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Could it be? For my son - PANDAS?


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I will try and keep my stats short and brief and in bullet form so more succinct. Before doing that, I must say that in my desperate attempts to understand what is going on with my son I ran across an article online many months back about PANDAS and just could NOT believe the similarities with what he was going through - though in most cases not as severe. Then while watching Mystery Diagnosis and seeing Sammy's story a few weeks ago...my 16 year old daughter and I sat stone faced - jaws dropped - looking at one another in disbelief at home much it was like my son's experience (though, again, not near as dramatic).

 

My son is 7 years old.

 

He began getting "sick" when he was just over 1 year of age. I'll never forget snapping a pic of him at his first urgent care visit - at the time thinking it was kind of a "rite of passage".....never imagining what was down the road. At that time he had an ear infection that was so bad, before it was said and done he was on probably 2 or 3 oral antibiotics and when THAT didn't work - he had to have rocephin shots.

 

So much changed after that.....he began to have sensory integration issues (forget the name, but motion related).

 

He began to rage...and I thought, at the time, is was a reaction to antibiotics (I am very chemically sensitive). I really thought he had ODD. he would even get so upset he would hit his head on the refrigerator/wall.

 

As he got older and more verbal, he would ruminate how how something worked. This didn't happen often...but when it did, it was so sad because he wasn't just appearing to be naturally curious...but almost tortured by the need to understand.

 

He was sick a LOT from 2-6 with strep.

 

In the time period from ages 2-6 he developed an intense need to wash his hands. Fear of germs. He said he watched a show explain in detail how the germ went from an everyday item (say at the mall, or store) and travelled through the body, etc....this was on Syd The Science Kid.

 

He could not STAND to be kissed for the longest time and performed EVERY TIME what we thought was just a "silly" ritual - he would make a sound like a spray bottle and pretend to wipe off the kiss. He couldn't NOT do this. This resolved about 2 years ago.

 

He is a VERY anxious child. Very keenly aware of other people's emotions and a deep desire to make them feel better.

 

He had his tonsils and adenoids our 1 year ago and has not, to our knowlege, had a strep infection but at least twice has had an intense sore throat for which rapid tests came back negative.

 

My son's need to wash his hands waxes and wanes. And each time it "goes" we assume that his anxieties have improved and/or he has "outgrown" his ocd tendencies. "Tendencies"...we like to call them to avoid having to say OCD in a matter of fact kind of way. He has not been formally diagnosed, but does go on an as needed basis to his "worry tutor" (family counselor) to talk about his worries and fears.

 

His most recent expression of anxiety is his need to blow his hand - twice. He blows it right at the bottom of the thumb and forefinger. He says he isn't trying to blow off the germs - which I initially suspected. He says he needs to do it "even steven" number of times. He also flips one of his hands (sometimes both, but usually just one) in a way that is hard to describe...sort of like he is trying to pop his knuckles by snapping his hand in a downward motion if that makes sense. Over the summer his anxieties got so much better...but school is back in session (2nd grade) and that is particularly stressful for him and these "tics" have resumed and multiplied. Math is very much a struggle subject for him. And he still wets the bed at night and urinates FREQUENTLY during the day. He has been tested for any "mechanical" reason for his enuresis - but all the "plumbing" is in working order. I point that out because I think I read that children with PANDAS will have spells of night time wetting...my son, however, has only had a handful of dry nights in his whole life - regardless of anxieties and known strep infections.

 

The only "symptom" that I have read about that he doesn't have (to my knowlege, unless it is so suttle I can't detect it) is the choreaform movements.

 

I really appreciate the opportunity to purge myself of this information and look to those of you who have been walking this walk for some time now and can offer advice and thoughts. I have an appointment with a pediatric neurologist on Tuesday - but I plan to call the office tomorrow morning and specifically ask if the dr there BELIEVES in PANDAS (not just "treats" it as I have heard sometimes docs say yes just so they can dis spell the "myth" of PANDAS to people).

 

Can anyone tell me their first impression here? Advice? Emotional support. I actually WANT this to be what is going on with him - at least it would be an answer. I know everyone says this....but my son is so uniquely wonderful and precious (as they all are) and it breaks my HEART to see him so filled with fear. I'm suppose to be able to help him....but so far I've only gotten really good at putting on bandaids.

 

Many thanks...Gabi

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I will try and keep my stats short and brief and in bullet form so more succinct. Before doing that, I must say that in my desperate attempts to understand what is going on with my son I ran across an article online many months back about PANDAS and just could NOT believe the similarities with what he was going through - though in most cases not as severe. Then while watching Mystery Diagnosis and seeing Sammy's story a few weeks ago...my 16 year old daughter and I sat stone faced - jaws dropped - looking at one another in disbelief at home much it was like my son's experience (though, again, not near as dramatic).

 

My son is 7 years old.

 

He began getting "sick" when he was just over 1 year of age. I'll never forget snapping a pic of him at his first urgent care visit - at the time thinking it was kind of a "rite of passage".....never imagining what was down the road. At that time he had an ear infection that was so bad, before it was said and done he was on probably 2 or 3 oral antibiotics and when THAT didn't work - he had to have rocephin shots.

 

So much changed after that.....he began to have sensory integration issues (forget the name, but motion related).

 

He began to rage...and I thought, at the time, is was a reaction to antibiotics (I am very chemically sensitive). I really thought he had ODD. he would even get so upset he would hit his head on the refrigerator/wall.

 

As he got older and more verbal, he would ruminate how how something worked. This didn't happen often...but when it did, it was so sad because he wasn't just appearing to be naturally curious...but almost tortured by the need to understand.

 

He was sick a LOT from 2-6 with strep.

 

In the time period from ages 2-6 he developed an intense need to wash his hands. Fear of germs. He said he watched a show explain in detail how the germ went from an everyday item (say at the mall, or store) and travelled through the body, etc....this was on Syd The Science Kid.

 

He could not STAND to be kissed for the longest time and performed EVERY TIME what we thought was just a "silly" ritual - he would make a sound like a spray bottle and pretend to wipe off the kiss. He couldn't NOT do this. This resolved about 2 years ago.

 

He is a VERY anxious child. Very keenly aware of other people's emotions and a deep desire to make them feel better.

 

He had his tonsils and adenoids our 1 year ago and has not, to our knowlege, had a strep infection but at least twice has had an intense sore throat for which rapid tests came back negative.

 

My son's need to wash his hands waxes and wanes. And each time it "goes" we assume that his anxieties have improved and/or he has "outgrown" his ocd tendencies. "Tendencies"...we like to call them to avoid having to say OCD in a matter of fact kind of way. He has not been formally diagnosed, but does go on an as needed basis to his "worry tutor" (family counselor) to talk about his worries and fears.

 

His most recent expression of anxiety is his need to blow his hand - twice. He blows it right at the bottom of the thumb and forefinger. He says he isn't trying to blow off the germs - which I initially suspected. He says he needs to do it "even steven" number of times. He also flips one of his hands (sometimes both, but usually just one) in a way that is hard to describe...sort of like he is trying to pop his knuckles by snapping his hand in a downward motion if that makes sense. Over the summer his anxieties got so much better...but school is back in session (2nd grade) and that is particularly stressful for him and these "tics" have resumed and multiplied. Math is very much a struggle subject for him. And he still wets the bed at night and urinates FREQUENTLY during the day. He has been tested for any "mechanical" reason for his enuresis - but all the "plumbing" is in working order. I point that out because I think I read that children with PANDAS will have spells of night time wetting...my son, however, has only had a handful of dry nights in his whole life - regardless of anxieties and known strep infections.

 

The only "symptom" that I have read about that he doesn't have (to my knowlege, unless it is so suttle I can't detect it) is the choreaform movements.

 

I really appreciate the opportunity to purge myself of this information and look to those of you who have been walking this walk for some time now and can offer advice and thoughts. I have an appointment with a pediatric neurologist on Tuesday - but I plan to call the office tomorrow morning and specifically ask if the dr there BELIEVES in PANDAS (not just "treats" it as I have heard sometimes docs say yes just so they can dis spell the "myth" of PANDAS to people).

 

Can anyone tell me their first impression here? Advice? Emotional support. I actually WANT this to be what is going on with him - at least it would be an answer. I know everyone says this....but my son is so uniquely wonderful and precious (as they all are) and it breaks my HEART to see him so filled with fear. I'm suppose to be able to help him....but so far I've only gotten really good at putting on bandaids.

 

Many thanks...

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Hi and welcome to a place where you will get a ton of support and friendship.

 

It really sounds like you have stumbled onto something that could unlock the answer to what your son has been going through. First off, I am not trying to discourage you from the appointment with the Neurologist, but many of us on this board have had no luck with them. You are definitely doing the right thing by finding out where they stand on PANDAS before you waste your time and money. You may not get a straight answer if you ask them "if they believe in PANDAS" so what worked for me was to ask the Nurse or the Doctor if you get to speak to them "if PANDAS is suspected, what tests would you do to help confirm the diagnosis and or what treatment options would you offer?" This will certainly give you the answer you need before the appointment.

 

It seems that I see more parents taking their children to Immunologists since it is an Autoimmune Disorder. This is where we finally had success with a doctor. Have you looked over the list of PANDAS friendly doctors on this website? Where do you live?

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Welcome. I'm in a rush and couldn't read your whole post but this sentence popped out at me.....

 

 

 

 

The only "symptom" that I have read about that he doesn't have (to my knowlege, unless it is so suttle I can't detect it) is the choreaform movements.

 

 

 

 

fyi...my son had no tics. My son is 100% PANDAS. Don't let lack of tics or choreaform movements deter you from a possible diagnosis.

Edited by Vickie
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If I were you, I'd go through the list of doctors on this sight that have helped with PANDAS and choose one that people seem like they've had a lot of success with. Having moved from antibiotics, to steroids, and now to IVIG, if I could do it again, I'd go right to an immunologist who offers IVIG because then you have all options available to you right under one roof. (well, except maybe PEX) I can't say enough good about Dr. Bouboulis in CT. He's been a life saver for us.

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Hi and welcome,

I'll quickly say that your description sounds a lot like PANDAS. It seems from the history your son started early, so you probably don't have a "normal" to compare to. Has he been tested for immune deficiencies? If not, I would get that checked out. The OCD and the bedwetting are so typical I would say your best bet is to go straight to a specialist. Look at the top of the main page for a list of doctors.

I understand you WANTING it to be PANDAS. We too were relieved to know all this mental stuff actually had a physiological cause. So be patient and support your child as much as you can (without feeding his OCD!), and hopefully you can get an appointment and get him on the way to recovery soon.

Meanwhile I would recommend you read a book called "What to do when your child has OCD", it has been very useful for me. Even under the right treatment, you still need to work on breaking the OCD cycle.

All the best and keep us posted,

Isabel

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I will try and keep my stats short and brief and in bullet form so more succinct. Before doing that, I must say that in my desperate attempts to understand what is going on with my son I ran across an article online many months back about PANDAS and just could NOT believe the similarities with what he was going through - though in most cases not as severe. Then while watching Mystery Diagnosis and seeing Sammy's story a few weeks ago...my 16 year old daughter and I sat stone faced - jaws dropped - looking at one another in disbelief at home much it was like my son's experience (though, again, not near as dramatic).

 

My son is 7 years old.

 

He began getting "sick" when he was just over 1 year of age. I'll never forget snapping a pic of him at his first urgent care visit - at the time thinking it was kind of a "rite of passage".....never imagining what was down the road. At that time he had an ear infection that was so bad, before it was said and done he was on probably 2 or 3 oral antibiotics and when THAT didn't work - he had to have rocephin shots.

 

So much changed after that.....he began to have sensory integration issues (forget the name, but motion related).

 

He began to rage...and I thought, at the time, is was a reaction to antibiotics (I am very chemically sensitive). I really thought he had ODD. he would even get so upset he would hit his head on the refrigerator/wall.

 

As he got older and more verbal, he would ruminate how how something worked. This didn't happen often...but when it did, it was so sad because he wasn't just appearing to be naturally curious...but almost tortured by the need to understand.

 

He was sick a LOT from 2-6 with strep.

 

In the time period from ages 2-6 he developed an intense need to wash his hands. Fear of germs. He said he watched a show explain in detail how the germ went from an everyday item (say at the mall, or store) and travelled through the body, etc....this was on Syd The Science Kid.

 

He could not STAND to be kissed for the longest time and performed EVERY TIME what we thought was just a "silly" ritual - he would make a sound like a spray bottle and pretend to wipe off the kiss. He couldn't NOT do this. This resolved about 2 years ago.

 

He is a VERY anxious child. Very keenly aware of other people's emotions and a deep desire to make them feel better.

 

He had his tonsils and adenoids our 1 year ago and has not, to our knowlege, had a strep infection but at least twice has had an intense sore throat for which rapid tests came back negative.

 

My son's need to wash his hands waxes and wanes. And each time it "goes" we assume that his anxieties have improved and/or he has "outgrown" his ocd tendencies. "Tendencies"...we like to call them to avoid having to say OCD in a matter of fact kind of way. He has not been formally diagnosed, but does go on an as needed basis to his "worry tutor" (family counselor) to talk about his worries and fears.

 

His most recent expression of anxiety is his need to blow his hand - twice. He blows it right at the bottom of the thumb and forefinger. He says he isn't trying to blow off the germs - which I initially suspected. He says he needs to do it "even steven" number of times. He also flips one of his hands (sometimes both, but usually just one) in a way that is hard to describe...sort of like he is trying to pop his knuckles by snapping his hand in a downward motion if that makes sense. Over the summer his anxieties got so much better...but school is back in session (2nd grade) and that is particularly stressful for him and these "tics" have resumed and multiplied. Math is very much a struggle subject for him. And he still wets the bed at night and urinates FREQUENTLY during the day. He has been tested for any "mechanical" reason for his enuresis - but all the "plumbing" is in working order. I point that out because I think I read that children with PANDAS will have spells of night time wetting...my son, however, has only had a handful of dry nights in his whole life - regardless of anxieties and known strep infections.

 

The only "symptom" that I have read about that he doesn't have (to my knowlege, unless it is so suttle I can't detect it) is the choreaform movements.

 

I really appreciate the opportunity to purge myself of this information and look to those of you who have been walking this walk for some time now and can offer advice and thoughts. I have an appointment with a pediatric neurologist on Tuesday - but I plan to call the office tomorrow morning and specifically ask if the dr there BELIEVES in PANDAS (not just "treats" it as I have heard sometimes docs say yes just so they can dis spell the "myth" of PANDAS to people).

 

Can anyone tell me their first impression here? Advice? Emotional support. I actually WANT this to be what is going on with him - at least it would be an answer. I know everyone says this....but my son is so uniquely wonderful and precious (as they all are) and it breaks my HEART to see him so filled with fear. I'm suppose to be able to help him....but so far I've only gotten really good at putting on bandaids.

 

Many thanks...Gabi

Sounds like it could be PANDAS to me. There is a PANDAS doctor list on this forum under helpful threads that you might want to read.

 

http://www.latitudes.org/forums/index.php?showtopic=5023

 

For my dd, Dr. Bouboulis in CT is our life saver.

Edited by momaine
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