Confused by recent strep infection

[Haileymadison]

Hello all,

 

It was approximately 1 year ago that I began searching the internet for answers. August of 2010, my daughter had a sore throat and fever that lasted 1 day. Shortly thereafter, she developed crazy frequent urination. I took her to the doctor and she cultured negative for any type of urinary tract infection. Over the next couple of weeks, she developed separation anxiety to the point that I could not walk into a different room without her wrapped around my legs. She was terrified of being kidnapped!!! At the time, I just figured she was anxious about starting kindergarten.

 

Soon after beginning kindergarten, she developed a severe fear of choking on food to the point of chewing yogart 100 times before she would swallow, which lead to a panic attacks. She started having night time meltdowns due to a fear of dying in her sleep. A couple of days later she would start frequent hand washing that would last a couple of days, only to be replaced with "I think, I just said a bad word" 100 times a day. The frequent urination continued with excessive wiping ( she never felt dry) and changed her underwear a dozen times a day. The list goes on and on.

 

I spent several nights on the internet reading up on anxiety and OCD in children when I found this forum. I took her to the doctor for a culture and sure enough she cultured positive. She was placed on 10 days of Suprax and within 3 days, I had my daughter back.

 

Over the course of the next couple of months she developed a couple of virus's and a severe sinus infection, but no more Pandas exacerbations.

 

 

In March, I started giving her Olive Leaf Extract. She remained healthy for the rest of the spring and summer and up until 3 weeks ago, had not had as much as a sniffle.

 

3 weeks ago, she got off the bus, complaining that her throat hurt, and she was extremely thirsty. I gave her a home strep test and sure enough it was Positive. I freaked out, called her pediatrician and had her on antibiotics within the hour.

 

Sooo.... here we are 3 weeks later with not as much as a blip in behavior. So...Does my daughter have Pandas? Is she cured? Did the Olive Leaf possibly clear her of some underlying virus that was taxing her immune system? Was this first exacerbation possibly caught early enough to stop the autoimmune process? I seriously don't know what to think. Any feedback would appreciated.

 

I forgot to mention that her 6 year molars were coming in and causing quite a bit of pain during her exacerbation last fall. I was just wondering if that could have had an impact on her immune system at the time.

[MassMom1414]

Hello!

I am happy to see your message and can't wait to hear other memebers thoughts on this. I have been asking myself the same question over the past few weeks. We have a very similar story except for the olive leaf extract part. She has been about 90% better with very minor symptoms for about 5 few months now. We are also about to have some food allergy testing done which could explain the minor symptoms she is having. So now I wonder the same maybe it is not PANDAS?

I am happy to hear that your daughter is doing well. Also in a funny coincidence my daughters name is Hailey .

[Haileymadison]

Hello!

I am happy to see your message and can't wait to hear other memebers thoughts on this. I have been asking myself the same question over the past few weeks. We have a very similar story except for the olive leaf extract part. She has been about 90% better with very minor symptoms for about 5 few months now. We are also about to have some food allergy testing done which could explain the minor symptoms she is having. So now I wonder the same maybe it is not PANDAS?

I am happy to hear that your daughter is doing well. Also in a funny coincidence my daughters name is Hailey .

 

Thank You for the well well wishes. I am happy to hear your daughter is also doing well. I would love to hear your story, pm me and we can compare notes.

 

In my daughters case, she clearly had a classic Pandas exacerbation of symptoms with an asymptomatic case of Strep.

 

It is my understanding that PANDAS is an autoimmune disorder, that children exacerbate due to the antibodies and not the strep itself. This is where I find it so confusing.

In my daughters case, her symptoms clearly went away with the Strep infection.

 

I have been searching the forum for similar stories and yet to find any cases where a Pandas child went on to have another strep infection without exacerbation.

 

I am absolutely thrilled to have survived this round of strep, but at the same time it has left me with so many unanswered questions.

[LNN]

I'm not really the best forum member to respond, but I can say from all my research that the symptoms you describe during your daughter's first episode are not typical of any other non-infection triggered disorder I'm aware of. Kids who have "regular" OCD don't go symptom free. For them, it's not an on/off light switch. The fact that you caught this last infection early may have prevented an immune response chain reaction. That doesn't mean she doesn't have PANS. It just means she's lucky you're her mom!

[smartyjones]

In my daughters case, she clearly had a classic Pandas exacerbation of symptoms with an asymptomatic case of Strep.

 

It is my understanding that PANDAS is an autoimmune disorder, that children exacerbate due to the antibodies and not the strep itself. This is where I find it so confusing.

In my daughters case, her symptoms clearly went away with the Strep infection.

 

I have been searching the forum for similar stories and yet to find any cases where a Pandas child went on to have another strep infection without exacerbation.

 

I am absolutely thrilled to have survived this round of strep, but at the same time it has left me with so many unanswered questions.

 

 

hailey -- first, i am so happy to hear of your daughter's health and wish continued NO symptoms for her! i must also say, that i agree with LLM. what you describe seems quite classic infection-based to me. it may be that she and you are simply 'lucky' that you caught it early and haven't had continued troubles.

 

as for your question of autoimmune vs infection, i think it simply lies in that there is not enough research on the chronic state itself so there is also not enough research of an acute variant.

 

my advice to you would be to remain aware of current thinking and practices concerning pandas. certainly not to the point of being paranoid and worried or even researching and thinking like those of us dealing daily with things; but to the point that you are confident you have a good plan or two in place for 'what if. . . ". hopefully, for her, it may have been a one-time pandas episode without reccurence, but if not, you'll be on your toes for what to do.

 

interesting that you post this now. . . i just saw an old friend of mine that was aware ds has had some troubles and related to strep infection but not so much many details. as i was going into more details, she recalls her daughter had an odd experience with strep many years ago. she didn't think she was sick but she had mild to moderate emotional troubles. a week or so later, there was something about her throat -- still mild. 2-3 weeks later, my friend took her to the doctor b/c she was driving her crazy with upsets. i believe positive culture, am sure they put her abx. a few days later, child totally back to normal. my friend says she remembers the day behaviors started. sounds to me like classic pandas. girl has never had trouble again. when i asked about strep infections, my friend couldn't remember if she'd had one or not but definitely didn't have the issues. for my friend, it's one of those catalogued wierd things -- the entire reason she took her to dr, was emotional trouble; it was not that she was sick and just feeling off b/c of being sick. i don't think there was any discussion of pandas or infection-based behaviors -- the girl was 'off' so in a routine check of general health, they thought her throat could be strep.

 

i wonder how many of similar cases there are, that get resolved and are never diagnosed. dr b was recently quoted as saying, 'it's not a rare disorder, just rarely diagnosed.'

 

perhaps there is an acute form and a chronic form.

 

we have seemed to have lost teeth without big issues. but, there are many here that believe there is a definite correlation between teeth issues and exacerbation.

 

i wish you continued health!!!

Edited October 18, 2011 by smartyjones

[Haileymadison]

I'm not really the best forum member to respond, but I can say from all my research that the symptoms you describe during your daughter's first episode are not typical of any other non-infection triggered disorder I'm aware of. Kids who have "regular" OCD don't go symptom free. For them, it's not an on/off light switch. The fact that you caught this last infection early may have prevented an immune response chain reaction. That doesn't mean she doesn't have PANS. It just means she's lucky you're her mom!

 

Awe...This post brought tears to my eyes. I was just fortunate enough to find this forum in a time of desperation. If it wouldn't have been for the passionate parents on this forum, insisting that I get my daughter swabbed immediately, we most likely be in a much darker place today. I am so very grateful!!! Keep doing what your doing. I promise, you are making a difference in so many families lives.

[thereishope]

Hi, what I noticed with some kids is they do not have as strong intial symptoms if they are on proph abx. Perhaps the combo of being on OLE and catching the first exacerbation so fast is what saved your daughter this time. I am so happy for you! Still, keep vigilant.I wish your daughter and your family continued health.

[Haileymadison]

In my daughters case, she clearly had a classic Pandas exacerbation of symptoms with an asymptomatic case of Strep.

 

It is my understanding that PANDAS is an autoimmune disorder, that children exacerbate due to the antibodies and not the strep itself. This is where I find it so confusing.

In my daughters case, her symptoms clearly went away with the Strep infection.

 

I have been searching the forum for similar stories and yet to find any cases where a Pandas child went on to have another strep infection without exacerbation.

 

I am absolutely thrilled to have survived this round of strep, but at the same time it has left me with so many unanswered questions.

 

 

hailey -- first, i am so happy to hear of your daughter's health and wish continued NO symptoms for her! i must also say, that i agree with LLM. what you describe seems quite classic infection-based to me. it may be that she and you are simply 'lucky' that you caught it early and haven't had continued troubles.

 

as for your question of autoimmune vs infection, i think it simply lies in that there is not enough research on the chronic state itself so there is also not enough research of an acute variant.

 

my advice to you would be to remain aware of current thinking and practices concerning pandas. certainly not to the point of being paranoid and worried or even researching and thinking like those of us dealing daily with things; but to the point that you are confident you have a good plan or two in place for 'what if. . . ". hopefully, for her, it may have been a one-time pandas episode without reccurence, but if not, you'll be on your toes for what to do.

 

interesting that you post this now. . . i just saw an old friend of mine that was aware ds has had some troubles and related to strep infection but not so much many details. as i was going into more details, she recalls her daughter had an odd experience with strep many years ago. she didn't think she was sick but she had mild to moderate emotional troubles. a week or so later, there was something about her throat -- still mild. 2-3 weeks later, my friend took her to the doctor b/c she was driving her crazy with upsets. i believe positive culture, am sure they put her abx. a few days later, child totally back to normal. my friend says she remembers the day behaviors started. sounds to me like classic pandas. girl has never had trouble again. when i asked about strep infections, my friend couldn't remember if she'd had one or not but definitely didn't have the issues. for my friend, it's one of those catalogued wierd things -- the entire reason she took her to dr, was emotional trouble; it was not that she was sick and just feeling off b/c of being sick. i don't think there was any discussion of pandas or infection-based behaviors -- the girl was 'off' so in a routine check of general health, they thought her throat could be strep.

 

i wonder how many of similar cases there are, that get resolved and are never diagnosed. dr b was recently quoted as saying, 'it's not a rare disorder, just rarely diagnosed.' perhaps there is an acute form and a chronic form.

 

we have seemed to have lost teeth without big issues. but, there are many here that believe there is a definite correlation between teeth issues and exacerbation.

 

i wish you continued health!!!

 

 

Smarty, thanks so much for your reply.

 

I assure you that I will vigilant. I have been forever changed by the 2 month episode we experienced last fall. I am already beyond paranoid and will most likely continue to swab a bad mood, (yes..I have been known to do that). I will never take a sore throat, tummy ache or any ache for granted.

 

I am happy to hear that your friends daughter never had any other strep related problems. I just wish there were more similar success stories to read.

 

I also have to agree with Dr. B. I believe that Pandas is under diagnosed. My neighbors daughter has had selective mustim for years. She had her tonsils removed this past summer for recurrent strep infections. She is now speaking. It definitely raised my eyebrow.

[Haileymadison]

Hi, what I noticed with some kids is they do not have as strong intial symptoms if they are on proph abx. Perhaps the combo of being on OLE and catching the first exacerbation so fast is what saved your daughter this time. I am so happy for you! Still, keep vigilant.I wish your daughter and your family continued health.

 

Thanks Vickie. I am not wanting to sound like an OLE salesman, but my whole family have been impressed with its effects. My daughter was sick every 3 weeks last winter. I started the OLE in March and she went 7 months without as much as a sniffle. She didn't have her usual spring and fall allergies this year either. I can't say for sure that it has been the OLE, but something is working.

[Haileymadison]

double post

Edited October 18, 2011 by Haileymadison

[Mary M]

Aye-here's the rub. If I respond to this post with my dd's story I run the risk of causing you great concern with every future illness. But by responding perhaps a reasonable sense of vigilance and proactive treatment at the first signs of trouble will avert future downward spirals. Our dd's first presentation was extreme and sudden and is a very clear representation of classic sudden onset PANDAS. And just as suddenly (by week 8) all symptoms were gone, health was restored without any medical interventions whatsoever. That function lasted for four years. And then, without warning, the symptoms were back, they became fierce and uncontrollable but so many other ideas were offered at that time and PANDAS was not among the top ideas...and so time went by, treatment for autoimmune dysfunction did not take place and the symptoms got worse. Only when we retunred to PANDAS intervention (and we hadn't had to use any of those the first time around) did we begin to make progress. But the process has been painfully slow this time. So our story has a long period of health and function-four years-between two exacerbations (and we most certainly had illnesses in the family and in our dd during that time) and then marked loss of function and full blown PANDAS again that has lasted for two years this time. So don't worry that our story might be yours, but please don't forget PANDAS and be sure to be proactive in the future.

Mary

from Michigan

[Haileymadison]

Aye-here's the rub. If I respond to this post with my dd's story I run the risk of causing you great concern with every future illness. But by responding perhaps a reasonable sense of vigilance and proactive treatment at the first signs of trouble will avert future downward spirals. Our dd's first presentation was extreme and sudden and is a very clear representation of classic sudden onset PANDAS. And just as suddenly (by week 8) all symptoms were gone, health was restored without any medical interventions whatsoever. That function lasted for four years. And then, without warning, the symptoms were back, they became fierce and uncontrollable but so many other ideas were offered at that time and PANDAS was not among the top ideas...and so time went by, treatment for autoimmune dysfunction did not take place and the symptoms got worse. Only when we retunred to PANDAS intervention (and we hadn't had to use any of those the first time around) did we begin to make progress. But the process has been painfully slow this time. So our story has a long period of health and function-four years-between two exacerbations (and we most certainly had illnesses in the family and in our dd during that time) and then marked loss of function and full blown PANDAS again that has lasted for two years this time. So don't worry that our story might be yours, but please don't forget PANDAS and be sure to be proactive in the future.

Mary

from Michigan

 

Mary, Thanks so much for keeping me in reality, lol. I promise to NEVER forget PANDAS. I have forever been scarred. Those 2 months although were milder than most, were very terrifying. My daughter never raged or had what they call the exorcist type symptoms, but to me, watching her fear life was horrible.

 

I will continue to read the forums and keep up with everyones children. I will continue to pray for all of the kids that are still suffering.

 

As for not worrying, it is too late, I have read so many stories, they will always be ingrained in my mind. Unfortunately PANDAS has become my OCD.