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Here's mine. I put "+" for exhibited symptoms, "NO" for what we haven't seen, and explanations for what I'm not certain of.

Out of curiousity, I did a quick search on bipolar disorder in children. Here is a link http://bipolar.about.com/cs/kids_diag/a/red_flags4.htm

 

Holy guacamole...they sound just like PANDAS symptoms. I am in the camp that lots of "bipolar" kids are actually undiagnosed PANDAS. My dd had many many of these "bipolar" symptoms (along with anorexia nervosa) in the height of her worst PANDAS episode (Spring 08). I should also add that some of these symptoms (eg aggressive behavior) were made worse with psych. meds (serotonin syndrome) in May 08.

 

Very Common Symptoms of Early-Onset Bipolar Disorder

 

Separation anxiety +

 

Rages & explosive temper tantrums (lasting up to several hours) ++++++

 

Marked irritability + don't know the difference between marked and unmarked irritability, but she been exceptionally irritable!

 

Oppositional behavior +++++

 

Frequent mood swings +

 

Distractibility+++

 

Hyperactivity+++++

 

Impulsivity +++

 

Restlessness/ fidgetiness +++

 

Silliness, goofiness, giddiness + could have used a little more of that!

 

Racing thoughts I would guess probably, but she can't express herself well enough to say for sure

 

Aggressive behavior ++++++++++

 

Grandiosity NO

 

Carbohydrate cravings +

 

Risk-taking behaviors -not sure. There were some risky things, but not sure if she knew they were risky

 

Depressed mood +

 

Lethargy NO- but would like to see that once in awhile!

 

Low self-esteem I think so, but its hard to say for sure

 

Difficulty getting up in the morning +

 

Social anxiety ++++++

 

Oversensitivity to emotional or environmental triggers +++++

 

Common Symptoms of Early-Onset Bipolar Disorder

 

Bed-wetting (especially in boys) + I have a girl, but the bed wetting is the first sign that she's headed for a PANDAS attack

 

Night terrors I don't think so, but maybe

 

Rapid or pressured speech never had rapid speech. Not sure what pressured speech is. She lost the speech she had.

 

Obsessional behavior ++++++

 

Excessive daydreaming I don't know

 

Compulsive behavior +++++

 

Motor & vocal tics Not sure if its considered tics or not- but some very bizarre, complex repetitive movements

 

Learning disabilities +

 

Poor short-term memory NO

 

Lack of organization +++++

 

Fascination with gore or morbid topics I don't think so

 

Hypersexuality NO

 

Manipulative behavior She had behavior that was, I think, misinterpreted as manipulative

 

Bossiness Hard to say- it appeared so, but we may have misunderstood

 

Lying NO

 

Suicidal thoughts I don't think so. I'm not certain if she knows about death.

 

Destruction of property +++ But, not in anger

 

Paranoia maybe, in the sense that she seems to have irrational fears, but don't know what she was thinking

 

Hallucinations & delusions I don't know

 

 

I am not forum-sophisticated enough to know how to operate a "poll" on this. But I am VERY interested to know how many parents of kids with diagnosed and/or treated PANDAS have/had these symptoms. My son has exhibited all but 8 over the years. Does anyone know how to start a thread with this as a poll where we could track this?

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Its 2 am and I cant sleep so I logged back on here and am astounded and overwhelmed by all the support and encouragement from all of you. And Dr. T! Thank you so much, I will be calling you soon to get your opinion!

 

Buster, I was not able to get the Cam Kinase done before this appt. as the kit got lost in the fed ex mail. I was supposed to have Dr L do it today at our appt but she told me she felt it would be a waste of money. She did not say why she did not think it fit "classic PANDAS" but that she believed in PANDAS and had seen over 150 cases and he did not look like it. I thinkseveral things complicate this. First, that we gave my son his first dose of Paxil at age 6, and his sudden onset of new OCD symptoms came on the next day. Positive strep 4 days later. So she felt it possible that the PAxil had activated this reaction (mind you it did not go away when we stopped the paxil after 4 days). Secondly, that when the OCD symptoms returned full out at age 8 he was not strep positive and responded to a change in ssri. Third, this has been going on so long, that when people ask me about his current symptoms I tend to focus on the extreme rage/anxiety/exorcist episodes, as that is what makes it so intolerable. The milder OCD, tics, irritability, baby talk and worry are often there, but seem managable in comparison, so I tend to not talk a lot about that and see that as him being "fine". This last round of Omnicef he did not respond in the same way he had earlier in the fall. Earlier we had seen apattern of improvement after about 5 days, then and edging up of symptoms again after 5 days off abx. This last dose started 1-8 and we saw a week of improvement after about day 5, but then it all came back again. With the worst day being last Friday. She mentioned his nocturnal enuresis as a thought in her seizure theory, in that I mentioned that he has at times fallen asleep on the couch, and then wet himself within 10-15 minutes. She said usually this would occur in deep sleep that takes 60-90 minutes to achieve.

 

The problem I have with my local docs is that this is somewhat of a 3rd opinion. We had a phone consult with Dr. N in mid Dec who also said she was not convinced it was PANDAS and recommended mood stabilizers. Two weeks later we consulted with another psychiatrist, who recommended Lamictal. And so now this is a third. I am not against trying it if it may help. I know that there are parents on this board who are still using mood stabilizers for their kids despite other PANDAS treatment. Its just, I am so sickened to continue to have my son endure all these medical appointments and tests only to have everything come back negative or inconclusive...I know it is taking its toll on him. I feel like I built this trip up for him that we would finally get the answers we needed. Instead, more tests, more questions. I think he thought Dr L was going to make him better. Now I don't know what to tell him. Or how to explain to him he needs to undergo 3 days hooked up to an EEG, only to likely find out - more nothing. Or how to come to grips with the idea it might be Bipolar.

 

In regards to Dr K telling me he needed IVIG immediately, I have to say that response was from a short email to him in October, in which I told him my son had been diagnosed with PANDAS at age 7 and the history of psychiatric treatment. It was not the full story. I guess this is how medicine works. You rule out all the "horses" until you are left with zebra. I kind of have to laugh now at my screen name - if I thought I was "wornout" before, I had no idea. And now I have a huge snowstorm, possible flight delays, lack of sleep, and my son's anxiety about returning back to "real life" to deal with tomorrow.

 

I know this is so frustrating - I feel your pain. We too are doing every test we can to build the case to keep us on track with doctors. I agree with Buster and others that you should get this testing done. Lyme is very serious. We have started to pursue Lyme treatments, becasue it is impossible to completely rule out - even with a negative test (although we are awaiting the Igenetics test results) and if our DD has Lyme then the PANDAS treatments can make them worse (steroids) or be like throwing a glass of water in the ocean (IVIG). From what I understand (and we are new at this) very strong long term antibiotics are the only way to cure Lyme. You will know you are dealing wtih Lyme if when you start the antibiotic treatments you get the exacerbation of symptoms called a Herxeimer Reaction. I am glad you are pursuing the Lyme avenue as well. Good luck and Please, Please, Please do not leave the forum...even if your child ends up with different issues, we can all benefit from your experience. There may be others of us whose kids have co-morbidities (they may explain why treatments for some don't work for others) or that are even on the wrong path. We would all rather know than beat our heads down a path with "no returns." As dissapointed as you are to still have unanswered and now even more unanswered questions, you are moving forward on your journey. I know your son is frustrated.... my daughter practically refuses to go to doctors anymore. I have started to have her see someone - not for ERP or anything... just someone to talk to about how she feels about this frustrating debilitating path she is on. The person she see's is just for her - I don't go in... it's not another doctor appointment that Mom is dragging me to, but rather her appointment, her time wtih this person she actually really likes and feels like understands her. the doctor has done wonders with helping her understand that it's not her fault she hasn't been able to get well... and to understand how there could be so many doctors out there that just don't understand how to help her -which is a scary feeling for a kid! Hang in there!!

 

I do have some questions for you and Buster. We have been told to do a sleep study on our daughter - we did the sleep deprived and were told no we need the overnight one.....I hadn't heard about three days... I am curious - you mentioned three days of EEG... what is this? Buster, you mentioned MRI for ADEM, checked for demylination and functional MRI. I have not heard of these. When would one want to get these and where and how would one check for these? Worried Dad (I believe) mentions PET scan. What is the difference between PET scan and MRI? Does anyone know?

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When you talk about lyme and the antibiotics and symptoms getting worse.... do you mean for a long time or even just a few days? When my ds was put on azith this last time when he didn't really have many symptoms going on he had several days that I think he started to show them... but the dr. said that it was not unusual for that to happen for a few days.. it shouldn't have lasted more than that but a few days didn't concern him. It did get better but I would say it was almost a week that I was questioning what was going on. It wasn't awful..... and I wasn't even positive if I was right that it worse.

 

 

 

 

 

 

I know this is so frustrating - I feel your pain. We too are doing every test we can to build the case to keep us on track with doctors. I agree with Buster and others that you should get this testing done. Lyme is very serious. We have started to pursue Lyme treatments, becasue it is impossible to completely rule out - even with a negative test (although we are awaiting the Igenetics test results) and if our DD has Lyme then the PANDAS treatments can make them worse (steroids) or be like throwing a glass of water in the ocean (IVIG). From what I understand (and we are new at this) very strong long term antibiotics are the only way to cure Lyme. You will know you are dealing wtih Lyme if when you start the antibiotic treatments you get the exacerbation of symptoms called a Herxeimer Reaction. I am glad you are pursuing the Lyme avenue as well. Good luck and Please, Please, Please do not leave the forum...even if your child ends up with different issues, we can all benefit from your experience. There may be others of us whose kids have co-morbidities (they may explain why treatments for some don't work for others) or that are even on the wrong path. We would all rather know than beat our heads down a path with "no returns." As dissapointed as you are to still have unanswered and now even more unanswered questions, you are moving forward on your journey. I know your son is frustrated.... my daughter practically refuses to go to doctors anymore. I have started to have her see someone - not for ERP or anything... just someone to talk to about how she feels about this frustrating debilitating path she is on. The person she see's is just for her - I don't go in... it's not another doctor appointment that Mom is dragging me to, but rather her appointment, her time wtih this person she actually really likes and feels like understands her. the doctor has done wonders with helping her understand that it's not her fault she hasn't been able to get well... and to understand how there could be so many doctors out there that just don't understand how to help her -which is a scary feeling for a kid! Hang in there!!

 

I do have some questions for you and Buster. We have been told to do a sleep study on our daughter - we did the sleep deprived and were told no we need the overnight one.....I hadn't heard about three days... I am curious - you mentioned three days of EEG... what is this? Buster, you mentioned MRI for ADEM, checked for demylination and functional MRI. I have not heard of these. When would one want to get these and where and how would one check for these? Worried Dad (I believe) mentions PET scan. What is the difference between PET scan and MRI? Does anyone know?

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My son is amongst the kids that were told might be bipolar by a med person ( just can't call them a professional). It was when he had an exacerbation with a negative strep test. It was a few days later we realized his allergies were acting up and allergies were a trigger for him.

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When you talk about lyme and the antibiotics and symptoms getting worse.... do you mean for a long time or even just a few days? When my ds was put on azith this last time when he didn't really have many symptoms going on he had several days that I think he started to show them... but the dr. said that it was not unusual for that to happen for a few days.. it shouldn't have lasted more than that but a few days didn't concern him. It did get better but I would say it was almost a week that I was questioning what was going on. It wasn't awful..... and I wasn't even positive if I was right that it worse.

 

 

 

 

 

 

I know this is so frustrating - I feel your pain. We too are doing every test we can to build the case to keep us on track with doctors. I agree with Buster and others that you should get this testing done. Lyme is very serious. We have started to pursue Lyme treatments, becasue it is impossible to completely rule out - even with a negative test (although we are awaiting the Igenetics test results) and if our DD has Lyme then the PANDAS treatments can make them worse (steroids) or be like throwing a glass of water in the ocean (IVIG). From what I understand (and we are new at this) very strong long term antibiotics are the only way to cure Lyme. You will know you are dealing wtih Lyme if when you start the antibiotic treatments you get the exacerbation of symptoms called a Herxeimer Reaction. I am glad you are pursuing the Lyme avenue as well. Good luck and Please, Please, Please do not leave the forum...even if your child ends up with different issues, we can all benefit from your experience. There may be others of us whose kids have co-morbidities (they may explain why treatments for some don't work for others) or that are even on the wrong path. We would all rather know than beat our heads down a path with "no returns." As dissapointed as you are to still have unanswered and now even more unanswered questions, you are moving forward on your journey. I know your son is frustrated.... my daughter practically refuses to go to doctors anymore. I have started to have her see someone - not for ERP or anything... just someone to talk to about how she feels about this frustrating debilitating path she is on. The person she see's is just for her - I don't go in... it's not another doctor appointment that Mom is dragging me to, but rather her appointment, her time wtih this person she actually really likes and feels like understands her. the doctor has done wonders with helping her understand that it's not her fault she hasn't been able to get well... and to understand how there could be so many doctors out there that just don't understand how to help her -which is a scary feeling for a kid! Hang in there!!

 

I do have some questions for you and Buster. We have been told to do a sleep study on our daughter - we did the sleep deprived and were told no we need the overnight one.....I hadn't heard about three days... I am curious - you mentioned three days of EEG... what is this? Buster, you mentioned MRI for ADEM, checked for demylination and functional MRI. I have not heard of these. When would one want to get these and where and how would one check for these? Worried Dad (I believe) mentions PET scan. What is the difference between PET scan and MRI? Does anyone know?

 

 

 

I'm waiting for Buster to weigh in as well regarding ADEM and demylination (that has to do with covering on nerves I believe). Functional MRI is an MRI while you are doing something specific, I think, so the brain image is while active rather than passive. PET scans I believe use some radiation and go deeper into the brain regarding imaging than MRI. The idea behind a 3 day EEG I think was to increase the chance of him having an episode and being able to record it. I do wonder what the difference in brain activity is between a seizure and a severe anxiety attack, though I assume they are different.

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QUOTE(ajcire @ Feb 4 2010, 07:13 AM)

When you talk about lyme and the antibiotics and symptoms getting worse.... do you mean for a long time or even just a few days? When my ds was put on azith this last time when he didn't really have many symptoms going on he had several days that I think he started to show them... but the dr. said that it was not unusual for that to happen for a few days.. it shouldn't have lasted more than that but a few days didn't concern him. It did get better but I would say it was almost a week that I was questioning what was going on. It wasn't awful..... and I wasn't even positive if I was right that it worse.

 

 

doesn't say anything about what the 'reason' is tho., that's just anecdotal. they don't know what or why it seemed to get worse for a few days, not everyone has that experience.. I have had this same reaction with the azith. and I have stopped it tho. (remember my son is one with no evidence of recent strep or high titers).....so I have to wonder if it IS because of the reasons CharlotteMOM is stating........i

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And then I pick up The Explosive Child by Ross Greene

I look at all his kid examples in the book.

 

Hmmmmm.

 

Either they all have PANDAS or I'm crazy.

 

Or they're all bipolar and I'm crazy.

 

Either way I end up crazy.

 

Did anyone look at Ross Greene's book and think the same thing? I bet my psychologist mother has read his stuff and simply thinks that all that is shown in that book indicates that's who my son is and there ain't nothing about PANDAS in it!

Anyone know if Ross Greene has an opinion on PANDAS? He is at Mass General in Boston.

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YES!!! I just started that book the other day and I said the exact same thing..I was thinking... goodness... I wonder if they know they have pandas!

 

 

 

 

And then I pick up The Explosive Child by Ross Greene

I look at all his kid examples in the book.

 

Hmmmmm.

 

Either they all have PANDAS or I'm crazy.

 

Or they're all bipolar and I'm crazy.

 

Either way I end up crazy.

 

Did anyone look at Ross Greene's book and think the same thing? I bet my psychologist mother has read his stuff and simply thinks that all that is shown in that book indicates that's who my son is and there ain't nothing about PANDAS in it!

Anyone know if Ross Greene has an opinion on PANDAS? He is at Mass General in Boston.

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And then I pick up The Explosive Child by Ross Greene

I look at all his kid examples in the book.

 

Hmmmmm.

 

Either they all have PANDAS or I'm crazy.

 

Or they're all bipolar and I'm crazy.

 

Either way I end up crazy.

 

Did anyone look at Ross Greene's book and think the same thing? I bet my psychologist mother has read his stuff and simply thinks that all that is shown in that book indicates that's who my son is and there ain't nothing about PANDAS in it!

Anyone know if Ross Greene has an opinion on PANDAS? He is at Mass General in Boston.

And one would think that if they had bipolar they would not grow out of it, but if they were PANDAS they might. My question would be, and maybe someone out there knows this, how common is it to diagnose bipolar in a child vs. adult?

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And then I pick up The Explosive Child by Ross Greene

I look at all his kid examples in the book.

 

Hmmmmm.

 

Either they all have PANDAS or I'm crazy.

 

Or they're all bipolar and I'm crazy.

 

Either way I end up crazy.

 

Did anyone look at Ross Greene's book and think the same thing? I bet my psychologist mother has read his stuff and simply thinks that all that is shown in that book indicates that's who my son is and there ain't nothing about PANDAS in it!

Anyone know if Ross Greene has an opinion on PANDAS? He is at Mass General in Boston.

 

oh how your post made me lol (as I sort of feel I am at the end of crazy right now myself) I read that book back when my son was around 7 and I have to say that regardless of diagnosis, it did have a positive impact on how I parent my son. Sort of validated that my "normal" parenting instincts were not appropriate in his situation. The "inflexibilty" plus "inflexibility" equals explosion mantra is often in my head, and on those days I dont' feel like I've handled things well, I can almost always go back to my own "inflexibility" as making the situation worse.

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quote]laurenjohnsonsmom[quote

Maybe she's just overworked and overwhelmed and us losing focus and good judgement. Unfortunatley it's the children who suffer...she (dr. Latimer) is going through some rough personal issues NOT that i'm making excuses.

 

 

:huh: ...Are you sure you're talking about Dr. L. here? ... :) ..not sure its cool to state something like that. Isn't your child a patient of hers? I am pretty sure Dr. L. is VERY dedicated to helping these children.......that's something we should all stay focused on.

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oh my how this thread tears my heart apart! (for many reasons!) When we first pursued PANDAS w/ my son at the time 6... we were told by a nureologist and a psychiatrist it was not PANDAS perhaps bipolar or even pediatric schizophrenia! I nearly fell to the floor! I have a psychology degree and I knew enough to have an intelligent argument with them - (we were at Rainbow Babies in Cleveland) my husband and I had just learned of PANDAS a week or so prior and had done some research - THey said they could not diagnose PANDAS b/c of his titers (they were not elevated enough! - elevated but not enough :) - but he had all the other markers... the interns there were very amuzed with this heated dicussion - but in the end we told them that we would settle for a 'unconfirmed PANDAS diagnosis' and would try the zoloft (not sure why but I guess I felt I was left w/ no other choice) ... well the SSRI made him totally nutzo.... I slowly weaned him off and told the psychaitrist at our last visit that we would not be coming back (he wanted to know why since the med was apparently working ... I told him he was off the zoloft and he was doing better as the antibiotic had cleared the strep.... he tried to get me to make another appt. but I was done with that road!

 

.... present day.... we are working on a PANDAS diagnosis on my daughter.... the 1st psychologit and psychiatrist said ODD - possibly bipolar.... but didnt completely fit the profile YET! I was furious... a few days later we got the STREP results on her... then they started to consider PANDAS but I have since moved on to another psychologist... one that is not so quick to judge....

 

I called my dad (he lived in HI and I am in OH and cried as I told him that they thought GAbrielle may be bipolar.... He was diagnosed as Bipolar just out of high school.... (yes he had frequent throat infections when younger and totally fits the PANDAS profile) I told him all the information that I have learned from this forum and he told me that he believes it... He is not on constant meds and the last dr he saw 3 years ago told him he was not diagnosed correctly - he is NOT bipolar!!!! (he is 59 years old and the stuff he endured as 'treatment' os heartbreaking!... He went most of his life w/o psy meds! and w/o seeing mental health drs.

 

anyhow... I AGREE... I THINK MOST BIPOLAR DIAGNOSIS' are PANDAS or related to another ILLNESS.... I do think that there is mental illness - but I also think it is far too coincidental that so many mental illness reponds to antibiotic or clears on its own! I dont have the proof only the anecdotal evidence....

 

You will find the answers you are searching for.... you will know when you have a doctor that you can trust... your gut will tell you... and then you will feel 'ok' with dealing with whatever the official diagnosis is...

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oh my how this thread tears my heart apart! (for many reasons!) When we first pursued PANDAS w/ my son at the time 6... we were told by a nureologist and a psychiatrist it was not PANDAS perhaps bipolar or even pediatric schizophrenia! I nearly fell to the floor! I have a psychology degree and I knew enough to have an intelligent argument with them - (we were at Rainbow Babies in Cleveland) my husband and I had just learned of PANDAS a week or so prior and had done some research - THey said they could not diagnose PANDAS b/c of his titers (they were not elevated enough! - elevated but not enough <_< - but he had all the other markers... the interns there were very amuzed with this heated dicussion - but in the end we told them that we would settle for a 'unconfirmed PANDAS diagnosis' and would try the zoloft (not sure why but I guess I felt I was left w/ no other choice) ... well the SSRI made him totally nutzo.... I slowly weaned him off and told the psychaitrist at our last visit that we would not be coming back (he wanted to know why since the med was apparently working ... I told him he was off the zoloft and he was doing better as the antibiotic had cleared the strep.... he tried to get me to make another appt. but I was done with that road!

 

.... present day.... we are working on a PANDAS diagnosis on my daughter.... the 1st psychologit and psychiatrist said ODD - possibly bipolar.... but didnt completely fit the profile YET! I was furious... a few days later we got the STREP results on her... then they started to consider PANDAS but I have since moved on to another psychologist... one that is not so quick to judge....

 

I called my dad (he lived in HI and I am in OH and cried as I told him that they thought GAbrielle may be bipolar.... He was diagnosed as Bipolar just out of high school.... (yes he had frequent throat infections when younger and totally fits the PANDAS profile) I told him all the information that I have learned from this forum and he told me that he believes it... He is not on constant meds and the last dr he saw 3 years ago told him he was not diagnosed correctly - he is NOT bipolar!!!! (he is 59 years old and the stuff he endured as 'treatment' os heartbreaking!... He went most of his life w/o psy meds! and w/o seeing mental health drs.

 

anyhow... I AGREE... I THINK MOST BIPOLAR DIAGNOSIS' are PANDAS or related to another ILLNESS.... I do think that there is mental illness - but I also think it is far too coincidental that so many mental illness reponds to antibiotic or clears on its own! I dont have the proof only the anecdotal evidence....

 

You will find the answers you are searching for.... you will know when you have a doctor that you can trust... your gut will tell you... and then you will feel 'ok' with dealing with whatever the official diagnosis is...

Sorry, I am still learning how to use this forum and have not yet figured out how to take away the quote. I am interested in your story in that you have a psychology degree, so you would know what you are talking about with mental health. That gives you an edge. Our situation is similar in that when my son was four and had his explosion, it was the neurologist who mentioned the word PANDAS or I would not have known what it was...but the ASO titer was negative so it was dismissed as a possibility. I know now that first, maybe actually checking for strep may have helped and second, an antiDNAse B titer could have helped...but when to draw....this was five years ago. Kind of a missed opportunity?

 

We were given celexa for him but began to see a gradual improvement, so we never started it. I think that was the best decision we made, as if he started that SSRI it could have made him worse, or if he got better we would have thought it was the SSRI. Now, it took another month until he was functional and many more months for symptoms to resolve, but I'm still glad we didn't start the SSRI.

 

I feel that the last five years have given me more reason to feel this could be PANDAS for us as I have had the benefit of seeing his response to strep over the last five years. And his symptoms do increase with strep. But, I also feel we are so lucky, as although this is hard to deal with at times, I am hearing many other stories on this forum in which the children are much more severe. I think of all of you in that situation frequently...as all of you who have seen the severe flare know how hard and heartbreaking that is. My husband and I still tear up sometimes when we relive some of those moments of the past. I have asked my son, now 9, and he does not remember that time or doing those movements, ect. He has issues now, and they come and go, but nothing as debiltitating as the first time...not sure why?

 

My dh's father was diagnosed as bipolar, but we cannot ask him details about his diagnosis or if he had frequent tonsillitis or strep as a child as he passed away ten years ago. But hearing the story about your father has intrigued me...

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