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WOW! I have already learned so much just by reading as many posts as possible....Yesterday I hear the words PANDAS syndrome for the first time... I have been reading ever since... I am part scared, part relieved and part exhausted.

My son is 7 almost 8. He has had behavior issues we have dealt with off and on his whole life. Every Spring is gets bad- REALLY BAD. Last weekend he knocked over his chest of drawers, thinks nothing of trying to bite or scratch me, is defiant and disrespectful. It is as if he is a different kid- not that he does not have disrespectful tendencies to start with but it has gotten really bad. He had to spend a whole day locked in his room for his unwillingness to function appropriately- I almost took him to the ER because I could not get him calmed down. He has often said he can't control it- he also has said there are these cards in his head that tell him to do these things.

We had strep about a month-6 weeks ago- started with stomach pain as always. Had a course of Amoxicillan and then got a stomach bug after(threw up all night)- followed up with stomach pain again- negative strep test. Went back to GI Dr and figured h pylori must be back ( had an endoscopy in the Fall and tested positive for h pylori- thought stomach problems would be over) been having stomach issues after last round of strep went back to GI b/c negative strep test and started h pylori meds again. Had been on Amoxicillan for 8 days b/c of h pylori treatment ( which I realize now was not a re-occurance of h pylori but of strep) and and we tested positive for strep yesterday- now we are on Omnicef. The Doctor suggest PANDAS due to his behavior shifts with strep. I know for a fact he has always had a deterioration in behavior when he has strep.

 

He does not have any tics- but has had some in his life- lip licking, excessive blinking but none that I know of at his time. WE have night wetting, sometimes day wetting, compulsions, a greater fear of the dark than usual- must have doors closed when upstairs- someone must turn on lights, defiance ( SERIOUS defiance), emotional lability- rages, moodiness etc... I have always thought he had some anxiety issues. He is the kid that can't keep his hands to himself and when he is in a bad space will just hurt people.

We live in Texas and have an appt with Dr mark Mazade April 21st...Any tips what to do until then?????

Brandy

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Hello and welcome. I am glad you have found us, it sounds like you are in the right place. I found this forum a little over a year ago and it was the best thing that has happened to us, giving us focus and information on what is going on with my girls. I have 3 girls, 7 and 8 both with pandas.

 

Your 8 yr old sounds like a combo of my two! Is he on antibiotics now for the strep? Did your doc give him a longer treatment than the usual 10 days? If possible, I'd keep him on antibiotics until your april 21st appt. I'm not familiar with that doc, does he treat pandas kids?

 

GOOD LUCK to you!!

 

Susan

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Sorry you have to be here but it's got some good company....

Pylori is from what i understand a known trigger also

and you are very fortunate to find a Doctor who acknowleges Pandas

Please let us know how it goes...and if you could let us know the docs name so we can add to our list!!!

 

WOW! I have already learned so much just by reading as many posts as possible....Yesterday I hear the words PANDAS syndrome for the first time... I have been reading ever since... I am part scared, part relieved and part exhausted.

My son is 7 almost 8. He has had behavior issues we have dealt with off and on his whole life. Every Spring is gets bad- REALLY BAD. Last weekend he knocked over his chest of drawers, thinks nothing of trying to bite or scratch me, is defiant and disrespectful. It is as if he is a different kid- not that he does not have disrespectful tendencies to start with but it has gotten really bad. He had to spend a whole day locked in his room for his unwillingness to function appropriately- I almost took him to the ER because I could not get him calmed down. He has often said he can't control it- he also has said there are these cards in his head that tell him to do these things.

We had strep about a month-6 weeks ago- started with stomach pain as always. Had a course of Amoxicillan and then got a stomach bug after(threw up all night)- followed up with stomach pain again- negative strep test. Went back to GI Dr and figured h pylori must be back ( had an endoscopy in the Fall and tested positive for h pylori- thought stomach problems would be over) been having stomach issues after last round of strep went back to GI b/c negative strep test and started h pylori meds again. Had been on Amoxicillan for 8 days b/c of h pylori treatment ( which I realize now was not a re-occurance of h pylori but of strep) and and we tested positive for strep yesterday- now we are on Omnicef. The Doctor suggest PANDAS due to his behavior shifts with strep. I know for a fact he has always had a deterioration in behavior when he has strep.

 

He does not have any tics- but has had some in his life- lip licking, excessive blinking but none that I know of at his time. WE have night wetting, sometimes day wetting, compulsions, a greater fear of the dark than usual- must have doors closed when upstairs- someone must turn on lights, defiance ( SERIOUS defiance), emotional lability- rages, moodiness etc... I have always thought he had some anxiety issues. He is the kid that can't keep his hands to himself and when he is in a bad space will just hurt people.

We live in Texas and have an appt with Dr mark Mazade April 21st...Any tips what to do until then?????

Brandy

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WOW! I have already learned so much just by reading as many posts as possible....Yesterday I hear the words PANDAS syndrome for the first time... I have been reading ever since... I am part scared, part relieved and part exhausted.

My son is 7 almost 8. He has had behavior issues we have dealt with off and on his whole life. Every Spring is gets bad- REALLY BAD. Last weekend he knocked over his chest of drawers, thinks nothing of trying to bite or scratch me, is defiant and disrespectful. It is as if he is a different kid- not that he does not have disrespectful tendencies to start with but it has gotten really bad. He had to spend a whole day locked in his room for his unwillingness to function appropriately- I almost took him to the ER because I could not get him calmed down. He has often said he can't control it- he also has said there are these cards in his head that tell him to do these things.

We had strep about a month-6 weeks ago- started with stomach pain as always. Had a course of Amoxicillan and then got a stomach bug after(threw up all night)- followed up with stomach pain again- negative strep test. Went back to GI Dr and figured h pylori must be back ( had an endoscopy in the Fall and tested positive for h pylori- thought stomach problems would be over) been having stomach issues after last round of strep went back to GI b/c negative strep test and started h pylori meds again. Had been on Amoxicillan for 8 days b/c of h pylori treatment ( which I realize now was not a re-occurance of h pylori but of strep) and and we tested positive for strep yesterday- now we are on Omnicef. The Doctor suggest PANDAS due to his behavior shifts with strep. I know for a fact he has always had a deterioration in behavior when he has strep.

 

He does not have any tics- but has had some in his life- lip licking, excessive blinking but none that I know of at his time. WE have night wetting, sometimes day wetting, compulsions, a greater fear of the dark than usual- must have doors closed when upstairs- someone must turn on lights, defiance ( SERIOUS defiance), emotional lability- rages, moodiness etc... I have always thought he had some anxiety issues. He is the kid that can't keep his hands to himself and when he is in a bad space will just hurt people.

We live in Texas and have an appt with Dr mark Mazade April 21st...Any tips what to do until then?????

Brandy

 

Welcome! Hope all goes well with your appointment on the 21st! We are in TX as well. If you need a neurologist, Dr. Majeed in Dallas treated our daughter and we saw Dr. Debra Phalen, a psychologist as well. Dr. Phalen was phenomenal and used CBT to rid our daughter of some of her OCD thoughts.

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Hi Brandy,

 

You could try advil on your son, and see if it helps with mood/behaviors.

 

Also, check out the "helpful threads" http://www.latitudes.org/forums/index.php?showtopic=3928 The "Frequently Asked Questions" post is a good place to start.

 

I would also rec. throat culturing family members to make sure you don't have any assymptomatic carriers in the household.

Edited by EAMom
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Welcome. So, did they find he had strep in his gut? As for PANDAS symptoms, my son did not have tics. He also had many of the problems you listed. I have also learned that when he wets his bed (he's now 6) it means he's probably getting sick. My heart stops every time I hear "Mommmmmmmy!" in the middle of the night when it's wet. Doesn't happen often, but when he was in his last strep triggered exacerbation, it happened every night for probably over a month.

 

So, you are now on Omnicef. How long is that prescription for?

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Welcome. So, did they find he had strep in his gut? As for PANDAS symptoms, my son did not have tics. He also had many of the problems you listed. I have also learned that when he wets his bed (he's now 6) it means he's probably getting sick. My heart stops every time I hear "Mommmmmmmy!" in the middle of the night when it's wet. Doesn't happen often, but when he was in his last strep triggered exacerbation, it happened every night for probably over a month.

 

So, you are now on Omnicef. How long is that prescription for?

 

Thanks everyone for the fast response!! He is on Omnicef for 10 days but I think I am going to call the PEd who suggested PANDAS and ask for longer- until we get to the Pediatric infectious disease specialist who treats PANDAS. Good call on the bed wetting and being sick- I will have to track now- because it definitely comes and goes. My husband thinks he does it defiantly but I have always known something else was up- had a sleep study had obstructive sleep apnea- had tonsils and adenoids removed at Thanksgiving- night wetting has gotten better- but as I said it comes and goes....interesting!

THANKS!

BRandy

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Sorry you have to be here but it's got some good company....

Pylori is from what i understand a known trigger also

and you are very fortunate to find a Doctor who acknowleges Pandas

Please let us know how it goes...and if you could let us know the docs name so we can add to our list!!!

 

WOW! I have already learned so much just by reading as many posts as possible....Yesterday I hear the words PANDAS syndrome for the first time... I have been reading ever since... I am part scared, part relieved and part exhausted.

My son is 7 almost 8. He has had behavior issues we have dealt with off and on his whole life. Every Spring is gets bad- REALLY BAD. Last weekend he knocked over his chest of drawers, thinks nothing of trying to bite or scratch me, is defiant and disrespectful. It is as if he is a different kid- not that he does not have disrespectful tendencies to start with but it has gotten really bad. He had to spend a whole day locked in his room for his unwillingness to function appropriately- I almost took him to the ER because I could not get him calmed down. He has often said he can't control it- he also has said there are these cards in his head that tell him to do these things.

We had strep about a month-6 weeks ago- started with stomach pain as always. Had a course of Amoxicillan and then got a stomach bug after(threw up all night)- followed up with stomach pain again- negative strep test. Went back to GI Dr and figured h pylori must be back ( had an endoscopy in the Fall and tested positive for h pylori- thought stomach problems would be over) been having stomach issues after last round of strep went back to GI b/c negative strep test and started h pylori meds again. Had been on Amoxicillan for 8 days b/c of h pylori treatment ( which I realize now was not a re-occurance of h pylori but of strep) and and we tested positive for strep yesterday- now we are on Omnicef. The Doctor suggest PANDAS due to his behavior shifts with strep. I know for a fact he has always had a deterioration in behavior when he has strep.

 

He does not have any tics- but has had some in his life- lip licking, excessive blinking but none that I know of at his time. WE have night wetting, sometimes day wetting, compulsions, a greater fear of the dark than usual- must have doors closed when upstairs- someone must turn on lights, defiance ( SERIOUS defiance), emotional lability- rages, moodiness etc... I have always thought he had some anxiety issues. He is the kid that can't keep his hands to himself and when he is in a bad space will just hurt people.

We live in Texas and have an appt with Dr mark Mazade April 21st...Any tips what to do until then?????

Brandy

H pylori can be a trigger too? God I have a lot to learn....Since he had strep then swine before his h pylori finding I can only imagine how exacerbated his symptoms have been!! I got Dr Mazade from this board and the Pediatrician who suggested PANDAS ( but I don't know how much he knows about it- was Dr Frank in Plano Texas at Willowbend pediatrics)

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Hi Brandy,

 

You could try advil on your son, and see if it helps with mood/behaviors.

 

Also, check out the "helpful threads" http://www.latitudes.org/forums/index.php?showtopic=3928 The "Frequently Asked Questions" post is a good place to start.

 

I would also rec. throat culturing family members to make sure you don't have any assymptomatic carriers in the household.

 

Thanks for the tip-started the Motrin this evening- gave him Benadryl too- since I am afraid his allergies are causing further inflammation and he has a skin rash- looks similar to poison ivy but not quite- it is on his face and upper arms.

Brandy

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Welcome. So, did they find he had strep in his gut? As for PANDAS symptoms, my son did not have tics. He also had many of the problems you listed. I have also learned that when he wets his bed (he's now 6) it means he's probably getting sick. My heart stops every time I hear "Mommmmmmmy!" in the middle of the night when it's wet. Doesn't happen often, but when he was in his last strep triggered exacerbation, it happened every night for probably over a month.

 

So, you are now on Omnicef. How long is that prescription for?

 

Regarding the strep in the gut- not that I know of but I figure it has GOT to be there- it is where all his pain starts and is focused- he never has a sore throat from it- do you know how they test for that? OR should they have been able to tell with the Endoscopy?

Brandy

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Welcome. So, did they find he had strep in his gut? As for PANDAS symptoms, my son did not have tics. He also had many of the problems you listed. I have also learned that when he wets his bed (he's now 6) it means he's probably getting sick. My heart stops every time I hear "Mommmmmmmy!" in the middle of the night when it's wet. Doesn't happen often, but when he was in his last strep triggered exacerbation, it happened every night for probably over a month.

 

So, you are now on Omnicef. How long is that prescription for?

 

Regarding the strep in the gut- not that I know of but I figure it has GOT to be there- it is where all his pain starts and is focused- he never has a sore throat from it- do you know how they test for that? OR should they have been able to tell with the Endoscopy?

Brandy

Hi Brandy,

Welcome to the board. My son had(has?) strep in his gut and they found it through a comprehensive GI panel. He also had elevated titers (have they run those on your son?)

I would say try to keep him on antibiotics until you see the specialist. It is very important that you test the whole family to see if anyone else has it. Even on antibiotics, if they are exposed the symptons will remain.

I am sorry your son is going through this, but doesn't it feel better when you know he is not doing it on purpose? I would get so frustrated with him before we figured out what was going on. It is hard still when he is having a bad day, but at least now we know.

Isabel

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Hello and welcome - yes... you are in the right place! Regarding the swine - that was how I got here. I had given up on PANDAS about 2 years ago when the throat cultures kept coming back negative, but we had a bad relapse this year with school funcitoning (my son is now 13). We found out in early January that he was bombing out in school and had been for a couple of months- when I went back and checked his grades carefully I found that he went from low 80s to 50s in a matter of a two weeks - with one of those weeks being the week he was out sick with the flu (presmuably H1N1). I got back on the internet looking for "H1N1 and PANDAS" and found all this new information and wonderful people who already knew my whacky story because they lived it too! If you are doing blood tests, you might want to ask for H1N1 titers - or influenzae A titers if they cannot do H1N1, just to get a better idea if that was a trigger. My son's infl A was positive, so that is one more thing we can put on his triggers and symptoms list.

 

Since he had strep then swine before his h pylori finding I can only imagine how exacerbated his symptoms have been!! I got Dr Mazade from this board and the Pediatrician who suggested PANDAS ( but I don't know how much he knows about it- was Dr Frank in Plano Texas at Willowbend pediatrics)
Edited by kimballot
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Good call on the bed wetting and being sick- I will have to track now- because it definitely comes and goes. My husband thinks he does it defiantly but I have always known something else was up- had a sleep study had obstructive sleep apnea- had tonsils and adenoids removed at Thanksgiving- night wetting has gotten better- but as I said it comes and goes....interesting!

THANKS!

BRandy

 

My girls wet the bed at night when they have strep too. It's one of my first signs that it's back.

 

Susan

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My son showed signs of Oppositional Defiance Disorder (ODD), but his bed wetting wasn't part of it. I never reprimanded him for the bed wetting. It is a symptom with PANDAS. Not saying, ether can't be other causes for it, but it is definitely a symptom. As for strep in the gut, I think they do a stool a sample. Does your son take PROBIOTICS? If not, I suggest starting those too. They should be spaced out from the antibiotics.

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WOW! I have already learned so much just by reading as many posts as possible....Yesterday I hear the words PANDAS syndrome for the first time... I have been reading ever since... I am part scared, part relieved and part exhausted.

My son is 7 almost 8. He has had behavior issues we have dealt with off and on his whole life. Every Spring is gets bad- REALLY BAD. Last weekend he knocked over his chest of drawers, thinks nothing of trying to bite or scratch me, is defiant and disrespectful. It is as if he is a different kid- not that he does not have disrespectful tendencies to start with but it has gotten really bad. He had to spend a whole day locked in his room for his unwillingness to function appropriately- I almost took him to the ER because I could not get him calmed down. He has often said he can't control it- he also has said there are these cards in his head that tell him to do these things.

We had strep about a month-6 weeks ago- started with stomach pain as always. Had a course of Amoxicillan and then got a stomach bug after(threw up all night)- followed up with stomach pain again- negative strep test. Went back to GI Dr and figured h pylori must be back ( had an endoscopy in the Fall and tested positive for h pylori- thought stomach problems would be over) been having stomach issues after last round of strep went back to GI b/c negative strep test and started h pylori meds again. Had been on Amoxicillan for 8 days b/c of h pylori treatment ( which I realize now was not a re-occurance of h pylori but of strep) and and we tested positive for strep yesterday- now we are on Omnicef. The Doctor suggest PANDAS due to his behavior shifts with strep. I know for a fact he has always had a deterioration in behavior when he has strep.

 

He does not have any tics- but has had some in his life- lip licking, excessive blinking but none that I know of at his time. WE have night wetting, sometimes day wetting, compulsions, a greater fear of the dark than usual- must have doors closed when upstairs- someone must turn on lights, defiance ( SERIOUS defiance), emotional lability- rages, moodiness etc... I have always thought he had some anxiety issues. He is the kid that can't keep his hands to himself and when he is in a bad space will just hurt people.

We live in Texas and have an appt with Dr mark Mazade April 21st...Any tips what to do until then?????

Brandy

 

Welcome! Hope all goes well with your appointment on the 21st! We are in TX as well. If you need a neurologist, Dr. Majeed in Dallas treated our daughter and we saw Dr. Debra Phalen, a psychologist as well. Dr. Phalen was phenomenal and used CBT to rid our daughter of some of her OCD thoughts.

We have an appt with Dr Majeed on Thursday- thanks for the tip! Let's see how this goes- so far a couple of medical professionals when asked about my ds and Pandas had a big AHA!! So a lot of people are waiting to see what turns up!

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