Age of Onset and How the bacteria gets in

[MomofJacob]

I believe my son was under age 1 when he started having symptoms. What does the scientific research say about age of onset (can it come from birth)? Also, our son had colic, urine infections and was septic before a year. Could the infection had come from nasal/ear infections?

[Stephanie2]

Personally, I don't see why Dr. K says that 18 months is the youngest, and I think the NIMH says 3 years is the youngest. HOW DO THEY KNOW THIS?? Are they going around screening infants for pandas?

 

I KNOW FOR SURE that ds2 got it when he was 15 months, if not sooner. As a baby he would have periodic bouts of chronic irritability. I always chalked it up to reflux, but looking back I wonder. DS5 had his first exacerbation when he was 19 months. Both of my boys have documented strep around those times.

 

Not to mention, I am really starting to feel convinced that I started having pandas episodes coinciding with DS5's first pandas exacerbation (and I got sick with him). I seem to get strep everytime my kids do...I would love to have the CAM K test done on myself, but not interested in coming up with the $400 to do so.

 

So you ask if age matters and I will say that in my house I don't think we fall into the "appropriate" age categories.

[Fixit]

my 3yr old got myco p(thouh no confirmation..did have ear infection that he got treated for and breathing problems he got a nebulizeer for)...i am certain the same time ds started this episode...the cild was 2 at the time..

he became very fussy for 3 months,prior to that very easy going....then kinda snapped out of it

 

he gets fussy off and on...

i'm in the process of getting evreyon tested for everything..so i had his blood drawn for strep,(neg) thyroid..(normal but at extreme hight side..hypothryoidish)..myco...igg (high..double normal range)

 

3 yr old started very slight blink...in bright light, watching tv..late at night.....

i thought ..no, no , no...took to dr a couple weeks ago...made up a story to his getting up all hours of night..and other nonsense....i said please check for strep....(he was actully fine..playing running, got up 1 night, i went to check on him and i just walked out of room as he just fell right back to sleep)...

any who, he had an ear infection...that night gave 1st dose of abx.....next day..the blink lessened markedly....now gone.....

 

so...here we go!!!!!

[kimballot]

My son was also about one year old when we started seeing behavioral problems. He had sinus problems from birth - though they are not even supposed to have sinuses then. Never had positive throat culture, but we had ample reason to believe his tonsils were harboring bacteria. Hang in there. Science may not have caught up with you yet!

[dut]

Hi - I can't prove it but am sure my ds3 started when he was 7 months old at the same time as my dd7's 1st recognised episode.....

[Suzan]

My now 9 yr old got her first strep infection at 16 months old. Soon after she started acting totally nutty. I got that same strep at the time and I think it got me out of whack too.

 

My now 8 yr old got her first strep infection before she was 12 months old. She's been a food hoarder ever since we introduced solid food and she has restricted food since then and her sensory issues began at this time too.

 

They both had chronic ear, sinus, chest and strep infections from a very early age and I am certain now that their first strep infections are what caused things to go downhil. Maybe there was a genetic componet or maybe they had lyme from birth (still looking into the lyme thing) but I know for sure too that they were affected before 18 months old.

 

Susan

[Sylvia]

Age of onset, which criteria my kids did not meet, is the main reason I haven't seriousely pursued PANDAS info/treatment untill now.

 

Both of my kids reacted to their vaccinations - my youngest one especially was text book adverse reaction: fever, projectile vomiting, explosive diarrhea, arched back with high pitched scream (encephalatic cry), etc. They both developed symptoms of autism, but my youngest especially has always had symptoms more consistent with a PANDAS type of diagnosis, such as mania, obsessions, dangerous and bizarre behavior, ADHD, tics, and in the last 3 years, rages of violence.

 

He has been 75% improved since starting long-term antibiotic therapy this summer. Still full syndrome autism and non-verbal, but mostly calm, cool and collected. The rages, hysteria, tics, strange motor movements and other PANDAS symptoms are much, much better. He is 12. I wish we would have considered this years ago, but since they both showed symptoms so early, I dismissed it.

[airial95]

My son had "sudden onset" after an impetigo infcetion at about 18 months old. I think part of the reason the age of onset is hard to pin down is because many of the characteristic behaviors associated with PANDAS are somewhat "age appropriate" for kids under 3. For over 6 months, we didn't seek treatment for the sudden seperation anxiety, rages, violence, and OCD because we thought it was the "terrible two's" and a phase that would pass. All kids go through a renewed bout of speration anxiety at that age, kids react physically at that age since they're frustated verbally, etc... Two year olds by definition like order, things to be just right, and crave ritual and repative behaviors.

 

We were lucky that we had an astute amazing (and VERY patient) day care staff that finally confirmed what we were thinking - something wasn't right. And when we took him in to the ped to discuss, he didn't dismiss us - he looked into every aspect of his behavior - and his records and noticed our emails/questions about our son's extreme behavior conicided with the impetigo he had months earlier. He did a 30 day trial of abx - within 10 days we had a different kid again. We've been on the PANDAS path since.

 

I think it's easy to overlook alot of these things at a young age becuase how much of it is "normal" and how much is something else?

[MomofJacob]

Has anyone suggested ivig therapy for your son?

 

Age of onset, which criteria my kids did not meet, is the main reason I haven't seriousely pursued PANDAS info/treatment untill now.

 

Both of my kids reacted to their vaccinations - my youngest one especially was text book adverse reaction: fever, projectile vomiting, explosive diarrhea, arched back with high pitched scream (encephalatic cry), etc. They both developed symptoms of autism, but my youngest especially has always had symptoms more consistent with a PANDAS type of diagnosis, such as mania, obsessions, dangerous and bizarre behavior, ADHD, tics, and in the last 3 years, rages of violence.

 

He has been 75% improved since starting long-term antibiotic therapy this summer. Still full syndrome autism and non-verbal, but mostly calm, cool and collected. The rages, hysteria, tics, strange motor movements and other PANDAS symptoms are much, much better. He is 12. I wish we would have considered this years ago, but since they both showed symptoms so early, I dismissed it.

[Sylvia]

Yup, we have been doing DAN protocol therapies for over ten years; diet, supplements, anti-fungals, HBOT, etc. But it has only been since early this summer that we have seriousely considered PANDAS and started long-term antibiotics. Antibiotics is kind of taboo in autism biomed land, so it has really been hard to embrace, but I have seen some really promising changes in my youngest, so now I am very excited.

 

With all of the DAN protocol stuff we have done, there has always been ups and downs. My youngest especially would be doing fairly well, then everything crashes. I just wish I had given this more attention many years ago! But when you have autism, all issues and behaviors always get attributed to that, instead of looking at other issues such as PANDAS or lyme. Very frustrating, but this new avenue is also very exciting!

 

Has anyone suggested ivig therapy for your son?

 

Age of onset, which criteria my kids did not meet, is the main reason I haven't seriousely pursued PANDAS info/treatment untill now.

 

Both of my kids reacted to their vaccinations - my youngest one especially was text book adverse reaction: fever, projectile vomiting, explosive diarrhea, arched back with high pitched scream (encephalatic cry), etc. They both developed symptoms of autism, but my youngest especially has always had symptoms more consistent with a PANDAS type of diagnosis, such as mania, obsessions, dangerous and bizarre behavior, ADHD, tics, and in the last 3 years, rages of violence.

 

He has been 75% improved since starting long-term antibiotic therapy this summer. Still full syndrome autism and non-verbal, but mostly calm, cool and collected. The rages, hysteria, tics, strange motor movements and other PANDAS symptoms are much, much better. He is 12. I wish we would have considered this years ago, but since they both showed symptoms so early, I dismissed it.

[Sylvia]

oops, I forgot to add that IVIG was one of the very first "alternative" treatments I considered. I took my oldest to Dr. Sudhir Gupta at UC Irvine in 1999, but based on basic immune panel testing, he didn't recommend it at that time. So then I moved on to the other stuff. But jeez, 11 years ago I wanted to do this!!!! I am trying not to dwell on 'what ifs" right now!!

 

Yup, we have been doing DAN protocol therapies for over ten years; diet, supplements, anti-fungals, HBOT, etc. But it has only been since early this summer that we have seriousely considered PANDAS and started long-term antibiotics. Antibiotics is kind of taboo in autism biomed land, so it has really been hard to embrace, but I have seen some really promising changes in my youngest, so now I am very excited.

 

With all of the DAN protocol stuff we have done, there has always been ups and downs. My youngest especially would be doing fairly well, then everything crashes. I just wish I had given this more attention many years ago! But when you have autism, all issues and behaviors always get attributed to that, instead of looking at other issues such as PANDAS or lyme. Very frustrating, but this new avenue is also very exciting!

 

Has anyone suggested ivig therapy for your son?

 

Age of onset, which criteria my kids did not meet, is the main reason I haven't seriousely pursued PANDAS info/treatment untill now.

 

Both of my kids reacted to their vaccinations - my youngest one especially was text book adverse reaction: fever, projectile vomiting, explosive diarrhea, arched back with high pitched scream (encephalatic cry), etc. They both developed symptoms of autism, but my youngest especially has always had symptoms more consistent with a PANDAS type of diagnosis, such as mania, obsessions, dangerous and bizarre behavior, ADHD, tics, and in the last 3 years, rages of violence.

 

He has been 75% improved since starting long-term antibiotic therapy this summer. Still full syndrome autism and non-verbal, but mostly calm, cool and collected. The rages, hysteria, tics, strange motor movements and other PANDAS symptoms are much, much better. He is 12. I wish we would have considered this years ago, but since they both showed symptoms so early, I dismissed it.