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adkmom
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Darlene, sorry this will be long...

 

To answer your question: Jack was a somewhat colicky baby (not the classic screaming 3 plus hours per day)... but just fussy enough... we used to let him sleep in his car seat overnight because it was the only way he'd sleep contentedly... I used to worry about his neck/head but our ped. said we weren't the first to do this and we wouldn't be the last! He wouldn't take a pacifier and I used to have to let him suck my little pinky for what seemed like hours to soothe him. He had a lot of early ear infections, bronchiolitis, and ultimately asthma (which he still has).

 

We had our second boy when he was only 13 months old... and from early on, you could see they had very different temperments... Jack is more like me and my family (neurotic!!)... and his brother Charlie is like his father (easy going and laid back)... interestingly, they BOTH get a ton of colds, infections, etc. Charlie has had two ear tube surgeries and an adenoidectomy with the second; after about 12-15 months, the tubes start to come out, and he starts getting ear infections again. His just stopped functioning and he's had three ear infections already... so he'll likely be getting his third round of ear tubes and I might as well get his tonsils out... since he's had strep almost every time Jack has... Jack will also be getting his tonsils/adenoids out. But... whereas they both get a ton on infections... only Jack has PANDAS (and it seems that he just has the genetic susceptibility that his brother doesn't.

 

All of these years (well, he's only 5 and a half!), my husband and I just figured Jack had a more sensitive temperment and chalked up a lot of behaviors to that...e.g. at 1-2, he was just a fussier baby (no major tantrums... just more easily startled, more easily annoyed, less willing to share than his younger brother, more frustrated when something didn't go his way). Oh- and a pickier eater!

 

At 3, we noticed more of the same and by 3.5 he had some more major anger issues... e.g. spitting and some mild hitting when he was upset or told No to something. He would also growl when angry (and although fussy... he wasn't an angry kid... so we chalked it up to just a phase... I think now it was some Pandas episodes b/c it really came and went episodically. He is competetive and rigid (likes to follow the rules). At around 3- 3.5, I also noticed that he would throw a drawing away if there was one thing he made a "mistake" on... he couldn't just continue to draw like his brother... he had to completely start over. He was a thumb sucker until age 4 (and don't laugh but I actually used the sensitivity to rules in my favor by telling him 4-year-olds aren't allowed to suck their thumb anymore... it worked in 2 days! But since he had a sore spot on one thumb from the years of sucking, after he stopped, he started rubbing the spot over and over until it became more sore.

 

At 3.5 he had a brief period where he wouldn't step on cracks (my brother did this as a kid too!). But this too passed quickly... my thoughts at the time were that we would one day be dealing with some minor anxiety and even OCD issues (given the cracks issue, wanting perfectionism in his drawings)... but honestly, I thought I'd be dealing with it at age 12, 15, 20, etc... more classic ages for OCD to hit. I had some minor OCD tendencies in high school; they were present but not debilitating... and I figured I'll just help Jack deal with that when the time came.

 

At age 4, he got hit with strep, swine flu, and strep within a month and a half period (in the Fall). By March, my DH noticed a strange symptom appear... palilalia (whispering his words right after he said them aloud)... just like the little boy on THe Middle. That was the symptom that got our full attention...in what then seemed like overnight... but was probably over several weeks... a few more classic OCD and tics started all at once. He had the palilalia, he wanted to count going up the stairs and start over if it wasn't right, he wanted to kiss me 100 times before bed, he started the business with not stepping on cracks again, he starting sucking furiously on his collars, zippers, and shirt sleeves (previously just did that a little); He couldn't stop itching his nose (a tic), and he developed a cough tic (we ruled out an asthma cough with his pulmonologist- even she said this was a tic); he also asked if he could touch my watch with his other hand b/c he had apparently touched it with one hand and wanted the symmetry (I thought, oh no... I had a symmetry compulsion in high school!); what also alarmed me is that he started to have very jerky, hyperactive movements, especially at night... he couldn't sit still to listen to a story... he was jerking all over the place; sometimes with eyes rolling in his head and grimacing. Oh- and he LOST complete ability to draw pictures... he literally went from being a really good, detailed artist for a 4.5 year old (I mean, he's not Picasso..!) to drawing stick figures and scribbling odd shapes... he was aware that he suddenly couldn't draw and that was sad. Finally, he also starting wetting the bed after being recently trained at night... he has had urinary frequency for years... which were probably early Pandas symptoms. Oh- also started with these "super silly" behaviors- saying nonsense words over and over and louder and louder; repeating words like butt and penis; also, getting attached to new stuffed animals and a little more clingy to me when saying goodbye in the morning (e.g. needing to give multiple hugs and kisses (and of course, he wanted to give just one more than Charlie or the last one!).

 

When we noticed that all of these symptoms started to come together at 4.5 (after that round of 2 strep episodes and swine flu), I started researching early-onset OCD/tics because I felt that even with his genetic predisposition, it seemed too early at 4 and a half to be dealing with this. Learned very quickly from reading the Pandasnetwork website, Saving Sammy, and this forum what I was probably dealing with. I took him to his ped. that weekend, and sure enough, he had strep (titers are always low). I got to Dr. T in NJ quickly and found that he also had high mycoplasma numbers.

 

Some other younger behaviors included: asking a million why questions (but my husband and I loved his curiosity and always answer... so even though there's probably a compulsive element to it, he's a very smart kid because I always answer the questions!

 

I can deal with his temperment (in fact, I rather like having a funny, sensitive, slightly quirky kid... the things that make me the most sad are the wild, jerky movements and watching his eyes roll, and limbs move of their own accord... someone else said it well.. it's like a weird energy that somehow seems wrong.

 

I use a lot of ERP with him... e.g. when he wants to count something, I'll say something like... "hey we can't waste our time with that...we need more time for fun, for a story, etc. I will then prevent him from counting something over... I'll make him step on cracks... but done in a humorous way.

 

After having several exacerbations (by which I mean a return to jerky movements/tics, not stepping on cracks, and more sensitive than usual), then I've tested for strep (he usually has it, and we've treated with abx or only twice we tried steroids (one 5 day burst, one month long taper)... so clear that the steroids worked. He does better on azith. than augmentin... actually seems worse with augmentin.

 

Here is is now... on 2 weeks of azith... started to get better... and I am almost positive I have strep right now (he's backsliding...). I'll be going to the doc tomorrow for a strep test... although I could just get called in an abx, I feel like I want to know as much about whether I actually have it or not... more diagnostic and teaching my doctors that I'm not crazy!

 

Well, hope that helped... and I'd welcome any thoughts if others were in similar positions!

 

Sometimes, it seems that despite all of the symptoms... e.g. bedwetting, deterioration of drawing skills (surprisingly, he can still write letters... but they are sloppier than his younger brother...the occasional jerky behavior, etc., it still seems to be too mild to go for IVIG or something stronger than abx and very occasional steroids (only if absolutely needed). He has friends, does great in Kindergarten, is loving at home... it just scares me that so many people seem to have similar histories... and then the big episode hit in grade school (e.g. school refusal, etc.)... I also wonder like many other parents about whether we should be hitting this harder while he's still young... as compared to waiting for something big to occur. My husband and I both work... I don't know how we would ever do home schooling if that were necessary. God bless to all the parents who do whatever it takes to get answers and solutions.

 

Take care,

Franie

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My son was 19 months old at onset and 26 months old at dx. The reason there was a delay in dx is because we thought many of the things he was going through were just a phase - the "terrible twos", etc... He just turned 3 at the end of October and we've been doing abx since January. We're at about 85% - but the last 15% of recovery is proving to be our most difficult!!

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Just wondering how many on the forum have had their child diagnosed early, like 4/5? And what the treatment and results have been? So many here, seem older.

 

DS6: early onset (20 months), diagnosed at age of 4, complete resolution of pandas symptoms at age of 5. Required one low-dose IVIG.

 

DS2: early onset (15 months, maybe even at infancy), diagnosed at age of 2, complete resolution of symptoms at age of 2.5. Required a 20-day steroid taper.

 

both maintained on OLE, LDN, Spironolactone.

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Two brothers, both immune deficient and PANDAS. One was diagnosed with both immune deficiency and PANDAS, and treated with monthly IVIG and abx, starting at age 3. The other was diagnosed with PANDAS at age 4.5 and treated with courses of abx (not prophylactic) but was not diagnosed with immune deficiency until age 6, at which time he also started treatment with monthly IVIG and prophylactic abx. Son treated since age 3 has had complete remission of PANDAS symptoms with no blips that I can recall. Other son had complete remission of OCD with initial antibiotic treatment, then resolution of all other symptoms with IVIG treatment, but still has occasional short and very mild blips of eye tics and crabbiness with tooth loss or infection. Both are 8 months into treatment now.

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Darlene, sorry this will be long...

 

To answer your question: Jack was a somewhat colicky baby (not the classic screaming 3 plus hours per day)... but just fussy enough... we used to let him sleep in his car seat overnight because it was the only way he'd sleep contentedly... I used to worry about his neck/head but our ped. said we weren't the first to do this and we wouldn't be the last! He wouldn't take a pacifier and I used to have to let him suck my little pinky for what seemed like hours to soothe him. He had a lot of early ear infections, bronchiolitis, and ultimately asthma (which he still has).

 

We had our second boy when he was only 13 months old... and from early on, you could see they had very different temperments... Jack is more like me and my family (neurotic!!)... and his brother Charlie is like his father (easy going and laid back)... interestingly, they BOTH get a ton of colds, infections, etc. Charlie has had two ear tube surgeries and an adenoidectomy with the second; after about 12-15 months, the tubes start to come out, and he starts getting ear infections again. His just stopped functioning and he's had three ear infections already... so he'll likely be getting his third round of ear tubes and I might as well get his tonsils out... since he's had strep almost every time Jack has... Jack will also be getting his tonsils/adenoids out. But... whereas they both get a ton on infections... only Jack has PANDAS (and it seems that he just has the genetic susceptibility that his brother doesn't.

 

All of these years (well, he's only 5 and a half!), my husband and I just figured Jack had a more sensitive temperment and chalked up a lot of behaviors to that...e.g. at 1-2, he was just a fussier baby (no major tantrums... just more easily startled, more easily annoyed, less willing to share than his younger brother, more frustrated when something didn't go his way). Oh- and a pickier eater!

 

At 3, we noticed more of the same and by 3.5 he had some more major anger issues... e.g. spitting and some mild hitting when he was upset or told No to something. He would also growl when angry (and although fussy... he wasn't an angry kid... so we chalked it up to just a phase... I think now it was some Pandas episodes b/c it really came and went episodically. He is competetive and rigid (likes to follow the rules). At around 3- 3.5, I also noticed that he would throw a drawing away if there was one thing he made a "mistake" on... he couldn't just continue to draw like his brother... he had to completely start over. He was a thumb sucker until age 4 (and don't laugh but I actually used the sensitivity to rules in my favor by telling him 4-year-olds aren't allowed to suck their thumb anymore... it worked in 2 days! But since he had a sore spot on one thumb from the years of sucking, after he stopped, he started rubbing the spot over and over until it became more sore.

 

At 3.5 he had a brief period where he wouldn't step on cracks (my brother did this as a kid too!). But this too passed quickly... my thoughts at the time were that we would one day be dealing with some minor anxiety and even OCD issues (given the cracks issue, wanting perfectionism in his drawings)... but honestly, I thought I'd be dealing with it at age 12, 15, 20, etc... more classic ages for OCD to hit. I had some minor OCD tendencies in high school; they were present but not debilitating... and I figured I'll just help Jack deal with that when the time came.

 

At age 4, he got hit with strep, swine flu, and strep within a month and a half period (in the Fall). By March, my DH noticed a strange symptom appear... palilalia (whispering his words right after he said them aloud)... just like the little boy on THe Middle. That was the symptom that got our full attention...in what then seemed like overnight... but was probably over several weeks... a few more classic OCD and tics started all at once. He had the palilalia, he wanted to count going up the stairs and start over if it wasn't right, he wanted to kiss me 100 times before bed, he started the business with not stepping on cracks again, he starting sucking furiously on his collars, zippers, and shirt sleeves (previously just did that a little); He couldn't stop itching his nose (a tic), and he developed a cough tic (we ruled out an asthma cough with his pulmonologist- even she said this was a tic); he also asked if he could touch my watch with his other hand b/c he had apparently touched it with one hand and wanted the symmetry (I thought, oh no... I had a symmetry compulsion in high school!); what also alarmed me is that he started to have very jerky, hyperactive movements, especially at night... he couldn't sit still to listen to a story... he was jerking all over the place; sometimes with eyes rolling in his head and grimacing. Oh- and he LOST complete ability to draw pictures... he literally went from being a really good, detailed artist for a 4.5 year old (I mean, he's not Picasso..!) to drawing stick figures and scribbling odd shapes... he was aware that he suddenly couldn't draw and that was sad. Finally, he also starting wetting the bed after being recently trained at night... he has had urinary frequency for years... which were probably early Pandas symptoms. Oh- also started with these "super silly" behaviors- saying nonsense words over and over and louder and louder; repeating words like butt and penis; also, getting attached to new stuffed animals and a little more clingy to me when saying goodbye in the morning (e.g. needing to give multiple hugs and kisses (and of course, he wanted to give just one more than Charlie or the last one!).

 

When we noticed that all of these symptoms started to come together at 4.5 (after that round of 2 strep episodes and swine flu), I started researching early-onset OCD/tics because I felt that even with his genetic predisposition, it seemed too early at 4 and a half to be dealing with this. Learned very quickly from reading the Pandasnetwork website, Saving Sammy, and this forum what I was probably dealing with. I took him to his ped. that weekend, and sure enough, he had strep (titers are always low). I got to Dr. T in NJ quickly and found that he also had high mycoplasma numbers.

 

Some other younger behaviors included: asking a million why questions (but my husband and I loved his curiosity and always answer... so even though there's probably a compulsive element to it, he's a very smart kid because I always answer the questions!

 

I can deal with his temperment (in fact, I rather like having a funny, sensitive, slightly quirky kid... the things that make me the most sad are the wild, jerky movements and watching his eyes roll, and limbs move of their own accord... someone else said it well.. it's like a weird energy that somehow seems wrong.

 

I use a lot of ERP with him... e.g. when he wants to count something, I'll say something like... "hey we can't waste our time with that...we need more time for fun, for a story, etc. I will then prevent him from counting something over... I'll make him step on cracks... but done in a humorous way.

 

After having several exacerbations (by which I mean a return to jerky movements/tics, not stepping on cracks, and more sensitive than usual), then I've tested for strep (he usually has it, and we've treated with abx or only twice we tried steroids (one 5 day burst, one month long taper)... so clear that the steroids worked. He does better on azith. than augmentin... actually seems worse with augmentin.

 

Here is is now... on 2 weeks of azith... started to get better... and I am almost positive I have strep right now (he's backsliding...). I'll be going to the doc tomorrow for a strep test... although I could just get called in an abx, I feel like I want to know as much about whether I actually have it or not... more diagnostic and teaching my doctors that I'm not crazy!

 

Well, hope that helped... and I'd welcome any thoughts if others were in similar positions!

 

Sometimes, it seems that despite all of the symptoms... e.g. bedwetting, deterioration of drawing skills (surprisingly, he can still write letters... but they are sloppier than his younger brother...the occasional jerky behavior, etc., it still seems to be too mild to go for IVIG or something stronger than abx and very occasional steroids (only if absolutely needed). He has friends, does great in Kindergarten, is loving at home... it just scares me that so many people seem to have similar histories... and then the big episode hit in grade school (e.g. school refusal, etc.)... I also wonder like many other parents about whether we should be hitting this harder while he's still young... as compared to waiting for something big to occur. My husband and I both work... I don't know how we would ever do home schooling if that were necessary. God bless to all the parents who do whatever it takes to get answers and solutions.

 

Take care,

Franie

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palilalia (whispering his words right after he said them aloud)... just like the little boy on THe Middle. That was the symptom that got our full attention...in what then seemed like overnight... but was probably over several weeks... a few more classic OCD and tics started all at once

 

 

Franie, my 5 yo does this. I think it has been around about 6 mo or so. My son also has frequent urination for over a month now and very dark circles under his eyes. Urine and urologist work up normal. He is virtually impossible to get a throat culture from so we did strep titers which were negative and myco p negative. And my son did much worse with the urination while on the augmentin too! Why is that? He had two weeks of it in case we missed strep (sibling is pitand with strep and myco p)and he also had 2 weeks of zith to cover possible myco p exposure and he had no positive or negative changes while on it. He has separation anxiety that is new and these dark circles under his eyes. I'm not sure what to do with all this!!!

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Darlene, sorry this will be long...

 

To answer your question: Jack was a somewhat colicky baby (not the classic screaming 3 plus hours per day)... but just fussy enough... we used to let him sleep in his car seat overnight because it was the only way he'd sleep contentedly... I used to worry about his neck/head but our ped. said we weren't the first to do this and we wouldn't be the last! He wouldn't take a pacifier and I used to have to let him suck my little pinky for what seemed like hours to soothe him. He had a lot of early ear infections, bronchiolitis, and ultimately asthma (which he still has).

 

We had our second boy when he was only 13 months old... and from early on, you could see they had very different temperments... Jack is more like me and my family (neurotic!!)... and his brother Charlie is like his father (easy going and laid back)... interestingly, they BOTH get a ton of colds, infections, etc. Charlie has had two ear tube surgeries and an adenoidectomy with the second; after about 12-15 months, the tubes start to come out, and he starts getting ear infections again. His just stopped functioning and he's had three ear infections already... so he'll likely be getting his third round of ear tubes and I might as well get his tonsils out... since he's had strep almost every time Jack has... Jack will also be getting his tonsils/adenoids out. But... whereas they both get a ton on infections... only Jack has PANDAS (and it seems that he just has the genetic susceptibility that his brother doesn't.

 

All of these years (well, he's only 5 and a half!), my husband and I just figured Jack had a more sensitive temperment and chalked up a lot of behaviors to that...e.g. at 1-2, he was just a fussier baby (no major tantrums... just more easily startled, more easily annoyed, less willing to share than his younger brother, more frustrated when something didn't go his way). Oh- and a pickier eater!

 

At 3, we noticed more of the same and by 3.5 he had some more major anger issues... e.g. spitting and some mild hitting when he was upset or told No to something. He would also growl when angry (and although fussy... he wasn't an angry kid... so we chalked it up to just a phase... I think now it was some Pandas episodes b/c it really came and went episodically. He is competetive and rigid (likes to follow the rules). At around 3- 3.5, I also noticed that he would throw a drawing away if there was one thing he made a "mistake" on... he couldn't just continue to draw like his brother... he had to completely start over. He was a thumb sucker until age 4 (and don't laugh but I actually used the sensitivity to rules in my favor by telling him 4-year-olds aren't allowed to suck their thumb anymore... it worked in 2 days! But since he had a sore spot on one thumb from the years of sucking, after he stopped, he started rubbing the spot over and over until it became more sore.

 

At 3.5 he had a brief period where he wouldn't step on cracks (my brother did this as a kid too!). But this too passed quickly... my thoughts at the time were that we would one day be dealing with some minor anxiety and even OCD issues (given the cracks issue, wanting perfectionism in his drawings)... but honestly, I thought I'd be dealing with it at age 12, 15, 20, etc... more classic ages for OCD to hit. I had some minor OCD tendencies in high school; they were present but not debilitating... and I figured I'll just help Jack deal with that when the time came.

 

At age 4, he got hit with strep, swine flu, and strep within a month and a half period (in the Fall). By March, my DH noticed a strange symptom appear... palilalia (whispering his words right after he said them aloud)... just like the little boy on THe Middle. That was the symptom that got our full attention...in what then seemed like overnight... but was probably over several weeks... a few more classic OCD and tics started all at once. He had the palilalia, he wanted to count going up the stairs and start over if it wasn't right, he wanted to kiss me 100 times before bed, he started the business with not stepping on cracks again, he starting sucking furiously on his collars, zippers, and shirt sleeves (previously just did that a little); He couldn't stop itching his nose (a tic), and he developed a cough tic (we ruled out an asthma cough with his pulmonologist- even she said this was a tic); he also asked if he could touch my watch with his other hand b/c he had apparently touched it with one hand and wanted the symmetry (I thought, oh no... I had a symmetry compulsion in high school!); what also alarmed me is that he started to have very jerky, hyperactive movements, especially at night... he couldn't sit still to listen to a story... he was jerking all over the place; sometimes with eyes rolling in his head and grimacing. Oh- and he LOST complete ability to draw pictures... he literally went from being a really good, detailed artist for a 4.5 year old (I mean, he's not Picasso..!) to drawing stick figures and scribbling odd shapes... he was aware that he suddenly couldn't draw and that was sad. Finally, he also starting wetting the bed after being recently trained at night... he has had urinary frequency for years... which were probably early Pandas symptoms. Oh- also started with these "super silly" behaviors- saying nonsense words over and over and louder and louder; repeating words like butt and penis; also, getting attached to new stuffed animals and a little more clingy to me when saying goodbye in the morning (e.g. needing to give multiple hugs and kisses (and of course, he wanted to give just one more than Charlie or the last one!).

 

When we noticed that all of these symptoms started to come together at 4.5 (after that round of 2 strep episodes and swine flu), I started researching early-onset OCD/tics because I felt that even with his genetic predisposition, it seemed too early at 4 and a half to be dealing with this. Learned very quickly from reading the Pandasnetwork website, Saving Sammy, and this forum what I was probably dealing with. I took him to his ped. that weekend, and sure enough, he had strep (titers are always low). I got to Dr. T in NJ quickly and found that he also had high mycoplasma numbers.

 

Some other younger behaviors included: asking a million why questions (but my husband and I loved his curiosity and always answer... so even though there's probably a compulsive element to it, he's a very smart kid because I always answer the questions!

 

I can deal with his temperment (in fact, I rather like having a funny, sensitive, slightly quirky kid... the things that make me the most sad are the wild, jerky movements and watching his eyes roll, and limbs move of their own accord... someone else said it well.. it's like a weird energy that somehow seems wrong.

 

I use a lot of ERP with him... e.g. when he wants to count something, I'll say something like... "hey we can't waste our time with that...we need more time for fun, for a story, etc. I will then prevent him from counting something over... I'll make him step on cracks... but done in a humorous way.

 

After having several exacerbations (by which I mean a return to jerky movements/tics, not stepping on cracks, and more sensitive than usual), then I've tested for strep (he usually has it, and we've treated with abx or only twice we tried steroids (one 5 day burst, one month long taper)... so clear that the steroids worked. He does better on azith. than augmentin... actually seems worse with augmentin.

 

Here is is now... on 2 weeks of azith... started to get better... and I am almost positive I have strep right now (he's backsliding...). I'll be going to the doc tomorrow for a strep test... although I could just get called in an abx, I feel like I want to know as much about whether I actually have it or not... more diagnostic and teaching my doctors that I'm not crazy!

 

Well, hope that helped... and I'd welcome any thoughts if others were in similar positions!

 

Sometimes, it seems that despite all of the symptoms... e.g. bedwetting, deterioration of drawing skills (surprisingly, he can still write letters... but they are sloppier than his younger brother...the occasional jerky behavior, etc., it still seems to be too mild to go for IVIG or something stronger than abx and very occasional steroids (only if absolutely needed). He has friends, does great in Kindergarten, is loving at home... it just scares me that so many people seem to have similar histories... and then the big episode hit in grade school (e.g. school refusal, etc.)... I also wonder like many other parents about whether we should be hitting this harder while he's still young... as compared to waiting for something big to occur. My husband and I both work... I don't know how we would ever do home schooling if that were necessary. God bless to all the parents who do whatever it takes to get answers and solutions.

 

Take care,

Franie

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Darlene, sorry this will be long...

 

To answer your question: Jack was a somewhat colicky baby (not the classic screaming 3 plus hours per day)... but just fussy enough... we used to let him sleep in his car seat overnight because it was the only way he'd sleep contentedly... I used to worry about his neck/head but our ped. said we weren't the first to do this and we wouldn't be the last! He wouldn't take a pacifier and I used to have to let him suck my little pinky for what seemed like hours to soothe him. He had a lot of early ear infections, bronchiolitis, and ultimately asthma (which he still has).

 

We had our second boy when he was only 13 months old... and from early on, you could see they had very different temperments... Jack is more like me and my family (neurotic!!)... and his brother Charlie is like his father (easy going and laid back)... interestingly, they BOTH get a ton of colds, infections, etc. Charlie has had two ear tube surgeries and an adenoidectomy with the second; after about 12-15 months, the tubes start to come out, and he starts getting ear infections again. His just stopped functioning and he's had three ear infections already... so he'll likely be getting his third round of ear tubes and I might as well get his tonsils out... since he's had strep almost every time Jack has... Jack will also be getting his tonsils/adenoids out. But... whereas they both get a ton on infections... only Jack has PANDAS (and it seems that he just has the genetic susceptibility that his brother doesn't.

 

All of these years (well, he's only 5 and a half!), my husband and I just figured Jack had a more sensitive temperment and chalked up a lot of behaviors to that...e.g. at 1-2, he was just a fussier baby (no major tantrums... just more easily startled, more easily annoyed, less willing to share than his younger brother, more frustrated when something didn't go his way). Oh- and a pickier eater!

 

At 3, we noticed more of the same and by 3.5 he had some more major anger issues... e.g. spitting and some mild hitting when he was upset or told No to something. He would also growl when angry (and although fussy... he wasn't an angry kid... so we chalked it up to just a phase... I think now it was some Pandas episodes b/c it really came and went episodically. He is competetive and rigid (likes to follow the rules). At around 3- 3.5, I also noticed that he would throw a drawing away if there was one thing he made a "mistake" on... he couldn't just continue to draw like his brother... he had to completely start over. He was a thumb sucker until age 4 (and don't laugh but I actually used the sensitivity to rules in my favor by telling him 4-year-olds aren't allowed to suck their thumb anymore... it worked in 2 days! But since he had a sore spot on one thumb from the years of sucking, after he stopped, he started rubbing the spot over and over until it became more sore.

 

At 3.5 he had a brief period where he wouldn't step on cracks (my brother did this as a kid too!). But this too passed quickly... my thoughts at the time were that we would one day be dealing with some minor anxiety and even OCD issues (given the cracks issue, wanting perfectionism in his drawings)... but honestly, I thought I'd be dealing with it at age 12, 15, 20, etc... more classic ages for OCD to hit. I had some minor OCD tendencies in high school; they were present but not debilitating... and I figured I'll just help Jack deal with that when the time came.

 

At age 4, he got hit with strep, swine flu, and strep within a month and a half period (in the Fall). By March, my DH noticed a strange symptom appear... palilalia (whispering his words right after he said them aloud)... just like the little boy on THe Middle. That was the symptom that got our full attention...in what then seemed like overnight... but was probably over several weeks... a few more classic OCD and tics started all at once. He had the palilalia, he wanted to count going up the stairs and start over if it wasn't right, he wanted to kiss me 100 times before bed, he started the business with not stepping on cracks again, he starting sucking furiously on his collars, zippers, and shirt sleeves (previously just did that a little); He couldn't stop itching his nose (a tic), and he developed a cough tic (we ruled out an asthma cough with his pulmonologist- even she said this was a tic); he also asked if he could touch my watch with his other hand b/c he had apparently touched it with one hand and wanted the symmetry (I thought, oh no... I had a symmetry compulsion in high school!); what also alarmed me is that he started to have very jerky, hyperactive movements, especially at night... he couldn't sit still to listen to a story... he was jerking all over the place; sometimes with eyes rolling in his head and grimacing. Oh- and he LOST complete ability to draw pictures... he literally went from being a really good, detailed artist for a 4.5 year old (I mean, he's not Picasso..!) to drawing stick figures and scribbling odd shapes... he was aware that he suddenly couldn't draw and that was sad. Finally, he also starting wetting the bed after being recently trained at night... he has had urinary frequency for years... which were probably early Pandas symptoms. Oh- also started with these "super silly" behaviors- saying nonsense words over and over and louder and louder; repeating words like butt and penis; also, getting attached to new stuffed animals and a little more clingy to me when saying goodbye in the morning (e.g. needing to give multiple hugs and kisses (and of course, he wanted to give just one more than Charlie or the last one!).

 

When we noticed that all of these symptoms started to come together at 4.5 (after that round of 2 strep episodes and swine flu), I started researching early-onset OCD/tics because I felt that even with his genetic predisposition, it seemed too early at 4 and a half to be dealing with this. Learned very quickly from reading the Pandasnetwork website, Saving Sammy, and this forum what I was probably dealing with. I took him to his ped. that weekend, and sure enough, he had strep (titers are always low). I got to Dr. T in NJ quickly and found that he also had high mycoplasma numbers.

 

Some other younger behaviors included: asking a million why questions (but my husband and I loved his curiosity and always answer... so even though there's probably a compulsive element to it, he's a very smart kid because I always answer the questions!

 

I can deal with his temperment (in fact, I rather like having a funny, sensitive, slightly quirky kid... the things that make me the most sad are the wild, jerky movements and watching his eyes roll, and limbs move of their own accord... someone else said it well.. it's like a weird energy that somehow seems wrong.

 

I use a lot of ERP with him... e.g. when he wants to count something, I'll say something like... "hey we can't waste our time with that...we need more time for fun, for a story, etc. I will then prevent him from counting something over... I'll make him step on cracks... but done in a humorous way.

 

After having several exacerbations (by which I mean a return to jerky movements/tics, not stepping on cracks, and more sensitive than usual), then I've tested for strep (he usually has it, and we've treated with abx or only twice we tried steroids (one 5 day burst, one month long taper)... so clear that the steroids worked. He does better on azith. than augmentin... actually seems worse with augmentin.

 

Here is is now... on 2 weeks of azith... started to get better... and I am almost positive I have strep right now (he's backsliding...). I'll be going to the doc tomorrow for a strep test... although I could just get called in an abx, I feel like I want to know as much about whether I actually have it or not... more diagnostic and teaching my doctors that I'm not crazy!

 

Well, hope that helped... and I'd welcome any thoughts if others were in similar positions!

 

Sometimes, it seems that despite all of the symptoms... e.g. bedwetting, deterioration of drawing skills (surprisingly, he can still write letters... but they are sloppier than his younger brother...the occasional jerky behavior, etc., it still seems to be too mild to go for IVIG or something stronger than abx and very occasional steroids (only if absolutely needed). He has friends, does great in Kindergarten, is loving at home... it just scares me that so many people seem to have similar histories... and then the big episode hit in grade school (e.g. school refusal, etc.)... I also wonder like many other parents about whether we should be hitting this harder while he's still young... as compared to waiting for something big to occur. My husband and I both work... I don't know how we would ever do home schooling if that were necessary. God bless to all the parents who do whatever it takes to get answers and solutions.

 

Take care,

Franie

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  • 4 weeks later...

Darlene, sorry this will be long...

 

To answer your question: Jack was a somewhat colicky baby (not the classic screaming 3 plus hours per day)... but just fussy enough... we used to let him sleep in his car seat overnight because it was the only way he'd sleep contentedly... I used to worry about his neck/head but our ped. said we weren't the first to do this and we wouldn't be the last! He wouldn't take a pacifier and I used to have to let him suck my little pinky for what seemed like hours to soothe him. He had a lot of early ear infections, bronchiolitis, and ultimately asthma (which he still has).

 

We had our second boy when he was only 13 months old... and from early on, you could see they had very different temperments... Jack is more like me and my family (neurotic!!)... and his brother Charlie is like his father (easy going and laid back)... interestingly, they BOTH get a ton of colds, infections, etc. Charlie has had two ear tube surgeries and an adenoidectomy with the second; after about 12-15 months, the tubes start to come out, and he starts getting ear infections again. His just stopped functioning and he's had three ear infections already... so he'll likely be getting his third round of ear tubes and I might as well get his tonsils out... since he's had strep almost every time Jack has... Jack will also be getting his tonsils/adenoids out. But... whereas they both get a ton on infections... only Jack has PANDAS (and it seems that he just has the genetic susceptibility that his brother doesn't.

 

All of these years (well, he's only 5 and a half!), my husband and I just figured Jack had a more sensitive temperment and chalked up a lot of behaviors to that...e.g. at 1-2, he was just a fussier baby (no major tantrums... just more easily startled, more easily annoyed, less willing to share than his younger brother, more frustrated when something didn't go his way). Oh- and a pickier eater!

 

At 3, we noticed more of the same and by 3.5 he had some more major anger issues... e.g. spitting and some mild hitting when he was upset or told No to something. He would also growl when angry (and although fussy... he wasn't an angry kid... so we chalked it up to just a phase... I think now it was some Pandas episodes b/c it really came and went episodically. He is competetive and rigid (likes to follow the rules). At around 3- 3.5, I also noticed that he would throw a drawing away if there was one thing he made a "mistake" on... he couldn't just continue to draw like his brother... he had to completely start over. He was a thumb sucker until age 4 (and don't laugh but I actually used the sensitivity to rules in my favor by telling him 4-year-olds aren't allowed to suck their thumb anymore... it worked in 2 days! But since he had a sore spot on one thumb from the years of sucking, after he stopped, he started rubbing the spot over and over until it became more sore.

 

At 3.5 he had a brief period where he wouldn't step on cracks (my brother did this as a kid too!). But this too passed quickly... my thoughts at the time were that we would one day be dealing with some minor anxiety and even OCD issues (given the cracks issue, wanting perfectionism in his drawings)... but honestly, I thought I'd be dealing with it at age 12, 15, 20, etc... more classic ages for OCD to hit. I had some minor OCD tendencies in high school; they were present but not debilitating... and I figured I'll just help Jack deal with that when the time came.

 

At age 4, he got hit with strep, swine flu, and strep within a month and a half period (in the Fall). By March, my DH noticed a strange symptom appear... palilalia (whispering his words right after he said them aloud)... just like the little boy on THe Middle. That was the symptom that got our full attention...in what then seemed like overnight... but was probably over several weeks... a few more classic OCD and tics started all at once. He had the palilalia, he wanted to count going up the stairs and start over if it wasn't right, he wanted to kiss me 100 times before bed, he started the business with not stepping on cracks again, he starting sucking furiously on his collars, zippers, and shirt sleeves (previously just did that a little); He couldn't stop itching his nose (a tic), and he developed a cough tic (we ruled out an asthma cough with his pulmonologist- even she said this was a tic); he also asked if he could touch my watch with his other hand b/c he had apparently touched it with one hand and wanted the symmetry (I thought, oh no... I had a symmetry compulsion in high school!); what also alarmed me is that he started to have very jerky, hyperactive movements, especially at night... he couldn't sit still to listen to a story... he was jerking all over the place; sometimes with eyes rolling in his head and grimacing. Oh- and he LOST complete ability to draw pictures... he literally went from being a really good, detailed artist for a 4.5 year old (I mean, he's not Picasso..!) to drawing stick figures and scribbling odd shapes... he was aware that he suddenly couldn't draw and that was sad. Finally, he also starting wetting the bed after being recently trained at night... he has had urinary frequency for years... which were probably early Pandas symptoms. Oh- also started with these "super silly" behaviors- saying nonsense words over and over and louder and louder; repeating words like butt and penis; also, getting attached to new stuffed animals and a little more clingy to me when saying goodbye in the morning (e.g. needing to give multiple hugs and kisses (and of course, he wanted to give just one more than Charlie or the last one!).

 

When we noticed that all of these symptoms started to come together at 4.5 (after that round of 2 strep episodes and swine flu), I started researching early-onset OCD/tics because I felt that even with his genetic predisposition, it seemed too early at 4 and a half to be dealing with this. Learned very quickly from reading the Pandasnetwork website, Saving Sammy, and this forum what I was probably dealing with. I took him to his ped. that weekend, and sure enough, he had strep (titers are always low). I got to Dr. T in NJ quickly and found that he also had high mycoplasma numbers.

 

Some other younger behaviors included: asking a million why questions (but my husband and I loved his curiosity and always answer... so even though there's probably a compulsive element to it, he's a very smart kid because I always answer the questions!

 

I can deal with his temperment (in fact, I rather like having a funny, sensitive, slightly quirky kid... the things that make me the most sad are the wild, jerky movements and watching his eyes roll, and limbs move of their own accord... someone else said it well.. it's like a weird energy that somehow seems wrong.

 

I use a lot of ERP with him... e.g. when he wants to count something, I'll say something like... "hey we can't waste our time with that...we need more time for fun, for a story, etc. I will then prevent him from counting something over... I'll make him step on cracks... but done in a humorous way.

 

After having several exacerbations (by which I mean a return to jerky movements/tics, not stepping on cracks, and more sensitive than usual), then I've tested for strep (he usually has it, and we've treated with abx or only twice we tried steroids (one 5 day burst, one month long taper)... so clear that the steroids worked. He does better on azith. than augmentin... actually seems worse with augmentin.

 

Here is is now... on 2 weeks of azith... started to get better... and I am almost positive I have strep right now (he's backsliding...). I'll be going to the doc tomorrow for a strep test... although I could just get called in an abx, I feel like I want to know as much about whether I actually have it or not... more diagnostic and teaching my doctors that I'm not crazy!

 

Well, hope that helped... and I'd welcome any thoughts if others were in similar positions!

 

Sometimes, it seems that despite all of the symptoms... e.g. bedwetting, deterioration of drawing skills (surprisingly, he can still write letters... but they are sloppier than his younger brother...the occasional jerky behavior, etc., it still seems to be too mild to go for IVIG or something stronger than abx and very occasional steroids (only if absolutely needed). He has friends, does great in Kindergarten, is loving at home... it just scares me that so many people seem to have similar histories... and then the big episode hit in grade school (e.g. school refusal, etc.)... I also wonder like many other parents about whether we should be hitting this harder while he's still young... as compared to waiting for something big to occur. My husband and I both work... I don't know how we would ever do home schooling if that were necessary. God bless to all the parents who do whatever it takes to get answers and solutions.

 

Take care,

Franie

 

Franie,

 

Just finally responding! And seeing I overlooked this in my own brain fog! Hope you get this. Still not sure how the board works and if you automatically see a reply? Anways, my child had the same jerky movements you were talking about. especially in his sleep. amazingly, it disappeared after being on the antibiotics. we're still in a wait and see...for test results and to see how the steroids help him. He is 4.5 as well. Hope all his going well. And sorry the late response!

 

adk mom.

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DS 5.5 at first exacerbation. 6.5 at diagnosis. Just turned 7. He went off daily abx a month ago and onto prophylactic 2x a week. He is sliding downhill slowly. Need to have a consult this week and see if we can do more frequent prophylactic abx or what we need to do. He was nearly 100% at the end of 60 days of biaxin.

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Hi

 

Our dd was 4 nearly 5 in 3/08 when she had her 1st recognised episode. She was dxd 4 weeks later. We now realise she had shown soft signs earlier. She has a classic PANDAS presentation - OCD, some tics, some choreiform movemements, sensory issues, lability, defiance etc etc. Sudden onsets and slow but full remissions (until this year when we are seeing some very low level issues remaining such as nighttime fears and late in the day anxiety).

 

Our ds was 7 months old when we believe he had his 1st episode at the same time as his sister's 1st recognised episode in 3/08. He was dxd at 26/27 months old. His symptoms are more nebulous. Disturbed sleep, seperation anxiety, sensory issues, stuttering, some OCD type behaviours, possible tics as shirt sucking etc can be tic-like I've been told, behaviour problems.. lots of stuff that could be put down to teribble 2s, 3s etc but just very extreme. He could have easily gone under the radar as a difficult child had his sister not been his canary. He also tanked with illness and then took weeks to remit.

 

Both kids came off proph abx this Sept following a very serious serum sickness that my dd had in response to Augmentin. She was ill for 3 weeks and at 1 point was hospitalised. It so freaked my dh that he insisted they both come off abx. I had been toying with the idea prior to this and so went with it. So far so good. Until then both our kids would react to illnesses in addition to strep. My dd was reacting to everything at that point.. even slight colds. My ds would react and take ages to remit to many but not all.

 

Both have had 4 colds and 1 stomach upset since Sept and even though I've seen signs of PANDAS in both.. increased anxiety for dd, increased hyperness/aggression for ds....both have gone back to baseline nicely as soon or even before their physical symptoms have disappeared.

 

Spotting PANDAS in young kids can be really difficult as so much can be called "normal" behaviour but if it feels wrong, then I've learnt to trust my gut.....

 

good luck....

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It was very blatant that something was very wrong w/ my DS. He woke up one morning tantruming and it went downhill from there. Severe separation anxiety, anger, irritibility, raging, ocd's, fears. He literally woke up one morning a different child. It wasn't something that just sort of gradually slipped up on us. Those were the intitial symptoms and they hit him like a Mack truck.

 

Cindy

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Yeh,our dd was like that.. she went to bed on the sunday night and woke a different child on the monday.

 

With our ds, as it started so early for him at 7 months old, it has been difficult to unravel what is his personality and what is PANDAS. Now that we aren't in almost permanent back to back exacerbatiosn for him, I can see the real 3 year old and can now spot what's him and what's disease.

 

Having 2 kids with this, I am realising just how different the presentations can be... I'm a firm believer that not only is PANDAS/PITAND/infection-driven-behavioural-and-neurological-changes (whatever we chose to call it) not rare but almost common.. not the norm obviously but I believe that so many kids go under the radar because their presentations are so much milder - maybe some behavioural stuff or a transient tic or two.

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What were the symptoms that made you suspect something was not right...and how did you find out about PANDAS?

For us it was biting. Prior to PANDAS, our son was very passive and easy going. He was the one who was always getting hit, bitten, kicked, etc at day care, and he wouldn't even retaliate. If a kid took the toy he was playing with, he would just go off and find a new toy - not even cry.

 

One day at day care, about 2 wks after an impetigo infection, he bit a kid for coming near him while he was eating - just like a dog. That started happening everytime he was eating. About a week after this - speration anxiety set in so severe he would cry for the full 8 hours while he was at day care. The violence got worse and worse as time went on (hitting, kicking, using toys/chairs as weapons).

 

Since his behavior was somewhat "age appropriate" we tried all sorts of common behavior techniques. Nothing worked. As he got worse and worse, we noticed tantrums over seemingly nothing, and dark circles under his eyes like he hadn't slept in days (eventhough he was still sleeping 12-13 hrs at night with a 2-4 hour nap in the afternoon.)

 

We exhausted all of the "age appropriate" excuses and techniques, and once the holidays passed (because that could also be a reason for his fatigue, behavior, etc... - can you see a pattern of excuse making here?) we took him into the Dr. to be looked at (upon the recommendation of our day care director who said quite bluntly "This is not your son - I've had your son since he was 12 weeks old, and this is just a different kid.")

 

Our pediatrician said we were presenting with ODD, OCD and ADHD symptoms. He could send us to a ped neurologist or psychiatrist, and they will likely medicate. He then explained PANDAS (an ironically, his nurse mentioned it to us before we even saw the Dr. when she was taking the history) He told us PANDAS was conttriversial and unknown, but he had treated a few cases, and we could try him on a 30 day trial of abx to "see what happens". If we don't see a change, we can go the psych route. At just over 2 yrs old, we opted for the trial abx (even though we thought our ped had lost his mind!!)

 

Once the Dr. suggested PANDAS, and explained to us what was happening, we recognized alot of his tantrums and violent outbursts related to the OCD. He has most of his OCD issues around food (no one touching, it being perfect on the plate, not "broken", etc...) and the first violent episodes ALL relvolved around mealtimes.

 

Within 10 days the violence was gone - I mean completely gone. After 2 weeks, the tantrums went from lasting hours on end until he finally just raged himself to sleep, to only lasting 2 hours or so (still sounds bad, but a SIGNIFICANT improvement from where we were.)

 

We were very lucky to have a great pediatrician, who kept awesome notes and records. When the behavior problems really started gearing up with my son, we would often email him, or ask him for suggestions when we were in the office for visits. He had kept notes on all of those discussions, so he had a record of what we were dealing with and how long. It also helped that the previous few visits with my son (even his 2yr ck up a couple of months prior) he was behaving oddly and erratically in the office that the nurse noted something was amiss.

 

Because he was so young when he was dx, we've had alot of people dismiss his issues as just his age, our parenting skills, etc... Even my parents were in that camp until he had a complete total freak out on them when I was out of town. My mom no longer doubts...

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