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Hello to all. I have been reading this forum for four weeks. First, I am so thankful to have found this forum and the PANDAS Network. I really believe there are outside forces at work; me finding this site. You see, my ds9 most likely has had PANDAS since the age of 3 or 4. One day, about a month ago, I was cleaning out my favorites on my internet at work. I came across a site I had saved when my son was 4- a site on PANDAS. I must have bookmarked it since it was such a good site for PANDAS info. I'm sure I had not seen the site in the last 5 years. Turns out, it was Dr. K's site. I scrolled down to see this picture- you know the one- of the dolls the little girl drew before and after IVIG. I was FASCINATED. This school year, my ds has had trouble with drawing and writing issues more so than normal, and mostly when sick. At one point, he brought a paper home from school, and I could not even read the handwriting. The pictures above it I swear were SCRIBBLES only. But when he was better, the writing returned to normal. I have spent this entire school year so far trying to figure out why my mostly straight A son has been failing the state standardized tests. We had a full speech evaluation and appointments with pediatricians and developmental pediatricians. No one can find anything wrong. But that is not the whole story. This is our experience, but it is long. But I think the more info that is out there, the better.

 

My dh and I have spent the last 5 years assuming our son does not have "PANDAS" but rather classic OCD and Tourette's with "PANDAS LIKE" exacerbations. He does well, but definitely has symptoms when sick or with strep. Where to start? Let's see...

 

Age three, lining up letter puzzles nonstop. He'd make us buy more puzzles to make more words, and we would do it. Hand flapping. Food aversions. Severe separation anxiety. Took him to preschool the first time and he threw up he was so upset and did not drink anything the whole day. Went to pick him up and he was standing by the fence waiting for me, crying, while the other kids played.

 

Age four, hand flapping, but also now has head shaking back and forth and this marching hop thing. I mean, what the heck? But this is transient. So when I tell the doc, she has no answer. Still severe separation problems. A few months later starts the eye blink. I took him to the eye doctor as any good Mommy would do, and his eyes are normal. Then the real stuff starts a few months after that. March, 2005. I can remember this like yesterday. My ds starts spitting. Not just a little. Spitting all the time and saliva everywhere. He does this spitting thing for about four days. Then, in a 2 day period, he lost it. The spitting was joined by huge unusual body movements: arms up and down and around. Marching with head moving back and forth and arms moving at the same time AND humming and unusual noises. In addition, he could not eat. He was so hungry but could not eat. He would only try to eat an english muffin but we had to make it a certain way and we had to let him oversee. He would sit there, all of four years old, and pick up his plate and lower it multiple times with these unusual vocal noises. He would put the plate down and then do an arm rake thing over the food. Most times he still could not eat it and even if, only a mouse bite. Plus, he was seeing flies and was upset there were flies on the muffin. He would see flies while riding in the car. We hid his board book "I know an old lady who swallowed a fly" which I'm sure is where that came from. At one point his body is moving in all directions and he looked at me and cried " I just want to eat my food!" He was so hungry but could not eat. I still get upset thinking about it, as he could not eat for almost 2 weeks and were close to taking him for hospitalization. At this time, he is also doing a robot walk thing and doing this staring thing- like he was not "in there". He would be gone for up to an hour at a time, then come back. SO scary. We were very aftraid one of those times he would not come back. Of course, this was so distressing as it exploded over 2 days, we were sent to the ER. They just watched him. And, decided it was OCD so see psychiatry. You know what? In hindsight, thanks for nothing. That led us to no where a la Saving Sammy as of course, it was an 8 month wait to see a psychiatrist. We were then also told to see a neurologist. It was there, with him that we first heard the word PANDAS. This neurologist ordered a CT scan of the head and an EEG to rule out seizures. He ordered an ASO titer. I remember taking our ds for these tests, and in addition to his other symptoms he developed this horrible leg/hip/knee pain; but no swelling. He had to be carried to the bathroom, as it was so bad he could not walk. I remember asking the doctors about this pain, but to be honest, the other symptoms were so distressing at the time I think it got shoved under the rug by us and the doctors. This severity of symptoms lasted about two weeks, and at our follow up appointment with the neurologist, we were told this was not PANDAS as the ASO titer was normal. It took both my dh and myself 3 weeks off work to care for him. He very very gradually improved. About 6 weeks after this happened he could go back to preschool, but he was still spitting. They let him spit in a trash can but still come. I took about 3 months for these symptoms to fade. Since the ASO titer was normal, my dh and I assumed this was OCD and Tourette's and dealt with it, and have ever since.

 

Over the years since that horrible time, our ds has done very well. He does well in school. He has friends. He goes to birthday parties. But the symptoms still come back; but not in a debilitating way. I have watched this over these 5 years and can say with confidence that he will begin with tics one day, the next day get a mild sore throat and fever, and the following day have a high fever and be positive for strep. He will get Omnicef for the strep as he is allergic to amoxil and our ped doesn't like zithromax. And he will gradually get better. My dh and I joke that his tic increase is a better indicator of strep than the rapid test in the office, and we had a few negatives of those when testing "too early".

 

When our ds was 6, he had his tonsils and adenoids out after having strep throat nine times in a row. That was not fun- it would not go away. After the surgery he would still get strep, just not as often. My younger son has had some bouts of strep, to be expected. I have had strep throat several times over the last 4 years. My husband had his tonsils out so doesn't get it as often. Two years ago, I was sick for several days with what I thought was a virus. Then, the first day my fever was gone I had a rash from the neck down. One of my coworkers swears I had scarlet fever, as she had seen it before. I couldn't get in to the doctor until after the weekend and by this time both my knees were swollen. At my appointment I was given prednisone and told it was most likely viral. But about 4 days after that, my ds had tics and of course a few days later positive for strep. My doctor then checked my ASO titer and it was elevated. He gave me amoxil. What a joke!

 

Looking back now, I can put the pieces together. My ds mirrors many kids on this forum: frequent strep, strep in the family. Allergies. Sick all the time with all kind of crap that isn't even going around at school. Asthma. You name it, we have it. Plus all the other family stuff you all mention. It really is truly amazing to me, all of my ds's little quirks and nuances are listed here. So for now, I plan to join this forum, continue to research as much as I can, and see Dr. K (he is closest) as soon as we are able. If Dr. K says he has PANDAS, I will not be surprised. If Dr. K says he does not have PANDAS, I will not be surprised.

 

And, by the way, if anyone is still reading this ridiculously long post (I should be in bed), it took me awhile to choose my "name" for this forum. I chose "reactive" because I was diagnosed many years ago by a rheumatologist with "reactive arthritis". This autoimmune disease causes arthritis and swelling in multiple joints. When I first got it I couldn't walk for a month. It comes and goes. It is considered "reactive" because your body is "reacting" to something; like Lyme disease, or other infections or to some thing else that is unknown (as is my case, cause unknown)...I am starting to think maybe strep? :)

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Welcome....

 

I have read that reactive arthritis can be cause by strep. I would advise your whole family to check the ASO and AntiDNASb titers. My "non-PANDAS" daughters ASO titers came back high, which may be explaining our son's most recent regression post IVIG. My husband and I are still waiting on our results.

 

I would highly recommend the consult with Dr. Kovacevic.

 

Elizabeth

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Welcome.

 

I will reread your post once I wake up more. But I did see reactive arthrtis. I believe that can be caused by strep. I remember posting a link about that awhile ago. I'll look for it. You should get some blood work done.Some PANDAS kids react to exposure only as well.

 

We should make some pins for our club and wear them so we can easily spot each other in crowds:)

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Over the years since that horrible time, our ds has done very well. He does well in school. He has friends. He goes to birthday parties. But the symptoms still come back; but not in a debilitating way. I have watched this over these 5 years and can say with confidence that he will begin with tics one day, the next day get a mild sore throat and fever, and the following day have a high fever and be positive for strep. He will get Omnicef for the strep as he is allergic to amoxil and our ped doesn't like zithromax. And he will gradually get better. My dh and I joke that his tic increase is a better indicator of strep than the rapid test in the office, and we had a few negatives of those when testing "too early".

 

Sounds soooo similar to our situation.

We still have tonsils though...i heard that taking them out doesn't necessarily change anything

Gosh....good luck...i hope you find your answer.

At least you can find people in your area who acknowlegde pandas/pitands.

 

On a side note.....there has been mention of particular strains of strep..... are we talking a vs b or a strain of one or the other that is more resistant?

Last night as the hamster in the spinning wheel in my brain was going.... i put together that a young girl across the street from us, she is 10-11 years older than my boy started pullng her eyebrows out about the same time as my boys would get strep tics.(she was 13-14 my boy 3ish)...unfortunately she still does that.... i am going to call her parents today to see if she had /was getting strep around that time

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Hello to all. I have been reading this forum for four weeks. First, I am so thankful to have found this forum and the PANDAS Network. I really believe there are outside forces at work; me finding this site. You see, my ds9 most likely has had PANDAS since the age of 3 or 4. One day, about a month ago, I was cleaning out my favorites on my internet at work. I came across a site I had saved when my son was 4- a site on PANDAS. I must have bookmarked it since it was such a good site for PANDAS info. I'm sure I had not seen the site in the last 5 years. Turns out, it was Dr. K's site. I scrolled down to see this picture- you know the one- of the dolls the little girl drew before and after IVIG. I was FASCINATED. This school year, my ds has had trouble with drawing and writing issues more so than normal, and mostly when sick. At one point, he brought a paper home from school, and I could not even read the handwriting. The pictures above it I swear were SCRIBBLES only. But when he was better, the writing returned to normal. I have spent this entire school year so far trying to figure out why my mostly straight A son has been failing the state standardized tests. We had a full speech evaluation and appointments with pediatricians and developmental pediatricians. No one can find anything wrong. But that is not the whole story. This is our experience, but it is long. But I think the more info that is out there, the better.

 

My dh and I have spent the last 5 years assuming our son does not have "PANDAS" but rather classic OCD and Tourette's with "PANDAS LIKE" exacerbations. He does well, but definitely has symptoms when sick or with strep. Where to start? Let's see...

 

Age three, lining up letter puzzles nonstop. He'd make us buy more puzzles to make more words, and we would do it. Hand flapping. Food aversions. Severe separation anxiety. Took him to preschool the first time and he threw up he was so upset and did not drink anything the whole day. Went to pick him up and he was standing by the fence waiting for me, crying, while the other kids played.

 

Age four, hand flapping, but also now has head shaking back and forth and this marching hop thing. I mean, what the heck? But this is transient. So when I tell the doc, she has no answer. Still severe separation problems. A few months later starts the eye blink. I took him to the eye doctor as any good Mommy would do, and his eyes are normal. Then the real stuff starts a few months after that. March, 2005. I can remember this like yesterday. My ds starts spitting. Not just a little. Spitting all the time and saliva everywhere. He does this spitting thing for about four days. Then, in a 2 day period, he lost it. The spitting was joined by huge unusual body movements: arms up and down and around. Marching with head moving back and forth and arms moving at the same time AND humming and unusual noises. In addition, he could not eat. He was so hungry but could not eat. He would only try to eat an english muffin but we had to make it a certain way and we had to let him oversee. He would sit there, all of four years old, and pick up his plate and lower it multiple times with these unusual vocal noises. He would put the plate down and then do an arm rake thing over the food. Most times he still could not eat it and even if, only a mouse bite. Plus, he was seeing flies and was upset there were flies on the muffin. He would see flies while riding in the car. We hid his board book "I know an old lady who swallowed a fly" which I'm sure is where that came from. At one point his body is moving in all directions and he looked at me and cried " I just want to eat my food!" He was so hungry but could not eat. I still get upset thinking about it, as he could not eat for almost 2 weeks and were close to taking him for hospitalization. At this time, he is also doing a robot walk thing and doing this staring thing- like he was not "in there". He would be gone for up to an hour at a time, then come back. SO scary. We were very aftraid one of those times he would not come back. Of course, this was so distressing as it exploded over 2 days, we were sent to the ER. They just watched him. And, decided it was OCD so see psychiatry. You know what? In hindsight, thanks for nothing. That led us to no where a la Saving Sammy as of course, it was an 8 month wait to see a psychiatrist. We were then also told to see a neurologist. It was there, with him that we first heard the word PANDAS. This neurologist ordered a CT scan of the head and an EEG to rule out seizures. He ordered an ASO titer. I remember taking our ds for these tests, and in addition to his other symptoms he developed this horrible leg/hip/knee pain; but no swelling. He had to be carried to the bathroom, as it was so bad he could not walk. I remember asking the doctors about this pain, but to be honest, the other symptoms were so distressing at the time I think it got shoved under the rug by us and the doctors. This severity of symptoms lasted about two weeks, and at our follow up appointment with the neurologist, we were told this was not PANDAS as the ASO titer was normal. It took both my dh and myself 3 weeks off work to care for him. He very very gradually improved. About 6 weeks after this happened he could go back to preschool, but he was still spitting. They let him spit in a trash can but still come. I took about 3 months for these symptoms to fade. Since the ASO titer was normal, my dh and I assumed this was OCD and Tourette's and dealt with it, and have ever since.

 

Over the years since that horrible time, our ds has done very well. He does well in school. He has friends. He goes to birthday parties. But the symptoms still come back; but not in a debilitating way. I have watched this over these 5 years and can say with confidence that he will begin with tics one day, the next day get a mild sore throat and fever, and the following day have a high fever and be positive for strep. He will get Omnicef for the strep as he is allergic to amoxil and our ped doesn't like zithromax. And he will gradually get better. My dh and I joke that his tic increase is a better indicator of strep than the rapid test in the office, and we had a few negatives of those when testing "too early".

 

When our ds was 6, he had his tonsils and adenoids out after having strep throat nine times in a row. That was not fun- it would not go away. After the surgery he would still get strep, just not as often. My younger son has had some bouts of strep, to be expected. I have had strep throat several times over the last 4 years. My husband had his tonsils out so doesn't get it as often. Two years ago, I was sick for several days with what I thought was a virus. Then, the first day my fever was gone I had a rash from the neck down. One of my coworkers swears I had scarlet fever, as she had seen it before. I couldn't get in to the doctor until after the weekend and by this time both my knees were swollen. At my appointment I was given prednisone and told it was most likely viral. But about 4 days after that, my ds had tics and of course a few days later positive for strep. My doctor then checked my ASO titer and it was elevated. He gave me amoxil. What a joke!

 

Looking back now, I can put the pieces together. My ds mirrors many kids on this forum: frequent strep, strep in the family. Allergies. Sick all the time with all kind of crap that isn't even going around at school. Asthma. You name it, we have it. Plus all the other family stuff you all mention. It really is truly amazing to me, all of my ds's little quirks and nuances are listed here. So for now, I plan to join this forum, continue to research as much as I can, and see Dr. K (he is closest) as soon as we are able. If Dr. K says he has PANDAS, I will not be surprised. If Dr. K says he does not have PANDAS, I will not be surprised.

 

And, by the way, if anyone is still reading this ridiculously long post (I should be in bed), it took me awhile to choose my "name" for this forum. I chose "reactive" because I was diagnosed many years ago by a rheumatologist with "reactive arthritis". This autoimmune disease causes arthritis and swelling in multiple joints. When I first got it I couldn't walk for a month. It comes and goes. It is considered "reactive" because your body is "reacting" to something; like Lyme disease, or other infections or to some thing else that is unknown (as is my case, cause unknown)...I am starting to think maybe strep? :)

 

Your history is a recurring theme but you've found a great group and there is strength is numbers. Hanging around (virtually) with seasoned, bright parents and aligning with one of the big gun docs is the best thing you can do for your son...and I'll bet you end up tackling that reactive arthritis once and for all in the same step.

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Hi Reactive,

 

A GIGANTIC warm welcome to the "club"! You will find strength within this forum. If you ask me, you're pretty strong already to endure the years of frustration and heartache that comes along with your "membership".

 

I second (or third, or fourth), the suggestions of the previous posts. Find a good PANDAS doc (where to you live)? Test, test, test, your child, your family members, ######, even your neighbors and your neighbors, neighbors (hehehe)! :lol: Eradicate the strep from everyone including your precious son and find the determination to not just "live within your nightmare", but conquer and win this battle! YOU CAN DEFEAT THIS! It's not easy, as you already know, but it is possible!

 

READ, READ, READ, as many posts/topics as you can and ASK, ASK, ASK any and all questions. There are sooooo many helpful parents here. Lst but not least, keep the humor along with the faith (no pun intended towards faith's last post but it did make me laugh), you will need it to get you through! Good luck!

 

Always here for you if you need me,

 

Lynn

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reactive,

 

Can I ask if your rash looked anything like the pic in the link? I got this from a googling images of scarlet fever.

 

 

http://www.clinical-virology.org/gallery/i...let_fever_2.jpg

 

 

Two years ago, I was sick for several days with what I thought was a virus. Then, the first day my fever was gone I had a rash from the neck down. One of my coworkers swears I had scarlet fever, as she had seen it before. I couldn't get in to the doctor until after the weekend and by this time both my knees were swollen.
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Faith,

 

Your remarks about your son's itchy head and heels recently, caught my attention too. I'll tell you something about skin stuff, it's VERY hard (for Docs too) to pin down exactly what they are. A biopsy will provide the most definitive info (in the absence of other clear cut symptoms) but it has to be done before steroids, antibiotics etc. I could just kill myself for not making them culture my elbow when it got infected and that rash broke out.

 

Have you noticed the spots in relationship to other symptoms or exacerbations?

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reactive,

 

Can I ask if your rash looked anything like the pic in the link? I got this from a googling images of scarlet fever.

 

 

http://www.clinical-virology.org/gallery/i...let_fever_2.jpg

 

 

Two years ago, I was sick for several days with what I thought was a virus. Then, the first day my fever was gone I had a rash from the neck down. One of my coworkers swears I had scarlet fever, as she had seen it before. I couldn't get in to the doctor until after the weekend and by this time both my knees were swollen.

Yes, although maybe a little more fine and sandpapery. I have a dermatology book since I work in healthcare, and it looked like scarlet fever or a nonspecific viral rash. If my ASO was not elevated the next week after my son came down with strep, I would have thought it was a virus only. But to me, it seemed too coincidental. And it happened over Easter and the rash was almost gone by the time my doctor saw it.

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Faith,

 

Your remarks about your son's itchy head and heels recently, caught my attention too. I'll tell you something about skin stuff, it's VERY hard (for Docs too) to pin down exactly what they are. A biopsy will provide the most definitive info (in the absence of other clear cut symptoms) but it has to be done before steroids, antibiotics etc. I could just kill myself for not making them culture my elbow when it got infected and that rash broke out.

 

Have you noticed the spots in relationship to other symptoms or exacerbations?

I agree that rashes can be hard for health care providers. Some can look similar to other conditions. See my prior reply: if the doc cannot see it fullblown and only sees it faded and almost gone, what can you do? In an adult with no sore throat and the fever is gone, and kids not currently with strep, my doc did not think of strep at the time.

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