Doris,
Hi! Could you e-mail me and let me know what Dr. you are seeing? I live in
maryland too. (Hagerstown) I have a Dr. in marland that is good too but he
is changing insurerence and I won't have the right one. Thank you, Lois
(JJSMOM)
Hello!
Need your help.
We're seeing a Dr in Md who is familiar with autism
(a major find it would seem)
Recent blood/urine tests are showing up
with deficiencies and interesting items.
The deficiencies include low calcium, magnesium,
selenium, Vit C and molybdenum.
The Dr would like our son to take a few supplements
(along with the nystatin and acidolyphus).
We're currently only able to find the supplements
in pill form. We have a good lead on a spray version
of the calcium,magnesium, selenium and vit c.
But in case this falls thru,
does anyone use liquid forms of vits and minerals ?
If so, where do you purchase them ?
We have plans to see Dr Goldberg one day
as we believe (and the tests are pointing to ) a possible
immune dysfunction. But we're trying to rule out
the 'easy' problems first. No need to pester
the Dr just yet .....
Any help you could offer would be appreciated
Thanks!
doris Smith
Maryland
I breastfeed my two autistic sons, but with my oldest autistic son it
was different, when he was 2 days old, his pediatrician told me to stop
breast milk for 1 day because my little boy had blood in his excrement,
the doctor told me that maybe I had to much proteins in my milk, so I
did it, I stop for one day, my baby's excrement was normal and I
continued breastfeeding him.....With my other autistic boy everything
was fine.......
I knew that I would not be able to do the shots myself. I had a nurse
that I know give the first couple of shots and she worked with my
husband to show him how to do them. It made things alot easier for us.
Cheryl
We are about to start giving our son Kutapressin shots and are pretty
nervous about giving an intramuscular injection. I was wondering what
experiences other parents had giving their kids these shots the first few
times.
Loretta
Looking healthy, doesn't mean being healthy does it?
--
http://members.xoom.com/Neil_S_Clark/autism.html
Hi all,
Besides Jan, has anyone else tried the PPA/Dexatrim with their autistic
child? I am doing it, as of two days ago, and want to compare notes with
others.
Trina
All of vitamin B12 in nature is of microbial origin. Cobalamin, as vitamin B12
should correctly be termed, is a large polar molecule that
must be bound to specialized transport proteins to gain entry into cells. Entry
from the lumen of the intestine under physiological
conditions occurs only in the ileum and only when bound to intrinsic factor. ...
In most bacteria and in all mammals, cobalamin
regulates DNA synthesis indirectly through its effect on a step in folate
metabolism, the conversion of N5-methyltetrahydrofolate to
tetrahydrofolate, which in turn is linked to the conversion of homocysteine to
methionine. (1)
Vitamin K, intrinsic factor can be synthesized in the gut by lactobacillus
acidophilus. However lactobacillus acidophilus does not
always flourish in the gut of the autist. Attempts to supplement this bacteria
often fail and repeat testing confirms no measurable levels
of the lactobacillus acidophilus even with heavy prescribed supplementation
especially for those on diets which are devoid of lactose.
Attempting to treat a single area without looking at the whole picture which
includes diet can also result in testing and supplementation
with P-5-P and this supplement can inhibit the PST-P enzyme which has already
been found at abnormally low levels in the autist
population (Waring, Ngong).
This reaction occurs in the cytoplasm, and it is catalyzed by methionine
synthase, which requires methyl cobalamin (MeCbl), one of
the two coenzyme forms of the vitamin, as a cofactor. Defects in the generation
of MeCbl (cobalamin E and G diseases) result in
homocystinuria; affected infants present with megaloblastic anemia, retardation,
and neurological and ocular defects. 5'-Deoxyadenosyl
cobalamin (AdoCbl), the other coenzyme form of cobalamin, is present within
mitochondria, and it is an essential cofactor for the
enzyme Methylmalonyl-CoA mutase, which converts L-methylmalonyl CoA to succinyl
CoA. This reaction is in the pathway for the
metabolism of odd chain fatty acids via propionic acid, as well as that of the
amino acids isoleucine, methionine, threonine, and valine.
Impaired synthesis of AdoCbl (cobalamin A or B disease) results in infants with
methylmalonic aciduria who are mentally retarded,
hypotonic, and who present with metabolic acidosis, hypoglycemia, ketonemia,
hyperglycinemia, and hyperammonemia. Megaloblastic
anemia does not develop in these children because adequate amounts of MeCbl are
present, but the effect of methylmalonic acid on
marrow stem cells may give rise to pancytopenia. Congenital absence of
reductases in the cytoplasm, which normally reduce the
cobalt atom in cobalamin from its oxidized to its reduced state (cobalamin C and
D diseases), results in impaired synthesis of both
MeCbl and AdoCbl. Both methylmalonic aciduria and homocystinuria therefore
develop in these children, and they present with
megaloblastosis, mental retardation, a host of neurological and ocular
disorders, and failure to thrive; however, they do not have
hyperglycinemia or hyperammonemia. A similar biochemical profile and clinical
presentation is also seen in cobalamin F disease,
which results from a defect in the release of cobalamin from lysosomes,
following receptor-mediated endocytosis of the transcobalamin
II-cobalamin complex into cells. It is important to recognize these inborn
errors of cobalamin absorption, transport, or function as soon
after birth as possible, because most respond (in some patients more fully than
others) to parenteral administration of cobalamin.
Delays in diagnosis can lead to grave clinical consequences. (1)
Some autists respond well to B12 injections, it is important to know which form
of B12 to use. I have within my case histories an
individual diagnosed with cobalamin F disease. She responded well to the lutein
free, nutrient balanced diet and her previous diagnosis
was reversed.
Cobalamin (vitamin B12) is an essential nutrient derived exclusively from
bacterial sources. Untreated deficiency, caused by either the
autoimmune disease pernicious anemia or nutritional lack, results in a
macrocytic anemia and/or subacute combined degeneration of
the spinal cord and is eventually fatal. Strict vegetarians have long been
known to be at risk of cobalamin deficiency, which develops
insidiously over many years. Any individual with reduced ability to split
cobalamin from food-protein may also become deficient even
though intrinsic factor is present. Diagnosis of cobalamin deficiency has
frequently relied on total serum cobalamin and the Schilling
test. Newer approaches such as analysis of methylmalonic acid, homocyst(e)ine,
holotranscobalamin, anti-intrinsic factor antibodies,
and serum gastrin may provide more cost-effective testing, as well as identify
those with a covert deficiency. (2)
Vitamin K, clotting factor, can be taken in the diet from oils such as soy and
olive. In a population which may not produce adequate or
any lactobacillus acidophilus growth it is important to provide the vitamin K, B
vitamins and control of yeast overgrowth from diet,
supplements and/or pharmaceuticals.
Intrinsic factor-vitamin B12 IF-B12 affinity chromatography of renal cortex
membrane from rabbit and man yielded the same
approximately 460-kDa protein. Binding studies including surface plasmon
resonance analyses of the protein demonstrated a calcium-
dependent and high affinity binding of IF-B12 to a site distinct from the RAP
binding site. The high affinity binding of IF-B12 was
dependent on complex formation with vitamin B12. (3)
Looking exclusively at one nutrient rarely will get the desired results. The
human body relies on many essential nutrients and these
need to be balanced in order for our bodies to function optimally.
Uptake of vitamin B12 (cyanocobalamin) is facilitated by the cobalamin-binder
gastric intrinsic factor (IF), which recognizes a 460-kD
receptor, cubilin, present in the epithelium of intestine and kidney. Using
fluorescence in situ hybridization, radiation hybrid mapping,
and screening of YAC clones, the human cubilin gene was mapped between the
markers D10S1661 and WI-5445 on the short arm of
chromosome 10. This is within the autosomal recessive megaloblastic anemia
(MGA1) 6-cM region harboring the unknown recessive-
gene locus of juvenile megaloblastic anemia caused by intestinal malabsorption
of cobalamin (Imerslund-Gräsbeck's disease). In
conclusion, the present molecular and genetic information on human cubilin now
provides circumstantial evidence that an impaired
synthesis, processing, or ligand binding of cubilin is the molecular background
of this hereditary form of megaloblastic anemia. (4)
Some populations are at higher risk for B12 deficiencies.
At one time, the diagnosis of a deficiency of vitamin B12 or folate was
considered to be relatively straightforward. As knowledge has
accumulated, the limitations of such tests as serum vitamin level measurements
and the Schilling test have become apparent. With the
development of newer tests, atypical and subclinical deficiency states have been
recognized. (5)
1. Vitamin B12 in health and disease: part I--inherited disorders of function,
absorption, and transport. Kapadia CR. Department of
Digestive Diseases, VA Medical Center, West Haven, CT 06516, USA.
Gastroenterologist, 1995 Dec, 3:4, 329-44
2. Cobalamin. Markle HV, Centenary Health Centre, Scarborough, Ontario, Canada.
Crit Rev Clin Lab Sci, 1996, 33:4, 247-356
3. Characterization of an epithelial approximately 460-kDa protein that
facilitates endocytosis of intrinsic factor-vitamin B12 and binds
receptor-associated protein. Birn H; Verroust PJ; Nexo E; Hager H; Jacobsen C;
Christensen EI; Moestrup SK, Department of Cell
Biology, 8000 Aarhus C, Denmark. J Biol Chem, 1997 Oct, 272:42, 26497-504
4. The human intrinsic factor-vitamin B12 receptor, cubilin: molecular
characterization and chromosomal mapping of the gene to 10p
within the autosomal recessive megaloblastic anemia (MGA1) region. Kozyraki R;
Kristiansen M; Silahtaroglu A; Hansen C; Jacobsen
C; Tommerup N; Verroust PJ; Moestrup SK Institut National de la SantÆe et de la
Recherche MÆedicale, U489, HÈopital Tenon,
Paris, France. Blood, 1998 May, 91:10, 3593-600
5. Laboratory diagnosis of vitamin B12 and folate deficiency: a guide for the
primary care physician. Snow CF Division of Primary Care,
Santa Clara Valley Medical Center, San Jose, Calif., USA. Arch Intern Med, 1999
Jun, 159:12, 1289-98
-------
Sara's Diet - a comprehensive dietary approach to autism
http://personal.atl.bellsouth.net/~sojmed/
Just to throw one more wrench in your spokes, I have yet another theory
about the efficacy of secretin. Certain symptoms of autism mimic B12
deficiency, but B12 blood levels will be fine. In order to work in the
CNS,
B12 must interact with the intrinsic factor, which is made in the lining
of
the stomach. Chronic gastritis (stomach irritation) will prevent
formation
of intrinsic factor. I think secretin does something to help the
stomach
begin generating intrinsic factor again, which in turn translates B12
into a
useable form for CNS function. Only trace amounts of B12 are really
needed.
In fact, an infant is born with enough B12 to last 1-3 years. So a
single
secretin treatment could lead to stockpiling enough B12 to last several
months.
Just my little knowledge being a dangerous thing. Wendy in Denver
--
http://members.xoom.com/Neil_S_Clark/autism.html
We are going to see Dr. Godberg later this month with our 4 year old
autistic son. As part of the procedure, we have started getting the lab
tests done -what a nightmare the blood extraction was. Anyway I was
talking our local doctor last week - all the results aren't in yet so we
don't have a full picture as yet, but one obvious thing that stood out was
that my son is very, very low in iron. He eats tons of red meat (won't
touch white meat, fish) and eats a huge Tbone or 3 lamb chops most
evenings. He must have a problem metabolising iron somehow. I am
wondering if anybody has an idea of what this could mean - particularly in
the context of autism.
Stefanie
I just found this, it is very important information regarding IVIG
Cheryl
FDA Warns Of Potential Risk Of Liver Failure Associated With Use Of IGIV
Products
http://ipn.intelihealth.com/ipn/ihtIPN?c=244166
Yeast in the brain, and the only one that I am familiar with is cryptococcus
cause symptoms of meningitis/encephalitis and would never be mistaken for
autism. They are very different symptoms. One of the theories behind HIV
dementia is that it is the result of the bodies immune system. That is a
theory. KathyR
Dear listers:
I need information about Luvox, I know is a SSRI, but do I need to check
something before start using it ? My son's neurologist recommended for
my 7 yo autistic boy.
Thank you
Martha
It could be rubbed on the eye,
and get in that way perhaps.
--
http://members.xoom.com/Neil_S_Clark/autism.html
The effects of occupational therapy with sensory integration emphasis on
preschool-age children with autism.
Am J Occup Ther 1999 Sep-Oct;53(5):498-505
Case-Smith J, Bryan T
Ohio State University, Columbus 43210, USA. Case-smith.1@...
[Medline record in process]
OBJECTIVE: Using single-subject research design, the effects of an
occupational therapy intervention emphasizing sensory integration with five
preschool children with autism were examined. METHOD: In the AB design,
nonengagement, mastery play, and interaction were measured, using videotape
clips of each child's free play in the preschool. Following a 3-week
baseline, an occupational therapist provided one-on-one sessions and
consultation to teachers for 10 weeks. RESULTS: When baseline and
intervention phases were compared, four children demonstrated decreased
frequency of nonengaged behavior, and three demonstrated increased frequency
of mastery (goal-directed) play. Improvements in frequency of interaction
were minimal. CONCLUSION: The results support descriptions in the literature
regarding the behavioral changes that children with autism can make when
participating in intervention using a sensory integration approach.
PMID: 10500857, UI: 99430644
Current practice of occupational therapy for children with autism.
Am J Occup Ther 1999 Sep-Oct;53(5):498-505
Watling R, Deitz J, Kanny EM, McLaughlin JF
Department of Rehabilitation Medicine, University of Washington, Seattle
98195, USA. rwatling@...
[Medline record in process]
OBJECTIVE: The purpose of this study was to examine the current practice
patterns of occupational therapists experienced in working with children
with autism spectrum disorders. METHOD: Occupational therapists experienced
in providing services to 2-year-old to 12-year-old children with autism
completed a mail questionnaire describing practice patterns, theoretical
approaches, intervention techniques, and preferred methods of preparation
for work with children with autism. RESULTS: Of those contacted, 72
occupational therapists met the study criteria and returned completed
questionnaires. Practice patterns included frequent collaboration with other
professionals during assessment and intervention. Intervention services were
typically provided in a one-to-one format with the most common techniques
being sensory integration (99%) and positive reinforcement (93%).
Theoretical approaches included sensory integration (99%), developmental
(88%), and behavioral (73%). Evaluations relied heavily on nonstandardized
tools and clinical observations. Educational methods identified as most
helpful were weekend workshops (56%) and on-the-job training (52%).
CONCLUSION: This study clarified the nature of current occupational therapy
practice patterns for 2-year-old to 12-year-old children with autism.
Additional studies are needed to examine the efficacy of current evaluation
and intervention methods, as well as to explore the relevance of available
standardized assessments for this population.
PMID: 10500858, UI: 99430645
Thought I'd pass on the web site to read the testimony given yesterday before
Congressman John Mica on Vaccine Compensation.
All the testimony by the witnesses is posted at the following web page:
http://www.house.gov/reform/cj/hearings/9.28.99/index.htm
Mary
For those with a scientific interest, this is an interesting paper on the
subject:
Hanson Lars Å., "Breastfeeding Stimulates the Infant Immune System". Science &
Medicine 1997;4 (6),2-11.
Lars Hansson is Professor and Head of the Department of Clinical Immunology at
the University of Gothenburg in Sweden. I think the paper is still available
as a reprint from the publisher. There are some very good illustrations.
Normal human breast milk is unique in that it contains five of the eight
essential monosaccharides (Murray Robert K., Harpers Biochemistry 24 ed.,
Chapter 56: 648-666. Appleton & Lange 1996). Bovine milk and bovine colostrum
contain one and most formulas none of these important saccharides. Most of us
on a typical western style diet get only two of the eight in our diet, which
leaves the mother's body struggling to provide for the baby by synthesizing
the missing monosaccharides from those available. The degree of difficulty for
the mother's body depend on many factors, e.g. her general health, the toxic
load on her system and other environmental factors. Also, the mother
prioritizes the baby before herself, sometimes leading to a kind of viscous
circle for her.
With the impossibility of escaping the environmental toxins, it appears that
the only option is to supplement the food intake, ideally beginning well
before conception.
There is currently a very rapidly growing, almost frantic worldwide research
activity in this new field, now coined Glycoscience. For a good overview of
the current situation, see 'Acta Anatomica', 161/1-4/1998, Karger Publishing
(www.karger.com). This is a theme edition on "Glycosciences'. (Well, I
shouldn't really have said 'current'. The papers in that edition of 'Acta
Anatomica' were written probably two years ago, on the basis of work having
been done the years before. This field is exploding!)
It may be difficult not to feel guilt about not having breastfed your child.
However, as so often in history, nobody knew. Scientist are standing in awe at
the realisation of how extraordinarily complex and refined the body's internal
communication systems appear to be and how very powerful our natural capacity
for defense and healing is, if only given half a chance.
Don't despair. We seem to be on the brink of breaking into new areas of
knowledge that could offer hope. Just hang in there and keep watching this
space. Incidentally and again on communication, for the first time in history,
ordinary mums and dads can find out first hand by themselves. Thank God for
the Internet!
Best wishes to all you mums out there!
Axel Westrenius
Granddad in Australia, father of two wonderful daughters and former Swede.
I was upset by this article and thought I'd share it with the list.
I've copied the article below to save time going to the web site~~~Mary
Below is the web site for the article. At the end of the article on the web
page you can e:mail comments to the author.
<A
HREF="http://www.salon.com/health/feature/1999/08/05/vaccines/index.html"
k here: Salon Health & Body | House debates vaccine s...</A
http://www.salon.com/health/feature/1999/08/05/vaccines/index.html
Article by Salon Magazine regarding Vaccine hearing held by Congressman Dan
Burton on 8/3/99
House debates vaccine safety
Critics say mandatory inoculations may do more harm than good.
But what about all the lives that have been saved?
Next, Ms. Baird will analyze the federal and administrative case law
on autism, reviewing each case for the factors that were persuasive to
the judge or hearing officer. She will also provide a "blueprint" for
winning based on the patterns that have emerged in autism litigation and
her own experience in representing school agencies.
http://www.lrp.com/Conferences/autism.htm
I tried to find this website and am having a hard time. Could you please
print the exact address so I can take a look before coming to any conclusions?
Thank you.
Bonnie Marshall
Lynn
My son SEEMED to develop normally untill somewhere around his MMR
shot (22 months) when he became sensitive to food and sounds. He could
speak but definitely did not see the use for it unless he wanted
something . At 8 1/2 he now talks constantly, mostly to himself, and has
very little sensitivity to sound but still does to food. He has been
recently diagnosed as NLD (non verbal learning disabled) , ADHD, anxious
and depressed. I emphasised "seemed" because there may have been some
things about him that were different before it became obvious. He didn't
play imaginitively or with other kids or do much that involved fine
motor skills.
My daughter is an honor student at her school and she was not breast
fed. My son was breast fed for 6 weeks
Martha,
My son takes adderall for ADHD. I do not see the effects of it as
I only give it to him on school days and it only lasts about 6 hours,
but his teacher last year noticed the difference (and so did his report
card). I have just recently started him on it again so we will see. The
first day we gave it to him he was up almost the whole night, but after
that he was okay.
I am in search of an 'open-minded' Immunologist (not an Allergist) to conduct
an immune panel and anti-viral treatment(s) on my 3 3/4 Autistic daughter who
is positive for HHV-6 & other auto-immune related problems; possibly residing
in the Wash DC / Baltimore area, but may be able to travel, if need be.
Please email me privately should anyone recommend such doctor. Thank you
ALL!! :)
Sherry Deese Jager ~ Megan's Mom in MD
DEESEJAGER@...
i forgot to mention that my normal, typical, breastfed children all are
gifted, on the accelerated program at school, and extremely beautiful just
like my autistic son.
Breastfeeding contributes to all of this, i am sure.
loujeanne
my son developed normally until age 13 months when he suddenly stopped
talking,(he had been saying 2-3 word sentences, like go bye-bye, time to eat,
lets play, ) stopped making eye contact, stopped playing. He was diagnosed
with autism at age 3. The youngest of four children, all breastfed until age
2, he was breastfed until age 3.
loujeann
Lynn,
Our daughter also progressed normally and lost everything. At the point
when my wife thought something was wrong, she asked our pediatrician if
Jessie was autistic and he responded that there was nothing autistic
about our daughter.
She did have ear infections which required double doses of antibiotics
to clear up. I believe she had/has candidas induced autism and have just
recently taken her to she Dr. Goldberg. I have a new daughter, although
she is not normal yet.
Yes--
My child developped normally except he was hyperirritable--I took him to a
Brazelton trained developmental pediatrician at age 14 mos. because his sleep
was erratic. Otherwise he was ahead with physical milestones, and age
appropriate with everything else, including language, UNTIL AGE 2 1/2 WHEN HE
WAS WEANED--then he fell apart and regressed . Ultimately he was diagnosed
with autism.
Hi Lynn!
My son Dean, who turned three on 8/5 was diagnosed with PDD-NOS in August.
He developed normally... language, very cuddly, good eye contact, he knew
most of his ABC's and then at 27 months started losing his speech and acted
as if deaf. It has been the most heartbreaking thing to see him so smart
and alert and then lose it. I know it must be terrible to have a child born
with these characteristics also, but to have them and then lose them... well
it's just so cruel. Dean is doing very well now, he has started talking
again! Not in full sentences, but he lets us know what he wants. He also
is alot more social and his eye contact is ALOT better. We are doing
floortime, and a modified ABA( which we started today!) He also goes to
speech, and has an OT that is working on his sensory integration problems.
How is your son doing and what therapies have you tried? I am trying to
get all of the paperwork filled out and bloodwork done to see Dr. Goldberg.
We live in Mississippi, so it won't be an easy task, but it is our next
step. Have you seen him? Sorry this is so long.. By the way, I didn't
breast feed any of my three sons, and Dean is the only one with problems.
Thanks !
Maranie
Hi All,
I have been reading the list for the last month. This is the first time I
have responded. My child has been diagnosed PDD-Atypical. He developed
normally for the first 2 1/2 year of his life. He had language, reciting
ABC's, Colors, and counting 1 to 10. Then he regressed to no language and
autistic characteristics. I just thought that it would be of interest for
you to know that he sucessfully and lovingly breastfed for 8 months. It was
a wonderful time for both of us. Did anyone else's child on the list develop
normally then regress.
Lynn
Mary K,
After successfully breastfeeding the previous 2 children my now 4.5 y/o
AS son REFUSED to breastfeed. He would arch his body, cry and I remember
thinking that it must look like child abuse when I was attempting to
breastfeed him. Additionally he was born with two of his baby teeth (which
he still has) and I was in grad school SO I stopped and he did fine with a
bottle. I have always felt this was our first real symptom of his AS.
MaryLD
my son takes it....its a newer stimulant like ritalin but with less side
effects
Does anybody on the list is familiar with ADDERAL ?, my son's
neurologist recommended to increase attention span.
Martha
Hi all! check out this site on brain plasticity. Lois
http://www.washingtonpost.com/wp-srv/health/daily/sept99/brain28.htm
Does anyone have a conversion table whereby ISR values (in immune
panels) can be converted into the older and more traditional numeric
values usually seen as antibody titres.
This conversion formula needs be available to all parents who
purchase immune panels. I know of cases wherein a prior titre was
expressed the old way and the more recent titre is expressed in ISRs.
Yet I can't find anyone who seems to know how to compare the two
values, thus making the ISR values meaningless until the converstion
formula is known.
Of course, we can all be ostriches with our heads buried as we chant
a mantra like, "Duh, I don't know. Gee, lots of kids get these
infections."
But, frustrated sarcasm aside, the autism community really needs to
have a solid basis for comparing ISR immune values with the prior way
of reporting immune values.
Please share this info with me via <aspergerian@...
lists, and/or by bringing the conversion formula to the Cherry Hills
DAN!
Thnx,
Teresa
still not able to receive list mail, so responses must be sent me
directly aspergerian@...
LRP publications is offering a seminar to school professionals on how to
effectively "cheat" parents out of therapies and services for autistic
children. I had a few comments to make to them. After looking at the
website, about the seminar information, if you have the same feelings, then I
would strongly encourage you to take a minute and write an email to:
lrpconf@... or call the company.
Below is a copy of the letter that I have sent to them.
I would also like to encourage people in those cities where the seminars are
being held to find out where the seminars are to be held and plan on paying a
visit on the day of the seminar. Go to the hotel for coffee and stop by and
speak your mind and find out if your teachers or principals are there and
call them on it!
Again, if I misread this in a moment of anger, I will be happy to print a
retraction later.
With kindest regards,
Shelley H. Reynolds
****************************LETTER BELOW:
As the mother of an autistic child in the public school system, I am so
completely disgusted by your offering this seminar that I am not sure exactly
how to say what I would like to say nicely. I am refering specifically to
the information as found on your site: <A
HREF="http://www.lrp.com/Conferences/autism.htm"
Your company has an awful lot to learn about autism and I suggest that you
delve into the topic quickly.
My family and I will be on a CNN special regarding autism and the vaccine
connection called "A Question of Harm?" which is scheduled to air on Sunday,
October 3, 1999. It will air at 9pm est, please check your local listing for
the Time/NewsStand program. I strongly suggest that you watch it and
re-assess what you are doing.
In an effort to ready my child for the public school system as well as to
make him healthy I took him in as every good mother would to get his shots.
He was an unlucky child and had an adverse reaction to the MMR which resulted
in his autism. His father and I have spent an inordinate amount of money to
work on "recovering" him and he is NOT a lost cause. These children are not
lost causes and with proper intervention many can be eventually mainstreamed.
And believe me, knowing and hoping that your child will one day say "Mommy"
again, much less speak at all or function properly in social setting is not
something that any parent wouldn't wish for their child.
Vaccines may not be the cause in all children's autism. But whatever the
source, these children need help and they need it early. Waiting will not
only harm the child and the family, but with the number of children out there
already and the alarming increase in incidence, waiting will put an
un-before-seen financial burden on society later. If you are interested in
saving dollars....put them in on the front end to help these children be as
self sufficient as they can be.
Autism has increased 2000% and affects as many as 1/132 children in some
areas of the country. With such a dramatic increase for such a disabling
disorder, I find it completely disgusting and ironic that a system that
practically forces children to get immunizations in the first place would
then "cheat" them out of receiving proper care when they have an adverse
reaction.
Autism has become a silent epidemic and if we don't do something about it
soon, we will lose a whole generation of children, primarily young boys, to
it.
I am going to post this information to every internet list that I subscribe
to. I suspect you will be receiving a lot of mail soon. I am the head of a
grass roots organization with thousands of participants and intend to
mobilize people in the cities that you have listed on this site to react to
the seminars in their immediate area. Buckle up. I believe you all are
probably in for a big ride in the autism community.
I expect a response to this letter. If you can call me and convince me that
I have misinterpreted your intentions with this seminar then I will be happy
to send out a retraction.
Sincerely,
Shelley H. Reynolds
Founder of Unlocking Autism
P.O. Box 1086
Baton Rouge, LA 70821-1086
(225) 769-1532
My daughter would not breast feed. I now think it was a sensory overload
problem, probably caused or exacerbated by a dairy intolerance. I did
everything to get her to breast feed to no avail. The books all talked
about how babies would stare into mother's eyes, but my daughter made brief
eye contact, then looked away.
Mary K.
Hi all!
I just read the article in ladies home journal about andrew and
secretin. Is andrew's mother on the list or doe's anyone know her? I
just wanted to know if andrew is still getting secretin? Thanks to
anyone that could let me know. lois (JJ"SMOM)
Hi All,
I don't post much, but I want to respond to this. I
don't think it's the breastmilk, per say, but what's
in it. It's the DHA-the fatty acids, etc., that make
the difference - and it's not just after birth,either,
that they're necessary. I speak 'strongly', because
I believe we have a 'with' and 'without' example in our
family. My daughter (has ADD) has 2 autistic-type boys.
When she got pregnant with her third child, we threw out
the standard prenatals the docs give and put her on
primrose oil caps, salmon oil caps, Doctor's Choice
Prenatals (Enzymatic Therapy) and a bit of extra iron
to complete. My granddaughter was born healthy, walked,
talked and spoke in sentences at 10 months!! She's very
normal and bright (at 20 months). My daughter just had
another BOY. He was nurtured, in utero, with the same
vitamin regimen. He was born healthy, normal and was
rolling over (back and forth) at one month, is strong,
interactive, vocal and grins from ear to ear. He shows
keen intelligence, with none of the problems his brothers
grapple with. Now, the first two boys had the standard
prenatals and had such difficulties they weren't able
to breastfeed. The other two had the 'new' vitamin
regimen, are very normal and my daughter is happily
breastfeeding both. Same genetics, different vitamins
and breastfeeding were the only changes, and it made
the difference, we believe. I understand that this is
anecdotal, and, even, simplistic, maybe, but it is
KNOWN that vitamin deficiencies cause many disabilities
and birth defects. It is also KNOWN that folic acid and
DHA prevent birth defects- So, I think, breastfeeding
helps ALOT, but won't change much damage already done.
I researched, read and watched other kids being treated
with 'efamol', vitamins, etc and decided, why not-before
birth? Made sense to me, esp. after I really looked into
what was and wasn't in the standard prenatals. I'm a
pretty conventional person, but I really do believe
there is something to this idea. I just wish these
'studies' would look into it, too. Chris, (blessed
with 4 of the most wonderful grandchildren in the world)
http://www.healing-arts.org/children/autism-overview.htm
--
http://members.xoom.com/Neil_S_Clark/autism.html
Featnews said
Babies who are breast-fed score higher on intelligence tests than
formula-fed babies, regardless of their mother's IQ, education and other
socioeconomic factors, according to a major study released yesterday.
What a lot of rubbish,
although developmentally early-on this
would appear to be the case.
In the longer term the fathers genetic IQ shows through
regardless of milk source/type.
--
http://members.xoom.com/Neil_S_Clark/autism.html
Michelle
Dr. Goldberg and I have discussed supplements and our children and I agree
with his general philosophy on this one: be careful. This is because many of
the seemingly benign ingredients to the rest of us result in significant
allergic responses in our immune-system-problematic children. I supplemented
my son's diet with neat things which did little outwardly, but shot up his
eosinophills tremendously. Have others experienced this? Becky
Hello, I lurk on this list and thought I could respond to this one.
I have communicated with Dr. Kane via E-mail and my doctor conferenced with
her regarding my son's blood results from fatty acid testing. We spent
$353.00 on a box FULL of supplements to give my son as a result of her
recommendations for him. Some of these have to be given 4 times a day, like
I can't even get him to take some once a day. Anyway, I have not seen that
great an improvement verses all the expense, fighting getting the meds in
him, and the hassle of sorting through when to give what. I have little
bottles, big bottles, blue drops, orange drops, and yellow drops. Like I
said, my son has alot of digestive problems, and I have not seen the miracle
from the supplements or the secretin that makes it worth putting my son
through all that. It has only been 4 weeks though...... I will keep at it,
but my feeling is that unless we channel our energies into getting more
awareness and funding for research, we won't see that great a change in
doing this or that. I am a Dr. Goldberg wannabe, but I just can't travel
there at this time! Spent too much on secretin and supplements!!!
I can list the specifics of what she told me to give him, via the fatty acid
4 star results if you want.
Michelle Guppy
When I read this article on breast milk and IQ I was again struck with
extreme guilt. I didn't intend to bottle feed my son, but he would not...or
perhaps could not...breast feed. It was really sad for me.
Did anyone else have trouble breast feeding her child? I am now curious if
this is a common problem among our children. Becky
Hi Cheryl,
When Eliz was first dxed with the immune problem years ago they did cultures
of all bodily fluids for viruses. But, that was in the time before they had
DNA testing. Maybe it might help to do that again now that testing has
advanced?
Betsy
Hi,
The essential amino acid blood test was done by Meridian Valley of Kent
Washington. Tel nbr is 1-253-859-8700. They even give a recommended amino
mix as a result of the test. We were going to get it made up but - lots of $
at the compounding pharmacy and couldn't afford it. So I'm approximating
with supplements.
Hope this helps...
Betsy (Elizabeth 13) Tulsa, OK
to unsubscribe go to onelist and sign in, you can unsubscribe from there
www.onelist.com
Generic Name: naltrexone
Brand Name: Trexan; ReVia
Drug Description: opioid antagonist
Approved Indication(s): treatment of alcohol dependence; blockade of the
effects of exogenously administered opioids
I was searching for information on something else and ran across this
site. It has some information from Dr. Bradstreet. It has alot of
information on various treatments, pros and cons and alot of research
abstracts. At the bottom of this page is this info.
Rx ReVia or Naltrexone (50 mg tablets): This drug works by competing
with other opioids (presumably gluten and casein derived ones) for the
binding at the mu-opioid receptor in the brain. This is the receptor
that pain-killers work through. It can help increase appetite for a
wider variety of food making the transition to a GC free diet easier.
It occasionally helps general autism symptoms, but I use it for GC free
transitions. The dose is variable but 1/8 twice daily is where I start.
http://www.autismuk.com/index1sub6.htm
Besides testing for yeast, have you done any testing for possible viral
activity? I remember reading some references in Dr. Goldbergs info
about some seizures being related to viral infections.
Cheryl
Hi,
My daughter Elizabeth (autism, seizure disorder, hypogammaglobulinemia) had
the organic acid urine test. Nothing was low, but the high things were
citric acid, arabinose, citrimalic, glyceric, acetoacetic, and suberic.
Also, her blood essential amino acid test showed low leucine, isoleucine,
valine, phenylalanine and tryptophan. Does anyone have any suggestions? We
have tried nystatin and this just aggrevates her seizures. She also has the
most enormous stretch marks one has ever seen.
We are giving glutathione for the citric. Also taurine for the seizures as
well as piracetam and depakote. Because of the depakote she also gets
carnitor - the rx form of carnitine.
Thanks for any info that I can pass on to her ped or neuro.
Betsy (Elizabeth 13) Tulsa, OK
Cathy
Is your son on an antifungal (diflucan, nizoral?)--my experience is that when
the candida problem is resolved (or at least being addressed), nail and
facial fungal rashes go away
Kate
My son, five, has developed nail fungus and seasonal ezcema which only shows
up in the fall. he has no diary because of the ezcema but the nail fungus is
due to I guess constantly putting his hands in his mouth and in dirt etc. He
also had hand foot and mouth virus a few times this summer. Anyone have
advice or dealt with this one? thanks Cathy
The actual research done on Evening Primrose Oil was done in Great Britain,
actually for the last almost 30 years. If you go to the Efamol site you can
get lots of information. Evening Primrose oil has to be taken with cofactors.
The research done on this, both here and in Britain, has been done with
children with ADHD. It does work exceedingly well for some children but not
for all. If you cannot find the guidelines please e-mail me directly and I
will look them up for you. BTW the research has been done with the brand
Efamol and the cofactors can now be found in efavite.
Has anybody heard of a substance called Trexan used in the treatment of
Autistic children?
Thanks
Robert
Unsubscribe
I am a parent of a 2 year 7 month boy diagnosed with autism who lives in
Melbourne, Australia.
Is any person on the list aware of doctors in Australia who have any experience
with NIDS or the DAN protocol? I have found one doctor in Melbourne who my son
is beginning to see but would like to know if there any parents who have
positive experiences.
My son (10) has been really good about the shots. He handles things
much better than I do. I hate shots, the last time I had an IM shot, I
started to passout after. They had to take care of me for a half hour
until my bloodpressure came back up. It didn't hurt but the fear of
pain must get to me. Dad is the one who gives the shots since mom is
such a wimp.
I asked my son if he does the shots because he likes them or because
they help him.
He said because they help me.
Cheryl
Hi all,
I am posting this message to all of the lists that I subscribe to, so as to
not miss anyone who might have a shred of information that could help me.
So, for those who dislike cross posters, DELETE now.
I need to know from people who have actually started the Dr. Patricia Kane
protocol, just how much of the evening primrose oil I am supposed to be
giving to my son. The bottle says one per day, but I thought she prescribed
like 5 or 6 per day. Can someone share their experience and knowledge on
the matter?
Trina
Trina
I think he may very well know that he feels better; my 7 year old recognized
that valtrex helped him feel better : one day out of the blue he stated
"that blue pill makes me feel better"--I hadn't made any comments to him one
way or another. My other son had kutapressin shots for a year or so and he
also seemed to like them---I always attribute it to the fact that he got a
stick of gum afterward
Kate
Mark,
Do you know anything about the use of monoclonal antibodies?
Kate
Hi all,
We finally bit the bullet and started the Kutapressin about one week ago.
The first night he did not know what was going on so it went fine. The
second night he was a little resistant, but not a huge fight. I was all
prepared to fight a tiger the third night, but instead, he ASKED for it. We
call it "booty medicine" at our house. He came to me and said, "Mama, I
want booty medicine" and started pulling down his pants.
What does that mean? Does it actually make him feel better, or he somehow
getting a thrill out of the sting of the needle? He has never been a self
abuser at all, so the thought that he likes the pain doesn't make sense.
What is everyone else's experience? It has not been long enough to really
make a difference in the way he feels, has it?
Trina
Has anyone on the list had worked with Dr. Patricia Kane and followed her
Fatty Acid treatments? If yes how was your experience? did you feel that it
helped? How long on the recommended supplements did you see results?
Your feedback will be really appreciated.
Thanks,
Nilo
Hydroxocobalamin, a type of B12 available from compounding pharmacies, will
reduce the production of Nictic Oxide. Some of the CFIDS people are using
large doses of this with good results. Large doses of the type of B12 found
in the usual vitamin pills is not good because of the cyanide in them.
Polly
I did some research on this a while ago... As I recall, TF works well
across mammalian species, and there was at least some research backing this
up -- e.g. so bovine TF works in humans against the pathogens it was raised
against in the cow. Also that if works given orally -- an evolutionary
requirement for passive transfer of immunity from mother to offspring via
breast milk/colostrum.
The above is obviously good for several reasons: Lower cost, easier use, no
risk of acquiring infections via infusions, no injection hassles. (Unless
of course you don't accept its efficacy in the first place.)
This still leaves the big problem of finding reputable producers/suppliers
of oral, animal TF. Unfortunately the field has attracted soulless
fast-buck artists looking to cash in on the hard work of those who pioneered
this approach and exploit desperate parents.
As it totally amazes me that more people were interested in TRW reporting then
ever my CHILD. Perhaps using the word TRW was incorrect. There are so many
companies on the net where you may check credit.
Im, in real estate so I check on peoples credit all the time. Here in CA I use
a company I wont state since I could just imagine what you would do next.
However on the net both www.knowx.com and http://www.sonicseek.com/ are good
sources. There are also many illegal non pay methods. Most only need the
person name and state. Dont worry JO I havent bothered to look you up!
Bunny
I don't know the significance of the N-acetyl part of this, but I can tell
you a little about the aspartate. Often you will find magnesium and
potassium aspartates in the store. This is aspartic acid attached to these
magnesium and potassium. Once in a while you will see it with other
minerals. The magnesium-potassium form of aspartic acid has helped give
adults with yeast overgrowth more energy. They may be low on this because
the yeast toxin acetylaldehyde depletes the body of asparagine --- and
asparagine converts into aspartic acid and vice versa. The down side is
that if you get too much aspartic acid, it promotes seizures. Malic acid
converts into aspartic acid and vice versa. Malic acid may be a bit safer.
Aspartic acid can actualize the urhea cycle, helping the body to remove
ammonia.
Polly
I would like to know if everyone has had a full genome screen for their kids,
as we know, Tuberous Sclerosis is the second highest IDENTIFIABLE cause of
autism..(fragile X is the first I believe) and there are so many other
chromosomal/genetic abnormalities that ARE identifiable...and also have
'spectrums' ie NOT every kid with 'fragile x' has all the physical
features....same with Angelman Syndrome.....why isn't it a matter of COURSE
that every doctor must have a complete chromosome screen (among others such
as undetected PKU...mistaken results are common apparently) AS well as a full
'immune profile' to establish CD4 counts etc....ie is this a viral cause, if
so, is it related to the MMR or is it a 'stealth' viral infection and needed
to be treated as such? I do think we should eliminate all the KNOWN CAUSES of
autism before steaming ahead with treatments that the medical profession
refuse to agree upon. Best wishes, Liz Lucy.
Med Hypotheses 1998 Jun;50(6):497-500
Autism: a mitochondrial disorder?
Lombard J
Westchester Square Medical Center, New York, NY 10461, USA.
Autism is a developmental disorder characterized by disturbance in
language, perception and socialization. A variety of biochemical,
anatomical and neuroradiographical studies imply a disturbance of brain
energy metabolism in autistic patients. The underlying etiology
of a disturbed bioenergetic metabolism in autism is unknown. A likely
etiological possibility may involve mitochondrial dysfunction with
concomitant defects in neuronal oxidative phosphorylation within the
central nervous system. This hypothesis is supported by a frequent
association of lactic acidosis and carnitine deficiency in autistic
patients. Mitochondria are vulnerable to a wide array of endogenous
and exogenous factors which appear to be linked by excessive nitric
oxide production. Strategies to augment mitochondrial function,
either by decreasing production of endogenous toxic metabolites,
reducing nitric oxide production, or stimulating mitochondrial enzyme
activity may be beneficial in the treatment of autism.
--
http://members.xoom.com/Neil_S_Clark/autism.html
It was made clear on this list that a list member has been accessing credit
reports from individuals that give Dr. Goldberg a "bad rap". In service to
all list mates, I am providing the following.
TRW reporting is protected by law. It can only be accessed by a person's
written consent or a court order. The Fair Credit Reporting Act lists
reasons a credit report can be accessed. "Curiosity" is not among them.
The following is from the Fair Credit Reporting Act
S.619. Obtaining information under false pretenses {15 USCS 1681q]
Any person who knowingly and willfully obtains information on a consumer
from a consumer reporting agency under false pretenses shall be fined under
title 18, United States Code, imprisoned for not more that 2 years, or both.
S.621
2)(A) In the event of a knowing violation, which constitutes a pattern of
practice of violations of this title, the Commission may commence a civil
action to recover a civil penalty in a district court of the United States
against any person that violates this title. In such action, such person
shall be liable for a civil penalty of not more than $2500 per violation.
In addition, TRW cannot be accessed by name. I would like to know how this
individual was able to access social security numbers of Dr. Goldberg's
patients.
Jo Silva
Everyone of my Autistic children are allergic to sulphur.
I
--
http://members.xoom.com/Neil_S_Clark/autism.html
I was so happy to see this letter. The only concern I had was that Ann
Landers suggested seeking input for pediatricians...and often they don't know
and adopt a wait-and-see philosophy. This can result in a long delay of
services. Do others agree? Should we send a note to Ann Landers and tell
parents to persevere or just let it go? Becky
FEAT DAILY ONLINE NEWSLETTER Families for Early Autism Treatment
http://www.feat.org M.I.N.D: http://mindinstitute.ucdmc.ucdavis.edu
Letters Editor: FEAT@... Archive: http://www.feat.org/listarchive/
"Healing Autism: No Finer a Cause on the Planet"
Please unsuscribe me from this list.
Thankyou
ILuvARose@...
Beth
I don't think you caused Michelle to drop from this list; she probably used
your letter to get the onlist address--stay on the list if it helps you and
your child; chances are you'll offend at least one person along the way
anyway!
kate
This is one study. Has it been replicated? In a larger population?
Chromosomes are inherited as homologous pairs, each person has two genes for
every trait, so in each autosome you have matched genes. Eye color is a good
example. In an autosome you have a gene for eye color and it's partner has a
gene for eye color in the same place, if the gene is both brown you have a
brown eyed offspring (that person would be homozygous for that trait) if the
genes were two different colors the dominant would prevail and the person
would be heterozygous for the trait. That is why you should not marry a
sibling because the chance that you would have two bad genes (resulting in
bad outcomes not that the genes are bad) in an autosome are greater than if
the partners are unrelated. It is now possible to trace some genetic
conditions to the parent who contributed it (not that I think that is
necessarily good) and I am not referring to sex linked genetic disorders.
This is all natures way of trying to give the offspring a better chance of
being healthy. KathyR
Hi all,
I was reading my digest tonight and attached to my Help!!!! message was
MICHELLE BUFKIN's request to unsubscribe. I truely hope I havn't done anything
to offend Michelle that has caused her to leave the list. If I have, I would
prefer it to be me that leaves the list instead. Can anyone see what I have
done wrong to cause this. (:-{
Beth ô¿ô (Digest no 177, no12 message)
hello, does anyone have experiences with dr Unruh from Pennsylvania ? You
can e-mail me privately : josianeherben@.... Thank you.
Convergent findings from behavioral neuroscience, platelet,
pharmacologic,
and genetic studies indicate the involvement of 5-HT in many of the
symptoms
of autistic disorder. Over the next decade, as the molecular biology of
serotonin related proteins is elucidated and medications are developed
using
this knowledge, it will be possible to assist people with autism to more
effectively control the disabling symptoms of aggression, anxiety, and
inflexible rituals and routines. As the molecular biology of the role of
5-HT in CNS development is elucidated, it may become possible to treat
or
prevent the development of the social and cognitive dysfunction of
autism,
through rational pharmacological or dietary intervention.
32. McDougle C, Naylor S, Cohen D, Volkmar F, Heninger G, Price L: A
double-blind, placebo-controlled study of fluvoxamine in adults with
autistic disorder. Arch Gen Psychaitry 1996, 53:in press.
This paper represents the first study in which double-blind efficacy,
without potential long-term irreversible side effects (i.e.
neuroleptics),
has been replicated for a class of medications, potent serotonin
transporter
inhibitors, in the treatment of core symptoms of autistic disorder. This
paper is also significant because it is the first study showing
double-blind
efficacy for a selective serotonin reuptake inhibitor (SSRI) in autistic
disorder, confirming an earlier systematic open trial with fluoxetine.
Although the core social and communicative impairments are not addressed
by
this class of medications, rituals, preoccupations, and routines
associated
with anxiety and aggression often respond.
--
http://members.xoom.com/Neil_S_Clark/autism.html
Dr. Goldberg's initial visit with my daughter cost $395: $295 for the
visit and $100 for the record review (he really thoroughly reviews the
records). They told me the cost up front on the phone, it is no secret.
After insurance, the blood work cost me $32 for the test covered and
$295 for one test I am appealing. It is the transportation, lodging and
time
off from work which make it costly.
Yes, I'm attending. I live is Liberty Lake, WA. I have an 11 yr. old
Autistic son. I am looking forward to it. Traci
What? Is this referring to a C4B problem,
(one parent & child)?
--
http://members.xoom.com/Neil_S_Clark/autism.html
You might try getting your son off diary until symptoms clear up. Diary
caused ear infections in my daughter.
Mary K.
Does anyone know the name of the church in Medford NJ who does the religious
exemption for vaccines. I'm trying to get my son in to school. Please
help!!
Listmates,
My son has just gotten over a head cold, all that remains is a cough.
Today he came home from school telling me his ear "tick ticks all the
time". I asked him if it was more like a "popping" thinking that as
his head cold drained, maybe his ears were draining too. He agreed
with me it could be a "pop", but who knows.
The last thing I want is the dreaded ear infection with Antibiotics,
we still have a bad enough yeast infection that we are treating. Any
suggestions as to what to give him if this thing progresses? Any
preventative measures you might suggest?
Thank you,
Kelli
Neil, remember that there are two copies of every gene, one from Mom and one
from Dad and it is unlikely that one would be missing both copies. The
results is a lessened ability than normal to do something but not the total
lack of ability to do it. Treatment would therefore be longer. Kathy
call Dr, Bradstreet at 407-953-0278 from a happy client
Listies,
I'm looking for anyone that's attending the AAEM (American Academy of
Environmental Medicine), conference on October the 9th, in Idaho..They were
taking 100 people, and are now full....so anyone going??
Vicki
Absence of linkage and linkage disequilibrium to chromosome 15q11-q13
markers in 139 multiplex families with autism.
Salmon B, Hallmayer J, Rogers T, Kalaydjieva L, Petersen PB, Nicholas P,
Pingree C, McMahon W, Spiker D, Lotspeich L, Kraemer H, McCague P, Dimiceli
S, Nouri N, Pitts T, Yang J, Hinds D, Myers RM, Risch N
Centre for Clinical Research in Neuropsychiatry, Graylands
Hospital/University of Western Australia, Perth, Australia.
[Record supplied by publisher]
Am J Med Genet 1999 Oct 15;88(5):551-556
Chromosomal region 15q11-q13 has been implicated to harbor a susceptibility
gene or genes underlying autism. Evidence has been derived from the
existence of cytogenetic anomalies in this region associated with autism,
and the report of linkage in a modest collection of multiplex families. Most
recently, linkage disequilibrium with the marker GABRB3-155CA2 in the
candidate locus GABRB3, located in this region, has been reported. We
searched for linkage using eight microsatellite markers located in this
region of chromosome 15 in 147 affected sib-pairs from 139 multiplex autism
families. We also tested for linkage disequilibrium in the same set of
families with the same markers. We found no evidence for excess allele
sharing (linkage) for the markers in this region. Also, we found no evidence
of linkage disequilibrium, including for the locus GABRB3-155CA2. Thus, it
appears that the role of this region of chromosome 15 is minor, at best, in
the majority of individuals with autism. Am. J. Med. Genet. (Neuropsychiatr.
Genet.) 88:551-556, 1999. Copyright 1999 Wiley-Liss, Inc.
PMID: 10490715
Serotonin transporter (5-HTT) and gamma-aminobutyric acid receptor subunit
beta3 (GABRB3) gene polymorphisms are not associated with autism in the
IMGSA families.
Maestrini E, Lai C, Marlow A, Matthews N, Wallace S, Bailey A, Cook EH,
Weeks DE, Monaco AP
The Wellcome Trust Centre for Human Genetics, University of Oxford, Oxford,
U.K.
Am J Med Genet 1999 Oct 15;88(5):492-496
[Record supplied by publisher]
Previous studies have suggested that the serotonin transporter (5-HTT) gene
and the gamma-aminobutyric acid receptor subunit beta3 (GABRB3) gene, or
other genes in the 15q11-q13 region, are possibly involved in susceptibility
to autism. To test this hypothesis we performed an association study on the
collection of families from the International Molecular Genetic Study of
Autism (IMGSA) Consortium, using the transmission disequilibrium test. Two
polymorphisms in the 5-HTT gene (a functional insertion-deletion
polymorphism in the promoter and a variable number tandem repeat in the
second intron) were examined in 90 families comprising 174 affected
individuals. Furthermore, seven microsatellite markers spanning the
15q11-q13 region were studied in 94 families with 182 affected individuals.
No significant evidence of association or linkage was found at any of the
markers tested, indicating that the 5-HTT and the GABRB3 genes are unlikely
to play a major role in the aetiology of autism in our family data set. Am.
J. Med. Genet. (Neuropsychiatr. Genet.) 88:492-496, 1999. Copyright 1999
Wiley-Liss, Inc.
PMID: 10490705
To those who responded to my Prozac dosage question - Thank you.
It looks like my daughter is on the low end of the dosage - and still
receiving benefit from it. I hope this continues to be true.
By the way - to all who are interested - I took my daughter to see Dr.
Goldberg in California in January when she was 3 1/2. We had been through a
couple of horrific months where I watching my daughter withdraw even further
into her own world and stop eating. I literally had to force feed her to get
anything down her. She was losing weight rapidly and was generally in poor
health. Genna was already on a gluten/casein free diet which seemed to make
things worse! Dr. Goldberg started her on the Anti-viral and we saw results
very quickly. Genna started eating voluntarily (although her diet is still
very limited). We added the Prozac, at a very low dosage, in April. From
the first day on Prozac genna started sleeping through the night - what a
bonus! She slowly emerged from her shell and started to notice the world
around her. Friends of mine were saying things like "I have never seen Genna
actually look around when she comes into a room - and now she is actually
interested!" We started the anti-fungal in May. Genna has been non-verbal
but now we are starting to see language develop. The daughter I see now is
so different from the daughter I saw 8 months ago. She is happy, healthy and
starting to interact with the world around her. I credit this to a number of
things including Dr. Goldberg's help, a great school system which works with
here one-on-one, and my family's never failing love and support.
If anyone is living in the Chicago area and needs resources or support,
please feel free to contact me - ansburgco@....
Thanks to all for the informative and supportive postings. We will beat this
thing!
Bonnie Ansburg Marshall
Neil,
Thanks for the info.I will check them out.I feel there is something
endocrine going on with my son due to the fact that he is gaining weight so
fast.Put on 6 pounds in about 4 weeks time. He gained 28 pounds in a
year.Ttaking him to have thyroid testing done then on to a pediatric
endocrinologist.
Thanks,
Mary
http://www.ncbi.nlm.nih.gov/pubmed = Medical Information Search
Enter: Hypoglycemia insulin autism - as KEYwords to Search for
4 listings: including
Similarly in our locality -- but the program (CAPMR/DD) was underfunded and
there was a long waiting list of qualified kids waiting for benefits. So it
can be very important to get signed up ASAP, since you may be waiting for
quite a while after that before you see any $$.
I know we all have different opinions, but thats what makes things
interesting. But it seems to me that the NIDS studies would be
beneficial for all of us. I think the majority believes that the immune
system is involved, regardless of what is causing it. My
understanding(as little as that is) is that the studies will be done
consistant with NIH type studies. It seems that that would document
this as a true medical condition, if they can show that there are
consistant sub-groups of abnormalities. There is a term that has been
used alot, "cigarette science". You create studies that contradict any
studies showing that something causes damage, just like the cigarette
companies did for decades. That is what is going to happen to anyone
who tries to say that immunizations or whatever is causing this. At
this point we don't need to find the cause, we need to have proof that
our kids have a medical condition. That is what is going to help us get
to the cause later.
Cheryl
Genetics:
C4B gene abnormalities- common in our kids
-this particular gene
handles VIRALS TOXINS and Fungals.
ie Immune prob??
So if the body genetically
CaN not work properly in this area,
what could one do?
(BESIDES PANIC)
--
http://members.xoom.com/Neil_S_Clark/autism.html
--
http://members.xoom.com/Neil_S_Clark/autism.html
I wonder if it has anything to do with
obcessive behaviour also?
I went to this site and didn't see anything about hyperinsulinaemic
hypoglycemia.Where is it at?
Thanks,
Mary
From: kahlers@...
Subject: Re: Prozac study
The dose of fluoxetine (Prozac) used in the original DeLong study was
0.2
- 1.4 mg/kg/d "based on best treatment response without intolerable side
effects." The usual dose for children is 0.5 - 1.0 mg/kg/d, so the dose
used in the study is about the same used in other settings.
Pauls on 1mg (5kg) and I'm on 2mg (if that)
which is on the low range.
CFS/Immune types CAN be very sensitive to things.
Thats why effective dosage often varies widely.
Also I find having say a 50% change is better for me IMO
its like being still 50% aware of your true self.
--
http://members.xoom.com/Neil_S_Clark/autism.html
(explains a lot of my posts doesn't it)
Can anyone tell me what the fees of Dr. Goldberg are?
And what tests does he usually reccomend?
If I will spend my vacation in the states, I will bring my son to his office. In
that case, do you think I could have the possibility to make such tests in Italy
and then bring the results to him? It wouldn't cost anything here.
Thanks.
Laura from Italy
One way of getting people to think
(hopefully for themselves)
is to confuse them.
If one disagrees with the establishment
thats good.
The next step is to disagree with your disagreement.
The opposite side of the coin.
The next step is to acknowledge that
opposites are just different perspectives
of the same thing.
ie both are valid.
Its like any two opposites put a box around
any problem.
Thats better than a single solution that
exists in an open ended box.
Everyone knows there is no (100%) guaranteed
solution to any one problem.
The good thing is that there are infinite solutions
to any perceived problem.
Thats good.
No thats bad.
Yes/No thats good/bad.
Obvious isn't it.
Are you confused yet?
--
http://members.xoom.com/Neil_S_Clark/autism.html
--
http://members.xoom.com/Neil_S_Clark/autism.html
Does one ever get rid of them?
I doubt it.
I suppose the only hope is control.
For that to happen the body probably
needs to be more healthy. IMO
Otherwise the body will continue to
look after itself the best way it can.
--
http://members.xoom.com/Neil_S_Clark/autism.html
Thanks to all of you who responded to my plea. No one has ever suggested I
take my son off milk before but I will try it for now and see how it works.
We have never had him tested for allergies but am in the process of doing
so now. I will let you all know how things are going for my son. Again
thank you to everyone who responded.
Versa
Dear Listmates,
I am hoping that now that the annual MAT Board of Directors meeting
has occurred, perhaps Pat will have more information for us soon on
how we can form a MAT-California chapter.
I'm trying to put together an email list of interested parties so we
can keep everyone updated on things. Please email me privately at
sandy@... if you would like to be included in the MAT-CA
list.
Thanks!
Sandy
sandy@...
I am in the unusual position of being a parent, a health care provider, and a
potential patient and have a lot of comments that I would like to make about
this DAN issue but will not. Please remember that the practice of medicine
is a science and also an art. The science is the cookbook part but the art is
knowing when to ignore the cookbook. It is a bitter disappointment to put
the time, energy, money, and hope into visiting yet another specialist and
then watch your child not make progress...again. In the health care field
you have to develop some kind of spiritual philosophy to help you come to
grips with the fact that even if you follow all of the rules it is not going
to work for everyone even if it should. As a practitioner for over 30 years
mine is "life is unfair." As a parent you have to develop a much more
complicated philosophy, I think, in order to keep up the energy to keep on
fighting for your child. The one thing you cannot do is hold on to anger and
let it hurt you (and others). I'm sorry every time a treatment fails for
everyone concerned. So, learn what you won't do again and then march on, and
hope that the next person has more luck! Kathy R
Marlene,
Alot of the CFS sites have copies of the Soc. Sec. Disab. Info. Here is
a link to one.
http://www.delaware.infi.net/~msch/cfsme/ssa0499.html
I was asked to post information about EPD to the List. Rather than risk
giving an inaccurate summary of EPD and who offers the treatment, I am
posting some links which will provid the information.
General EPD Info can be found at:
http://www.dma.org/~rohrers/allergy/allergy.htm
http://www.food-allergy.org/epd.html
http://www.best.com/~athene/epdns.html
In theory, you can get a list of EPD Doctors at:
http://www.epdallergy.com/
However, I was unable to attach to the site while writing this note.
Versa,
Our son had a similar experience. He used to have non stop ear infections
until we took him off all products that contained casein. Since then, in the
last two years, he has had maybe one ear infection. We also followed up with
a blood test and confirmed that he had severe allergies to casein.
I would also highly recommend that book by Michael Schmidt - Childhood Ear
Infections.
sanjay
stikku@...
Bunny:
Right now, I have just one question.
If financial records between doctor & patient are confidential, how do you
know who is sent to collections?
Jo
http://www.ncbi.nlm.nih.gov/pubmed
Pub/med Abstract search KEYWORD PROZAC
This gave 3178 References - which one is it?
so I tried using 2 keywords: prozac delong
which came up with this:
DeLong GR, et al. [See Related Articles]
Effects of fluoxetine treatment in young children with idiopathic
autism. Dev Med Child Neurol. 1998 Aug;40(8):551-62.
PMID: 9746008; UI: 98417090.
my 9 year old had chronic ear infections also , (the doc put him on
continuous antibiotics), and the yeast grew so bad that it blocked his urine
flow. After sustained treatment on antifungal drugs (first nystatin , then
nizoral)----no more rash,no more ear infections.
I did a lot of investigating before taking my child to Dr. Goldberg.
Basically what I found out is most of the people who bad rap him are the ones
who didnt pay him for his services and were sent to collection.
Dr. Goldberg was part of the original Dan meeting but could not sign the
protocol and keep the initials UCLA after his name as the university felt some
of the test were science fiction if not opening the case for a class action
law-suit from parents advising tests that were not proven.
I have never heard Dr. Goldberg spit venom in regards to DAN, as JO on this list
has proclaimed, however he is really annoyed that their lack of open-mindedness
is only taking away from the momentum need to solve this problem NOW while our
kids are young enough!
I thank God I found Dr. Goldberg for my daughter, Im sorry for those who may
not feel that way however I dont believe this list was intended to bash any
doctor.
Try r