Nids

Hi all,
First, i ant to say that JJ is still doing good on the risperdal. But
this has been going on before we started the risperdal and I believe it
has to do with his anxiety and agression. Thru-out the day JJ will have
what "Looks" like an involatary nervous "tic" like things. its hard to
explain. Out of the blue he will clinch his hands together and make a
little 'tic' like movement. Its like a "startled" movemment you would
have when someone has come up behind you and scared you. but it happens
thru-out the day and it also seems to be what triggers a lot of his
agression. does anyone have any suggestions? Thank you in advance. Lois
(JJsmom)

Excellent letter Ginger! Kathy R

It is one little piece of NIDS, but a focus of researchers at the NIMH.
This is from the website below. She has the best collection of available
info.
Despite the title graphic, PANDAS has nothing to do with bears. PANDAS is an
acronym for Pediatric Autoimmune Neuropsychiatric Disorders Associated with
Streptococcal Infections. Another acronym that appears less frequently in
the literature is PITANDS (Pediatric Infection-Triggered Autoimmune
Neuropsychiatric Disorders).
http://www.tourettesyndrome.net/pandas.htm

you can contact the office of. Dr. Susan Suedo, at the National Institute of
Mental Health and they will send you for free copies of their studies, etc.
It is Pediatric Autoimmune......something something.

Hi Cheryl, could you also tell me what Pandas stands for? Thanks, Michelle

Cheryl,
thanks for getting back to me! Yes, i had JJ on a small dose of paxil for about
3 months (4cc's) It helped in the begining BUT his anxiety got real bad.
Mostley at school. He was hitting, throwing and crying everyday at school. I
just started him on risperdal (0.25mg) a week and a half ago and its like WOW!!!
They said he had a grat week at school. No hitting, throwing or crying! The sp
said he was like the old JJ she remenber before the anxiety took over. and at
home he was his smiley self again. I hope we get those Immune modulators soon
too. Lois(:

Cheryl,
Hi! So what all are you doing for your child right now? Educational,Meds?
Thanks, Lois

Hi Lois,
He's a NIDS kid and is following the NIDS protocol now. Medically he has
made tremendous progress. Having his educational needs met has been the
problem. Before treatment for NIDS there was nothing that kept my son from
disintegrating each year. Whatever doctor we were seeing at the time would
end up excusing my son from school due to medical reasons. He kept getting
such severe symptoms shortly into the school year that attendence became
impossible. He would completely shut down and it would get to the point
that he was in an out of control rage within 30-60 mins in the classroom, he
would go into such severe OCD and the year before last year he had all the
symptoms that the NIMH lists for PANDAS. Until last year I thought that the
AS/OCD involved problems with about everything but strep and/or bacteria.
Last year we were able to keep him from developing into full blown OCD by
adding antibiotics to his regimen.
Right now he is on the NIDS diet, antiviral, antifungal, antihistimine,
Kutapressin, Intal, Nasalcrom, low dose SSRI.
I know that you have been posting questions on the SSRI's. With my son
there seems to be a very fine line between what is helpful and what causes
problems. I think from what I remember your son is fairly small. My son
probably is about 3 times bigger, yet we can only go as high as about 7.5mg
of Paxil. Last year we had raised his dose to about 10mg. It seemed to be
tolerated, but then we started on antibiotics and trying to find what form
he would tolerate. To make a long story short, we found that some problems
he was having with an increase in sensory issues, moods, went away when we
reduced back to 7.5. We recently tried to switch to Prozac to see if it
would help the school related anxiety. It was hard to figure out because in
some ways there seemed to be improvements, but not the anxiety, it was
actually worse. Since it was hard to tell if it was possibly too low of a
dose, we increased. Not only did the anxiety get worse, but he was also
having an increase in sensory problems like last year. He starts to refuse
to touch certain types of paper because he says it makes him shake.
Imagine how well that would go over with teachers when the school believes
that there is nothing wrong except lack of school attendance) We switched
back to the 7.5mg of Paxil. Our kids can certainly be called one big
puzzle. I am waiting for the day that we have the immune modulators!!!!!
But until then I will continue with what I know is giving my son a shot at a
more normal life.
Cheryl

Ginger,
I understand exactly what you are saying. I realized my son was medical
about six years ago. My biggest regret is that it took me so long to find
out about the infection part. I also didn't know that I had a child on the
autism spectrum. Then things became really muddy at the age of 6-7 when his
illness progressed into OCD. Between the handwashing increase in sensory
problems and the severe oppositional behavior/mood swings/fear, that come
from the dysfunction in that area of the brain, it was really hard to figure
things out.
What I did know was that it was "NOT" a mental illness, was "NOT" behavioral
and I was "NOT" going to stop fighting for that wonderful little boy that I
had glimpses of from time to time. It was heartbreaking to watch him
disappear, year after year.
Until last summer, I had no idea there was a form of highly verbal autism.
I had never read anything on Asperger's. Once I started reading about it I
knew that if you wanted a diagnosis to describe my son, that was it. I
realize that his development is off from a medical problem, but without the
diagnosis I lost a whole year of services that could have helped my son. I
was dealing with a school psychologist that could not get his focus off of
"behavior", he refused to consider anything different, completely discounted
all the evidence of developmental problems in their own records.
I finally took my son for an evaluation at the Regional Center. I could not
stand to watch so much critical time being lost. All the stress my son and
I were dealing with because of this. With treatment my son is at a much
higher level of awareness, he could now tell me how things were from his
perspective. He now cared about the problems at school, which never would
have happened with a little understanding and support. He then was at a
point that the stress was overwhelming, which then would contribute to
problems. I try to think of it as waking up sleeping beauty. Imagine
having parts of your brain asleep for ten years and having no knowledge of
all the things that have gone on, but everyone having the expectation that
you do because you are awake now.
I thought that having my son diagnosed with AS would finally clear up the
confusion. Wrong!!!! Believe it or not, the school psych doesn't agree
with it. The school then decided to push an evaluation with the Supt of
Schools to try to discount the diagnosis.
I have been attending school with my son since it started a month ago. I
was absolutely not going to put either of us through that again. I decided
that until this is settled I really have no choice. Thankfully there is a
"light at the end of my tunnel." The SOS psych agrees with the AS diag. He
has spent alot of time with and watching my son at school. He said my son
is really smart and has so much more going for him than alot of AS kids he
has seen. His opinion is that my son is way too high functioning for
anything but the regular classroom with an appropriate IEP. He feels that
with the right support and help that my son has the potential to be a highly
successful adult. My son is now being evaluated by the SOS specialists.
They are doing a speech and language (school refused to follow any of Dr.
Fosnots suggestions), OT/PT/SID, a behavioral specialist to look at the
social skills, etc., they are looking at everything.
I really didn't want to stick my son with a developmental label, but face
it, his development is way off. Until this is documented and well-known as
a true medical condition by the schools, the labels are what they use to
provide or deny services. There is nothing more frustrating than watching
the clock ticking on an older child (11) that you have watched coming out of
the fog, developing emotions of true love, caring and so many changes, yet
needing so much remedial help and therapy to reach his true potential.
Cheryl

The recent developmental neurotoxicology was perhaps a first for
autism. The conference was not an "autism" conference but
instead included two posters and abstracts focused upon autism
in regard to thimerosal (vaccinal ethylmercury).
The conferees represented several vectors: academia,
governmental agencies, chemical industries, independent labs,
and several syndrome-specific groups (eg, autism, silicosis).
As might be expected, industry and some (but not all!!!) people
within govt agencies wanted higher "safe levels", whereas folks
concerned with chemical/metal-induced syndromes wanted lower
"safe levels" and more research on susceptibility to low-dose
exposures (such as the silicon compounds that coat McDonald's
french fries).
Compared to the DAN and Orlando conferences, the neurotox
conference was small (<150 persons), but that was fine since
people asking questions were given ample time.
I was able to present autism/thimerosal and autism/mercury
concerns as well as shift several entire discussions in the
direction of how to evaluate susceptibility to low-dose
exposures such as those experience by kids injected with
thimerosal during vaccinations. On several occasions, I was able
to make a link from molecular experiments and rat and primates
manipulations, to humans and even to human children re: autism
(which was an easy connection for the group, because many had
been following lead and methylmercury exposures for years.
I believe that the conference and its various presentations
about autism (posters, conversations with numerous researchers,
etc, and discussions during question periods) has helped raise
interest in what might be some of the environmental factors that
contribute to autism etiology and, where possible, that can be
treated (whether by acyclovir, foscarnet, amino acids, or
chelation).
My poster summarized the work of Amy Holmes, MD, and Stephanie
Cave, MD, while giving credit to Stephen Edelson, MD -- each of
whom has focused upon chelation, especially of mercury (be it
vaccinal? or environmental) and (perhaps indirectly) in signs
and med history aspects that point towards why a given child has
detox problems that allow the accumulation of CNS mercury.
At one point, I talked with Leslie Ball, MD (FDA thimerosal
defender) and told her about Dr. Holmes success in Baton Rouge
with a large cohort of autistic children (re: chelation and
strong improvements). I suggested the NIH ought get a team to
Baton Rouge to see for themselves what has been working. Dr.
Ball's response was so typical, stating that anecdotal
information (such as 100+ kids making major improvements) was
not important unless rooted in placebo/controls-etc (and all the
time delay and bureaucratic rigamarole therewith). In a perfect
world's pure-science, perhaps Leslie's officious approach would
be acceptable, but if a well identified therapy is working for
many kids NOW!, then someone in the NIH ought accept this
reality and help document and expand the process nationwide
asap.
Regardless of Leslie's go slow (and ignore huge anecdotal data)
approach, the is something very special about presenting autism
to a group of neurotoxicologists -- which is a very different
process from the traditional autism conference (which themselves
are very important, though in different ways).
So, that's a first report about the Neurotox conference.
Teresa
some thimerosal info:
http://www.jorsm.com/~binstock/thimerosal.htm

Dear Malibu 805:
Until you really get into NIDS, most people in and around the autism
world continue to look at these children as
developmentally/behaviorally/mentally challenged. When you do the
bloodwork and start the meds you have agreed to cross that line.
Once you see the changes in your child (however slow) and see the
bloodwork improving and see the difference between what one anti-
viral versus another anti-viral (or other NIDS meds) can do for your
child - it is like seeing your child clearly for the first time.
Kind of like the sun breaking through the clouds. I will never
forget that feeling -- that I was NOT crazy and my child was NOT
mentally ill and that something could be done about it!! What a
release/relief. Once you see your child that way, you can never go
back. Her temper tantrums looked completely different to me then.
They were not just about lack of communication skills or sensory
issues (although those were present, too), it was also about her
interior system PHYSICALLY responding inappropriately and that
represented a negative domino effect on her entire world. I will
never think of my daughter in the same terms again.
Even though she is not totally healthy yet and people still question
what I am doing and shrug their shoulders when I tell them about Dr.
Goldberg, I will never go back across that line. If Michelle has not
crossed that line, how can she see her child in that light?
Ginger

Would somebody please tell Michele Guppy that her son is not mentally ill. He
is physically ill.

Last night, Dr. Goldberg recommended the book "The Virus Within : The Coming
Epidemic" by Nicholas Regush. I read a bit about it on amazon.com, but I am
wondering if anyone on this list has read it and what your thoughts are on
it. I would love NIDS feedback because I am trying not to spend money where I
cannot afford to. Thanks, folks. Becky

Becky, Get the book from your public library. They usually have things like
that, even if you have to be on a waiting list for a while.

anxious (to say the least) to hear success stories.
We started seeing Dr. G. 4 years ago when my son was 6. He was just
starting the 2nd (repeat) year of kindergarten. The first year he
kind of bounced off the walls, we were going to repeat it with the
same teacher and 50% time in special ed room. As a result of working
with Dr. G. Ryan began to learn, and talk more (He had very little
words at that point.) and we saw and continue to see gradual
improvement in all areas. When we got the end of that kindergarten
year, we placed him the following year in 2nd grade vs. 1st as he
caught up academically. He did fine and now is in 5th grade. He does
the regular work and is an A and B student. He spends 80% of his time
in the regular class. He has an aid accompany him sometimes to help
focus and redirect him. He still need to work on writing and social
skills, but he has come a long way. He is very bright and I will not
let anyone lower their expectations for him. I expect him to go to
college, and will the right direction now, that can happen.
If you have seen the Dr. G's NIDS conference presentation with
the "little Abraham Lincoln" speaker labeled "autistic - not!" that
is my son in 2nd grade! We are proud of my son and want to give him
the help he needs. Dr. G. has done so much for my son. Ryan was "old"
for starting this protocol, and we did not do any ABA, we just did
not have the resources, but the results are great, but you need to be
patient as some changes you do realize are happening, until you think
back and say, "Wow, he is not doing that anymore...". Good Luck :)
Sorry so long!!

I am wiping the tears from my eyes. That is the most beautiful
piece. An absolutely heart wrenching, wonderful story. I would love
to share it with others. Is it published? Thanks for sharing.
-Noelle

Michelle,
I've found over the years that "success" has a million tiny definitions for
our kids. While our boys have just started with Dr. G, I did want to share a
piece of writing with you that I tought might make you smile--yes, I write
about autism :c). I hope this helps...I know how it is on those days you
feel you can't see the light--any small success helps.
~~
A Litany of Worries
My six-year old daughter's eyes glittered with fury as she shook her fist at
the boy who shoved her little brother into the sand. "Don't touch him, he's
special," she said through gritted teeth. One look Gina, hands planted
firmly on her hips, was enough to send David's would be attacker scurrying
away.
Gina's fair hair whipped about her face as she reached down to hug her little
brother. "Don't worry. You'll get your voice back."
David is autistic. By the looks of it, my five-year old son may never speak
other than to say "Mama." Gina has named herself her brother's protector,
and she exhibits a feral devotion to David.
Gina looked up from the sandbox and told me that the Sea Witch from Disney's
Little Mermaid stole her brother's voice away, and that it was her job to
find it.
I count myself lucky that Gina has appointed herself as David's advocate.
But I worry about the size of the load she has chosen to carry. She spends
much of her time looking for somewhere to place the blame for her brother's
condition. The Sea Witch seems the perfect scapegoat. After all, she stole
Ariel's voice. "She must have taken David's, too, Mommy."
Every night when David goes to sleep, Gina begs me to take her outside and
let her talk to the stars. It's our special time together and we stand side
by side, arms wrapped around each other while she searches for the perfect
wishing star.
Finally, she chooses. Gina steps away from me, turns her wide eyes up to
Heaven and whispers her wish, which is always the same. "Please, God, let
David get his voice
back." I hold Gina close and hard, hiding my tears. She is so full of
selfless hope at an age where she should be wishing for teddy bears and tea
parties.
I tuck Gina into bed and begin my nightly ritual of worry. Worries are my
litany, and of them I have many. Worries about David. About Gina. About
how difficult the road ahead might be for them. About dashing my daughter's
hopes for her brother's eventual recovery. About limiting my son with this
elusive label he wears: autism. I wonder, sometimes, if my little boy can
even comprehend how much we love him. I roll the rosary beads between my
fingers, praying. "Let my son have a happy life." I am afraid to pray for
anything more.
Gina tip-toes into my room and slides under the covers with me. I can tell
by the way her mouth forms a straight line across her face that something is
troubling her. Gina spoons herself up next to me and scoots in as close as
she can. "What's wrong, honey?"
"Will the Sea Witch take my voice, too?" Her voice is tiny, and tight, as if
she is about to cry. I bury my face in her hair, and try to tell her, again,
that no one stole David's voice. That David learns differently from us, and
how our words must sound to him like what it does to Gina when our
housekeeper speaks to her in Spanish.
Gina nods her head and is silent. I rub the smooth skin of her back, and
soon her breath is slow and regular, as if she is sleeping. Suddenly, she
turns to me and says: "I bet the Sea Witch put David's voice in a clam
shell. Can we go to the ocean tomorrow?"
"No," I laugh. "It's still too cold out."
"But maybe we can go to the pet store? David would like that." The far away
look in Gina's eyes tells me that she's contemplating something of monumental
importance. Still, I tell her yes. She needs more yes's in her life. Gina
smiles, turns over on her tummy, and is asleep in seconds, leaving me to
wonder what my child is dreaming up now.
I've tried so many things to spark David's interest in others. My son shows
no desire for a relationship with anyone other than me. He is content to
spend his days at the kitchen table, rolling his matchbox cars back and
forth, over and again. I don't recall ever seeing him play with anyone else.
The only thing David likes better than rolling cars is riding in them. Gina
knows this and she also knows that showing David his shoes is his signal that
we are going out today. I see, as Gina dangles David's shoes between him and
his cars, that she hasn't forgotten my promise to take her to the pet store.
Gina whispers something in David's ear as I pry his feet into his shoes.
We spend an hour in the pet store, Gina's face pressed to the cages, as she
laughs at the puppies. David stares, oblivious to the bouncing balls of
fluff, at the flickering of the florescent lights. His stroller reaches the
end of the row of puppies. David sits up and giggles as a tiny black puppy
bangs paws the cage.
"Mommy, that's the one, that's David's friend," Gina squeals.
My daughter's plan is suddenly clear to me. She has brought us here to find
a friend for David. The last thing I need is a puppy added to the whirlwind
of our lives. Still, David shows interest. He stands in his stroller and
laughs.
I turn away, wistful. How can I possibly make room for a dog in our life?
Who's to say that David would ever take notice of a pet for longer than these
few minutes?
"It's a lot to think about, Gina. A dog needs lots of care."
"Please, Mommy?"
The earnest sincerity in my daughter's face nearly overwhelms me. Still,
there is more to owning a dog than her mind can comprehend at this age.
"I'll think about it," I promise, half hoping that Gina might forget this one
particular scheme to help her brother.
The dog goes unmentioned all day. I am relieved, but I can't relinquish the
image of my son laughing at the antics of that little dog.
The last rays of the sun are slanting through the blinds as my daughter comes
running down the hall. "Mommy, Mommy. Look!"
She drags me by the hand down the hallway to her room. David is sprawled out
on Gina's bed, surrounded by a sea of stuffed dogs-toys that he has never
touched or shown the remotest interest in before. His small hands try to
make the toy dogs walk. David's experience this afternoon obviously made an
impact on him.
The next morning, we own the black ball of fluff and Gina cheers all the way
to the car.
David watches the puppy's antics from the safety of his kitchen chair for
hours. As he watches the puppy romp with Gina, a whole array of expressions
crosses his round-cheeked face. Surprise. Interest. Laughter. Smiles.
But still, David makes no move to touch the dog. As if intuiting David's
reluctance, the puppy makes no obvious gestures towards my son other than to
kiss his ankles as they dangle from the kitchen chair. If nothing else comes
of this, I think, David's giggles are reward enough. I silently promise not
to expect anything more..
Our first day with the puppy that Gina calls Mikey has passed in a flurry of
delighted squeals. Gina falls asleep chattering about how happy her brother
is with Mikey to protect him.
David lays on the couch, sausage rolled in his favorite fleece blanket.
Mikey jumps, ever so gently, into the crook between David's outstretched hand
and the back of the couch. As his lids flutter towards sleep, his index
finger strokes the silky fur of the puppy's paw. David is rewarded with a
kiss to his palm. A gentle half smile forms on my son's lips. He sighs
deeply, buries his face in his dog's side, and laughs.
David has found a friend. I have found peace in Gina's realization that in
spite of David's difficulties, he is still a little boy who can bask in the
love of a dog. Suddenly, David the autistic has taken a back seat to David
the child.
My litany of worries is lighter by one.
copyright 1999, Traci Yates-Poff, excerpt from "On Mended Wings: Life Lessons
Learned from my Autistic Sons."

Did you give your son real cheese on that pizza?

I know about the drug but what have the health care practitioners said to her
as to why it would be a good choice for her son. The problem with giving
general information without knowing the specifics is that you can mislead
someone without that intention. Kathy R

Hi all,
First I want to thank everone that wrote to me about the risperdal. JJ
has been on it5 days now. 98% of his agression is gone!!! He is acting
like my old JJ!! The SP at school said JJ is acting more alert and more
like the "old" JJ she knew. And He ate Pizza tonight!!!! JJ is 12 and
would NEVER eat pizza before!! I just thought I would update you all on
him. No side effects yet either. Lois

Michelle,
The brain response is probably caused by the cytokines in the immune system
and could be a result of any trigger be it viral, fungal, or whatever. The
medication die off lasts for what seems like forever but is actually on the
average about two weeks. Why the decreased perfusion occurs is an interesting
question but one that does not have a definite answer yet. Kathy r

Yvonne, You would think that but many manufacturers of margarine sneak a
little casein in them. I think they do it for flavor. Kathy R

Isn't that the truth!

The problem with dairy products are the protein not the fat. Antigens by
definition are any substances that stimulate activation of the immune
response and reacts with an antibody or a sensitized T cell. They are divided
into two groups: complete protein antigens and low-molecular-weight antigens.
Fat does not fall in either of those groups. It would probably be better for
the American public if you could be allergic to fat. At any rate we use pure
butter and whipped cream. The so called nondairy whipped toppings have casein
in them which is precisely what you are trying to avoid. You have to read
your labels even with whipped cream because some brands have skim milk in
them. I have a recipe for whipped topping made with Rice Dream but have never
tried it. It would be far better than whipped cream in terms of cholesterol
but I'm sure not the same! Kathy r

Great idea. I will try it! Kathy R

Hi all,
My friend has an adult son with autism. they just put him on Desyrel.
has anybody know anything about this drug? She is not on the internet
and I will print out anything I get to give her. Thanks a lot!!! Lois

Hi, Dr Goldberg's information has reached Western Australia which is
where we are. I have been following the list for a few months now
but only wish I had known about it years ago. We are nearing the end
(I hope) of our journey. We had already done all the hard work with
our 2 boys with ABA and had them to the recovered stage before we
found out about Dr Goldberg and his protocol. We can only think now
of how much easier it may have been had we been doing both together.
Because we already had the boys to such a great stage we did not feel
it necessary to have the blood work etc. done or to try the
medications (neither are an easy thing to do here in Australia) but
we have had one son on a gluten/casean/sugar free diet for the last 3
years under recommendation of his naturopath and it has made a huge
difference, the other son luckily does not have problems in this
area. We found out about NIDS through a conference Dr Goldberg spoke
at in Australia on the latest information on autism which we
purchased tapes of as we were wanting to have another child and
wanted to know the latest information. It was because of Dr
Goldberg's information that we decided to "risk it" and now have our
12 month old boy on a gluten/casean free diet just in case. And
that's all about us.
Jenny

If private speech and OT are the only therapies at this point, it may help to
try some therapy to address the social aspects to get your child more
confident in group or individual interactions. We did all you have described,
but also did 6-8 hours per week of Greenspan's floor time and/or play dates
with friends. That helped tremendously, and was time better spent that speech
therapy.
Charles

Hi. Can someone whose child is or was a patient of DR. Goldberg's clear this
up for me? My son is a 4y old autistic who has been progressing steadily with
diet and ABA . I want to do his protocol, but I have a few questions- If his
bloodwork comes back positive for viral{roseola etc.} or fungal, and say his
neurospect scan shows decrease bloodflow, is this because of the virus or
fungus? If so, when treating the child with Kutapressin, Valtrex, or Famvir{I
am sure I have misspelled these}, the child may go through a regression
period. Does the meds eventually help increase the bloodflow ? If not, what
does increase it? Lastly, do most of these children get sick very often
giving the parents reason to believe they are a candidate for the NIDS
protocol? Thanks for any answers!!! Michelle

I invite you to join Autism-Software.egroups.com
Kids with Autism are usually highly visual and can benefit enormously from a
home computer. However, there is a lot of over-priced and over-rated
software out there with very little reinforcement and limited educational
value. The best software allows you to edit information, enter new
teaching material and vary reinforcement. The software must also be easy
to use.
The first message from the moderator will describe a package called
Labeling_Tutor, a versatile piece of software on CD into which you can enter
almost anything you wish to teach a child from Alphabet, Categories, Sounds
(including your own voice), Phonics, Words - just about anything you want
the child to learn. The program works on the Discrete Trial principles and
keeps a record of the child's work so he/she doesn't get frustrated with
repetition of trials. You can even tune the system according to your
child's ability eg. change the mastery criteria. There is also more to
share on touch screens via which tots of less than 2 years of age can sit on
the parents lap and learn without having to wait until they can master a
mouse (a feat for some adults).
This group was created to share information on harnessing the power of the
home computer to aid parents, therapists and consultants in their therapy
with kids with Autism. The list is open to everyone. Please join.
To subscribe, go to Autism-Software-subscribe@egroups.com
Good luck with your kids!

Hi - I am new to this site. My daughter is 7 and we have been with
Dr. G for 16 mos. She is in a regular 1st grade with an aide; home
program 4 hrs a week; private speech and OT; Meds (Valtrex,
Kutapressin, Diflucan, Prozac, Claritin, Nasacort AQ, Feosol, Poly-
Visol); also on diet. May start cranial-sacral therapy next.
We have seen good progress (with some ups and down - changed to
Famvir and back, Prozac to Celexa to Paxil and back to Prozac,
Diflucan to Amphoteracin B and back). She does great academically
one on one, okay reading skills, great math. Does not really respond
in a group yet, still have to work to get and keep her attention when
distracted, doesn't like to say hello to people. Good parallel play
skills and a great sense of humor. Anyone else out there like this
or have a child who used to be like this!! I feel that we should
have moved faster and she should be clearer at this point. My gut
feeling is that we will get her as clear as possible and pray for the
new neurotransmitters that Goldberg had promised.
I love this kid to pieces (and my other two) -- any suggestions as to
how to make this more efficient??? (besides patience!) There are
five families in this area who are doing Goldberg's protocol. We
would love to hear status/med level on other kids (especially those
who have been down this road and are at a good point with their kids
and can offer advice on what worked for them). I don't feel that any
combination of therapies will ever work for all our kids, but the
more we compare notes, the more efficient I think this "parent"
system can become. I am from the Livonia (Detroit), MI area. Sorry
for length of post.

Butter has milk solids in it -- that is why when
melted there is something one can clarify out of it.
My DH and DS are both lactose intolerant and both
avoid butter or take lactase if there is a
question(and suffer if they don't).
"Margarine" includes a wide variety of products, a
number of which have either milk solids (that's
brilliant) or hydrogenated veggy fats, which are
unhealthy.
The spreads to look for are generally the ones in tubs
(not as hardened) that have oils you are comfotable
with. There is an olive oil one, but it has lactose.
We use a canola based spread, but I have heard
problematic things about canola oil for men. There
are also some fairly expensive spreads designed to
lower cholesterol.
Doris
Life is too complex to expect simple answers

Could anyone give me a pediatrician or allergist or immunologist referral
in the Denver/Front Range area? (My son is 9 and has lots of allergic
symptoms as well as concentration problems with school work).
Thank you!
Rosemary

I have been with Dr. G for four years. We are in Greenville South
Carolina and one of our children, a son who is 7 years and 9 months is a
NIDS child.
Mercy

Muki--
Since you and I had talked off list, I think everyone on the list would
tell you no matter what you do, you should not let negativism by others
or the "establishment government" people (speaking either for the
government or for themselves), ever, ever get you and your family down.
Keep us informed!
Bob Brown in Missouri

I have been on this list for over a year and my son has been a patient of Dr.
Goldberg's for almost four years. I have been curious where many of you
reside so I can learn how wide spread NIDS information goes.
We live in Spokane, Washington. Where do all of you live? Becky

Although it does include casein, Galaxy Foods makes a great butter substitute
made from organic tofu called "Veggie Butter". It is low fat, contains
protein, a tastes really good when spread on bread for toast (rice bread
needless to say).
This is a great product if your child isn't horribly sensitive to casein (my
son isn't). To find a distributor in your area, go to www.galaxyfoods.com
Incidentally, Galaxy Foods makes a fantastic American cheese substitute
(again has trace amounts of casein) which is also made from organic tofu. It
is really indistinguishable from Kraft cheese slices without the chemicals
and preservatives. I use it to melt with "butter", "milk", salt and pepper to
make a very palatable macaroni and cheese (using rice elbows). You can find
most of the Galaxy Food products in the Tofu section of regular supermarkets.
Becky

The scientific argument for using Bethanecol can be found at
http://home.att.net/~pediatricaac/HYPOTHESIS/MEDICAL_HYPOTHESIS_ARTICL
E.html which is Mary Megson, MD's website. She is the doctor that
made the Vitamin A difficiency - Cod Liver Oil - Bethanecol link.
People considering using Bethanecol should contact her office and to
have her office send you MD a copy of her protocol.
For those arguing that Bethanecol is not a cure, I would reply that
SSRI's are not a cure either. Both, however, may help in NID child
developmentally.
Jeff

There is a list of butter substitutes at
http://www.gfcfdiet.com/Dairysubstitutes.htm
Regular butter does contain some proteins, including casein, which is
why it should be avoided. Clarified butter is kind of like boiled
butter where the fat and proteins could be separated. It is 100% fat.
Margarines are high in fat content but differ in their types of fat
as some are made with hydrogenated oils vs. partially hydrogenated
oils and non-hydrogenated oils.
FWIW
Jeff

Thanks to all those who responded to me. Yes it is encouraging to now be
dealing with a child trying to speak two languages as opposed to not
speaking at all. Yes we still wonder (especially when surrounded by a
pessimistic establishment who do not hold out much hope for improvement)
if maybe if we had stuck to just one language Shaked's speech would be
doing better. And yes we still have a long long long way to go, but the
NIDS protocol is making a difference for us.
On a separate note (and perhaps also slightly off topic) on some of the
other lists I subscribe to they have done a "roll call" where all readers
have supplied information about themselves, eg adult/child's name,
diagnosis, treatments done, duration, progress, current challenges etc. I
would like to get to know more of the other readers on this list (around
400 according to egroups), and think that we can all gain from finding
others that have grappled or are currently grappling with the same issues.
This could also form the basis of an answer to the frequent request for
success stories from new subscribers to the list. Is this an acceptable
idea ?
Muki

Margarine doesn't have any protein!!? Both butter and margarine are 100% fat.
Yvonne

just go for the Goldberg low allergy diet. My son also was allergic, or
sensitive to everything. After three years we had him retested and the
whole panel just moved over to the less reactive column. It was really
strange. An immune system that is off is just reacting to everything,
friend or foe. As you take steps to calm it it will react less.

Hi. We just got back Jeffrey's lab report from Meridian Labs via Dr.
Goldberg. He is allergic to just about everything. I'm wondering if
any of you have had a similiar situation and, if so, what did you
feed your child. Also, how valid is this test, any chance of false
positives (I guess I hope there may be some)? How can I be sure
these results are accurate? Should I do another type of testing?
Assuming these results are in fact true, what on earth do I feed
him? (No beef, rice, corn, soy, wheat, dairy, beans, etc. etc. etc.)
Thanks for your help. -Noelle

<
Why would you substitute anything for butter? Pure butter has not protein in
it but most of the time margarine does! Kathy R
butter is much better for you than trans fatty margarine.

Kathy R:
Butter is made from a cow, which is a dairy product. I just assumed it would
be something good to avoid. All Dairy Products was advised by our doctor.
His name is Dr. Goldberg. Do you eat butter &/or your children?
Michele D.

O.K., you guys are confusing me again. :) I remember this subject coming up
once before. It was my understanding that butter was a no-no. I think
someone mentioned clarified butter as possibly acceptable, but we completely
avoid butter. A recipe under the do's and don'ts of diet lists dairy-free
margarine.
I think the subject came up during a chat. The question to Dr. G. was about
eating chicken that had been basted with butter. If I remember correctly he
said it probably would have mostly melted/cooked off so may not have caused
a problem.
What I use is a non-hydrogenated spread from Trader Joes........its called
Earth Balance, they also have another butter substitute that's pretty good.
Cheryl

Kathy, I agree! I read a description of how margarine was made and haven't
touched it since. Talk about a ton of additives, not to mention dyes. If
people prefer the spreadability of margarine, mix butter and canola oil (1:1
ratio) in a blender and refrigerate. Tastes great AND has less saturated fat
than regular butter. Linda

Why would you substitute anything for butter? Pure butter has not protein in
it but most of the time margarine does! Kathy R

Jenny,
Your experience with neurofeedback is very interesting. I would love to
know more if you don't mind responding again. Can you describe the process,
the type of changes you are seeing with your child, and the appropriate
minimum developmental age for this?
Thanks,
Connie

If you treat the child systemically then the
problems with the pancreas, thyroid, gut, etc., are also being
treated. We
really need to get away from the idea that this is a
neurodevelopmental
condition and focus on the fact that it is a disease and has to be
treated as
such. Kathy R
The second Brain, by michael Gershon is a good book on our two brains
the one in our head and the one in our bowel each must cooperate for
each system to work properly.

Just so everyone is CLEAR, yes, bethanechol has this effect for about
6 hours. That is why it is typically given BID. The child still
spoke, with a lower dose. The other positive effects which persisted
were: better GI (no loose bowels, better eye contact, improved
socialization). What I have heard from knowedgeable physicians is
that the kids ween themselves off the dose. That is to say, if they
start out at 10 mg BID, after a few months, they may only need 2.5 mg
BID and they don't LOOSE SKILLS and the GI tract remains "improved".
It has been reported to me that children have been on this drug
without ill effects for 3 years straight.
I have no financial interest in bethanechol, and I certainly will not
knock a drug that works for some kids. I don't need to remind anyone
on this list how "pleasant" it is trying to explain to you ped,
developmental ped, gastroenterologist, and neurologist why your child
has been on systemic antifungals for 6 months....Certainly those of
us
doing the NIDS protocol need to keep an open mind to other reputable
research work. It should not escalate to an "us versus them" but
rather one for all and all for one. We all have the same objective;
to help our loved ones.
Bottom line for me is that if it takes a totally nonverbal kid to
verbal, then I'm THRILLED for the family. This is what works for
them. We shouldn't pass judgement because their protocol happens to
be different from ours IF IT WORKS, is not snake oil, and is not
harming the child. If anyone can find a peer-reviewed article in a
scientific journal on why bethanechol should not be used, I'd be
happy
to see it and pass it on to the folks doing the research on this
drug.
Just my two cents, no flames please :oD
ann

In a message dated 9/21/00 5:39:20 AM Pacific Daylight Time, isoaa@...
writes:
Nucoa Margerine. And it is cheap!
Tina Hendrix
<< hi all:
can anyone give me the best tasting non-dairy butter substitute available at
local grocery stores or health foods?
thank you.
michele d.

i think it is very individual.. I have a 13 year old who does well on Paxil
but Risperodal made him hyper; but for some it works.

Hi all,
My JJ is 12 and for the last 6 months he has been having alot of
anxiety. I had him on Paxil and that made it worst. This new Dr. that I
have wants to start him at o.25 and work him up to o.5mg of Risperdal.
She said because JJ is going thru puberity that he feels "Scared" inside
and this should help him. OK! Now I would like to hear good-bad about
this med. Opinions??? Please let me know what you all have found out
about this med. Thank you alot!!! Lois (JJsmom)

No, it is not. Urecholine has its place in urinary retention and atony of the
bladder with retention. It has to be very carefully administered and
monitored. It is used with precaution in children under 8. Kathy R

Hi Trina
We have a son who had a previous diagnosis of Autism who is still
left with some residual learning/attention & dietry problems whom we
have just started on neurofeedback. The centre we are taking him to
have a large amount or autistic kids on their books and say they have
an 80% success rate. They say it takes at least 40 sessions with
autistic kids to get a reasonable outcome. We have had about 15
sessions and have definitely now noticed changes and so has his
teacher. Should you require any further information please email me
direct as it is "off topic"
Jenny

my autistic son. One is EEG neurobiofeedback. The other is using
Piracetam.
feel could be helpful for my son. He had a neuro spec scan and it
showed decreased blood flow to his brain.

Fleishman's unsalted (the salted variety has casein) is probaby the best,
although none of them taste anything like butter.

Something to add - the 10 year old spoke in sentences, but after a few
hoursthe effect wore off, and he went back to being the way he was before the
bethanecol. What a crushing disappointment that must have been.

Does anyone know if the urecholine by prescription is at all similar
to the supplement choline available in heath stores?

hi all:
can anyone give me the best tasting non-dairy butter substitute available at
local grocery stores or health foods?
thank you.
michele d.

Kathy and others
First off, I am not a doctor and this is NOT medical advice.
Bethanechol is NOT a new drug; it has a long history of use, and has
in fact been used in infants for reflux(a condition frequently
observed in the ASD population). The drug is very inexpensive.
Dr. Megson brought bethanechol/urecholine to the limelight a little
over a year ago when she was on tv with several of the families she
treats. Part of her protocol sometimes involves the use of
bethanechol. It is my understanding that her testing PRIOR to even
considering this drug certainly rivals that of Dr. G. in terms of
getting the COMPLETE clinical picture.
If you look at the history of bethanchol useage, it was used BRIEFLY
to treat speech disorders (also frequently observed in the ASD
population). For those interested, you can find Dr. Megson's website
at www.megson.com. I believe her hypothesis is posted on ARI's web
site as well.
The attention on bethanechol was, I believe, largely due to results
she observed in patients who suddenly "spoke" after administration. I
believe the case in her paper involves a 10 year old "mute" who
suddenly started speaking in complete sentences with complex language
afte the first administration. Literally 40 minutes after the first
administration. I have no idea what dose she used. The actual dose
is determined by weight and has been published in many places. When
the child was "on" he verbalized feeling "alive"; seeing colors for
the first time. I do not think this is a typical response, and
again,
I have no idea of the dose she used on this child, but she did report
that she titrated down to 12.5 mg (not sure if QD or BID) and the
effects were no where near as dramatic, but the child continued to
speak and make progress.
Bethanchol works because it directly stimulates cholinergic
receptors,
mimicking the action of acetylcholine. Acetylcholine is a
neurotransmitter that conducts electrical impulses between nerve
cells
as well as from nerve to muscle. Some of us have seen that
neurotranmitters (dopamine/epineprine) are almost as dysfunctional as
the immune system in our kids. There are certainly credible doctors
out there using probably using bethanechol for this reason. I do
know
of one physician using this both in his practice and in his IRB and
is
seeing some really good results, particularly in the GI area. Does
it
work for every child? I have absolutely no clue. Does it interact
with SRRI's? I'm not sure, but I ran it through micromedix and did
not see interactions for most of the common SRRI's, but that doesn't
mean there are no contraindicated drugs. The "drug of the day" seems
to be aricept which works by blocking an enzyme called
acetylcholinesterase which then works by increasing the acetycholine.
The fact that two independant physicians/researchers are finding
some
really dramatic results by essentially increasing ACH makes you
wonder
if there might be a subset within the ASD population where
neurotransmission issues might be an issue for the manifestation of
ASD. Again, I do not know the answers, but I think the latest
findings of Drs. Chez and Megson warrent further investigation.
Hope this helps!
ann

Subj: The Infection-Chronic Disease Link Strengthens / 100% Infected
with HHV-6
Date: 9/19/00 6:33:47 PM Pacific Daylight Time
From: feat@... (FEAT)
Sender: FEATNEWS@... (FEAT Daily Newsletter)
Reply-to: <A HREF="mailto:feat@..."
To: FEATNEWS@...
FEAT DAILY NEWSLETTER Sacramento, California http://www.feat.org
"Healing Autism: No Finer a Cause on the Planet"

Thanks, Elyse, for all of your e-mail HHV6 info. I forwarded it to Lenny
Schafer at the FEAT Newsletter yesterday. This was in the FEAT newsletter
today! Please include him on your list for NIDS info. His newsletter
reaches thousands!
Tina Hendrix

I am very proud of my NIDS child, 13 who is bilingual french/english. I
think he got sick later, around three, and had already gotten some language
under his belt. In fact my daughters are bilingual as well, but need french
school to maintain their french, whereas my son has learned so much
language from us he is bilingual even in a special ed american school.
Although this is a little off topic I think it demonstrates how smart our
kids are! -- Original Message -----
From: <muki@...
To: <NIDS@egroups.com
Sent: Wednesday, September 20, 2000 4:44 AM
Subject: [NIDS] Off topic: - Bilingual

ADDHelpline is having a chat tonite with author Kathy Noll about teaching your
children how to deal with bullies and being teased.
Hope you can join us
9pm-10pm eastern time
http://addhelpline.homestead.com/index.html
eileen
addhelpline@...
http://go.to/addhelpline
"Together we can make a difference in the lives of our children."

Anyone else raising a NIDS child in 2 languages ? When Shaked was not
talking it was not a problem but now that his speech is blossoming in our
home language, which is not the public language, we are grappling with the
issue and would be interested in hearing from others that have been this
route.
Since this is off topic please email me directly.
with thanks
Muki

I think the question is what does Dr. Goldberg think. Drug interactions would
be my first consideration, not only how the drugs interact with each other
but what is the combined effect on the brain. I would be particularly
concerned about combining with SSRI's. What NIDS drugs is your child on now?
Kathy R

Trina,
You describe perfectly the language difficulties my now five year old son was
experiencing last year.
Although most people assume PECS is for children who are non-verbal, we found
it to be the best "structure of language" tool we could have ever found for
our rather verbal four year old. In three months, he was constructing
picture icon sentence strips with appropriate "sentence structure". We have
now reduced his icons and faded them into words--the added bonus is he's now
beginning to read.
I swear by PECS, and use it with both of my children. It has given my
non-verbal son a means of communicating his wants and needs (no more
tantrums!!!!), and given my verbal son a way to "put his words together"
appropriately. Most of our children are visual learners and I believe that
is why PECS made it so much easier for our son to learn where to place the
noun, the verb and the adjective!
for more information on PECS, you can visit www.pecs.com. We implemented the
program at home. After our school district saw my sons using it so
effectively, and realized how inexpensive the program is after the initial
start up, they implemented it at school. YEAH!
Another good program is teach me language, but it does require the ability to
form "wh" questions and provide yes/no responses. We're just now starting it
with our five year old.
Good luck to you!
Traci

Hi again,
My son is 7. Let me preface by saying we spent 3-4 years in speech therapy and
stopped because he never learned one single word there. He has learned
everthing he can say and do in ABA.
However, here is his problem. He often knows what he wants to say, but does not
know HOW to say it or what words to put together to say it.
For example, yesterday he was wanting the "forbidden" computer CD that I had
hidden in the cabinet in the kitchen. (it is forbidden because he so severly
stims when he plays it) He came up to me and said, "Mommy, I want to reach",
"Mommy, I want high (the cabinet is up high)", "Mommy, I want white" (the
cabinet is white). Of course, I knew what he was trying to say, and thank God
he WAS TRYING.
Is this apraxia, central auditory processing disorder, or what? Because we are
not currently getting "speech therapy", although everything we do in ABA is
centered around him using his words and talking, I do not know what to call
this. And then, how do we address it?
Thanks,
Trina

Hi everyone,
Sorry for the mulitple postings, but I don't want to miss anyone.
There are two things I have been mulling over in the last year for my autistic
son. One is EEG neurobiofeedback. The other is using Piracetam.
Both are being used for other diagnoses, ADHD and Down's, but I feel could be
helpful for my son. He had a neuro spec scan and it showed decreased blood flow
to his brain.
I want to know if anyone has used either on their AUTISTIC kids?
Trina

I am very curious as to why you would use a cholinergic stimulant on a child
with NIDS. Does you child have neurogenic bladder? This is not usually found
with NIDS. Who prescribed this and why? It is always interesting to hear
about new things but this one does puzzle me as this drug is normally not
used with children particularly under the age of 8. Kathy r

We would like to remind you of this upcoming event.
NIDS Chat
Date: Tuesday, September 19, 2000
Time: 7:00PM - 9:00PM PDT (GMT-07:00)
***Dr. Goldberg regrets that a prior committment will prevent
him from participating this this weeks chat.***
Join NIDS Online Chat on Tuesdays at 7PM Pacific (10PM Eastern).
Use MIRC (connect to server 209.250.26.159 port 7000) and join
#NIDS, or go to www.neuroimmunedr.com, go to Conference, click
on Conference Area, log-in, click on CHAT (top menu).

I have a question regarding Bethanecol dosages. Is anyone else using
Bethanecol on their children? If so, I would love to compare notes. My 8
year old has been taking it since June with a lot of significant improvement.
I, however, tend to be from the "more is better" school of thought and am
wondering how to know when to increase the dosage. Any response will be
appreciated. Margie

An Immunoblot Assay for Detection of Immunoglobulin M Antibody to Human
Herpesvirus 6.
LaCroix S, Stewart JA, Thouless ME, Black JB
State of Washington Public Health Laboratory, Seattle, Washington.
Clin Diagn Lab Immunol 2000 Sep;7(5):823-827
We identified the human herpesvirus 6 (HHV-6)-dominant immunoglobulin M
(IgM)-reactive virion protein as being the same 101-kDa protein (101K)
previously identified as the major IgG immunoreactive protein and a specific
serologic marker of HHV-6 infection. An immunoblot assay (IB) to detect
HHV-6-specific IgM antibodies against the 101K protein in human serum
samples
was developed. The assay was validated by using acute- and
convalescent-phase
serum collected from children under 2 years of age in which we previously
detected IgG seroconversion to the HHV-6 101K protein. Of 32 serum pairs
which
previously demonstrated IgG seroconversion to the 101K protein, 29 had IgM
reactivity to the same protein in the acute-phase sample and the remaining 3
had
reactivity in the convalescent-phase sample. We also detected HHV-6 IgM
activity
in sera collected from individuals
seropositive to measles or rubella. Results of cross-adsorption studies
using
measles virus-, rubella virus-, and HHV-6-infected cells as the adsorbing
antigen indicated no cross-reactivity between measles or rubella IgM and
HHV-6
IgM in human serum samples. The IgM IB detected HHV-6-specific IgM antibody
to
the 101K protein in 78% (63 of 81) of tested acute-phase serum collected
from
young children with an undifferentiated rash illness by using a single serum
dilution.
PMID: 10973462

Encephalitis caused by human herpesvirus-6 in transplant recipients:
relevance
of a novel neurotropic virus.
Singh N, Paterson DL
Veterans Affairs Medical Center and University of Pittsburgh, Thomas E
Starzl
Transplantation Center, Pennsylvania, USA. nis5+@...
Transplantation 2000 Jun 27;69(12):2474-9
BACKGROUND: Human herpesvirus-6 (HHV-6) is a neurotropic virus. Encephalitis
is
a significant clinical manifestation of HHV-6; however, sparse data on this
entity exist in transplant recipients. METHODS: Cases of HHV-6 encephalitis
reported in the literature (13 bone marrow transplant recipients and 1 liver
transplant recipient) were reviewed. The diagnosis was established in all by
viral isolation and/or detection of HHV-6 DNA in the cerebrospinal fluid by
polymerase chain reaction or histopathologic method. RESULTS: HHV-6
encephalitis
occurred a median of 45 days (range 10 days to 15 months) after
transplantation.
Mental status changes, ranging from confusion to coma (92%), seizures (25%),
and
headache (25%) were the predominant clinical presentations. Focal neurologic
findings occurred in only 17% of the patients. Twenty-five percent of the
patients had fever; however, the height of fever (< or =40 degrees C) in
febrile
patients was striking. Cerebrospinal fluid pleocytosis was generally
lacking.
Abnormal neuroimaging findings, characterized by low-attenuation lesions in
the
posterior cerebral lobes, were present only in 17% of the patients. Overall
mortality in patients with HHV-6 encephalitis was 58% (7 of 12); 42% (5 of
12)
of the deaths were caused by HHV-6. Cure was documented in 7 of 8 patients
who
received ganciclovir or foscarnet for
4) in
those who did not receive these drugs or received them for < 7 days (P=.01).
CONCLUSIONS: HHV-6 may be associated with encephalitis after transplantation
and
warrants consideration in transplant recipients with encephalitis of
unidentifiable etiology.
PMID: 10910264, UI: 20365634

The predictive value of uvulo-palatoglossal junctional ulcers as an early
clinical sign of exanthem subitum due to human herpesvirus 6.
Chua KB, Lam SK, AbuBakar S, Lim ST, Paranjothy M, Koh MT, Lee WS
Department of Medical Microbiology, Faculty of Medicine, University of
Malaya,
Kuala Lumpur, Malaysia. chuakb@...
J Clin Virol 2000 Aug;17(2):83-90
BACKGROUND: The clinical sign of uvulo-palatoglossal junctional (UPJ) ulcers
was
first noted in 1983 in a 5.5-month-old baby with exanthem subitum (ES). An
earlier prospective clinical study showed that there was a strong
association of
UPJ ulcers and occurrence of ES with a positive predictive value of 95.3%
and
negative predictive value of 100%. OBJECTIVE: To determine the value of
uvulo-palatoglossal junctional (UPJ) ulcers as an early clinical sign of
exanthem subitum (ES) due to human herpesvirus 6 (HHV 6) infection. STUDY
DESIGN: A case-control study of 20 febrile children with UPJ ulcers versus
26
febrile children without UPJ ulcers. These children were followed up for any
development of ES and investigated for human herpesvirus 6 (HHV 6) as the
causative agents of the febrile episodes. RESULTS: In this study, 20 out of
46
febrile children aged 3 months to 3 years with UPJ ulcers were virologically
and/or serologically confirmed to be due to primary HHV 6 infection. The
rest of
the 26 children without ulcers did not have HHV 6 infection. Of the 20
children
with UPJ ulcers, only 17 of the 19 children with adequate follow-up till
subsidence of fever developed ES. None of the 26 children without UPJ ulcers
developed ES. CONCLUSION: Statistically, there was a significant association
of
UPJ ulcers as an early sign of ES with a positive predictive value of 89.5%
and
negative predictive value of 100%. This finding also suggests that the
presence
of UPJ ulcers is a useful pathognomic clinical sign of symptomatic primary
HHV 6
infection.
PMID: 10942088, UI: 20395536

Invasion by human herpesvirus 6 and human herpesvirus 7 of the central
nervous
system in patients with neurological signs and symptoms.
Yoshikawa T, Ihira M, Suzuki K, Suga S, Matsubara T, Furukawa S, Asano Y
Department of Pediatrics, Fujita Health University School of Medicine,
Aichi,
Japan. tetsushi@...
Arch Dis Child 2000 Aug;83(2):170-1
METHODS: A total of 43 children with neurological signs and symptoms were
enrolled in the study. All children were suspected of having meningitis, and
lumbar punctures were performed. Human herpesvirus 6 (HHV-6) and HHV-7 DNA
was
detected in cerebrospinal fluid (CSF) and peripheral blood mononuclear cells
(PBMC) by nested polymerase chain reaction. RESULTS: Most patients had
detectable serum antibody to both HHV6 and 7. HHV6 DNA was detected in PBMC
of
15 patients and in CSF cell pellet of seven. Corresponding figures for HHV7
were
28 and 6.2/7, and 5/6 with CSF viral DNA also had it in PBMC, respectively.
No
viral DNA was detected in CSF supernatants. The seven HHV6 CSF viruses were
all
variant B. CONCLUSION: These data suggest that HHV-7 may invade the CNS.
PMID: 10906030, UI: 20365804

Human herpesvirus-6 associated encephalitis with subsequent infantile spasms
and
cerebellar astrocytoma.
Rantala H, Mannonen L, Ahtiluoto S, Linnavuori K, Herva R, Vaheri A,
Koskiniemi
M
Department of Paediatrics, University of Oulu, Finland.
Heikki.Rantala@...
Dev Med Child Neurol 2000 Jun;42(6):418-21
A 14-month-old girl presented after 3 days of fever, floppiness, and diffuse
urticarial exanthem. She developed encephalitis and carditis and 1 week
later,
intractable seizures. Initial CT and MRI showed no changes in the brain
parenchyma. On days 14 and 34 after the onset of symptoms, a human
herpesvirus-6
(HHV-6) genome in cerebrospinal fluid was identified by polymerase chain
reaction (PCR). Convulsions became more frequent and 11 weeks from the
onset,
they changed to typical infantile spasms with hypsarrhythmic
electroencephalogram. She gradually lost her social contact and ability to
walk
and sit. Eleven months after the primary infection, a repeated MRI of the
brain
revealed a cystic tumour of 2 cm in diameter near the vermis. The tumour was
surgically removed, and shown to be a pilocytic astrocytoma on
histopathological
examination. HHV-6 DNA was detected by PCR in new tumour tissue. This is the
first reported case of HHV-6 encephalitis associated with carditis,
infantile
spasms, and a subsequent brain tumour containing the HHV-6 genome.
PMID: 10875530, UI: 20331785

Human herpesvirus-6 and -7 infections in children: agents of roseola and
other
syndromes.
Leach CT
Department of Pediatrics, University of Texas Health Science Center at San
Antonio 78229-3900, USA.
Curr Opin Pediatr 2000 Jun;12(3):269-74
Human herpesvirus-6 (HHV-6) and -7 (HHV-7) infections typically are silent
or
manifested as mild febrile illnesses including classic roseola. In addition,
case reports and epidemiologic data support the rare occurrence of HHV-6
encephalitis in immunocompromised as well as immunocompetent subjects.
Although
many other diseases have been putatively associated with HHV-6 or HHV-7,
these
associations are not well documented due to small numbers, use of tests
incapable of distinguishing latent from replicating virus, potential virus
cross-reactivity, or contradictory results. Further careful studies are
needed
to confirm these disease associations. Laboratory tests for diagnosing
active
HHV-6 and HHV-7 infections include virus culture, antigen detection, and
polymerase chain reaction of cell-free biologic fluid. Although HHV-6 and
HHV-7
are inhibited by several antiviral drugs in the laboratory, including
ganciclovir and foscarnet, no clinical trials have assessed their benefit.
Nevertheless, treatment may be considered for patients with serious HHV-6-
or
HHV-7-associated disease confirmed with accurate virologic tests.
PMID: 10836165, UI: 20295872

The spectrum of human herpesvirus 6 infection: from roseola infantum to
adult
disease.
Stoeckle MY
Weil Medical College of Cornell University, New York, New York 10021, USA.
mystoeckle@...
Annu Rev Med 2000;51:423-30
Human herpesvirus 6 is the causative agent of roseola infantum, a generally
benign rash illness of infants. Most persons acquire HHV-6 infection by age
2
years, and HHV-6 infection is a common cause of fever and febrile seizures
in
infants. In adults, primary infection with HHV-6 can produce a
mononucleosis-like illness and, more rarely, severe disease, including
encephalitis. In addition to primary infections, HHV-6 can cause clinical
illness during reactivation, particularly in immunocompromised persons.
Publication Types:
Review
Review, tutorial
PMID: 10774474, UI: 20236289

Epidemiology of human herpesvirus 6 (HHV-6) infection in pregnant and
nonpregnant women.
Baillargeon J, Piper J, Leach CT
Departments of Pediatrics, The University of Texas Health Science Center at
San
Antonio, 7703 Floyd Curl Drive, San Antonio, TX, USA.
J Clin Virol 2000 May;16(3):149-57
BACKGROUND: Human herpesvirus 6 (HHV-6) is a ubiquitous virus primarily
associated with benign conditions such as febrile syndromes and exanthem
subitum
(roseola infantum). Sexual, horizontal, and vertical transmission have been
suggested. Little information is available regarding HHV-6 infection in
women of
reproductive age. OBJECTIVE: Describe epidemiology of HHV-6 infection in
pregnant and nonpregnant women. STUDY DESIGN: The study sample consisted of
569
women, age 18-45, who attended a university family planning clinic
(nonpregnant,
n=224) and two obstetrics clinics (pregnant [first trimester], n=345) in San
Antonio, TX between October 1995 and May 1998. Blood and a vaginal swab, as
well
as sociodemographic information, were collected from each participant.
Plasma
was tested for HHV-6 IgG antibodies using a standard immunofluorescence
assay
(IFA). Lysed material from vaginal swabs was tested for HHV-6 DNA by
polymerase
chain reaction (PCR). Products were screened by enzyme-linked immunosorbent
assay and positive tests were confirmed by repeat PCR followed by Southern
analysis. PCR-positive samples were subtyped using an established method.
RESULTS: All subjects were HHV-6 antibody positive. Geometric mean titers of
HHV-6 antibodies were significantly higher among nonpregnant versus pregnant
women. Moreover, a higher proportion of nonpregnant versus pregnant women
had
antibody titers
adjusting for a number of sociodemographic and clinical factors. Low rates
of
HHV-6 shedding in the genital tract were observed for both groups (pregnant,
7/297 [2.0%]; nonpregnant, 8/214 [3.7%]). Of 14 samples subtyped, four (29%)
were subtype A. CONCLUSION: The present study showed that 100% of the study
sample was infected with HHV-6. Higher HHV-6 antibody titers, however, were
noted in nonpregnant women. Both groups shed virus at low rates in the
genital
tract. HHV-6 subtype A was identified more commonly than previously
reported.
Further longitudinal studies are required to assess the consequences of
maternal
HHV-6 infection.
PMID: 10738135, UI: 20204456

MY son's epoctic(sic) dermatitis is also very much under control - I believe
more because of the kutapressin. You will notice that skin conditions was
one of the original uses. He used to wake up at night scratching. Now he
just gets mild dry skin when the heat is on. I really don't think it was
diet related - but who know for sure?? I have heard that eggs might be
counter indicated for those who have eczema.

Cheryl, thank you...it is great to know you have had success in conquering
your son's eczema through allergy treatments. We have had testing done,
but have been torn about whether to pursue the neutralization shots.
I have done various elimination diets with him and not noticed clear
effects...and now that he is getting older and is out in the world more and
making his own choices, it is more difficult to "monitor" or control his
diet. Had we been quite sure that something was harmful to him and been
consistent from a young age, I think it would be more ingrained in his own
thinking.
Rosemary

Yvonne,
Don't worry. Many of the milk substitutes, such as rice milk (Rice Dream)
and potato milk (DariFree), are fortified with an equal amount of calcium as
cow's milk.

Rosemary,
We have just recently, within the last two months, taken our 5 year old off
milk and cheeses. It was not as hard as one might think. We substitute either
goat's milk or rice milk for use with pancakes, etc. There are also soy
cheeses, they take getting used to, and still trying to get goat's cheese (it
has to be better). The big change was ordering pizza without cheese (This is
where we get extra meat), changing away from cheeze chips and crackers. It
was worth it because it changed his bowel movements and we were able to potty
train #2. We have also just started with Dr. G less than three weeks ago with
Valtrex, already had the "die-off" lasted about 12 days, now we have noticed
in the last several days more speech at school and a clearer look in his
eyes.
MM

Rosemary, If you suspect your son has allergies or sensitivities I would
suggest you have him tested before doing any major dietary elimination.
Almost all of our kids have allergies to SOMETHINGS but my experience may not
be the same as yours. It would be a shame to eliminate things based on what
we say if they are not necessary. I agree that an allergy to casein is
pretty common but it's also very difficult to follow. I would want the
assurance that it was necessary before going that route. I would take any
child with suspected allergies off cow's milk. It's simply not necessary for
children to grow up healthy (as long as they get calcium from another source)
We took our son off milk at age 3 because he would drink it by the gallon to
the exclusion of food. As for the rest, it's best to do the testing first.
If you need info. on what tests to run, let me know. Good luck. Linda

I am very interested in learning more, since I am pretty sure my son has
trouble with certain foods. It is very difficult to keep a 9 yr. old off
of milk and cheese, though, let alone wheat/gluten. How do you all do it?
Rosemary

Anna,
JJ has the oppasect problem! He always has a green "Mushey" poo. Lois

Welcome Rosemary. I have nothing to offer on the Claritin question, but I
would be interested in comments others may have. Have you tried taking your
son off cow's milk? I think this may excerbate asthma. Some of us on this
list have children on gluten free and casein free (GFCF) diets. Casein is a
protein in cow's milk.
There is an interesting little book called Don't Drink Your Milk, by Frank
Oski, who is (or at least was when the book was published) the Director of
the Department of Pediatrics at John Hopkins (not a quack).
Hope this is not all old news to you.
Connie

it was in my to do file, promise ;). If I Recall Correctly.
anyone else dealing with constipation? We've just been to the doctor and I
am not at all sure that his recommendations are going to
work............... If I have to deal with anal leakage in a kid with OCD,
I just might need a padded cell.............
anna v

Hi all,
I have noticed that when JJ eats grapes his behaviour gets bad. 2 days
ago I gave JJ some grapes and yesterday JJ was a mess!! He had hit the
teacher 2 times and cryed half the day. Anybody else ever expenrence
this??? And anyone know why??? Thanks, Lois (JJsmom)

grapes are banned in our household too. We follow the Dengate diet which
is low in salicyclates and amines. IIRC grapes are high in salicyclates -
you might want to look at what other foods are high in salicyclates and
consider reducing intake. Generally if they are reacting to one, they will
react to all.
anna v

Yvonne:
We had tried the valtrex for about 6 weeks. We then moved to
famvir. After his bizaare behavior, Dr. G felt that this was not
working either. He did say that he felt that the reactions might be
indicative of viral activity being kicked up. During our last
consult, he felt that we should try kutapressin for a bit and then
reintroduce valtrex/famvir. I have requested that our next round of
labs includes IgE/IgG/HH6 but I'm not sure if they will agree to it.
How long was your daughter on the antivirals before you d/c them?
ann

I just joined the list...so, to introduce...our family lives in Western
Colorado and our 9 yr. old son has been having alot of difficulty with
focus/concentration issues with schoolwork. A trial with Ritalin proved
unhelpful. He has been diagnosed with an audio-processing problem and he
also has alot of allergies (sinus/eczema/borderline asthma). We have found
that the anti-histamine, Claritin, helps him to think more clearly on his
studies; his doctor is puzzled by this since Claritin does not cross the
blood-brain barrier, though she feels it may be acting as a stimulant.
I am searching for clues/answers about connections between immune system
deficits and neurological functioning and also for nutritional
possibilities to try to help my son.
Rosemary

I have been following the posts on Kutapressin; I am not particularly bothered
by the IM administration (my 2.7 yr old migh feel differently...). I think this
is what Dr. G has planned for us. My question is
this; my son responded HORRIBLY to both valtrex and famvir. To say he was a
maniac on it is a disservice to maniacs. He literally climbed the walls (& I do
mean literally). He also escaped from school and was
venturing towards a major highway. He lost most eye contact, speech and became
physically aggressive. Thankfully he reverted to "normal" a few hrs after the
drugs were d/c. For those who have written of the
positives of kutapressin, what were your experiences on other antivirals (if you
don't mind sharing)? Were you taking the kutapressin for HH6 or other issues?
Thanks for any input.
ann

Ann - If I may be nosy, how long did you try the antiviral before stopping
them? I've always been told that a negative reaction, especially regression,
is good because it means that the viruses (viri?) are being "shaken up".
Perhaps trying them for longer might have shown improvement? Just a thought.
As far as your question, our daughter didn't show much reaction from Famvvir,
Valtrex, or Kutapressin. She has shown be best results from SSRIs,
particularly Prozac.
Take care,
Yvonne

Hi,
I went to e-groups to go back to regular mail. It didn't work. Who ever
is in charge of this list would you please put me back to regular mail?
thanks, Lois

I am not a dr. but would guess that the regression is unrelated.
Kutapressin, when it works,and in the CFIDS literature is very gradual and
takes about four months to take effect. If he is not allergic to it I would
not rule out other unidentified reasons for regression
emotional/diet/illnes/allergies etc. It is a maddening fact that often we
cannot really determine what is going on with our children. It would be a
shame to rule out something that was helping him until you could really
determine that the problem is the kutapressin, because I think it is a
pretty safe agent.