PANDAS Based Tourettes

[Sunflower]

Hi,

 

If a child has PANDAS based tics/Tourettes could other children catch PANDAS of this child it if he accidently caugh, kissesed or spat on them? (e.g accidenlty exchanges fluid with them)

 

I don't quite understand if the child has PANDAS what prevents him/her from giving it to other children or family members if he is a carrier of strep bateria?

[emma1]

This is an interesting question. I have thought about this as well. I think that when one has strep, that person is contagious for up to three weeks, unless that person is treated with appropriate antibiotics. Once treated with antibiotics, the person is no longer contagious after 24 hours (some say 48 hours, but most say 24). If there is no antibiotic given, then the person remains contagious for a longer period. I read it would be about three weeks.

 

Now, that same person will still most likely have high strep titres. With high strep titres alone (that is, not an "active" infection, as delineated above), the child is not contagious, and would not be able to pass strep onto other.

 

PANDAS is the term for the autoimmune reaction that occurs to some in response to a strep infection. No one, as far as we know anyway, can catch PANDAS -- though there have been some instances where it seems that PANDAS runs in families. But doctors do not believe that it is because one child is "catching" PANDAS from another child.

 

So, bottom line, my take is: Strep is contagious when active: until 24 hours after the start of antibiotics or around 3 weeks if the infection goes untreated. After that, titres may remain high for months, even in a "typical" child, but that child is not contagious. PANDAS is an autoimmune reaction to the strep, and while certainly a problem for the child, is not contagious to others.

 

Does that sound right? I hope Kim looks at this -- she really digs into all the medical literature and is brilliant in explaining all of this!

[ad_ccl]

PANDAS is an auto immune disorder triggered by strep. Pretty much every child has strep at some point - and very few kids get PANDAS as a result. You have to be genetically predisposed - Running in families is the genetic factor - not one catching PANDAS from another.

[Chemar]

yes, well put Alison....strep is contagious, PANDAS is not. However, in families that already have one child with PANDAS dx, one should be aware that more than one child may have the genetic predisposition for PANDAS.

 

Also important to note that some people can be strep carriers without ever manifesting strep symptoms

[emma1]

That is what I meant to say! Thanks!

[michele]

On the topic of PANDAS since it is hard to diagnose anyone here have a hard time getting the neurologist to make a diagnosis for PANDAS? Ours is very old school and focuses alot on tic disorders. I can tell he is of the skeptical side on if PANDAS exisits. He said there is some kids that have reactions to illnesses and have immune problems which is sometimes accompanied by tics. My son seemed to always get weird symptoms with virals and strep. They no longer use the term PITANDS. If you notice in research articles it was from awhile ago. Maybe it was never proven but that is more what my son shows. However since kids are constantly exposed and sick , at five I wonder if that is why we are having such a hard fall. The neurologists said with true PANDAS the tics go away after treated from strep exposure. Ours have stayed for three months. He said that is more like tourettes because it starts slow and has short episodes of tics and then gradually the tics wax and wane into longer cycles. Is this what others have seen here? Can PANDAS develop into tourettes over time from repeat exposure to high titers and strep? Isn't it the same part of the brain that is affected in both disorders? He felt that Andrew being on long term antibiotics should be reviewed in a few months to see if he warrants using them. He didn"t prescribe them. I went to an ID Dr. and he tried them for us. I hope he doesn't have tourettes and I am treating him with longterm antibiotics. The neurologist said he respects Dr. Murphy's opinion and the ID Dr. too. He thinks there is few cases of true PANDAS. What are some opinions on this?

 

Michele

 

Hi,

 

If a child has PANDAS based tics/Tourettes could other children catch PANDAS of this child it if he accidently caugh, kissesed or spat on them? (e.g accidenlty exchanges fluid with them)

 

I don't quite understand if the child has PANDAS what prevents him/her from giving it to other children or family members if he is a carrier of strep bateria?

[emma1]

Michele, I am far from an expert, or even truly "knowledgable" about this, but here is how it is with us. My daughter has major, major improvements while on antibiotics. Off -- we go back to symptoms. Truly -- night and day changes. She has high strep titres.

 

So, I guess the question is -- if it is simply tics, or Tourette's (though she hasn't had tics a year yet) -- would antibiotics stop/slow symptoms? I am thinking the answer is "No" but guess I don't know for sure. Has anyone with Tourette's -- but not PANDAS -- had symptoms improve with antibiotics (perhaps while on them for other reasons)?

 

We have no familial history of Tourette's, and these tics started pretty quickly out of the blue. I remember Chemar (who seems to know everything!) saying that not all PANDAS children have Tourette's -- but you can have co-existing conditions.

 

I've been reading a lot about this -- there certainly is some controversy. I did read (somewhere) that PITANDS had been abandoned as a diagnosis, but I am not sure that is universally accepted, or just one doctor's opinion.

 

I have read too that, in some cases, after the antibiotics, the symptoms should go away. The article I read said something like 6 months. But, there are many here who seem to have different stories, where the symptoms last much longer.

[faith]

re antibiotics for non-PANDAS....

Well...my son is not PANDAS, however, I have mentioned before, that last Spring (2006) even after having tics for a couple of years, one weekend he started blinking and like looking up into his eyebrows and it was way more than I have ever seen. It was a double birthday party weekend and at one of them he was off the wall hyper, I had a hard time reigning him in. On the way home he said his throat hurt (it was Saturday), and Monday I took him to the doctor who said he had strep just by looking at his throat. Okay, so he gave us amoxycilin, and I was quite surprised that these symptoms waned substantially within two days. That always stood out in my mind (and I was aware of the PANDAS info from here already), so when I told the doctor about this, he seemed to have a little knowledge of this and sent us to an Infectious Disease doc who did the testing. But, his titers were normal..... So, since then I am always on the lookout and do keep on top of this issue, but right now we are not seeming to be in that boat.

 

Now, I just wanted to relay something else, since Emma was asking if anyone has taken antibiotics for some other reason and it had an effect on tics.... I think I mentioned recently also that when my son was eye twitching alot about a month ago, I took him in and again, no strep, but the doctor agreed to give us the antibiotic to see if it had any effect and I would let him know how it went. At first I was reluctant to do it (and we had some discussion here about it), so I waited a couple of weeks. But then I couldn't take it anymore and decided to give it to him. So I did, and I don't kinow, I cannot say it dramatically slowed down the tics, but weird as it is, his vocal does seem to be down quite a bit. I just hear a low throat clear now and again. But I still see the eye twitch and he does that mostly while watching tv, which I have drastically reduced, and feel it has had a beneficial effect. But the minute he watches tv, it starts again, so I don't want to do that too much, so as not to fill his bucket too much. Well, I gave the antibiotic about five or six days, and then decided to stop to see, but it still is about the same, not too bad, but not great. I had to try. I figured I still have about five days left in the bottle so if I see any exacerbation, I would give it again to see if it made any difference. Its really a detectives job... But long story short, right now, I can't say it helped dramatically, altho I'm wondering how the vocal is not so bad. I have also started digestive enzymes last two weeks, so maybe something there? BUMP to me on the head for doing two things at once, but you all know how it is.

 

Oh, well, don't know if that helps or confuses!

 

Faith

[bmom]

Faith and anyone else who can help, My son is having some blinking issues now too. It was only with TV although last couple of days a few times without tv. Do I just reduce (which I have done) tv and hope it will resolve, buy LCD tv, or get tested for Pyloria etc? What do you think, could it just pass?

[Sunflower]

I would try and work out if this is genetic based tic (tourettes) or PANDAS. Did you child have a infection and tic followed the infection? Or was it a gradual thing?

[faith]

bmom,

with this recent eye twitching, I saw it starting while on computer or watching tv, and then after about a month I saw more when not viewing screens. So I had him off for about a week or two and although not 100%, it is very much reduced from before. I really feel it had a beneficial effect, but not immediately. I kind of felt it was sort of an accumulation and he needed a rest from the screens. Now he is still doing it, but not as often as he was (that's why I was suspecting a strep connection, and subsequently did the antibiotic trial). My son has had blinking bouts in the past and they do subside and go away for a time. My suggestion is to keep him away from screens for as much as you can, and make sure he's getting enough magnesium. For some reason, I feel that helps with eye tics. Did your son ever have eye blinking before? I'm sure it will subside after a while.

 

Faith

[Sunflower]

I guess one assume that PANDAS is contageous to other children if they a predesposed to a movement disorder e.g maybe tourettes runs in their family grampa had it or had some other movement disorder and are in contact with the infect strep child?

 

If the child catches the strep they their body could react to it like PANDAS? because they are predesposed. But for families with no movement disorder history I am not sure why a child would develop PANDAS...?

 

 

Does anyone have a child with PANDAS with no family history of movement disorder?

 

Any thoughs would be great as many doctors don't even know what PANDAS is!!

 

Hi,

 

If a child has PANDAS based tics/Tourettes could other children catch PANDAS of this child it if he accidently caugh, kissesed or spat on them? (e.g accidenlty exchanges fluid with them)

 

I don't quite understand if the child has PANDAS what prevents him/her from giving it to other children or family members if he is a carrier of strep bateria?

[Chemar]

Sunflower

 

there does NOT have to be any history of "movement disorders" to develop PANDAS from strep

 

many kids with PANDAS do NOT tic...they have OCD and other symptoms, so strep induced tics are but ONE symptom of PANDAS .....BUT not the defining one

[emma1]

My daughter is suspected of a PANDAS-like disorder, and we have no TS or tics in the family history, but we do have a history of autoimmune issues on both sides of the family.

[michele]

We have autoimmune illnesses in my family and I guess movement disorder and depression on my husbands though they have never talked of it to me. You would think all they see me going through with their grandson they would come forward and talk about it but never! Only through my husband did I just hear of this. It must hurt their pride. They put on a real show to everyone. One time when I tried to discuss Andrew's PANDAS episode with them they left the restaurant in a huff saying I never tell them anything and even left me their bill including lobster. Also might I mention it was my birthday and they made quite a loud scene. It was devastating and my family was even present. Have other people's family had a hard time accepting or admitting their is anything wrong with the child?

 

Michele

 

Michele

My daughter is suspected of a PANDAS-like disorder, and we have no TS or tics in the family history, but we do have a history of autoimmune issues on both sides of the family.