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New eBook: Your Child Has Changed; Should You Consider PANDAS?


Have you seen the ACN Latitudes PANDAS eBookOur helpful book is a 37-page primer in a friendly question & answer format.  This eBook contains useful information to understand the symptoms of PANDAS, how it is diagnosed (including lab tests), the different types of treatments, approaches for prevention, and how to find the help and support that you need. Learn more

 




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did your PANDAS child have a strep infection that you knew of before s


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#1 tylermom

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Posted 25 March 2010 - 03:43 PM

i was just wondering if most of the PANDAS children had a positive strep culture before the symptoms came on? the reason i ask is because my oldest ds who i'm 99% sure is a PANDAS child but has not been dx yet. he did not have a prior strep infection that we know of. he did have several ear infections his first year of life, he also had RSV at 10 months along with bronchitis, he also had lots of sinus infections. he started his weird ways around 14 months which included head banging and being very, very wild and clingy. then at 18 months the tics and OCD started. the first tics were rapid eye blinking and head jerks. this happen suddenly. it started on 10/22/01 around 7 p.m. at night. tics out of no where and happened for about 4 weeks. sometimes he would be tic free for about 1 month in the beginning only to have the tics return or a new tic return. he also starting echoing what we said, like if i said "alec, do you want a drink?" He'd repeat exactly what i said. he also repeated words all the time. his moods were horrible, he'd throw things and get upset for really no reason or if i just calmly told him "no, you can't have any cereal right now" he would totally freak out. he is now 10 years old and was dx with tourette's at 2 years old. he still has tics but they are not as bad as they were when he was little. he does take allergy shots and i think this has helped the tics. he is a healthy child and hasn't had a strep infection that we know of since he was about 5 years old. when he was ages 3 to about 5 he had about 5 strep throat infections. his younger sister had strep from about ages 3 to 7 and probably had about 12 strep infections. she has had some OCD issues at one time. it was in that time period of her having lots of strep throat. it only last about a month and it went away. but she was tired all the time. i thought she had crontic fatigue syndrome but we later found out she had ebstein bar virus. my third child was a baby during all these strep infections that my oldest son, dd, and hubby had and child #3 tested positive for strep in a throat culture at 4 months old. he was sick all the time with ear infections and had bronchitis 2 times. he is now having tics at the age of 4 and has MAJOR OCD and horrible temper problems. his tics have come on suddenly as well. his are vocal (stuttering and snorting) he also repeats certain words over and over. i really thing with my dc's history of strep infections that we're dealing with PANDAS unfortunately our dr.'s have not tested our children for this. now i'm trying to locate a dr. who will test my children. here's my questions:

did your PANDAS child test pos. for strep before the symptoms?

did your PANDAS child symptoms like OCD or tics come on suddenly? if so, were they dx with PANDAS or tourette's or something else?

do any of you have a PANDAS child that was 18 months old or around that age with tics?

what dr.'s that specialize in PANDAS take insurance?


#2 smartyjones

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Posted 25 March 2010 - 04:23 PM

tylermom
i can't answer a lot for you b/c my son doesn't have tics - just extreme behaviors.

he had a positive rapid strep at 22 months - only tested b/c his older brother was positive and then he threw up. otherwise, we would have maybe never known of that strep.
he presented extreme behaviors and a therapist suggested pandas. that's the only reason we did titers and then culture.

we could have tried to treat him behaviorally for years never having known anything about the positive strep, high titers, or sinus infection. so, he was having a serious infection that we knew nothing about b/c he didn't have 'typical' symptoms.

i really wonder how many kids have 'behavior problems' that are infection triggered.

#3 vickie

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Posted 25 March 2010 - 04:35 PM

My son never had strep prior to the one he had when PANDAS surfaced. He had been swabbed before (NOT because of PANDAS like behaviors) and it was always negative.

With my son, he had a sudden onset of PANDAS behaviors. Approx 2 1/2 weeks after the behaviors started we took him to the dr and they did a strep test because she once read about PANDAS (I did read about PANDAS online prior so I fibbed and said he had a sore throat so they would suggest swabbing him). We found out he had strep. Rapid neg, culture positive. My kids do not get symptoms of strep. So the behaviors in my PANDAS son is the only indicator to go in and get swabbed.

My son did not have tics so I can't answer that question.

btw...I think mycoplasma pneumonie is also called bronchitis. myco p is a known original trigger in some kids.

#4 suzan

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Posted 25 March 2010 - 04:40 PM

My girls had strep infections one at 16 months and the other at 12 months old. I am sure those are the infections that started all their issues. They did not get tics or obvious OCD although in retrospect they did have OCD. They probably had sudden onset too but since they were so young, it was not obvious to us. They were initially diagnosed with sensory processing disorder, then possible ADHD and other issues often found with with autism.

susan

Edited by Suzan, 25 March 2010 - 04:40 PM.

Me - diagnosed with hashimoto thyroiditis in 1996, lyme and parsonage turner syndrome in 2010, mthfr mutation in 2013

dd10 and dd11 - diagnosed with sensory processing disorder in 2006, gluten intolerance in 2007, pandas in 2008, lyme in 2010, mthfr mutation in 2013

 


#5 vickie

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Posted 25 March 2010 - 04:43 PM

Here's what I found about bronchitis...

http://en.wikipedia....lasma_pneumonia

Mycoplasma pneumoniae is spread through respiratory droplet transmission. Once attached to the mucosa of a host organism, M. pneumoniae extracts nutrients, grows and reproduces by binary fission. Attachment sites include the upper and lower respiratory tract, causing pharyngitis, bronchitis and pneumonia.


Also, I forgot to add that ear infections and sinus infections can be caused by strep.

#6 fifide

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Posted 25 March 2010 - 04:57 PM

i was just wondering if most of the PANDAS children had a positive strep culture before the symptoms came on? the reason i ask is because my oldest ds who i'm 99% sure is a PANDAS child but has not been dx yet. he did not have a prior strep infection that we know of. he did have several ear infections his first year of life, he also had RSV at 10 months along with bronchitis, he also had lots of sinus infections. he started his weird ways around 14 months which included head banging and being very, very wild and clingy. then at 18 months the tics and OCD started. the first tics were rapid eye blinking and head jerks. this happen suddenly. it started on 10/22/01 around 7 p.m. at night. tics out of no where and happened for about 4 weeks. sometimes he would be tic free for about 1 month in the beginning only to have the tics return or a new tic return. he also starting echoing what we said, like if i said "alec, do you want a drink?" He'd repeat exactly what i said. he also repeated words all the time. his moods were horrible, he'd throw things and get upset for really no reason or if i just calmly told him "no, you can't have any cereal right now" he would totally freak out. he is now 10 years old and was dx with tourette's at 2 years old. he still has tics but they are not as bad as they were when he was little. he does take allergy shots and i think this has helped the tics. he is a healthy child and hasn't had a strep infection that we know of since he was about 5 years old. when he was ages 3 to about 5 he had about 5 strep throat infections. his younger sister had strep from about ages 3 to 7 and probably had about 12 strep infections. she has had some OCD issues at one time. it was in that time period of her having lots of strep throat. it only last about a month and it went away. but she was tired all the time. i thought she had crontic fatigue syndrome but we later found out she had ebstein bar virus. my third child was a baby during all these strep infections that my oldest son, dd, and hubby had and child #3 tested positive for strep in a throat culture at 4 months old. he was sick all the time with ear infections and had bronchitis 2 times. he is now having tics at the age of 4 and has MAJOR OCD and horrible temper problems. his tics have come on suddenly as well. his are vocal (stuttering and snorting) he also repeats certain words over and over. i really thing with my dc's history of strep infections that we're dealing with PANDAS unfortunately our dr.'s have not tested our children for this. now i'm trying to locate a dr. who will test my children. here's my questions:

did your PANDAS child test pos. for strep before the symptoms?

did your PANDAS child symptoms like OCD or tics come on suddenly? if so, were they dx with PANDAS or tourette's or something else?

do any of you have a PANDAS child that was 18 months old or around that age with tics?

what dr.'s that specialize in PANDAS take insurance?


Hi Tylermom,

My DS4 had scarlet fever (caused by strep) one month before he got knee pains, then 1 week after that he woke up with tics never having had any before. He had already had a course of penicillin but still tested positive (swab) for Strep on the day the tics started (we went straight to the hospital they were so dramatic). We don't have a diagnosis from the Dr's here in the UK (they really don't like the PANDAS diagnosis!) but he fits all the criteria and I have no doubt that is what he has.
THings had settled a bit in January this year until he got a 2nd (swab confirmed) strep infection in February this year. He is now on long term penicillin. This time the emotional aspects are worst , although the tics have been pretty bad too.

He was just 4 when this all started. He has a pretty bad temper too, which he never had before at all.

The dr's do think the tics are caused by the strep.

Fi

#7 johnsmom

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Posted 25 March 2010 - 05:40 PM

My son is now 8. He was diagnosed PDD-NOS at age 5. He had pink eye at the age of 1. He began to have a fettish with my hair right after that. It lasted a few months. How old are your children and do you think it has been PANDAS all along? I would like nothing more than to get rid of the 'autism' label!!! We see DR K next week for our 1st appt.
johnsmom


My girls had strep infections one at 16 months and the other at 12 months old. I am sure those are the infections that started all their issues. They did not get tics or obvious OCD although in retrospect they did have OCD. They probably had sudden onset too but since they were so young, it was not obvious to us. They were initially diagnosed with sensory processing disorder, then possible ADHD and other issues often found with with autism.

susan



#8 suzan

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Posted 25 March 2010 - 05:53 PM

My son is now 8. He was diagnosed PDD-NOS at age 5. He had pink eye at the age of 1. He began to have a fettish with my hair right after that. It lasted a few months. How old are your children and do you think it has been PANDAS all along? I would like nothing more than to get rid of the 'autism' label!!! We see DR K next week for our 1st appt.
johnsmom


Yes, my children were never officially diagnosed on the spectrum but especially my youngest dd had all sorts of issues that made going to a Dan! doctor very useful for us (gluten intolerance, seizures, mitocontrial markers, malabsorption, gut issues, impulsive, I'm sure others that I don't remember). I do think it is a combination of pandas and gluten intolerance (possible celiac). They are now 7 and 8 years old. They had chronic sinus, ear and chest infections and lots of strep. GOOD LUCK with your appt with Dr. K!

Susan

Me - diagnosed with hashimoto thyroiditis in 1996, lyme and parsonage turner syndrome in 2010, mthfr mutation in 2013

dd10 and dd11 - diagnosed with sensory processing disorder in 2006, gluten intolerance in 2007, pandas in 2008, lyme in 2010, mthfr mutation in 2013

 


#9 tylermom

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Posted 25 March 2010 - 06:08 PM

it's very interesting reading how some of your dc's PANDAS symptoms came on and how some did not have a strep test at the time of symptoms. it really should be manditory for all pediatricians to test for PANDAS in any child that presents sudden onset of tics, ocd, bad behaviors, etc. but thats just not the case. looking back to my first ds who had a sudden onset of tics i often wonder if he was sick a few weeks prior to that. now that it's been 8 1/2 years i really can't remember if he was sick a few weeks before the onset of the tics. i do know that he had had his MMR and chicken pox shot about a week before the onset of tics so i have always wondered if that had anything to do with him starting the tics. of course the dr.'s all say absolutely not but then again most of them do not believe in PANDAS either. i really, really wish there would be more research on PANDAS and more talk about it on t.v. or Parents Magazines, etc.

jennifer




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