Tonight as I'm feeling nasty, brutish, and unfortunately not short

I think I'm angry.  I'm not even sure what I feel any more but this might be somewhat angry.

SO many people have done so much for our whole family in the last few weeks.  I can't describe the degree to which I'm grateful to everyone for all of it (well, I don't seem to be able to describe much emotionally right now, do I?).  People have sent huge, delicious meals for the whole family; people have organized all of that; people out of town have sent meals.  It's so very much appreciated and so needed and I cry every time I think about it and how many incredible people have helped.

Why am I angry?  Because even with all this giving, which has done so much to fill our hearts and our stomachs, there's still emptiness in me.  Everyone around me is doing so much good, going so far out of their way to help and support us.  Yet still things are in turmoil.  The two more disabled and difficult kids are still home and still have nothing and we still have to deal with them minute-by-minute.  The other older daughter is still hospitalized indefinitely based on her needs and there's no real sign of medical improvement.  And yes, I'm still so very deeply depressed.

Just to be clear, I'M NOT ANGRY AT THE WONDERFUL PEOPLE AROUND ME!  Every thing everyone has done is, so appreciated by me.  I really didn't ever imagine so much help could come to us, and I appreciate every single thing.  It's this anger at the universe that remains.  Why?  Why? Why? With so many people trying to right wrongs and trying to help, why is there this pain, this depth of need not met, this lack of social services, these needs?  If it's me, why am I so very needy?  If it's not me, I don't even know what questions to ask.

I messed up on keeping track of my medications, and have to go two nights without the prescription medicine I usually take nightly to help me calm my thoughts.  This probably wouldn't have been too bad except that two nights before I ran out I already started having insomnia, keeping me awake until about 4 AM.  I really am trying not to self-medicate with alcohol or anything like that.  So I'm angry, and depressed, and stressed, and under-medicated (entirely my own fault, it's just that in all the chaos and with the effects of depression making me even more disorganized than usual, I forgot that last weekend I saw I would run out during the week).   But I'm that much MORE agitated given this.

Poor kids are feeling the effects of all the stress.  I've really, really, really made what feels like a super-human effort to not show my stress in front of them as much as possible (yeah, I'm not so good at that). But in the last 3 days, poor little 6 year old has dissolved 3 times into sobbing over nothings.  She's closest to her sister who's in the hospital 90 minutes away, and I know it's really hurting her.  Hopefully tomorrow she is going to go visit at the hospital, but I don't know if that's really going to make things better or worse.  And F is definitely in a really bad place now, he's very angry at the world.

I just read a very good book about the need for collaboration between human medicine and veterinary research (not animal research for the purpose of human medicine, but the body of existing veterinary knowledge and research).  Veterinarians have always known of the existence of "capture myopathy," especially cardiomyopathy.  In essence, situational circumstances which cause emotional stress cause critical physical damage, especially to the muscles, and particularly to heart muscles.  The simple act of fearing capture (imminent or imagined) is enough to cause animals to simply die of heart attack.  The mechanisms of how this works on a cellular level are pretty well understood.  But human cardiologists never consulted their veterinary equivalents, and so psychological-stress-induced illness research in humans is in its infancy.  We all know sudden surprise or stress can cause human medical disruption from fainting to heart attack, but no one bothered to acknowledge and research the pathways, the risks, and the ubiquity of the problem.  In reality, it's very clear.  Constant stress causes constant body damage, both chronic and acute; stress is perceived by the mind without conscious choice by the individual (it's not a personal failing to feel stressed); and stress can kill either indirectly or directly.  Yet the treatment for humans sick with stress is to tell them to be more mindful (as if stress is under personal control), that it's their cognitive choice to respond negatively.  Worse yet, when an individual or a family group is in overwhelmingly stressful circumstances, neither medical practitioners to whom this is explained nor social agencies supposedly charged with helping this act to remediate the stress.

As usual, I've been knitting compulsively through all of this.  I can't figure out if I like or hate this.  The problem is I love the dark yarn, but don't feel much affection for the light one. I think in the long run, the effect will be good, but it's this lingering dislike of a yarn that's skewing my feeling for the piece.  But I'm so brain-disturbed that I can't knit anything except this pattern right now.  This I can work zombie-style, relentlessly, thoughtlessly, emotion-free, without effort.  That's all I can manage.

Demeanor

Parenting a child with special needs is exhausting, overwhelming, and unappreciated.

Parenting multiple children with special needs is debilitating.

Parenting multiple children with special needs that involve unrelenting blows to the family finances is crushing.

Parenting multiple children with special needs that involve unrelenting blows to the family finances while following a religious tradition that means higher costs to the family than average in America for food, education, and holiday observances is staggering.

Parenting multiple children with special needs that involve unrelenting blows to the family finances while following a religious tradition that means higher costs to the family than average in America for food, education, and holiday observances, and having a disability of your own is overpowering.

Parenting multiple children with special needs that involve unrelenting blows to the family finances while following a religious tradition that means higher costs to the family than average in America for food, education, and holiday observances, and having a disability of your own and having that disability be depression is paralyzing to the point of breakdown.

That's where I am.

Breakdown.

It's black and white.

I can't do this anymore the way things are.

There are only two values--light and dark.  There's no color.  There's no tint.  There's no hint of change or respite or relief or solace or succor or deliverance.

There's light which isn't coming and dark which is everywhere.

Don't ask me "how are you?" Don't ask "can I help with anything?"  The brain is turned off except to note light and dark.  Planning is switched off.  Coping is switched off.  Progressing is switched off.

What's on?  Light and dark.  Family needs to eat.  Family needs to have happy holidays.  Family members have obligations.  Family members have appointments.  Get everyone everywhere they need to be.  Get them everything they need to have.  Ensure everyone can do what they've decided is their right or privilege.  Answer the phone.  Cook the food.  Run the errands.  Make the appointments.  

Maybe you have more than light and dark.  I don't know anything else right now.

A Thank You They Won't See

A few days ago, school bookkeeper Antoinette Tuff talked down a young man who had arrived at the school where she worked with a firearm taken from a friend.  She engaged him while having dialed 911, discussed his situation, and eventually convinced him to put down the weapon.  She is universally being hailed as a hero, and rightly so.  To my mind though she is not a hero because she was successful in calmly disarming the alleged would-be shooter.  She is a hero because she tried.  Had she been unsuccessful, her attempt would have been none the less heroic.

And this brings me to say "thank you."  Thank you to every parent, friend, stranger who has attempted to talk down a young person from irrationality to reality.  Whether or not the effort was successful, I do know your actions were heroic.  So many people wouldn't have tried, certainly not with the same calm and the same humanity you showed.  When you've been successful, often, no one knows that you did it.  When you've not been, no one acknowledged your valiant efforts.

This afternoon, I calmed down my son who has an intellectual disability and emotional and behavioral problems.  He was threatening to hurt himself, suggesting he needed hospitalization.  With years of practice from so many of these conversations, we talked to him, waited, watched, helped.  He did calm down.  There have been other times we have made the same effort but not been successful; he didn't quickly return to rationality then, once he has needed to be hospitalized, another time taken to an emergency crisis center.

Compared to many people's experiences, whether one-time or frequent, with other young people who are unable to make sense of their immediate world, ours this afternoon was quite tame.  But it reminded me to say this.  To say a "thank you" to so many people who have made a difference or even just tried to make a difference when they had someone nearby who may have genuinely been a danger to themselves or to others.  You are heroes, even if no one is telling you this.

Speaking not just as the mom

I do occasionally post on this blog not just about food and wool, but about being the parent of children with a variety of special needs; medical, psychiatric, intellectual.  Having trained as a medical librarian, I also get involved in a lot of other families' needs when it comes to finding information.  Today, though, I'm writing about myself more than anyone else.

A new study has been published, showing a likely neurologic cause for sensory processing disorders.  Happily, it's been published in an online open access peer reviewed format, so we can all see the original report, as well as an analysis, and a public statement from The Sensory Processing Disorder Foundation.

What I do take issue with is the fact that the foundation only seems to have an interest in this disorder in children.  The fact is that it continues on into adulthood in many cases.  How do I know?  I live with it daily.

Touch for me invokes panic.  Loud noise, disorganized noise, chaotic noise gives me tunnel vision and an urge to flee.  Chaotic movement around me like in a large crowd makes me unable to focus or even just do what I've come to do.  Even driving can be more difficult for me daily simply because there are too many different sensory foci to process--the visual corner-of-the-eye, the auditory cues, the physical act of using the steering wheel and pedals, as well as conversation if there are others in the car, and so on.  I never knew until adulthood that others don't experience life as if it were hundreds of single snapshots a second, but rather smoothly and continuously (or so I am told).

I've learned to live with it, though adolescence was very hard (no one when I was a kid had ever heard of this, so my parents thought I was just being annoying when I seemed to lose my mind on long car trips shoved up against other people with their talking surrounding me and no possibility of respite).  I do my shopping when I think stores, malls, markets will be least busy.  I take the children to the pool on weekdays but never weekends.  I just plain don't go downtown.  I force myself to attend important ceremonies like graduations, awards, weddings, but I spend days beforehand in dread.

I'm lucky to have an extraordinarily understanding husband.  Imagine taking a spouse and only discovering over time that spouse can't stand the feeling of a brush of a hand, a lip, a hand holding.  I didn't know this until I was married and had the opportunity to find out, and you can imagine my poor husband certainly had no idea what he was in for.

I note with interest that the researchers attribute the problem to white matter balance in the brain, because when my son with dysgenesis corpus callosum and septo-optic dysplasia/optic nerve hypoplasia had a brain MRI, one thing that was noted which no neurologist then (about 12 years ago) could make anything of; they all agreed it was odd, but they didn't know what if anything it meant.  I have no idea if I have the same imbalance or not, but this would seem to suggest the answer is yes.

Recently other research has suggested a single genetic tie between bi-polar disorder, schizophrenia, autism, and other neurologically based disorders, which previously had all been considered to be caused by different psychiatric, developmental, and other roots.  Now this study shows a single physical abnormality correlating to a condition that's common in many people who do suffer from all of those different disorders.  

I hate having this problem, I would will it away in a moment given a genie in a bottle, but at least I'm living in a time of significant research and validation of the experience of those with hard-to-pin-down, formerly ignored neurologic experiences.

Give him an "A" for appalling

The principal of local Albert Einstein High School posted the following on the school website and apparently distributed the notice to families.  This is one of the most appalling, offensive, unprofessional, regressed, and generally inappropriate statements I have ever heard in modern public education.  He has removed it from the website after complaints, but has issued no apology and has stated to advocates that he fails to see what is wrong with what he wrote.  Screen shot is here as apparently the school did take it down.

We will have a new special needs program at Einstein next year called Extensions. The technical description of the Program is, “ … these students have moderate, severe, or profound intellectual disabilities, or multiple disabilities including intellectual disabilities and/or autism. These students have a prolonged history of aggressive, self-injurious, destructive, or disruptive behaviors that have not responded to functional and systematic behavioral interventions … .” 

Our current School Community Based Program is very similar except for the, “ aggressive, self-injurious … ” component. The Extensions Program is self-contained with the exception of their physical education class which is restricted to Extensions students only.  

I am aware that some are concerned about the aggressive nature of some of the kids in the Program. Extension students will come by special transportation, have two of their own classrooms and restrooms, eat lunch in their rooms and essentially be self-contained other than their phys. ed. class. 

Although it is sad that these students do not have the same capacity and abilities and be able to totally participate in Einstein life,  as the remainder of our student body, we will welcome them and their parents and guardians with open arms and gladly. There is no cause for alarm that any of the students not in the Program are in danger. This Program exists in other schools and is growing which is why we have been awarded and welcome its placement at Einstein. 

If you have any questions or concerns about the Program please contact me or Charmaine Roberts who is in charge of our special education program.  

Thanks,

Mr. Fernandez 

For those who needed more information on Autism diagnosis specificity

For those who requested information on the fact that autism incidence is not increasing, but rather diagnostic specificity is, here are one magazine and two journal citations:

Time magazine article, "Is the autism epidemic a myth?"

The changing prevalence of autism in California

Croen LA, Grether JK, Hoogstrate J, Selvin S.; J Autism Dev Disord 2002 Jun; 32(2):207-15

We conducted a population-based study of eight successive California births cohorts to examine the degree to which improvements in detection and changes in diagnosis contribute to the observed increase in autism prevalence.  Children born in 1987-1994 who had autism were identified from the statewide agency responsible for coordinating services for individuals with developmental disabilities.  To evaluate the role of diagnostic sustitution, trends in prevalence of mental retardation without autism were also investigated.  A total of 5038 children with full syndrome autism were identified from 4,590,333 California births, a prevalence of 11.0 per 10,000.  During the study period, prevalence increased from 5.8 to 14.9 per 10,000, for an absolute change of 9.1 per 10,000.  The pattern of increase was not influenced by maternal age, race/ethnicity, education, child gender, or plurality.  During the same period, the prevalence of mental retardation without autism decreased from 28.8 to 19.5 per 10,000 for an absolute change of 9.3 per 10,000.  These data suggest that improvements in detection and changes in diagnosis account for the observed increase in autism; whether there has also been a true increase of incidence is not known.

The epidemiology of autistic spectrum disorders:  is the prevalence rising?

Wing, L, Potter D.; Ment Retard Dev Disabil Res Rev 2002;8(3):151-61

For decades after Kanner's original paper on the subject was published in 1943, autism was generally considered to be a rare condition with a prevalence of around 2-4 per 10,000 children.  Then, studies carried out in the late 1990s and the present century reported annual rises in incidence of autism in pre-school children, based on age of diagnosis, and increases in the age-specific prevalence rates in children.  Prevalence rates of up to 60 per 10,000 for autism and even more for the whole autistic spectrum were reported.  Reasons for these increases include changes in diagnostic criteria, development of the concept of a wide autistic spectrum, different methods used in studies, growing awareness and knowledge among parents and professional workers and the development of specialist services, as well as the possibility of a true increase in numbers.

Remember, please, that it is not possible to prove a negative.  The research above pretty conclusively shows where the numbers are coming from, though.  I'm not trying to spur debate, just provide the information which was requested.  Just call me your friendly neighborhood medical librarian.

One Autism-linked Gene Identified

Original posting at http://www.eurekalert.org/pub_releases/2008-09/econ-tfa082708.php
Public release date: 1-Sep-2008...
Contact: Sonja Maks.mak@update.europe.at43-140-557-340European College of Neuropsychopharmacology
The first autism disease genes
Presented at the 21st Congress of the European College of Neuropsychopharmacology 2008, Barcelona, Spain
This release is available in Spanish.
The autistic disorder was first described, more than sixty years ago, by Dr. Leo Kanner of the Johns Hopkins Hospital (USA), who created the new label ´early infantile autism´. At the same time an Austrian scientist, Dr. Hans Asperger, described a milder form of the disorder that became known as Asperger Syndrome, characterised by higher cognitive abilities and more normal language function. Today, both disorders are classified in the continuum of ´Pervasive Developmental Disorders´ (PDD), more often referred to as Autism Spectrum Disorders (ASD).
The prevalence of (classic) autism in the general population is about 15-20 in 10.000, while all Autism Spectrum Disorders (ASD) affect about 60 in 10.000 children. Males are affected four times more often than females. In approximately 10% of cases, autism is associated with a recognized cause, such as Fragile X Syndrome, Tuberous Sclerosis or diverse chromosomal abnormalities (mean observed rates between 5-10%), but in a vast majority of cases, no known causes are associated with autism (see figure).
All of these neurodevelopmental disorders are characterized by varying deficits in communication skills, social interactions, and restricted, repetitive and stereotyped patterns of interests and activities. Problems that may accompany these disorders are sensory distortion, mental retardation or seizures. Disease onset occurs during the first three years of life. Although early intervention has considerable impact on reducing symptoms and increasing a child´s ability to learn new skills, it is estimated that only 50% of children are diagnosed before the age of 3 years.
Most children with ASD respond well to behavioural management and highly structured, specialized programs in educational settings. Other therapeutic interventions comprise medications to treat behavioural problems such as aggression, self-injury, or severe tantrums.
Warning signs for Autism Spectrum Disorders such as social symptoms, communication deficits and repetitive behaviours should be considered sufficient reason to have a child evaluated by specialized professionals. The earlier the disorder is diagnosed, the sooner the child can be helped through treatment interventions.
Advances in autism research: genetic influences
Research into the causes, diagnosis, and the treatment of ASD has advanced interactively. Imaging studies have shown that many major brain structures are implicated in autism. Other research is focusing on the role of neurotransmitters such as serotonin, dopamine, and epinephrine. The past decade has been marked by an increased interest in the genetic basis of autism, and recent developments point to genetic factors playing a prominent role in the causes for ASD.
The role of gene mutations in autism
Twin and family studies have suggested an underlying genetic vulnerability to ASD. The estimated prevalence of autism in siblings is 5-10%. A higher recurrence risk in families with autistic subjects (45-times greater than the prevalence in the general population) and higher concordance for autism among monozygotic (60-90%) than dizygotic (0-10%) twins argue for a genetic predisposition to idiopathic autism. These data are interpreted as showing that liability to autism is in large part due to oligogenic inheritance in which a combination of multiple – possibly interacting – susceptibility alleles results in autism. A series of multiple independent whole genome scans and chromosomal abnormality studies have pointed out several candidate regions on chromosomes 2q, 7q, 6q, 15q and sex chromosomes. These regions possess candidate genes that have been screened for mutations or association with autism. In a European multicentre project called PARIS (Paris Autism Sib-pair International Study; coordinated by C. Gillberg & M. Leboyer) a large number of multiply affected families were identified, and several mutations of genes encoding proteins implicated in the process of synapse formation (synaptogenesis) have been described.
Autism and synapse formation (synaptogenesis)
In 2003 two new highly conserved members of the human neuroligin family – HNL4, located at Xp22.3 – were characterized (Jamain et al, 2003). A crucial factor in synapse formation, neuroligins are cell adhesion molecules that can trigger the formation of presynaptic structures in non-neuronal cells. The rare mutations of the neuroligins (1%) are associated with autism spectrum conditions. Another step forward in this compelling neurobiological story was the identification of a de novo frame-shift mutation in the X-linked HNL4 gene in two brothers, one with autism and the other with Asperger Syndrome. Since autism and Asperger Syndrome are overly represented in males, mutations in these genes may influence the process of synaptogenesis, and consequently may predispose males to Autism Spectrum Disorders.
In 2007, mutations of another gene encoding SHANK3 were reported (Durand et al, 2007). This gene regulates the structural organization of dendritic spines in neurons and is a binding partner of neuroligins, previously found to be mutated in autism and Asperger Syndrome. Surprisingly, a mutation of a single copy of SHANK3 at chromosome 22q13 is sufficient to induce language impairment, learning disabilities and/or social communication disorders associated with Autism Spectrum Disorders. Frequency of SHANK3 variants is very low even among autism patients and nearly absent in the general population. These results have thus shed light on one synaptic pathway sensitive to gene dosage and associated to Autism Spectrum Disorders.
In a large international study with a sample of 1.168 multiplex families, another exciting discovery led to the detection of sub-microscopic chromosomal abnormalities (Autism Genome Project, 2007): Copy Number Variant analysis (CNV) highlighted the role of a gene encoding neurexin, which is a tightly linked protein to neuroligin, implicated in synapse formation for glutamate neurons. This revealed a hemizygous deletion of coding exon for neurexin gene for a pair of affected siblings. Accumulating evidence thus points out that neurexin/neuroligin/Shank3 (NLGN3/4, SHANK3, NRXN1) genes are related to autism risk, establishing a direct proof of the association of autism with synaptic abnormalities. Neurexin induces glutamate postsynaptic differentiation in contacting dendrites, while neuroligins induce presynaptic differentiation in glutamate axons. The neurexin-neuroligin link thus appears to be fundamental for glutamatergic synapse formation. Furthermore, aberrant glutamate function is often cited as a cause for autism.
By influencing the process of synapse formation for glutamate neurons, gene mutations predispose individuals to Autism Spectrum Disorders.
Autism and circadian rhythms
Another approach in research of the genetics of autism implies the melatonin pathway. Melatonin is produced in the dark by the pineal gland and is a key regulator of circadian and seasonal rhythms. A low melatonin level was reported in individuals with Autism Spectrum Disorders, but the underlying cause of this deficit was unknown. In several individuals with Autism Spectrum Disorders, deletions of the ASMT-gene were found. This gene, located on the pseudo-autosomal region 1 of the sex chromosomes, encodes the last enzyme of melatonin synthesis. Biochemical analyses performed on blood platelets and/or cultured cells revealed a highly significant decrease in AMST activity and melatonin level in individuals with Autism Spectrum Disorders (Melke et al., 2008).
Recent research indicates that a low melatonin level, caused by a primary deficit in gene activity (AMST), is a risk factor for Autism Spectrum Disorders, and highlights the crucial role of melatonin in human cognition and behaviour.
Clinical implications
These findings stress the importance of further research into genetic abnormalities in autism to obtain a better understanding of the underlying disease mechanisms. However, several questions such as correlations between genotypes and phenotypes including cognition and brain imaging studies still remain to be investigated.
Research to unravel autism requires multidisciplinary approaches involving psychiatrists, psychologists, geneticists and brain imaging specialists.
Autistic patients require a broad workout taking into account psychiatric, somatic, cognitive, social and professional issues; furthermore they should be invited to participate in various research projects, ranging from fundamental research to more applied projects on the development of new therapeutic strategies. In view of these requirements the French Ministry of Research has established in 2007 the foundation Fondation FondaMental with the aim to intensify research in this field and to offer high-functioning autistic subjects optimal treatment and care in specialized expert centers.
###
References
Jamain S, Quach H, Betancur C, et al. on behalf of the PARIS study investigators. A de novo frameshift mutation of HNL4, an X-linked neuroligin, is associated with autism. Nature Genetics 2003;34:27-29
Durand C, Betancur C, Boeckers T, et al. Mutations in the gene encoding the synaptic scaffolding protein SHANK3 are associated with autism spectrum disorders. Nature Genetics 2007;39:25-27
The Autism Genome Project. Mapping autism risk loci using genetic linkage and chromosomal rearrangement, Nature Genetics 2007;39:319-328
Melke J, Botros H-G, Chaste P, et al. Abnormal Melatonin Synthesis in Autism Spectrum Disorders. Molecular Psychiatry 2008;13:90-98
Correspondence: Professor Marion Leboyer, M.D., Ph.D. University of Paris 12, Head of Psychiatry Department, Head of Psychiatry Genetic team INSERM, Director Fondation FondaMental E-mail: marion.leboyer@inserm.fr

Allergy resource

The USDA has published an allergy resource, essentially an annotated bibliography on food allergy information. The introduction states:

This publication is a collection of resources on the topic of Food Allergies and Intolerances for consumers. Resources include books, pamphlets and audiovisuals and Web resources. Many of the pamphlets are available in single copies and some may also be purchased in bulk from the organization listed (Web addresses are provided for materials available online). The books and audiovisuals can be either borrowed from your local library or purchased from your local book store. Materials may also be available to borrow from the National Agricultural Library (NAL) collection. Lending and copy service information is provided at the end of this document. If you are not eligible for direct borrowing privileges, check with your local library on how to borrow through interlibrary loan. Materials cannot be purchased from NAL. Contact information is provided for the producing organization if you wish to purchase or order any materials on this list. This contact information can be found in section C.

The whole text in clear format is available online at http://www.nal.usda.gov/fnic/pubs/bibs/gen/allergy.pdf
There are sections for types of publication, as well as a breakdown by allergen. There is also a section on resources meant for use by children.
p.s. See section B-7 for sulfite intolerance

To Infinity and Beyond

Sachy's new pump finally arrived yesterday afternoon. Tres cute, n'est pas? Sorry, don't tell him I said that, it's very cool.

Why is this night different from all other nights?

Parents in tears is the answer.
A few weeks ago, you may remember, I mentioned that Sachy had failed his trial of oats as a food. It wasn't too spectacular a failure though, he was only sick for a few days; and we had already ordered some oat matzah to be ready if he could have it.
And so, on the first night of Passover, Sachy did go ahead and eat his oat matzah, cognizant that he might get mildly ill, but willing to trade the risk for the mitzvah and the experience. I expected him only to take a taste, and I had definitely discouraged him and made sure he knew there was no need for him to even try it, but he was undeterred and in fact determined, since he knew he wouldn't likely get sick right away. He didn't eat just a bite, though; he loved it, and ate quite a lot. The next day he ate more, also eating margarine for the first time in his life, because one of the Passover varieties of margarine contained only oils. But I've saved what brought his parents both to tears Saturday night:
Listening to our 9 year old bentch (recite the blessings of the grace after the meal) for the first time in his life, in full, out loud, joyfully.
He did feel a little off the next day, and he's only eaten a bit more matzah, but he is so happy to be able to have it, even at a price, and even if only occasionally.
It definitely made for a Passover we'll never forget.

Great Legislative News!

About 8:30 this evening [4/4/08] the Maryland General Assembly’s House of Delegates unanimously passed House Bill 578 – a bill requiring insurance companies to provide coverage for Amino Acid-Based Elemental Formulas. Once the Governor’s places his signature on the bill it will become law. I have been told the Governor may want to have a “signing ceremony” which is where the Governor officially signs the bill with invited guests present. The Governor has until Tuesday May 27^th to sign the bill. However, I do not believe he will wait that long. If there is a signing ceremony I will send around an email to the Maryland families (and those in VA/DC who are insured in MD) so that they can attend. I always add this disclaimer - In politics nothing is ever final until “its final” – but I can say with very little doubt - and barring any completely unforeseen circumstances – House Bill 578 will become law.

I believe the full text of the bill will be on the internet tomorrow [4/5/08]. Once it’s posted, to view the final language please go here: http://mlis.state.md.us/2008rs/billfile/HB0578.htm Then, scroll to the bottom of the page and click on the word “Enrolled”

Children’s Magic

Jason S Eberstein
1220 19th Street, NW
Suite 804
Washington, DC 20036

www.childrensmagic.org

APFED Appeal

Yissachar has never tasted matzah



Yissachar and other Jewish children with eosinophilic digestive diseases can't have matzah, maror, or wine at their seders. In fact, many of them cannot eat any foods ever, other than medical formulas which they drink or have pumped directly into their stomachs through a feeding tube.

“Eos” diseases don't occur exclusively in the Jewish population, but there are too many Jews suffering the diseases' pain, malnutrition, growth issues, hospitalizations, and other consequences.

This year as you prepare for your Pesach of special foods and drinks, remember Yissachar and help us research and fight eos diseases by contributing to APFED, the American Partnership for Eosinophilic Diseases.


Checks can be made out to APFED, and sent to:
APFED
c/o Elise Cohen
13402 Arctic Ave
Rockville MD 20853
For more information about eosinophilic diseases, contact Elise at elise.cohen@verizon.net or go to APFED on the web at www.apfed.org
The American Partnership for Eosinophilic Disorders (APFED) is a 501(c)3 nonprofit organization founded in December 2001 by a group of mothers of young children living with Eosinophilic Disorders. It is a patient advocacy group dedicated to improving the lives of those living with eosinophilic disorders..

The joys of insurance nonsense

Our insurance requires us to use a mail-order pharmacy for all drugs other than one-time things like antibiotics. Common sense for other uses is not allowed. We must use the mail-order pharmacy for coverage. They don't take into account that we have some unusual medical situations here which require prescriptions normally only seen in hospital settings, among other oddities.
So today we receive this large box:
It weighed 6 lbs and was sent from Las Vegas, NV.

In it was several layers of styrofoam, 4 ice packs, multiple sheets of bubble wrap:

All to mail this:

One small box of Rx Benadryl. Which doesn't require refridgeration; it's to be kept at room temperature. And it was mailed in March, not mid-summer.

But, they only charged us about $3.00. The ice packs alone are worth more than that. The shipping cost more than that.

Or, they could have let us pick it up at the local pharmacy.

Oats are on the outs

Sachy's been doing a food trial--oats. He'd been very excited, because he could have oatmeal and Honeycomb cereal as well as Mommy's really bad oat flour cookies and very yummy oat flour pancakes. The most exciting part was that we had ordered oat matzah for Passover, and he was going to have matzah for the first time in his life.

Unfortunately, today he had to come home from school with abdominal pain, diarrhea, and vomitting. Right on day 10 of the trial, exactly when he typically develops enough damage to start reacting.

So, oats are a no-go. Fortunately, he doesn't seem to be having too extreme an immune response; no 105 fever, no non-stop vomitting, and so on. However, it does seem exactly like a reaction and not a virus (especially since no one else has any sign of viral illness). I'm probably even more disappointed than he is; somehow I was starting to convince myself he was going to get through this one and get this food, and maybe be on his way to a lot of new foods.

I'm definitely motivated now to create the APFED fund-raising flyers we have been planning but not getting to. I so hate eosinophilic gastroenteritis on Sachy's behalf.

Feivel does it again. Sigh.

Just when he was going along so well, in terms of behavior.
This morning I called to Gilad when I was leaving, part of our daily ritual, so he can come give me a hug and a kiss. Mommy isn't allowed to leave without her hug and kiss from Gilad of course. For some reason this morning Feivel decided he needed to say goodbye to me too so he barrels down the stairs.
He crashed into Gilad and sent his little brother actually tumbling. I watched Gilad hit a wall, turn 180 degrees, hit his head on a middle step, turn over another 180 degrees and land at the bottom of the stairs upright (more or less).
Miraculously, Gilad was unhurt, just frightened.
I don't know what to do with Feivel. I know it was an accident. Sooner or later though one of his "accidents" is going to seriously injure someone. Gilad could have been badly hurt, even paralyzed this time. I don't know what might happen next time.
It's scary. I don't know how to stop Feivel from doing this sort of thing. He doesn't mean it. He just has no way of performing reasonable control, and he's getting big.

I can haz moonburger?

Last night, the boys were all tired and hyper and Feivel had been sick so we sent them up to their room 1/2 hour early to read in bed and settle down. It was a very windy night, thanks to an arctic front bearing down on us, so we had the usual complaints from Feivel about how scary it sounded, with the usual responses from me ("go back to bed, I can't make the wind stop").

Then there were a bunch of emergency vehicles which went by, in their usual on/off siren mode. We've explained to the boys that at night in the neighborhood the firetrucks and police try to keep their sirens off except when they're going around tight, blind curves or when they're running through intersections, but since we live between one of each of those the siren noises do sound a little odd and it's unnerving the the kids, so that upset him a little, but he settled down again.

Then at about 9 pm Feivel comes to me, all upset. "Mommy, you have to come see! There's a fire up high outside, a real fire, it's really an emergency, it's all yellow and it's on fire!" Now leaving aside the fact that their windows have opaque shades and he could only see something outside if he's out of bed pulling the shade aside to look out deliberately, I figure maybe, just maybe, he saw something real. So I follow him up. The other two boys are in their beds, quiet. I look where Feivel points out the window. There's a house with a regular light, just a steady lamplight, nothing at all like a fire even in a fireplace. He points above it. "There, Mommy, there! See, it's all yellow! A fire! What do we do?" I realize what he's pointing to. Sigh.

"Feivel. You see that almost every night. It's called the Moon. It's supposed to be there."

Bear with me--more librarian-type stuff

This is a holding-pen for a bibliography of journal articles disputing the idea that vaccination has any relationship to autism. Just move on by (unless you want the list). As of now (2/8/08) I have just copied and pasted a couple of others' lists; I haven't examined, edited, added to, or verified any of the citations, so do not give me any credit for any of this!
Thanks to Interverbal and Stavros, who have done all the work.

from Stavros:
- Peltola H & Patja A, Leinikki P, Valle M, Davidkin I and Paunio M (1998) No evidence for measles, mumps and rubella vaccine associated inflammatory bowel disease or autism in a 14 year prospective study (Research letters) Lancet 351:1327-8
- Gillberg C & Heijbel H, (1998). MMR and autism [commentary]. Autism, The International Journal of Research and Practice; 2:423-424.
- Taylor B et al (1999) Autism and measles, mumps and rubella vaccine: no epidemiological evidence for a causal association. The Lancet; 353: 2026-29.
- Kaye J et al (2001). Mumps, measles and rubella vaccine and the incidence of autism recorded by general practitioners: A time trend analysis. British Medical Journal 322 :460-3.
- Farrington P et al (2001). MMR and autism: Further evidence against a causal association Vaccine 19:3632-5 Volume 19, Issue 27, 14 June 2001, Pages 3632-3635
- Black C (2002) Relation of childhood gastrointestinal disorders to autism: nested case-control study using data from the UK General Practice Research Database. British Medical Journal 325 :419-21.
- Taylor B et al (2002) Measles, mumps and rubella vaccination and bowel problems or development regression in children with autism: population study. British Medical Journal 324 : 393-396.
- Donald A & Muthu V (2002) No evidence that MMR vaccine is associated with autism or bowel disease. Clinical Evidence, 7:331-40

from Interverbal:
1. Bertrand, J., Mars, A., Boyle, C., Bove, F., Yeargin-Allsop, M., & Decoufle, P. (2001). Prevalence of autism in a United States population: the Brick Township, New Jersey, investigation. Pediatrics, 108, 1155-161.
2. Chakrabarti, S., & Fombonne, E. (2001). Pervasive developmental disorders in preschool children. Journal of the American Medical Association, 285,3093-3099.
3. Chakrabarti, S., Fombonne, E., (2005). Pervasive developmental disorders in preschool children: confirmation of high prevalence. American Journal ofPsychiatry, 162(6), 1133-1141.
4. Fombonne, E. (2002). Prevalence of childhood disintegrative disorder (CDD). Autism 6, 2, 147-155.
5. Fombonne, E. (2003). Epidemiological surveys of autism and other pervasive developmental disorders: an update. Journal of Autism and Developmental Disorders. 33, 365-382.
6. Fombonne, E. (2001). Is there an epidemic of autism? Pediatrics.Vol 107 (2), 411-412.
7. Gernsbacher, M.A., Dawson, M, & Goldsmith, H. H. (2005).Three reasons not to believe in an autism epidemic. Current directions in psychological science, 14 (2), 55-58.
8. Gallo C, Volkmar F. Diagnosis of autism. Trends Evidence-BasedNeuropsychiatry 2003;5(1):23– 8.
9. Honda, H., Shimizu, Y., Imai, M., & Nitto, Y. (2005). Cumulative incidence of childhood autism: a total population study of better accuracy and precision. Developmental Medicine And Child Neurology. 47(1), 10-8.
10. Jick H, Beach KJ, Kaye JA. Incidence of autism over time.Epidemiology. (2006). Epidemiology, 17(1), 120-121.
11. Laidler, J. (2005). US Department of Education data on "autism" are not reliable for tracking autism prevalence. Pediatrics, 116 (1), 120-124.
12. Mandall, D. S., Novak, M. M., Zubritsky, C. D. (2005). Factors associated with age of diagnosis among children with autism spectrum disorders. Pediatrics,Vol 116 (6), 1480-6.
13. Spitzer, R., Siegal, B.(1990). The DSM-III R field trial of pervasive developmental disorders. Journal of American Academy of Child and Adolescent Psychiatry. 29, 855–862.
14. Tidmarsh, L., Volkmar, F, R. (2003)Diagnosis and epidemiology of autism spectrum disorders. Canadian Journal of Psychiatry. 48, 517-525.
15. Yeargin-Allsopp, M., Rice, C., Karapurka, T., Doernberg, N., Boyle, C., Murphy, C. (2003). Prevalence of autism in a US metropolitan area. Journal of the American Medical Association, 289, 49-89.For the MMR:
16. Fombonne E. MMR and autistic enterocolitis: a consistent epidemiological failure to find an association. Mol Psychiatry 2003;8:133–4.
17. Honda Shimizu, Y., Rutter, M. (2005). No effect of MMR withdrawal on the incidence of autism: a total population study. Journal of Child Psychology and Psychiatry, vol 46 (6), 572-579.
18. Horton, R., (2004). A statement by the editors of the Lancet. Lancet, 363, 820-1
19. Kaye, J. A., del Melero-Montes, M., & Jick, H. (2001). Mumps, measles, and rubella vaccine and the incidence of autism recorded by general practitioners: A time trend analysis. BritishMedical Journal, 322, 460–463.
20. Madsen KM, Hviid A, Vestergaard M, Schendel D, Wohlfahrt J, Thorsen P, andothers. A population-based study of measles, mumps, and rubella vaccinationand autism. New Engl J Med 2002;347:1477–82.
21. Madsen KM. Measles, mumps and rubella vaccination and autism. N Engl J Med2003;348:951–4.
22. Murch, S., Anthony, A., Casson, D., Malik, M., Berelowitz, M., Dhillon, A., Thomson, P., Valentine, A., Davies, S., & Walker-Smith, J. (2004). Retraction of interpretation, 363, 750.
23. Roberts W, Harford M. Immunization and children at risk for autism. PaediatricChild Health 2002;7:623–32.
24. Spitzer W. Measles, mumps, and rubella vaccination and autism. N Engl J Med2003;348:951–4.
25. Stoto MA, Cleary SD, Foster VB . Epidemiologic studies of MMR vaccine andautism. Washington (DC): Institute of Medicine Immunization Safety ReviewCommittee; 2001.
26. Taylor B, Miller E, Farrington CP, et al. Autism and measles, mumps, and rubella vaccine; no epidemiological evidence for a causal association. Lancet, 353, 2026-2029.For Thimerosal:
27. Andrews, N., Miller, E., Grant, A., Stowe, J., Osborne, V., Taylor, B. (2004). Thimerosal exposure in infants and developmental disorders: a retrospective cohort study in the United kingdom does not support a causal association. Pediatrics. 114(3), 584-591.
28.Meadows, M. (2004). IOM report: no link between vaccines and autism. FDA Consumer. 38(5), 38-9.2
9. Nelson K, Bauman M. Thimerosal and autism? Pediatrics 2003. 111, 674–679.
30. Parker, S, K., Schwartz, B., Todd, J., Pickering, L, K. (2004). Thimerosal-containing vaccines and autistic spectrum disorder: a critical review of published original data. Pediatrics. 114(3), 793-804.
31. Singh, V, K., Hanson, J. (2006). Assessment of metallothionein and antibodies to metallothionein in normal and autistic children having exposure to vaccine-derived thimerosal. Pediatric Allergy and Immunology. 17, 291–296.
32. Stehr-Green, P., Tull, P., Stellfeld, M., Mortenson, P., Simpson. (2003). Autism and thimerosal-containing vaccines lack of consistent evidence for an association. American Journal of Preventative Medicine. 25(2), 101-106.
33. Verstraeten T, Davis RL, DeStefano F, et al. Safety of thimerosal-containing vaccines: a two-phased study of computerized health maintenance organization databases. Pediatrics.2003; 112 :1039 –1048
34. Vertraeten, T. (2004). Thimerosal, the Centers for Disease Control and Prevention, and GlaxoSmithKline. Pediatrics. 113(2), 932.


Michael E. Pichichero, Angela Gentile, Norberto Giglio, Veronica Umido, Thomas Clarkson, Elsa Cernichiari, Grazyna Zareba, Carlos Gotelli, Mariano Gotelli, Lihan Yan and John Treanor
Mercury Levels in Newborns and Infants After Receipt of Thimerosal-Containing Vaccines
Pediatrics 2008;121;e208-e214 http://pediatrics.aappublications.org/cgi/reprint/121/2/e208.pdf

University of California - Davis - Health System (2008, February 12). Some Cases Of Autism May Be Traced To The Immune System Of Mothers During Pregnancy. ScienceDaily. Retrieved February 15, 2008, from http://www.sciencedaily.com­ /releases/2008/02/080211172535.htm

From David Gorski at Science-Based Medicine:

Schechter R and JK Grether (2008). Continuing Increases in Autism Reported to California’s Developmental Services System. Arch. Gen. Psychiatry 65: 19-24.
Shattuck P (2006). The Contribution of Diagnostic Substitution to the Growing Administrative Prevalence of Autism in US Special Education. Pediatrics 117:1028-1037.
Hviid A, M Stellfeld, J. Wohlfahrt, and M Melbye (2003). Association between thimerosal-containing vaccines and autism. JAMA 290:1763-1766.
Madsen KM, MB Lauritsen, CB Pedersen, P Thorsen, AM Plesner, PH Andersen, PB Mortensen (2003). Thimerosal and the Occurrence of Autism: Negative Ecological Evidence From Danish Population-Based Data. Pediatrics 112:604-6.
Fombonne E, R Zakarian, A Bennett, L Meng, D. McLean-Heywood (2006). Pervasive Developmental Disorders in Montreal, Quebec, Canada: Prevalence and Links With Immunizations. Pediatrics 118:e139-50.
Thompson WW, C Price, B Goodson, DK Shay, P Benson, VL Hinrichsen, E Lewis, E Eriksen, P Ray, SM Marcy, J Dunn, LA Jackson, TA Lieu, S Black, G Stewart, ES Weintraub, RL Davis, F DeStefano; Vaccine Safety Datalink Team (2007). Early Thimerosal Exposure and Neuropsychological Outcomes at 7 to 10 Years. NEJM 357:1281-1292.
Parker SK, B Schwartz, J Todd, and LKPickering (2004). Thimerosal-containing vaccines and autistic spectrum disorder: a critical review of published original data. Pediatrics 114:793-804.
Fombonne E (2008). Thimerosal disappears but autism remains. Arch. Gen. Psychiatry 65: 15-6.

CDC List of Studies (pdf), with results and findings and citations

article on recall bias specifically related to vaccines:
Murphy, D., Hotopf, M., Wessely, S. (2008). Multiple vaccinations, health, and recall bias within UK armed forces deployed to Iraq: cohort study. BMJ, 337(jun30 1), a220-a220. DOI: 10.1136/bmj.a220
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Info pages and statements:
CDC
IOM Report

AAP especially "Autism Facts for Parents" which states:

The higher number of ASD cases is NOT due to vaccines. At one time it was thought
that thimerosal, a mercury-based preservative in vaccines, could contribute to ASD.
However, studies have shown there is no link. Indeed, thimerosal was removed from
childhood vaccines by 2002, and the cases of ASD have still risen.

Knitting & crocheting for sick kids

Copied from my post on L&V:
About 8 years ago, a Jewish social services agency arranged for a monthly conference call for a group of mothers of children with life-threatening medical conditions. The calls lasted a few months, and before they ended, one mother realized how important it was to her to be able to connect to other women in similar situations. "SpecialFrumMoms" was born, an online listserv for Jewish women with special needs children.
There are now about 120 women who belong to the group, and the listserv averages 500-1000 messages a month. The mothers live around the country and around the world, and their children's situations range from mild medically to life-threatening on a daily basis. Some children have "invisible" developmental disabilities; some are noticeably or totally disabled. All are loved deeply by their mothers.
Many of the children are hospitalized regularly, whether for treatments, emergencies, disease flares, surgeries or almost anything else. Group member Robin Meltzer has decided to begin crocheting and knitting afghans for the children to receive when they are hospitalized or suffer other major medical setbacks or situations. She is looking for donations of blanket squares if anyone is up to crocheting or knitting to help her. She asks specifically:
Rectangle size should be 5"x7". It will take 49 rectangles to make a 36" x 50" afghan (35" x 49" with an addded inch for joining and border). After the 5"x7" is all done, go once around in single crochet. Please weave in your ends. If the person is a knitter only and does not know how to crochet, the knitter should include some extra yarn so I can border the rectangles. I strongly, strongly suggest that participants measure and cut out a 5"x7" rectangle out of cereal box cardboard so they can determine their gauge and make sure that the rectangle will fit it well with the others. Crocheted rectangles can be single, double or treble crochet, or a fairly dense pattern like shell stitch or basketweave. Knit rectangles can be garter, knit stitch or a non-stretchy pattern stitch (a.k.a. no rib stitches). Think durability. Also, everyone should be using a 4-ply, worsted weight, machine washable and dryable acrylic yarn. Please do not use a wool or wool blend -- too many kids are allergic.
Donations can be sent to Robin Meltzer, 11529 Lovejoy St, Silver Spring MD 20902, USA.
Thank you. I've waited til this point to mention that I'm the mother who created the listserv in the first place. Believe me that anyone who helps Robin help the children I've come to know and love will have a very special place in my heart.

To feed or not to feed

I've been talking to the doctors about trying Sachy on Vital Jr formula as a trial....and I keep thinking maybe we should just let him try a whole bunch of new foods. I just don't know. He's had good scopes for years now and no reactions for at least a year or two. I don't want to hold him back from eating for no reason; maybe his gut could tolerate a lot more now than a few years ago.

OTOH, I don't want to make him sick. I really especially don't want to hold out the hope to him that he would be able to eat a lot of things and then disappoint him and make him come back to formula only. Right now he's so accepting of it, I wouldn't want to mess that up.

The doctors' opinion seems to be, "Do whatever seems right. We don't know what to do."

I hate having to be the grown-up. Someone else make some decisions for a while.

musings as a snm

Life as a special needs mommy. Let's face it, I'm one needy mommy. This weekend reminded me again though just how much our family's life isn't like most. Feivel had the time of his life because they let him lead some singing, and it was just huge for him...but it just made the point again of how much he would love to be able to go to Camp Simcha, or anywhere special. He loves the care and attention and positive response. He gets so much negative.

Sachy meanwhile kept forgetting his formula everywhere he went, and of course it just made that much more of an impression that he could never go to a regular sleep-away camp just because of the logistics of his care and his feeding needs.

Finally, when I checked in with the friends who had Tirtze over the weekend, they complimented her greatly on how far she's come and how well she's doing. It was very sweet and I really appreciate it; but some little part of me wishes my kids could just have a sleep-over without it being a big deal. I'm sure her hosts were a little apprehensive about having her in the first place, in a way they wouldn't be for most other kids, and then relieved that everything went okay....why can't she just be a guest like every other girl?

Oh well. Sometimes I just get a little too focused on it I guess.