As promised, info on PANDAS.
everyone, feel free to move, rearrange, repost, copy, do whatever....
My info is directly from searching posts at the Yahoo "mb12valtrex"
group, names have been abbreviated except for Stan (Kurtz), the group
I am quickly surmising our guy here, Dr. Kenny Bock, is
one of the most experienced, well versed DAN!s on this particular
topic. I will see what he says in his book and post that, too, when I
--- In email@example.com,
Hello, all--Just joined this group and I'm excited to read everyone's story.
We have been doing biomedical things for our 10 yo with Aspergers/ADHD very
slowly and cautiously the past year. We are now ready for our first DAN appt
next week (w/James Biddle in Asheville--
anyone??) and are prepared to do some testing, etc. I have been wanting to try
mB12 and I'm so psyched to hear about the spray as it would be tough to give my
son the shots.
Our son was dx in second grade when outbursts and social issues clearly went
beyond normal boundaries. Up to then he'd had a difficult temperament and
obvious sensory issues but I really don't think he would have qualified for a
dx. I think the fact that we ate a lot of albacore tuna up to that point may
have pushed him over the edge.
He sort of straddles the line between aspergers and adhd. His main issues are
sensory problems, self-control,
impulsiveness, inflexibility, disorganization, attention problems. The ADHD
type stuff has actually worsened a great deal and I am trying to figure that
one out. His social issues aren't that bad and he is very connected,
He is very sensitive to almost everything. His reaction to Rx drugs was how we
got into biomedical in the first place. Things that have caused a neg. reaction
include: supernuthera, TMG (big time), zinc. He does well with magnesium
taurate, multivitamin, omega threes and probiotics and sauna. I am a little
nervous about the mB12.
We also had a fascinating experience with Houston
enzymes: We are not GFCF but did a trial of the enzymes. We expected up to
three weeks of regression; however it kept getting worse for five weeks. At that point we dropped back significantly.
The week we dropped back our son had no autistic issues at all. The theory on
the enzyme group was that we were killing yeast with the enzymes and causing
die-off, which caused the behavior. It was not a repeatable situation since I
couldn't go through five weeks of that to get one perfect week forever!
I am also interested in virus issues. He does seem to match some of the
profiles I've read--he has good almost normal periods and bad periods, he is
better with a fever and on antibiotic. And, going back to the enzymes, another
theory was that the enzymes were killing viruses. I'd like to rule out PANDAS
as well since I've heard it can be linked to increased hyperactivity. He did
have a frequent urination phase that could also be linked to that.
So . . . what are the most important tests we should request?
Welcome. Can you tell me what was going on around the time his second grade outbursts started? (besides the tuna) Any viral infections for example? Strep throat? or Silver fillings?
About the enzymes: I have a strong suspicion your child has fungal overgrowth and
gut. When do enzymes... and bacteria starve and die... then back off... the bacteria stops dying off and leaking out the gut and your child looks OK.. then it starts all over.
I would get on SCD right away (less IGG Comprehensive Food markers from Great Plains or other test) . I do have a starter diet you might want to try. It's http://www.childrenscornerschool.com/diet.htm
. Obviously don't use the vitamins you have
found to be reactive.
Most important tests:
1. IGG Comprehensive 93 Food Allergy by blood (Great
Plains for example). Don't believe
the mainstream when they tell you this test is not worthwhile, I find it to be useful
2. OATS (Organic Acid Test by urine) - Great Plains
or Doctors Data I always learn something important and beneficial from this
3. PANDAS - Funny you should bring that up because some of the symptoms you are
describing sound a little like symptoms of Tourettes and OCD as well, and
PANDAS can directly cause that. That's why I asked you about Strep Troat,
that's usually what triggers it. The tests to ask for are:
ASO (antistreptolysin-O) and AntiDNAse B (not to be confused as it often is by lab
as AntiDNA ds - for lupus). If either is positive, it is often quite treatable.
4. Typical herpes virus PCR and include HHV6, CMV, EPV
That's what I would do.
more thing (silly me).
MB12 Nasal Spray with Folinic will probably do well with your child (even if he
has PANDAS or a herpes type virus). It probably won't help the core issue, but
I've seen it help lower the stress and anxiety we see in the kids with PANDAS
and other viral infections and helps them function better.
Keep us updated.
He did have atypical strep throat in second grade and he's had a few viruses
over the years but I can't say I wrote everything down as to the sequence, etc.
The strep was after we had decided to have him evaluated so I can't say it caused
anything but he could have had something prior to that. At the end of first
grade he started peeing all the time--that is one of the most memorable
"symptoms" of something weird b/c it was so opposite of how he'd been
previously. That's gotten better but
still not back to "normal."
When he was a toddler, though, he had an unexplained high fever of 106. We had
taken him to the doctor a few days earlier and he got some abx for a sinus
infection and then he spiked this fever.
Thanks again, E.
We're a week into Valtrex. Our son's
main response seems to be increased verbal tics or stuttering. Kind of
depressing. Has anyone else seen this go up? More importantly, has anyone seen
this go up and NOT come down after using Valtrex for an extended period?
Oh boy, this is where I got into trouble last time with one of the doctors in this
(disclaimer) I am just speaking from experience with a few children in my
school and in my family. Check with your doctor for real medical advice.
Has your child ever had strep throat?
Sounds like you are kicking up a strep type bacteria. I would do a PANDAS test.
PANDAS is type of strep bacteria that we see in some children with autism that causes
tics and/or tourettes and/or OCD type symptoms. It's typically treated with a
set of shots of Bicillin or oral Zithromax.
I did a quick search on the web and read that 8% of children with autism have tics.
The test I would get are offered by mainstream laboratories. It's an ASO (antistreptolysin-
O) and AntiDNAse B (not to be confused with AntiDNA ds - for lupus)
This information came from a private physician board that I belong to and a discussion
with a director of developmental disorders at the National Institute of Health.
I think the best course of action is to keep going, contact your doctor fill him/her
get the blood work done and hopefully it will have cleared by the time you get your
results back and if not you'll have a secondary course of action based on the test results.
IMO Valtrex doesn't cause tics or stuttering. This is the first time I've heard
speculate it. But, I did a search on the web on Valtrex and tics and spent about
minutes reading and can't find a reference to tics and taking Valtrex. That doesn't
I'm right. If I were you, I would do some reading on the web myself and see what
find or not find and that should help you to decide the best course of action.
But remember, I'm not a doctor... I'm not a doctor... I'm not a doctor... just
a guy sharing
OK, we'll see if that prevents any "Can you believe what Stan just said?
He's acting like a
doctor" emails in the doctor circles that I'm in, which happened the last
time I talked about PANDAS.
Let us know how it goes G.
--- In firstname.lastname@example.org,
We got results from Immunosciences for PANDAS panel. There are three abnormalities with IgM. Does
this mean he has PANDAS?
Meanwhile while on transfer factor and Oral Immunoglobulins(Xymogen) he kicked
up croup-like cough/runny nose/fever/5-6 cold sores on face. He is willing to sleep despite
having slept only 5 hours in the last 30 hours.
We are a little worried today(approaching weekend as well). Left a message for
local DAN. Some words of wisdom would help.
IgG Strep Enzymes 25 (0-100)
IgM Strep Enzymes 56 (0-50)
IgG Step Antigen 22 (0-100)
IgM Strep Antigen 59 (0-50)
IgG B-cell antigen 30 (0-100)
IGM B-cell antigen 40 (0-50)
Myelin Basic Proten IgG 22 (0-88)
Myelin Basic Protein IgM 30 (0-54)
Myelin Basic protein IgA 7 (0-21)
ASIALOGANGLIOSIDE IgG 15 (0-20)
ASIALOGANGLIOSIDE IgG 40 (0-20)
ASIALOGANGLIOSIDE IgA 2 (0-20)
First, I do not know much about raised ASIALOGANGLIOSIDE
except it is an antibody that can be related to neurological functioning. Check with your doctor on that.
As far as the strep results, that looks like enough to start on some (intramuscular
is my suggestion) antibiotics.
PANDAS is the antibody response to STREP that may have an autoimmune response
that can cause OCD, Tics, and Tourettes. The first step is to go after the
bacteria and hope the immune system calms down. If it doesn't there are other steps you can take as well.
Get with your doctor and see what he suggests. I've mentioned doctors (and a team
leader at the NIH) that suggest IM Bicillin.
Let us know how what your doctors says and how it goes.
on Sep. 17, 2008 at 6:20 PM