PANDAS

[Darla]

Im am new here, i've been back and fourth on what my eight year old son has. Hes had tics come and go for a couple of years seems to also have Oppositional Defiant Disorder and OCD. I'm not sure if it's Pandas. No testing as of yet. We have a dr. appointment schedualed as well as a neurological apt coming up. He just got a prescription for some antibiotics. The strep test in the dctrs office came back negative but he has a fever and what seems to be a sinus infection. Also, he was a raging lunatic tonight. Agressive, swearing, crying, almost showing signs of a panic attack. He has nevered sweared like this before. He was just plain angry. I have only given him one dose of antibiotics. Is this Pandas? What is my next step? Are there cures for this? IVIG treatment? Or I've read something about prescribing antibiotics over a period of weeks or months. What does that do?

[greeneyes48072]

I'm new as well. I see you didn't have any responses yet. I found a lot of info on the web. Here are some of the sites I found best:

 

http://www.adhd.com.au/PANDAS.htm

http://webpediatrics.com/pandas.html

http://webpediatrics.com/pandasclinicalcases.html

http://intramural.nimh.nih.gov/pdn/web.htm

 

 

From what I've read, a lot of the typical treatment for the same symptoms but in nonPANDAS kids don't work as they should, or actually make it worse. That is what I've found with my son. His was very obviously related to strep, so I just needed to find the right doctor. It took some time and frustration, the others told us we were crazy and PANDAS was not real. Sounds like you need to first find out if PANDAS is even the case for you. After trying two different meds I pushed for the steroid burst. He started it the tuesday of last week, and showed improvement since Saturday. It is nice to see him have a break from it all, but I know with the steroid burst it is only temporary, but since it did show improvement it even more proved his is PANDAS. It could be a start for you, but keep in mind, I have also read that some PANDAS kids don't show improvement after, but it there is, you know to start going down the PANDAS path. My son is also on a daily antibiotic, to keep bacteria/strep away. We are only about five weeks into this (though I think it started a year ago, but the symptoms after the strep were too minor to detect). I plan first to see about a low dose (not burst) short term use of steroids, to try and give him a longer break, but short enough to where the steroids won't affect the pituitary or adrenal glands. Our Dr is not ready to jump to trying IVIG, he said there are a lot of problems associated with it's use. I've read that with some kids the symptoms will fade in 5-12 weeks, if that's the case with our son, our primary treatment will be to keep him on the daily antibiotic to avoid another incident and further damage. If they don't fade, then we keep on going. I did read somewhere that tryptophan has been helpful with tics, but I still need to research that one, it may or maynot have been related to PANDAS, and as we've seen with out son, anything that helps with normal tics, does not work with him. I'm also going to do further research on Sydenham's Chorea, since it is very similar and see what kind of treatment they have done for that. Since the steroid burst helped, it seems to me the problem is the inflamation of the basil ganglia, so treatment should be directed at reducing that inflamation....

[Worried_Dad]

Hi, Darla:

 

Boy, that sure sounds like the same thing we experienced when our son became ill (Spring of 2007). And - interestingly enough - his symptoms started after a very high fever that was followed shortly thereafter by a sinus infection that wouldn't go away.

 

You might suggest to your doc(s) that they order ASO titer and Anti-DNase B tests, although low results don't mean it isn't PANDAS. (Titers often lag symptoms by 6 weeks or more, and some kids just have low titers to begin with). There's also a "PANDAS panel" test available from NeuroScience that is supposed to be very useful ( https://www.neurorelief.com/index.php?optio...view&id=324 ).

 

If you're seeing overnight explosions of symptoms (OCD, raging, tics, etc.), then there's a good possibility it's PANDAS. (Dr. K told us that "nothing else causes the one-day explosions of symptoms.") If the docs you're seeing dismiss this out of hand because they "don't believe in PANDAS," you might want to hunt for another doc. Antibiotics (including ongoing prophylaxis to prevent re-infection with strep) are crucial, and IVIG or plasma exchange might be worth considering if things aren't getting better (or are getting worse). We did IVIG in October after a year and a half of serious illness for our son, and it has made a big difference. We still have a ways to go, but things are way better than before IVIG.

 

Best of luck... and if the answers you're getting don't make sense to you, keep looking for the right doctor!

 

 

Im am new here, i've been back and fourth on what my eight year old son has. Hes had tics come and go for a couple of years seems to also have Oppositional Defiant Disorder and OCD. I'm not sure if it's Pandas. No testing as of yet. We have a dr. appointment schedualed as well as a neurological apt coming up. He just got a prescription for some antibiotics. The strep test in the dctrs office came back negative but he has a fever and what seems to be a sinus infection. Also, he was a raging lunatic tonight. Agressive, swearing, crying, almost showing signs of a panic attack. He has nevered sweared like this before. He was just plain angry. I have only given him one dose of antibiotics. Is this Pandas? What is my next step? Are there cures for this? IVIG treatment? Or I've read something about prescribing antibiotics over a period of weeks or months. What does that do?

[EAMom]

Hi Darla,

 

What antibiotic/dose is your son on?

 

(I'm being a bit lazy)...check out my response to greeneyes48072 http://www.latitudes.org/forums/index.php?...art=#entry29066 as many of my answers would apply to your son as well.

 

Throat cultures aren't 100% (strep could be hiding out in the sinuses etc) so it's good you are trying the antibiotics. I would also culture family members to check for assymptomatic strep carriers.

 

Our dd has been on abs since March 08 (Azith. since June 08). Prophylactic abs are crucial. Not all kids will respond to antibiotics and that is where IVIG is needed. Our dd was vastly improved after 2 weeks on the Azith., 99% normal by 4 weeks on the Azith.

 

The ODD and OCD/tics could all be from the PANDAS.

 

ASO, anti-dnase B strep titers are worth getting but do not work for all...our dd had full blown psychotic pandas (with strep positive cultures) and had *low titers*. Some kids just don't make the strep titers...doesn't mean they don't have PANDAS. Titers are part of the puzzle and need to be taken with a grain of salt.

 

Also, be aware that the NIMH website is out of date (for example, does not recommend the use of prophylactic abs).

[lss]

EAMOM

 

Are you saying that if a child with Pandas is around a strep carrier, that this would cause a "flare-up" of Pandas symptoms, even if the strep carrier didn't actually have a strep flare up? I'm trying to figure out if this is what happened to my son with this latest flare-up of tics/dilated eyes and his behavior.

 

Thanks,

 

Linda

[PANDAS_Denmark]

EAMOM

 

Are you saying that if a child with Pandas is around a strep carrier, that this would cause a "flare-up" of Pandas symptoms, even if the strep carrier didn't actually have a strep flare up? I'm trying to figure out if this is what happened to my son with this latest flare-up of tics/dilated eyes and his behavior.

 

Thanks,

 

Linda

 

 

Dear Linda -

 

I can tell you for sure, that my son (PANDAS) has flare-ups of tics and OCD every time he´s around a strep carrier - even though he is on Azithromycin.

I have noticed, that several of the parents on this forum have reported the same, and I think "Buster" was the one to give a possible explanation.

I have searched the PANDASlitterature, but haven´t had any success this far, to find these flare-ups when exposed to (but not infected with) streptococcus confirmed.

 

Best wishes -

PANDAS_Denmark

[EAMom]

Hi Linda,

yes, my PANDAS dd reacted to her sister being strep positive (no sore throat/fever etc.). Some tantrums/mild tics...certainly nothing compared to what might have happened if PANDAS dd was not on antibiotics. An oversimplified way to look at it is that these kids act like they are "allergic" to strep and can react just like a kid with peanut allergy reacts when peanuts are in the room (even if they aren't actually eating the peanuts).

[Darla]

Well, the first test came back negative for strep but the second one came back positve. We had already started him on his antibiotics ( Azith ). I spoke to his peditrician yesterday and we have a physical appointment on the 14th. Which was good the pedi said cuz it will be about two weeks from his strep and he can test his antibodies. I was going through his medical record and there was a time that he had a really bad fever with joint pain that lasted a week but no strep. About three years later which was 2006 he had a heart murmer checked out which came back fine they told us. I am wondering if he might have had rhumetic fever as a result of an undiagnosed strep infection, which causes his joint pain and heart murmer. Maybe not. It's a puzzle. But his tics to me seem more to fit his ocd. They are not spastic jerks which is what you think of when you think of tourettes. Hes twists his wrists in a circular motion which he does by choice - sort of . What I mean is that he is physically doing it on his own, but is compelled to do so. They seem like Sydenham's chorea, which is another symptom of Rhemetic fever. I had been given him intrakid vitamins and also Inositol and the inositol does seem to help with his ocd. The germ side of it anyways... washing face, holding spit. But not the wrist twisting. He also has me count twice before he will swallow his vitamins. I could almost take these things over his behavior though. He gets a minor injury like bumping his head and freaks out. Or explodes with anger and agression. He says almost daily that it's the worst day ever. He has his moments of happiness but when hes stressed or upset it's the end of the world. ugh. So what do I do if his titers come back low? whats my next step for diagnosing. What if hes just got some physch issues? I don't know.

[EAMom]

Hi Darla,

 

Your son certainly sounds like PANDAS. It doesn't matter if your son has low titers...you already have proof of strep with the positive culture. Low ASO/antidnase B does not rule out PANDAS. Buster has a post on this http://www.latitudes.org/forums/index.php?showtopic=3756

 

Our dd had full blown psychotic PANDAS (7.5 years old at the time) with positive cultures and she had low titers 2 and 3 mo. post FEVER (when behavior changed).

 

Hes twists his wrists in a circular motion which he does by choice - sort of . What I mean is that he is physically doing it on his own, but is compelled to do so. Our dd had some movements that were (or should I say "are" as she has recently started them up again) like this...perhaps more like "compulsions", I don't know if they were completely involuntary. They involved a complicated "measurement" routine where she would check her neck/chest etc. She also does one where she touches her back. dd's tics seemed to relate to her OCD in that she had PANDAS anorexia nervosa with a fear of gaining weight...the measurement routine was to check that she wasn't getting fat.

[Darla]

I just don't know what to think sometimes. The doctor gave us azith. He Had a fever last Monday went to the pedi on tues (rapid came back neg but they gave us prescrip just in case) I waited until wenesday to get it filled. I thought since it wasn't strep I try not to overload with antibiotics because I hear kids can get immune to them. This is before I came across all of this info. So on wenesday he was much worse got it filled and started him on it. That night and the next he had fits of rage and anxiety. I felt really bad. This is where he attacked me and swore at me and his father (which hes never done). He was taking 200mg of azith. But the last two days of his four day treatment which ended yesterday, I noticed him itching and his face swelling a bit. I didn't want to not finish the dose as I've heard it can cause the strep to become immune to antibiotics or something and it was Sunday so I said he just has one more and it's not too bad of a reaction, i thought it was more important to finish the dose. He is also allergic to amox. He got bad hives from it about a year ago.

 

Besides his wrist twisting he does a shoulder popping thing. He sort of lifts his bent arm out then swings it up. I've witnessed his shoulder actually popping. He does it until it pops. He feels the urge to do this and wants to crack something I think. His anxiety level was really high and he was nervous to go back to school. He said hes nervous hes going to get a lot of work from his teacher. What will I do if hes allergic to anitbitics?? I wonder if maybe he has a Candida issue. That can cause anxiety and irritability and I feel like his breath has a smell to it. Has anyone noticed their childrens breath being a little off?

[amy s]

I just don't know what to think sometimes. The doctor gave us azith. He Had a fever last Monday went to the pedi on tues (rapid came back neg but they gave us prescrip just in case) I waited until wenesday to get it filled. I thought since it wasn't strep I try not to overload with antibiotics because I hear kids can get immune to them. This is before I came across all of this info. So on wenesday he was much worse got it filled and started him on it. That night and the next he had fits of rage and anxiety. I felt really bad. This is where he attacked me and swore at me and his father (which hes never done). He was taking 200mg of azith. But the last two days of his four day treatment which ended yesterday, I noticed him itching and his face swelling a bit. I didn't want to not finish the dose as I've heard it can cause the strep to become immune to antibiotics or something and it was Sunday so I said he just has one more and it's not too bad of a reaction, i thought it was more important to finish the dose. He is also allergic to amox. He got bad hives from it about a year ago.

 

Besides his wrist twisting he does a shoulder popping thing. He sort of lifts his bent arm out then swings it up. I've witnessed his shoulder actually popping. He does it until it pops. He feels the urge to do this and wants to crack something I think. His anxiety level was really high and he was nervous to go back to school. He said hes nervous hes going to get a lot of work from his teacher. What will I do if hes allergic to anitbitics?? I wonder if maybe he has a Candida issue. That can cause anxiety and irritability and I feel like his breath has a smell to it. Has anyone noticed their childrens breath being a little off?

 

 

Yes, I definately have notice my dd's breath being 'off' on several occasions. Not just bad breath kind of breath, either...and not the diabetic type fruity breath either. I have mentioned it to doctors on several occasions since this began for us August 2007. But of course, sinus infections and strep throat will definately cause breath to smell bad so maybe that is it? But even when my dd didn't have any physical signs of illness I would notice an odd smell with her breath. Interesting. She hasn't had that for a long time now.

[Darla]

I just don't know what to think sometimes. The doctor gave us azith. He Had a fever last Monday went to the pedi on tues (rapid came back neg but they gave us prescrip just in case) I waited until wenesday to get it filled. I thought since it wasn't strep I try not to overload with antibiotics because I hear kids can get immune to them. This is before I came across all of this info. So on wenesday he was much worse got it filled and started him on it. That night and the next he had fits of rage and anxiety. I felt really bad. This is where he attacked me and swore at me and his father (which hes never done). He was taking 200mg of azith. But the last two days of his four day treatment which ended yesterday, I noticed him itching and his face swelling a bit. I didn't want to not finish the dose as I've heard it can cause the strep to become immune to antibiotics or something and it was Sunday so I said he just has one more and it's not too bad of a reaction, i thought it was more important to finish the dose. He is also allergic to amox. He got bad hives from it about a year ago.

 

Besides his wrist twisting he does a shoulder popping thing. He sort of lifts his bent arm out then swings it up. I've witnessed his shoulder actually popping. He does it until it pops. He feels the urge to do this and wants to crack something I think. His anxiety level was really high and he was nervous to go back to school. He said hes nervous hes going to get a lot of work from his teacher. What will I do if hes allergic to anitbitics?? I wonder if maybe he has a Candida issue. That can cause anxiety and irritability and I feel like his breath has a smell to it. Has anyone noticed their childrens breath being a little off?

 

 

Yes, I definately have notice my dd's breath being 'off' on several occasions. Not just bad breath kind of breath, either...and not the diabetic type fruity breath either. I have mentioned it to doctors on several occasions since this began for us August 2007. But of course, sinus infections and strep throat will definately cause breath to smell bad so maybe that is it? But even when my dd didn't have any physical signs of illness I would notice an odd smell with her breath. Interesting. She hasn't had that for a long time now.

 

Yes it is interesting. Could it be yeast? I haven't had him checked. He definately brushes his teeth twice a day and I make sure he does a good job. Weird.

[Pezmom]

My son's breath was also bad during his worst PANDAS time in the Fall. It's cleared up now that he's doing better. He also has a reaction when siblings have strep, even when he tests negative. In November, his behavior tanked and his tics increased dramatically and I took all three kids in to have strep tests. The doc on call thought I was nuts as none of them had any signs of strep. She went against her better judgement and cultured them since I pressed. Both my son's tested negative, but my daughter was positive. We actually use our son's behavior as a barometer for strep. We don't wait for the strep symptoms, PANDAS shows us every time.