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Do I Have PANDAS on the brain or is it possible... my other son might


sf_mom

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Rise in Autism is 3 fold: Rise in vaccinations, reduction of antibiotic use and rise in preschool/day care.

 

Why is it that in other countries the Autism rate is like 1:2,500 and 1:96 in some areas of the US.

 

-Wendy

 

 

 

but wouldn't it be weird if it turned out that "the rise in autism" was all just misdiagnosed/untreated pandas???
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As Margo would say.... when we were kids 'YOU KNEW YOU HAD STREP' you could hardly swallow. Today strep can pass as an ordinary sore throat.

 

I'm not thinking it screwed up your immunity...I'm thinking if you had a genetic predisposition to strep-related illnesses such as RF or PANDAS, taking antibiotics protected you. RF is thought to be a result of 3 things: 1--untreated/not properly treated strep, 2--genetic predisposition, 3--the correct strain of strep.

 

Yup....I agree.

 

I also wonder if 1-2 generations ago doctors were better about testing for strep as well? I just think it's ridiculous that neither of my kids were EVER tested for strep until March 08 (a 7.5 year old and a 5 year old) when we insisted (b/c we had just learned about PANDAS)...and both were postive! Every fever they ever had was always presumed viral. Ughh.

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As Margo would say.... when we were kids 'YOU KNEW YOU HAD STREP' you could hardly swallow. Today strep can pass as an ordinary sore throat.

 

It's like strep evolved...perhaps the strains of strep that caused really bad sore throats were eliminated (b/c of testing/antibiotic tx). The strains that didn't cause bad sore throats then proliferated (b/c they tended to go untreated.)

 

But some kids do get the sore throat...our friends who slept over at our house (2 weeks b-4 our dd was hospitalized b/c of PANDAS) got strep throat from our household (sore throat 3-4 days after sleepover, positive for strep). It's just my kids that didn't have the sore throats (even though both ended up being culture positive)!

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Now that is strange!!! Thankfully, my son did have a sore throat this past illness... BUT not when he was exposed to Scarlet Fever.

 

As Margo would say.... when we were kids 'YOU KNEW YOU HAD STREP' you could hardly swallow. Today strep can pass as an ordinary sore throat.

 

It's like strep evolved...perhaps the strains of strep that caused really bad sore throats were eliminated (b/c of testing/antibiotic tx). The strains that didn't cause bad sore throats then proliferated (b/c they tended to go untreated.)

 

But some kids do get the sore throat...our friends who slept over at our house (2 weeks b-4 our dd was hospitalized b/c of PANDAS) got strep throat from our household (sore throat 3-4 days after sleepover, positive for strep). It's just my kids that didn't have the sore throats (even though both ended up being culture positive)!

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Correct and his friend was positive for strep the next day but this was not communicated to me at the time. HOWEVER, my son illness shortly thereafter was 'very extreme' and not typical of just strep throat 'no sore throat' or typical of Scarlet Fever... he showed more signs of Kawasaki's with pink eye in both eyes and fever for an extended period of time. We did not test him for strep and he did get better on his own... it was 6 month later that he got his first TIC and antibiotic for cough/clearing of his throat (so a delayed response or possibly another exposure to strep). Our other son, who was hospitalized at the time also did not have ALL the typical Kawasaki's symptoms but he was treated for it anyway due to heart ventricle damage. They convinced me at the hospital that my other son 'at home' was fine and that they didn't believe Kawasaki's to be viral/contagious. AND, our son's friend never had a sore throat and it took almost 8 months to resolve swollen gland from the Scarlet Fever. They tried many, many courses of antibiotics..... finally pulled his adenoids and the swollen gland resolved. They mentioned possibly doing IVIG for him but didn't.

 

The poor guy now.... stairs away when you talk to him, has anxiety around transitions, mood switching, separation anxiety, talks about wanting to kill himself, regressed in potty training issues, sensory sensitivities, unable to do homework, held back in kindergarten, joint pain and headaches. He was recently referred to an OT and just guess what they would have diagnosed him with?

 

To me, they never resolved the underlying infection at the time for our son's friend.

 

 

 

 

 

Now that is strange!!! Thankfully, my son did have a sore throat this past illness... BUT not when he was exposed to Scarlet Fever.

 

Scarlet Fever is just a rash caused by a strep exotoxin- your son was exposed to strep on that occasion.

 

http://en.wikipedia.org/wiki/Scarlet_fever

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I think that once you know one of your children has PANDAS you have to look more closely at the siblings b/c knowing that one has PANDAS gives you that advantage of possibly catching any siblings symptoms much quicker which enables to you treat faster.

 

My three oldest children have PANDAS. I did not do Cunningham's tests on my youngest who is 3, but wish I had and still may. I am not completely sure yet if he has PANDAS, but I am very suspicious. This is notto say that all siblings in all families will have PANDAS, but it is something to be vigilent in watching for signs in the others.

 

Colleen

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There is a definitely rise in IEP's at school. In a kindergarten class of about 90 children, I believe 15 have IEP's! They said it's the highest they ever had entering kindergarten. All those kids were identified prior to 5 years old and received services through Early Childhood. God know show many there will be by the end of the year once more children are identified as the year passes.

 

Note..the reason for IEP's vary. They are not all autism. They comprise of any reason the child would need to receive services. OT, speech, autism, diasbilities....However, for our district, you have to be "bad off' to get services. So 15 in the start of kindergarten is very high.

 

but wouldn't it be weird if it turned out that "the rise in autism" was all just misdiagnosed/untreated pandas???
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The time he had strep with the pink eye was before we knew about pandas but in hindsight yes, he had sigs of pandas. This was when he was 4 years old. He had no sore throat, no obvious strep signs. The dr. decided to swab for no reason other than that he had pink eye... the dr. didn't seem shocked that it was positive so I wasn't either. She treated him like she would treat anyone with strep, a 10 day dose of antibiotics which cleared the pink eye as well... didn't need the drops.

 

That year was the year that strep was rampant in my house... it was the first year that any of us had known strep. Prior to that my ds had eye blinking at the age of 2... dismissed as normal tic but at the age of 4, the same year as the pink eye and strep was the year my ds started with handwashing (not enough to affect his life but enough that I made not of it... if he washed before eating he had to rewash if he touched something before the food) and also the year he started hoarding garbage (wrappers, clothes tags)..we dismissed that as almost funny and just a phase because I didn't know any better and both the washing and the hoarding stopped almost as suddenly as it started. I wish I could remember if it stopped after he was on antibiotics for the strep but I really wasn't paying attention to that because I had no clue it was connected.

 

He has now been positive for strep on many occassions... but never once had typical strep symptoms... never a sore throat. I didn't have my AHA pandas moment until he was 6 and started having sudden sleep anxiety combined with frequent urination right at the time that my daughter had strep... somehow something I typed into the computer brought me to pandas and I read it and just knew.

 

 

erica,

and he had no symptoms of sore throat or redness, etc? did you know he was PANDAS at that time? any increase in symptoms during that time? what was the treatment?.........(I'm still educating myself, <_< )

 

 

Faith

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thanks erica,

I'm still trying to figure things out, namely put all the "early years" together. I'm pretty sure my son had some pink eye somewhere when he was youngr, I gotta look thru his records (I had the docs office give me a copy of his file), but who can read all that scribble? :huh: I know we had that tobramycyn drops a couple times. I am not aware of him having strep any time, and everytime I am on the hunt, he swabs negative. <_<

 

 

Faith

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I also think lowered Vitamin D levels (possibly pre-natally, possibly in infancy) due increased use of sunscreen and more time inside may be playing a role. http://www.scientificamerican.com/article....in-d-and-autism There's lots more out there if you google vitamin d and autism.

 

I also personally believe the hygeine hypothesis (we're too "sanitary" nowadays, kids aren't exposed to enough germs as infants so their immune system doesn't get properly "trained" and they develop allergies, autoimmune dz's as children) explains at least some of the rise in autism. Here's a paper on that: http://www.grc.nia.nih.gov/branches/rrb/dna/pubs/aaihh.pdf

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