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Is there always a behaviorial component?

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My ds has sooo many of the symptoms from sudden things like refusing to sleep alone, throat clearing, some eye blinking, frequent urination (although he seems to be actually going, not just the urge to go), he is definitely a bit ocd about washing his hands, pays way to close attention to time, always lets you know if you are off schedule, and these all got a bit more after exposure to strep (he didn't test positive) but my dd had it and he had it several times last year. That said, he has been a bit quick to react to things that shouldn't set him off so but it is nothing like what I have been reading about... his teacher sees absolutely none of it and most of it revolved around when we were trying to get him to sleep alone (I don't push it anymore realizing now that he can't seem to help it so I stay with him till he falls asleep)... that did send him into a scary rage when we wouldn't go into his room at night. So while he is a bit quick to whine and huff about things it is not significant compared to what others describe. Do all pandas children have a scary rage? I am still trying to decide if his symptoms are not severe enough for this to be that.

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By behavioral component many of us deal with ADHD symptoms with poor ability to stay on task and follow directions. Also meltdowns are frequent and look like temper tantrums where they make a real scene. We also experience the nightime issues but it is more about being scared and lonely and needing us to help him fall asleep. The rages may get worse as the kids age and the more frequent the strep episodes happen. I am not sure if the rage is a ADHD component, or a strep reaction. My son will hit his head on the walls and fall to pieces over small things where my other kids could move on. He gets stuck on an idea and just falls to pieces when it doesn't go his way. Be happy if your son is not showing this component. My son started this at an early age probably three. A trip past a McDonalds without stopping would put him into an hour meltdownfrom kicking, to screaming to shouting and hitting things at the window. Part of this may become learned behaviors because he knows at some point we may have given in before. It is a vicious cycle. It sounds like you have most of the symptoms. Did they follow a diagnosed strep infection? Keep a log and trck his symptoms and when they appear and disappear and if sickness was involved. I pray it won't be PANDAS in your case. It is a neuropsychiatric disorder so it is very mood altering.

Michele

 

My ds has sooo many of the symptoms from sudden things like refusing to sleep alone, throat clearing, some eye blinking, frequent urination (although he seems to be actually going, not just the urge to go), he is definitely a bit ocd about washing his hands, pays way to close attention to time, always lets you know if you are off schedule, and these all got a bit more after exposure to strep (he didn't test positive) but my dd had it and he had it several times last year. That said, he has been a bit quick to react to things that shouldn't set him off so but it is nothing like what I have been reading about... his teacher sees absolutely none of it and most of it revolved around when we were trying to get him to sleep alone (I don't push it anymore realizing now that he can't seem to help it so I stay with him till he falls asleep)... that did send him into a scary rage when we wouldn't go into his room at night. So while he is a bit quick to whine and huff about things it is not significant compared to what others describe. Do all pandas children have a scary rage? I am still trying to decide if his symptoms are not severe enough for this to be that.

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The sleep issues started 2 days after my daughter was diagnosed with strep. My ds never tested positive for it at that time though. I had him cultured. I understand that doesn't mean much though. He did have strep a lot this past year and it was the first year we had strep that I was aware of in our house.

 

He gets fixated on ideas but seems to manage to hold it together more than some describe. He gets ideas in his head and it's near impossible to get him off it... like if he wants one thing to eat he will say he won't eat anything if he can't have that... or if he doesn't get to do something he will be VERY dramatic about it.

 

I also noticed a huge increase in a whining almost a moaning about things when I say no.. he keeps going and going and going about it. I didn't know if it was just him being 6 or if it was related.

 

By behavioral component many of us deal with ADHD symptoms with poor ability to stay on task and follow directions. Also meltdowns are frequent and look like temper tantrums where they make a real scene. We also experience the nightime issues but it is more about being scared and lonely and needing us to help him fall asleep. The rages may get worse as the kids age and the more frequent the strep episodes happen. I am not sure if the rage is a ADHD component, or a strep reaction. My son will hit his head on the walls and fall to pieces over small things where my other kids could move on. He gets stuck on an idea and just falls to pieces when it doesn't go his way. Be happy if your son is not showing this component. My son started this at an early age probably three. A trip past a McDonalds without stopping would put him into an hour meltdownfrom kicking, to screaming to shouting and hitting things at the window. Part of this may become learned behaviors because he knows at some point we may have given in before. It is a vicious cycle. It sounds like you have most of the symptoms. Did they follow a diagnosed strep infection? Keep a log and trck his symptoms and when they appear and disappear and if sickness was involved. I pray it won't be PANDAS in your case. It is a neuropsychiatric disorder so it is very mood altering.

Michele

 

My ds has sooo many of the symptoms from sudden things like refusing to sleep alone, throat clearing, some eye blinking, frequent urination (although he seems to be actually going, not just the urge to go), he is definitely a bit ocd about washing his hands, pays way to close attention to time, always lets you know if you are off schedule, and these all got a bit more after exposure to strep (he didn't test positive) but my dd had it and he had it several times last year. That said, he has been a bit quick to react to things that shouldn't set him off so but it is nothing like what I have been reading about... his teacher sees absolutely none of it and most of it revolved around when we were trying to get him to sleep alone (I don't push it anymore realizing now that he can't seem to help it so I stay with him till he falls asleep)... that did send him into a scary rage when we wouldn't go into his room at night. So while he is a bit quick to whine and huff about things it is not significant compared to what others describe. Do all pandas children have a scary rage? I am still trying to decide if his symptoms are not severe enough for this to be that.

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Erica,

 

My son has never really had rage issues as such. When the OCD started we saw problems with seperation anxiety, fears of contamination, fear of harm to family, excessive handwashing. However, after a couple of years he had a couple more strep infections (still did not have a PANDAS diagnosis at that point), and became more emotional. He would cry very easily and was a bit paranoid that kids at school were talking about him and didn't like him. When I would talk to the teachers, they would be so surprised, saying that he had several friends and all the kids seemed to get along with him. He seemed to interpret things differently and was sooo sensitive. That continued to worsen with each strep infection until we finally got our diagnosis and proper treatment. Now it is resolved for the most part. It seems that most of these kids have some issues with emotions. It just manifests differently in each one. As a parent, it is very difficult. You get very little understanding and support from family and friends who believe it is poor parenting. It has so taught me that I should never judge others situations.

 

Dedee

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Thanks Dedee,

 

I had parent teacher conferences yesterday with my ds's teacher and she was shocked that I had any issues with him at home. She said she noticed he uses the bathroom a lot and that she has to remind him that he is not in charge in the classroom but other than that things were fine.. she said he will tell her if she is not doing the exact schedule or if someone breaks a rule and those are the things she just reminds him not to do. He must concentrate so hard to keep it all together at school... he does throat clearing but not at school too.

 

 

Erica,

 

My son has never really had rage issues as such. When the OCD started we saw problems with seperation anxiety, fears of contamination, fear of harm to family, excessive handwashing. However, after a couple of years he had a couple more strep infections (still did not have a PANDAS diagnosis at that point), and became more emotional. He would cry very easily and was a bit paranoid that kids at school were talking about him and didn't like him. When I would talk to the teachers, they would be so surprised, saying that he had several friends and all the kids seemed to get along with him. He seemed to interpret things differently and was sooo sensitive. That continued to worsen with each strep infection until we finally got our diagnosis and proper treatment. Now it is resolved for the most part. It seems that most of these kids have some issues with emotions. It just manifests differently in each one. As a parent, it is very difficult. You get very little understanding and support from family and friends who believe it is poor parenting. It has so taught me that I should never judge others situations.

 

Dedee

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Erica,

 

I can't believe you said that about your son wanting to teach the class at school! LOL! We used to tell my sons teachers every year that their biggest issue with him would be that he really wanted their job! He is very bright, and excels in science. He actually used to correct his teachers if they said even the littlest thing different from what he had read in a different book. He also took it upon himself to watch over the class if the teacher stepped out and would report to her when she got back what went on. It really disturbed him that the other students wouldn't follow the rules and stay in their seats as she asked the to do. One day he actually came home very agitated and said he just didn't like his teacher because she left the class too much and then all the kids would misbehave. I think it has to do with him not being able to control the enviornment. Even though is is better now, he still has issues with things like group activities. He really only wants to work alone, so that only he will control the results and therefore the final grade. He has never been much on team sports. He does great in karate, and received his black belt just last spring. Even though he has a few casual friends, he is mostly a loner and a little intraverted (except at home). Obviously, he will never work in a group or team enviornment. LOL Oh, well, it takes all kinds to keep this world spinning I guess.

 

Dedee

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Wow Dedee, that is definitely interesting! Yes, his teacher told me that they were doing something and she said she wouldn't remember who had a turn and he raised his hand and said, "it's ok, I will" She said that when the class was getting to a warning on noise level she told them they were at yellow and he piped out with, "and if it gets to red that means..." I was concerned that this will be a big turn off to other children but she said so far the other children have not picked up on it too much. She said she tries to gently remind him whose in charge and that if she needs help she will ask him. I really like his teacher and she seems to understand ds. She agreed it was like a compulsion that he just had to do more than him misbehaving. In those ways he has always been on the mature end and loves adult attention, always wants to help...

 

He didn't like soccer but I think it's because he was not very good at it. He is at karate right now with my dh.. of course he is only a yellow belt as he just started not that long ago.

 

I think my ds is going to have problems when he does have group work too. His kindergarten teacher last year told me that there was one other boy who was very good with the math and when she asked a question geared for my ds and this boy they would race to raise their hands to answer... she always asked them how they got their answer. My ds has an interesting way of doing math and when this child would say how he did it my ds would insist it was not right even though they got the same answer. We are always trying to get him to understand that more than one person can be right... but he believes there is only one right way and it is his! I imagine that won't go over too well in group activities.

 

I wonder if these are traits of bright kids or traits of pandas kids or sorta both.

 

 

Erica,

 

I can't believe you said that about your son wanting to teach the class at school! LOL! We used to tell my sons teachers every year that their biggest issue with him would be that he really wanted their job! He is very bright, and excels in science. He actually used to correct his teachers if they said even the littlest thing different from what he had read in a different book. He also took it upon himself to watch over the class if the teacher stepped out and would report to her when she got back what went on. It really disturbed him that the other students wouldn't follow the rules and stay in their seats as she asked the to do. One day he actually came home very agitated and said he just didn't like his teacher because she left the class too much and then all the kids would misbehave. I think it has to do with him not being able to control the enviornment. Even though is is better now, he still has issues with things like group activities. He really only wants to work alone, so that only he will control the results and therefore the final grade. He has never been much on team sports. He does great in karate, and received his black belt just last spring. Even though he has a few casual friends, he is mostly a loner and a little intraverted (except at home). Obviously, he will never work in a group or team enviornment. LOL Oh, well, it takes all kinds to keep this world spinning I guess.

 

Dedee

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Erica,

I have been dealing with PANDAS for over 7 years and have never had my kids rage, however, they have experienced ALL the other symptoms/behaviors that you describe in your child. They also "keep it together" at school. When my daughter's tics were at her worst, she still was able to not do them that much at school, but would let loose the second she got home.

Colleen

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My ds has sooo many of the symptoms from sudden things like refusing to sleep alone, throat clearing, some eye blinking, frequent urination (although he seems to be actually going, not just the urge to go), he is definitely a bit ocd about washing his hands, pays way to close attention to time, always lets you know if you are off schedule, and these all got a bit more after exposure to strep (he didn't test positive) but my dd had it and he had it several times last year. That said, he has been a bit quick to react to things that shouldn't set him off so but it is nothing like what I have been reading about... his teacher sees absolutely none of it and most of it revolved around when we were trying to get him to sleep alone (I don't push it anymore realizing now that he can't seem to help it so I stay with him till he falls asleep)... that did send him into a scary rage when we wouldn't go into his room at night. So while he is a bit quick to whine and huff about things it is not significant compared to what others describe. Do all pandas children have a scary rage? I am still trying to decide if his symptoms are not severe enough for this to be that.

 

 

When I read about the different symptoms that these kids experience, I have to say that at one time or another Gaby has experienced all of them. The interesting thing with PANDAS is that with each episode it could be very different because the antibodies vie for the receptor sites in the brain and if they happen to hit a lot of the ones that have to do with emotion, then you get a lot more of the anger and sadness. The first time that Gaby had this (1 year ago) it was extremely scary because we didn't know what was going on - she had a horrible virus with a fever lasting a week and all symptoms of strep throat (although she tested neg on both rapid and long tests) within a week she was having trouble falling asleep and then stayijng asleep. She would wake up every night for several hours and draw in the air, mouth words to herself, talk about bad dreams and thoughts.

During that time she was very paranoid about her twin sister - accused her of making her food taste bad, or making her itch. She had a lot of sensory issues at that time, like bad smells, bad tastes, itching, etc. She flew into rages about just about anything - if you were looking at her she would suddenly open her eyes wide and accuse you of being mean to her. The rages went on for a couple of months, along with blank stares, decreased attention, blinking, squinting, funny hand movements. All this lasted about 6 months, but within that time it gradually very slowly got better and disappeared end of April, then she started again in August (in between she had been diagnosed twice with strep and treated with antibiotics) However, when she started in August, it was very different from the first episode - none of the angry outbursts, none of the paranoia, none of the sensory issues, but a lot of blank stares, blinking, hand movements, decreased attention span. - mild in comparison to the first time. So I don't believe it always gets worse - it gets different, for sure, but randomly depending on the receptor sites in the brain that are hit.

 

She apologizes a lot and is very judgemental about the actions of others, which sounds a little like what some of the other mothers here are saying - how their kids will insist on doing things a certain way in school and will criticize others for not doing them the same.

 

Gaby had IVIG 4 1/2 weeks ago and had 80% improvement in symptoms for the first 2 weeks, but has gradually slid back down to how she was just before IVIG. She has been on proph abx (augmentin) but I don't know if its not effective for her (some people say azythromycin is better) or if its just a long slow process of the damaged neurons healing themselves. Her doc is out of town right now - am waiting to hear what he thinks when he gets back. Right now her symptoms are such that I can live with it (other than the fact that we wake up every night with her and that academically she is not up to snuff because she can't concentrate well). I am curious about how many kids on these forums have been checked for heavy metals. It seems that quite a few on here have tested high (which Gaby has) and I wonder if this doesn't influence the impaired immune system that they have. Pat

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My ds has sooo many of the symptoms from sudden things like refusing to sleep alone, throat clearing, some eye blinking, frequent urination (although he seems to be actually going, not just the urge to go), he is definitely a bit ocd about washing his hands, pays way to close attention to time, always lets you know if you are off schedule, and these all got a bit more after exposure to strep (he didn't test positive) but my dd had it and he had it several times last year. That said, he has been a bit quick to react to things that shouldn't set him off so but it is nothing like what I have been reading about... his teacher sees absolutely none of it and most of it revolved around when we were trying to get him to sleep alone (I don't push it anymore realizing now that he can't seem to help it so I stay with him till he falls asleep)... that did send him into a scary rage when we wouldn't go into his room at night. So while he is a bit quick to whine and huff about things it is not significant compared to what others describe. Do all pandas children have a scary rage? I am still trying to decide if his symptoms are not severe enough for this to be that.

 

 

When I read about the different symptoms that these kids experience, I have to say that at one time or another Gaby has experienced all of them. The interesting thing with PANDAS is that with each episode it could be very different because the antibodies vie for the receptor sites in the brain and if they happen to hit a lot of the ones that have to do with emotion, then you get a lot more of the anger and sadness. The first time that Gaby had this (1 year ago) it was extremely scary because we didn't know what was going on - she had a horrible virus with a fever lasting a week and all symptoms of strep throat (although she tested neg on both rapid and long tests) within a week she was having trouble falling asleep and then stayijng asleep. She would wake up every night for several hours and draw in the air, mouth words to herself, talk about bad dreams and thoughts.

During that time she was very paranoid about her twin sister - accused her of making her food taste bad, or making her itch. She had a lot of sensory issues at that time, like bad smells, bad tastes, itching, etc. She flew into rages about just about anything - if you were looking at her she would suddenly open her eyes wide and accuse you of being mean to her. The rages went on for a couple of months, along with blank stares, decreased attention, blinking, squinting, funny hand movements. All this lasted about 6 months, but within that time it gradually very slowly got better and disappeared end of April, then she started again in August (in between she had been diagnosed twice with strep and treated with antibiotics) However, when she started in August, it was very different from the first episode - none of the angry outbursts, none of the paranoia, none of the sensory issues, but a lot of blank stares, blinking, hand movements, decreased attention span. - mild in comparison to the first time. So I don't believe it always gets worse - it gets different, for sure, but randomly depending on the receptor sites in the brain that are hit.

 

She apologizes a lot and is very judgemental about the actions of others, which sounds a little like what some of the other mothers here are saying - how their kids will insist on doing things a certain way in school and will criticize others for not doing them the same.

 

Gaby had IVIG 4 1/2 weeks ago and had 80% improvement in symptoms for the first 2 weeks, but has gradually slid back down to how she was just before IVIG. She has been on proph abx (augmentin) but I don't know if its not effective for her (some people say azythromycin is better) or if its just a long slow process of the damaged neurons healing themselves. Her doc is out of town right now - am waiting to hear what he thinks when he gets back. Right now her symptoms are such that I can live with it (other than the fact that we wake up every night with her and that academically she is not up to snuff because she can't concentrate well). I am curious about how many kids on these forums have been checked for heavy metals. It seems that quite a few on here have tested high (which Gaby has) and I wonder if this doesn't influence the impaired immune system that they have. Pat

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Hi, Pat (and everybody):

 

Per our local doc's recommendation, we had the BodyBio "Kennedy-Krieger Fatty Acid Analysis" test (the Lorenzo's Oil test, for anybody who saw the movie) when our son first got sick. About $600 and not covered by insurance, but we were desperate to figure out what was happening. In our son's case, this didn't show heavy metal buildup but rather too little of the "good" metals, like selenium, magnesium, zinc, chromium, etc. Our son has been a vegetarian for a while (since well before his illness, for "personal moral choice" reasons), so he was low in a lot of key areas (like B vitamins / B-12) that have been linked to nervous system function.

 

So we've always wondered if his vegetarian diet contributed to his illness or made him more vulnerable. Guess we'll never know. Regardless, he refuses to eat any meat on moral grounds (although he will eat dairy and eggs).

 

Nothing's easy or clear-cut about this illness, is it? In any event, our son's flare-ups were dramatically different, too. Originally his symptoms were more classic rheumatic fever / Sydenham's chorea: polyarthritis, seizure-like twitching episodes, muscle weakness, difficulty walking, mild emotional lability. This past August, he woke up with an overnight explosion of "classic PANDAS" symptoms: violent OCD (contamination fears), anorexia, separation anxiety, urinary frequency, angry outbursts, crying jags, suicidal talk, wildly dilated pupils. Original symptoms and recent symptoms were radically different.

 

Like Pat said, we assumed that different areas of the brain / basal ganglia were being affected during different waxing periods. I have no medical background, so I don't understand the details, but it makes sense conceptually to a "civilian." (Although after what we all go through as families during relapses, I guess we're more like untrained soldiers in a war zone.) :(

 

My ds has sooo many of the symptoms from sudden things like refusing to sleep alone, throat clearing, some eye blinking, frequent urination (although he seems to be actually going, not just the urge to go), he is definitely a bit ocd about washing his hands, pays way to close attention to time, always lets you know if you are off schedule, and these all got a bit more after exposure to strep (he didn't test positive) but my dd had it and he had it several times last year. That said, he has been a bit quick to react to things that shouldn't set him off so but it is nothing like what I have been reading about... his teacher sees absolutely none of it and most of it revolved around when we were trying to get him to sleep alone (I don't push it anymore realizing now that he can't seem to help it so I stay with him till he falls asleep)... that did send him into a scary rage when we wouldn't go into his room at night. So while he is a bit quick to whine and huff about things it is not significant compared to what others describe. Do all pandas children have a scary rage? I am still trying to decide if his symptoms are not severe enough for this to be that.

 

 

When I read about the different symptoms that these kids experience, I have to say that at one time or another Gaby has experienced all of them. The interesting thing with PANDAS is that with each episode it could be very different because the antibodies vie for the receptor sites in the brain and if they happen to hit a lot of the ones that have to do with emotion, then you get a lot more of the anger and sadness. The first time that Gaby had this (1 year ago) it was extremely scary because we didn't know what was going on - she had a horrible virus with a fever lasting a week and all symptoms of strep throat (although she tested neg on both rapid and long tests) within a week she was having trouble falling asleep and then stayijng asleep. She would wake up every night for several hours and draw in the air, mouth words to herself, talk about bad dreams and thoughts.

During that time she was very paranoid about her twin sister - accused her of making her food taste bad, or making her itch. She had a lot of sensory issues at that time, like bad smells, bad tastes, itching, etc. She flew into rages about just about anything - if you were looking at her she would suddenly open her eyes wide and accuse you of being mean to her. The rages went on for a couple of months, along with blank stares, decreased attention, blinking, squinting, funny hand movements. All this lasted about 6 months, but within that time it gradually very slowly got better and disappeared end of April, then she started again in August (in between she had been diagnosed twice with strep and treated with antibiotics) However, when she started in August, it was very different from the first episode - none of the angry outbursts, none of the paranoia, none of the sensory issues, but a lot of blank stares, blinking, hand movements, decreased attention span. - mild in comparison to the first time. So I don't believe it always gets worse - it gets different, for sure, but randomly depending on the receptor sites in the brain that are hit.

 

She apologizes a lot and is very judgemental about the actions of others, which sounds a little like what some of the other mothers here are saying - how their kids will insist on doing things a certain way in school and will criticize others for not doing them the same.

 

Gaby had IVIG 4 1/2 weeks ago and had 80% improvement in symptoms for the first 2 weeks, but has gradually slid back down to how she was just before IVIG. She has been on proph abx (augmentin) but I don't know if its not effective for her (some people say azythromycin is better) or if its just a long slow process of the damaged neurons healing themselves. Her doc is out of town right now - am waiting to hear what he thinks when he gets back. Right now her symptoms are such that I can live with it (other than the fact that we wake up every night with her and that academically she is not up to snuff because she can't concentrate well). I am curious about how many kids on these forums have been checked for heavy metals. It seems that quite a few on here have tested high (which Gaby has) and I wonder if this doesn't influence the impaired immune system that they have. Pat

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Hi Worried Dad, our PANDAS dd is becoming more and vegetarian. She seemed to be leaning that way pre-pandas and now it's even more so. It's a moral thing (concern for animals) with her as well. (At least I hope it's not a weird way for her to restrict food.) She still eats dairy, eggs, cheese. Thankfully she even has an occasional cheeseburger...but for the most part she's cut out chicken, fish, beef, etc. (I guess a cheeseburger doesn't look much like a cow so she hasn't gotten around to cutting those out yet.) She takes an multi-vit with Iron/Zinc etc every day (since PANDAS). Unfortunately she's not a big fan of beans or vegetables. Dh and I try to tell her that if she's going to be a vegatarian she needs to eat vegatables...hasn't had much effect yet. She always picks the vegetarian entry (cheese this and that) when she gets hot lunch at school nowadays...

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Hi Worried Dad, our PANDAS dd is becoming more and vegetarian. She seemed to be leaning that way pre-pandas and now it's even more so. It's a moral thing (concern for animals) with her as well. (At least I hope it's not a weird way for her to restrict food.) She still eats dairy, eggs, cheese. Thankfully she even has an occasional cheeseburger...but for the most part she's cut out chicken, fish, beef, etc. (I guess a cheeseburger doesn't look much like a cow so she hasn't gotten around to cutting those out yet.) She takes an multi-vit with Iron/Zinc etc every day (since PANDAS). Unfortunately she's not a big fan of beans or vegetables. Dh and I try to tell her that if she's going to be a vegatarian she needs to eat vegatables...hasn't had much effect yet. She always picks the vegetarian entry (cheese this and that) when she gets hot lunch at school nowadays...

 

I guess one of the tricks about having a good vegetarian diet is that you eat enough combinations of the right amino acids to have complete proteins and you want to have enough vitamins and minerals (which I'm not sure you would get enough of through a traditional MVI if its the only way you're getting them) Obviously adults are more successful with this because they know what they have to do and aren't as picky eaters as kids. Some of the health food stores have good super food supplements that probably give more than what you get from regular vitamins - I'd look into those - and what about peanut butter - does she like that? If she eats that in combination with dairy - its a complete protein - also brazil nuts, pumpkin seeds and sunflower seeds are supposed to be extremely nutritional.

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Sean doesn't like meat very well either. He prefers processed meats like hot dogs and bologna, so much so that I won't buy them because he eats them up all at once. Fortunately, he does like vegetables, with broccoli, green beans, and carrots. I'm trying to push high protein foods because he is hungry all the time. Sean resists trying anything new or doesn't remember but usually likes it and eats most of it if you can get him to try it.

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