Have you tried the Cunningham test. Isn't that really the closes thing there is to a PANDAS/PITAND test? Or does it just imply PANDAS?

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