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.

Susceptibility Gene for Asthma Identified

photo from Georgetown University Medical Center website

NEJM link here. That's the very technical article, though. Here is a more public-friendly explanation from Modern Medicine:

Serum levels of YKL-40 correlate with asthma status
Apr 9, 2008
WEDNESDAY, April 9 (HealthDay News) -- Researchers have identified a gene conferring susceptibility to asthma in populations of European descent, according to research published online April 9 in the New England Journal of Medicine.
Carole Ober, Ph.D., of the University of Chicago, and colleagues performed a genome-wide association study to identify genes affecting serum levels of the chitinase-like protein, YKL-40, in 753 Hutterites, a founder population of European descent. The researchers then investigated the association of an implicated single-nucleotide polymorphism (SNP) with asthma in the Hutterites, in two unrelated case-control populations of European descent and in a birth-cohort of children of European descent at high-risk for asthma.
A promoter SNP upstream from the gene encoding YKL-40, the chitinase 3-like 1 (CHI3L1) gene, was associated with serum YKL-40 levels, asthma, bronchial hyperresponsiveness and pulmonary function measures in the Hutterite population. In addition, this SNP predicted the presence of asthma in the two case-control populations and serum YKL-40 levels in the birth cohort.
These findings suggest that "CHI3L1 is a susceptibility gene for asthma, bronchial hyperresponsiveness and reduced lung function, and elevated YKL-40 levels are a biomarker for asthma and decline in lung function," the authors conclude.
Two study authors disclosed receiving consulting fees and grant support from pharmaceutical companies, including MedImmune, a company investigating YKL-40 as a potential therapeutic target in asthma. One co-author is an inventor for a chitinase assay licensed to MedImmune.
AbstractFull TextEditorial

I'm particularly interested in what this could mean for other eosinophil-involved diseases, of course. Further updates, as always, as events warrant.

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..

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.

AllergyMoms 101 non-edible treats

(photo is Sachy at his last birthday party with yet another cake he helped bake and decorate--but couldn't eat; this post needless to say is dedicated to him)

AllergyMoms has a wonderful list of 101 non-food treats to give children as opposed to sweets or food prizes and treats. Especially perfect this time of year as we're all celebrating one thing after another and are tempted to do it with sweets which one child might not be able to have. Unfortunately a few things are food related (marshmallow shooters--what were they thinking?) but for the most part it's great.

A few more words on the news bit

From what I just wrote in answer to someone's post on L&V:
Yeah, believe me--no child is drinking EleCare or Neocate because he wants to. The stuff tastes terrible. In fact it tastes so bad that many patients who need to switch to the formula in adolescence or adulthood REQUEST a feeding tube because they can't make themselves drink enough of it (a lot of the kids who are diagnosed in infancy already have a gtube because they don't drink enough to survive without pump feedings). And we're not talking about a supplement, or a choice here; due to this disease this is all our kids can have.
They actually chose a really good sample family for news coverage--parents working as a nurse and police officer, who do have insurance but the insurance won't cover the formula. This is the typical face of the families with this problem--we work, we don't qualify for WIC (which would only cover the formula until the child is 3 even if we did qualify), we don't qualify for any of the state insurance programs for the UNinsured or low-income families, in many states we don't qualify for medicaide waivers (we don't here in MD because they've created a catch 22: you can't qualify if your child doesn't require 24-hour a day nursing to not require living in a hospital setting, but since no one automatically qualifies for the waiver, parents have to train themselves to provide their children's care without nursing, thus the only way to get on the waiver is to either have your child institutionalized for care or to already have some insurance-covered home nursing that you're in danger of losing).

The news coverage

Being pushy, I did manage to quickly make up a bunch of flyers and pass them around at the kids' school yesterday about the ABC coverage. The story was actually pretty decent, though it didn't go far enough about the differences between a child spending a life depending on this formula versus a baby who tolerates Alimentum or the like better than regular milk/soy formula; there's a big difference between a family having to spend $150/month for 6 months and having to spend $1500+/month every month of every year of someone's life. They didn't make it quite clear that our children's lives depend on this formula.

And the ironic thing was showing Dr. Furuta, who's always been a proponent of steroids over formula diet, with a gtube/formula patient, advocating for formula coverage. If Glenn Furuta is saying we need formula access, WE NEED FORMULA ACCESS!

But all in all I was happy there were no glaring mistakes and positive somewhat complete coverage of the situation.

ABC Coverage tonight of formula issue

http://abcnews.go.com/Health/story?id=4111934&page=1

At 6:30 tonight (EST), ABC news is to cover the case of a family with two children with EE and no formula coverage. Please let everyone know that this is not isolated--it is a very common problem, even among the supposedly insured.

I don't hold out hope that the news story will be any good, but any publicity for the formula coverage issue is an important step.

eosinophil stamp?

We're figuring out our new handmade stamp image for the family letterboxing and I came across this...

So what do you think...is a smily eosinophil us?

I have to try to find one of Marc Rothenberg's smily-face-cool-sunglass-wearing eosinophil images; I think I have one in some old conference papers.