New here with questions about possible PANDAS

[monarchcat]

Hi, I'm so glad to have found this board. I have spent some time reading, and will be reading more, but wanted to post and perhaps get some feedback/input/advice.

 

I'll give you the background first. My son is 8 and is extremely bright, has always been extremely verbal, etc, but has also been a fairly challenging child. He struggles some with anger, moodiness, irritability, some paranoia, etc, but nothing TOO extreme. Just more than the "norm" I think. He has a tendency toward what I would call "verbal defiance." He doesn't necessarily act out or disobey physically, but he argues and contradicts everything much of the time. He saw a therapist for a year and that helped him work through some of the ways to make life and friendships, etc "work". We've gone through plenty of phases where things are great, and he's agreeable and happy, etc.

 

Though he was "challenging" from birth, his behavior really turned right after he turned 5. My child who had never had a temper tantrum, suddenly started having them, hitting other kids, hitting me, screaming, etc. After a couple months of dealing with this, I read "1 2 3 Magic" and we followed the program and he responded pretty well. When he was 6 he began showing evidence of a tic. It started with a mild eye squint, and then as days and weeks went on it progressed into a full, strong eye squint, facial grimace and hand clench (all at the same time). If memory serves this went on for a few months and then waned. Over the next year or so it would come back from time to time, though never with the same intensity as the first episode. His pediatrician said it seemed to be Transient Tic Syndrome and it could potentially come and go through adolescence.

 

This past December he very suddenly developed a new tic. Over night he went from completely tic-free to a very pronounced and obvious head/neck thrust sort of thing that was almost constant, especially in the evenings. After this went on for a day or so, he woke up in the middle of the night with a raging case of strep throat, which he went on amoxicillian for. The tic was still present, but began to wane over the following weeks. I noticed no OCD symptoms or other behavioral changes.

 

2-3 weeks ago he was home from school with a virus and I took him to the dr after a few days and he tested positive for strep as well and went on amox. No sign of tics at that time. Now a couple weeks later I am seeing some symptoms that I am wondering about. He has been very clingy over the past few days. Hugging me incessantly when he can. He also saw part of a science show about the universe and became terrified about the universe ending some day in "The Big Crunch" (as scientists call the opposite of the Big Bang). He loves science and for him this was very unusual. He is a thinker and a worrier by nature, but he's never had a reaction anything like this.

 

He's also been acting out physically with one of his friends. He's hit him and kicked him a number of times lately, which is out of character for him, though he has always struggled with maintaining friendships.

 

He's always been very bright and very mature for his age. He's a deep thinker, very aware, and very intuitive, but has a tendency to think that people are against him or "don't REALLY like him". He can be wonderfully sweet, happy and engaging or he can be extremely negative, grumpy, anxiety-ridden and belligerent (though the really negative behavior is only reserved for us, his parents - he can control it elsewhere).

 

Ok, so that's the history. I had not known about PANDAS until recently and as I read more, I can see that some things fit him and some don't. The way that the tics began with him don't seem to indicate PANDAS because it was a gradual onset, but the most recent bout with a tic - extremely sudden onset, completely new tic/movement, coinciding with a strep infection does fit. Some of the new behaviors seem to fit, but they are not nearly as extreme as I have read in the case studies.

 

Could this be PANDAS? Are all cases fairly extreme or are there more subtle cases?

 

I have had him on Omega 3 fatty acids for two years now (about 2.5g of combination DHA and EPA per day). If this is PANDAS, could that be helping the symptoms from being extreme?

 

I am going to call his pediatrician, but I first want to arm myself with more knowledge and appropriate questions since I am not sure how informed he is about PANDAS.

 

Oh, and I have been reading from this site: http://www.webpediatrics.com/pandasclinicalcases.html and this especially caught my eye:

PANDAS is more likely to occur in certain "phenotype" of children:



In children with a history of an early speech development, and who (usually) (prior to the illness) excel in school, particularly in math and sciences.

 In children who normally exhibit certain amount of obsessions with order, punctuality, preciseness, school work, etc., before the illness.

 Parents of children with PANDAS are more likely to be either highly educated or extremely enterprising. Even more likely is that the mother of a child with PANDAS is highly intelligent, has a history of being good in math and with computers (computer-savvy), and can exhibit certain degree of obsession with punctuallity and order.

 

Those are all extremely accurate, both about my son and my husband and myself. Well, I'm certainly not one to call myself "highly intelligent", but I guess I'm smart enough, lol. My career was in IT before I left to stay home with my children, so the "computer savvy" part is certainly true. My husband is extremely intelligent.

 

I would really appreciate any feedback...

 

Thanks so much....

[lismom]

Hi, I'm so glad to have found this board. I have spent some time reading, and will be reading more, but wanted to post and perhaps get some feedback/input/advice.

 

I'll give you the background first. My son is 8 and is extremely bright, has always been extremely verbal, etc, but has also been a fairly challenging child. He struggles some with anger, moodiness, irritability, some paranoia, etc, but nothing TOO extreme. Just more than the "norm" I think. He has a tendency toward what I would call "verbal defiance." He doesn't necessarily act out or disobey physically, but he argues and contradicts everything much of the time. He saw a therapist for a year and that helped him work through some of the ways to make life and friendships, etc "work". We've gone through plenty of phases where things are great, and he's agreeable and happy, etc.

 

Though he was "challenging" from birth, his behavior really turned right after he turned 5. My child who had never had a temper tantrum, suddenly started having them, hitting other kids, hitting me, screaming, etc. After a couple months of dealing with this, I read "1 2 3 Magic" and we followed the program and he responded pretty well. When he was 6 he began showing evidence of a tic. It started with a mild eye squint, and then as days and weeks went on it progressed into a full, strong eye squint, facial grimace and hand clench (all at the same time). If memory serves this went on for a few months and then waned. Over the next year or so it would come back from time to time, though never with the same intensity as the first episode. His pediatrician said it seemed to be Transient Tic Syndrome and it could potentially come and go through adolescence.

 

This past December he very suddenly developed a new tic. Over night he went from completely tic-free to a very pronounced and obvious head/neck thrust sort of thing that was almost constant, especially in the evenings. After this went on for a day or so, he woke up in the middle of the night with a raging case of strep throat, which he went on amoxicillian for. The tic was still present, but began to wane over the following weeks. I noticed no OCD symptoms or other behavioral changes.

 

2-3 weeks ago he was home from school with a virus and I took him to the dr after a few days and he tested positive for strep as well and went on amox. No sign of tics at that time. Now a couple weeks later I am seeing some symptoms that I am wondering about. He has been very clingy over the past few days. Hugging me incessantly when he can. He also saw part of a science show about the universe and became terrified about the universe ending some day in "The Big Crunch" (as scientists call the opposite of the Big Bang). He loves science and for him this was very unusual. He is a thinker and a worrier by nature, but he's never had a reaction anything like this.

 

He's also been acting out physically with one of his friends. He's hit him and kicked him a number of times lately, which is out of character for him, though he has always struggled with maintaining friendships.

 

He's always been very bright and very mature for his age. He's a deep thinker, very aware, and very intuitive, but has a tendency to think that people are against him or "don't REALLY like him". He can be wonderfully sweet, happy and engaging or he can be extremely negative, grumpy, anxiety-ridden and belligerent (though the really negative behavior is only reserved for us, his parents - he can control it elsewhere).

 

Ok, so that's the history. I had not known about PANDAS until recently and as I read more, I can see that some things fit him and some don't. The way that the tics began with him don't seem to indicate PANDAS because it was a gradual onset, but the most recent bout with a tic - extremely sudden onset, completely new tic/movement, coinciding with a strep infection does fit. Some of the new behaviors seem to fit, but they are not nearly as extreme as I have read in the case studies.

 

Could this be PANDAS? Are all cases fairly extreme or are there more subtle cases?

 

I have had him on Omega 3 fatty acids for two years now (about 2.5g of combination DHA and EPA per day). If this is PANDAS, could that be helping the symptoms from being extreme?

 

I am going to call his pediatrician, but I first want to arm myself with more knowledge and appropriate questions since I am not sure how informed he is about PANDAS.

 

Oh, and I have been reading from this site: http://www.webpediatrics.com/pandasclinicalcases.html and this especially caught my eye:

PANDAS is more likely to occur in certain "phenotype" of children:



In children with a history of an early speech development, and who (usually) (prior to the illness) excel in school, particularly in math and sciences.

 In children who normally exhibit certain amount of obsessions with order, punctuality, preciseness, school work, etc., before the illness.

 Parents of children with PANDAS are more likely to be either highly educated or extremely enterprising. Even more likely is that the mother of a child with PANDAS is highly intelligent, has a history of being good in math and with computers (computer-savvy), and can exhibit certain degree of obsession with punctuallity and order.

 

Those are all extremely accurate, both about my son and my husband and myself. Well, I'm certainly not one to call myself "highly intelligent", but I guess I'm smart enough, lol. My career was in IT before I left to stay home with my children, so the "computer savvy" part is certainly true. My husband is extremely intelligent.

 

I would really appreciate any feedback...

 

Thanks so much....

 

 

I wanted to respond because we are in the middle of trying to figure out whether my son has pandas or not. I have read that because this is not well studied yet there is room for a bigger criteria then previously thought. My son also fits the type. He had tics that came and went with different things that would trigger. One of which now I believe to be vaccines which contributed to possibly effected his immune system. He has tics that have improved some each time I tried an antibiotic. Our big issue has been fatigue and body aches as well. We've had so much blood work and the only thing that came back were high strep titers. I think he was missed diagnosed back in December when this started. Only now that have we been on Zithromax for a week and 2 days ago I saw some improvement. Today not as good but if he has been fighting this for 4 months I believe it can take a while. I hope. Kathy

[EAMom]

Have you cultured after the course of amoxcillin (wait 3-4 weeks after the last dose, you could re-culture sooner but you might get a false neg so then you should re-culture a 2nd time at 1 mo. to be sure) to make sure your son's strep is really cleared?

 

I would also culture family members to check for strep carriers (do the 72 hour culture if the rapid is neg).

 

Here's an article on amoxcillin failure in strep throat http://www.entrepreneur.com/tradejournals/.../169459644.html

 

Yes, I believe PANDAS can be more subtle and there can also be a more chronic form (esp. if these kids aren't treated aggressively early on with abs). Also, be aware cultures aren't 100% (eg strep can hide out in the sinuses where you can't culture easily). Our dd's pandas episode (age 7.5) last year was full-blown and dramatic (psychotic, anorexia nervosa with hosp.,)...in hindsight we realize she likely had low-grade episodes (urinary, handwashing, anxiety) since pre-school that went undiagnosed.

 

Here's a good post by Buster (under essential threads) with PANDAS info. http://www.latitudes.org/forums/index.php?showtopic=3911

 

I am a big fan of Azith..it is immune modulating and gets intra-cellular strep. Azith. is also a good antibiotic to get rid of the carrier state. (There are some pandas kids that respond better to cephalosporins however).

 

Let us know how it goes with your ped. Unfortunately, most docs are not well-informed on this disease. If you let us know where you live then maybe someone can recommend a doc.

[monarchcat]

I am going to call my doctor in the next couple days. My son seems to be "fine" at the moment, following the few days of being emotionally off kilter, etc. Now I'm second guessing myself! But, the one thing that makes me think PANDAS is a possibility is the episode in December when he developed sudden, dramatic tics at the same time as a bad strep throat infection.

 

I'll be interested to see what my doctor thinks, but I have a feeling it's going to be a "wait and see" kind of thing for now since he doesn't seem to have any tics or other symptoms at the moment, though there is always an underlying emotional rollercoaster.

 

He is about 2 weeks post amox for his last strep infection. Should I ask his doctor to culture him again in a week or so? Should I request that they check his titers? And then if he has a flare up of tics and/or behavioral changes, etc in the future, we should culture again and/or check titers?

 

I'll also ask him about culturing other family members as well.

[EAMom]

He is about 2 weeks post amox for his last strep infection. Should I ask his doctor to culture him again in a week or so? Should I request that they check his titers? And then if he has a flare up of tics and/or behavioral changes, etc in the future, we should culture again and/or check titers?

Yes, re-culture in a week or so.

 

IMO titers (ASO and anti-dnase B ) aren't needed if you already have a positve culture. This is a lot of good info. on titers (Buster's Aug 24 and Jan 11 posts) http://www.latitudes.org/forums/index.php?...art=#entry29305 Be aware that lots of PANDAS kids don't have elevated titers. But, many docs are confused about this and will interpret low titers as "proof" that your child doesn't have PANDAS.

 

I would culture every time there is a behavior change...even if there are no other strep symptoms.

 

I'll also ask him about culturing other family members as well.

 

I would definitely do this if your son re-cultures positive. It would be a good idea even if he doesn't (piece of mind, to make sure you don't have a strep carrier that might re-infect or just cause low grade symptoms by exposing your son to further strep antigens). Your doc may be wary..if he balks I would lie and say they have sore throats.