Colorado Vaccination Legislation

Colorado House Bill 1288 was signed into law this week.  This is the update from Children's Hospital Colorado on the legislation:

Under Colorado law today, all children enrolled in licensed child care and schools (public and private) must be immunized against a series of vaccine-preventable diseases like measles and pertussis. Parents can elect to exempt their children from these requirements for medical, religious, or personal belief reasons. This bill requires schools and child care centers to disclose their immunization and exemption rates, and also directs the Public Health Department to create an online, evidence-based education module about the benefits and risks of vaccines.
 

Why it’s good for kids: Requiring schools to disclose their immunization and exemption rates will arm parents with good information about choosing the right child care center or school for their child, which is especially important for medically fragile kids who are at higher risk for vaccine preventable diseases.

Why it still needs more work: Currently, a one-time parent signature is the only requirement to elect a personal belief exemption. This bill initially included a provision that would have required parents electing a personal belief exemption to either get a medical provider’s signature or complete an online education module addressing the risks and benefits of vaccines. This requirement would help spread knowledge in our communities and ensure our children don’t get sick from preventable diseases. The hospital and a strong coalition of advocates will continue to work with parents, health experts, educators, and lawmakers to improve Colorado’s vaccine requirements. This is important policy at any time, but it is especially vital now, as Colorado is in the midst of a serious outbreak of pertussis (whooping cough).

I'm excited that by the time the law goes into effect, I will be able to know the vaccination rates of the preschool that LB will attend, but I'm with Children's Hospital on wishing the law went just a little further in requiring parents to have a documented conversation with a medical provider or view scientific information about vaccinations before putting their child (and those that come into contact with their child) at risk of vaccine preventable illness.  Maybe next year?

Editing Our Genes?

A study published in Nature Biotechnology and also described in this article from The Independent, seems very exciting for genetic disorders!

Scientists used a genome-editing technology called Clustered Regularly Interspaced Short Palindromic Repeats (CRISPR) to cure adult laboratory mice of an inherited liver disease called type 1 tyrosinemia.  This condition can be found in both animals and humans (it affects about 1 in 100,000 people and is part of newborn screening panels in some states) and is related to liver metabolism.  Affected individuals are unable to break down the amino acid tyrosine and require a special diet and medication to prevent liver, kidney and brain damage.

The CRISPR technique enables researchers to snip out a mutated piece of DNA and replace it with the correct sequence.  In this instance, the researchers were able to correct a single “letter” of the genetic alphabet which had been mutated in the gene involved in liver metabolism.  They altered the genetic make-up of about a third of the liver cells in the mice through a high pressure intravenous injection and the researchers effectively cured the mice.

The fact that this technique can be used successfully in an adult animal could lead to the ability to use the technique in humans (probably after lots of ethics committees and institutional research boards weigh in on it and, of course, oodles of clinical trials are performed).  It might be a long wait, but it sure is exciting to think about how a future gene therapy might fix the genetic defect in people with MCADD that prevents them from making the enzyme that allows them to break down medium chain fats.

Science is amazing!

Dietary Fats Explained!

While skimming through my alumni e-newsletter this weekend, I happened upon an interesting article about dietary fats.  While the main point of the article was to inform generally healthy people about the role of fats in their diet and which fats are healthy, there were some interesting facts in the article that helped me understand my son's MCADD a little bit more.

Some things that I learned:

First, I learned that fats have 4 main roles in our bodies...

1. Energy source and reserve–Fat provides 80-90 percent of the energy requirement at rest. One gram of pure lipid contains about 9 calories of energy, more than twice the energy available from carbohydrate or protein.
2. Protection of vital organs– The body’s internal fat (about 4 percent of the total) protects against trauma to vital organs like the heart, liver, kidneys, spleen, brain, and spinal cord.
3. Thermal insulation–Fat keeps us warm!
4. Vitamin carrier and hunger suppressor–Approximately 20g of daily dietary fat provides a sufficient source and transport medium for the four fat-soluble vitamins: A, D, E, and K. Severely reducing lipid intake depresses the body’s level of these vitamins and may lead to a deficiency.

Although we aren't on a low-fat diet, #4 on the list makes me wonder whether MCADD kids on the low-fat diet may have vitamin deficiencies as a result of not having enough fat to transport vitamins and fully reap their benefits?

Second, I learned that fatty acids have a chain length categorized as short to very long.  This becomes important since the different chain lengths undergo different metabolic fates.  Short-chain and medium-chain fatty acids are quickly available for use as energy. Long-chain fatty acids, in contrast, undergo more complex processes and are deposited as fat in the liver and other body fat cells. Thus, the short- and medium-chain fatty acids often are considered “good” fats since they are easily metabolized and don’t necessarily contribute to fatty livers.

The four different types of fatty acids include: 

1. Short-chain fatty acids = <6 carbons. These are typically found in butter and some tropical fats.
2. Medium-chain fatty acids = 6-12 carbons.  You’ll find these in coconut oil, palm kernel oil, and breast milk.
3. Long-chain fatty acids = 13-21 carbons. These are found in animal, fish, cocoa, seeds, nuts, and vegetable oils. (Chain lengths of 16-18 carbons are most common)
4. Very-long-chain fatty acids = >22 carbons. Examples include omega-3 and omega-6 fatty acids found in fatty fish (omega-3) and some processed vegetable oils

This explains the common information in the MCADD community about avoiding coconut oil and avocado, the only food regularly mentioned to be high in medium chain fats.

Anyway, if you're interested in a deeper dive into fats, I'd encourage you to read the article and, of course, GO BLUE!

To Immunize or Not to Immunize - Part 3

When I talk to people who choose not to vaccinate, one of the things they often cite as a reason for their decision is that they don't want to risk their child having an adverse reaction to the vaccination.  The CDC has one more infographic that puts the risk of vaccine reactioin.  Did you know that your child is far more likely to be struck by lightning, be a member of the U.S. Olympic team or get elected to Congress than have a vaccine reaction?

To Immunize or Not to Immunize - Part 2

As I mentioned yesterday, our entire family gets regular immunizations.  I should also mention that, without us even asking, our extended families and our child care provider have also been receiving annual flu shots and other vaccine boosters before they come into contact with our children.  Everyone knows what illness can lead to for LB and the stress that a hospitalization can place on our family.  We sincerely appreciate their decision to protect our family by immunizing themselves.  This is the concept of "herd immunity" -- protecting the weakest members of a community by immunizing those with whom they come into contact.  It is how vaccination works!  

This graphic from the Centers for Disease Control helps put into perspective the risks of NOT vaccinating your child.  Not only could your child get sick, they could also put those around them at risk.  Those around them could possibly include children or adults who cannot be immunized for authentic, medical reasons and who rely on herd immunity to keep them safe.

While all families will choose what is best for them, I urge parents to 1) consult trusted, peer-reviewed resources about vaccinations and 2) talk to your pediatrician about vaccinations before making a decision.

To Immunize or Not to Immunize - Part 1

Immunizations have been a hot topic in Colorado lately due to pending state legislation (Colorado House Bill 1288) that would tighten the rules for how parents exercise the "personal belief" exemption from immunizing their children. 

When it comes to vaccinations, our family is all in.  We fully immunized our oldest son according to the standard schedule from the American Academy of Pediatrics and he has never had so much as a fever from a vaccine.  He has also been a really healthy kid, in general and does not have MCADD.  We felt that immunizations for our MCADD kid were even more important and he has also been fully immunized according to schedule.  Since entering our parenting years, my husband and I have been regular recipients of annual flu shots and also have gone in for the whooping cough booster shots (tdap).


I was curious whether there was any specific guidance on immunizations for children with fatty acid oxidation disorders and was pleased to find a study in the Journal Pediatrics from 2006.  The basic outcome of the study for MCADD patients was that "because patients with these disorders can become extremely ill with infections in general, but particularly with those that are associated with nausea and vomiting, it is obvious that these children should not be permitted to confront wild-type infections.  Immunizations are an essential part of the health care maintenance of this patient population."

In addition, the study asserted that "contraindications against immunizations were not found in the available infectious disease and metabolic disease databases for inborn errors of metabolism. However, there are some inborn errors with associated impaired immune functions or tendency for rapid decompensation that may require caution and close follow-up after administration of immunizations. The purpose of these follow-up evaluations is to not only monitor for metabolic decompensation but also assess for suboptimal immune responses to the vaccinations that could potentially leave these patients susceptible to major vaccine-preventable diseases."  In other words, definitely immunize, but always observe your child closely after immunizations.

Although there definitely needs to be more research to ensure that our kids are actually getting appropriate immunity from vaccinations, I take comfort in the meantime knowing that my kiddo has some degree of immunity from a vaccine.  That comfort definitely outweighs the unknown of what he might encounter from the actual virus he could contract without that immunity. I know when a vaccine is administered and what side effects to watch for.  We carefully monitor him after immunizations to make sure that he is eating and drinking well and that his system isn't stressed by fever or illness, so it is definitely a far more controlled situation than him catching a random infectious disease, which I think we can all agree that we dread!!

Privacy Versus Poster Child

From the very beginning of our MCADD journey and my subsequent quest to increase awareness of newborn screening and metabolic conditions through this blog and elsewhere, I've been very careful to keep our son's name private.  He didn't ask for this and he's too young to tell us that he wants to be an advocate for it.  For all we know, he might want to live his life with a metabolic condition quietly and out of the spotlight, so who am I to make him a poster child without his permission.

A recent blog post from a fellow Consumer Task Force on Newborn Screening Mom renewed my commitment to privacy for our son.  Amanda's son is older than our LB and her experience gives me a preview of what young adulthood may be like for our son if every detail of his medical odyssey is chronicled for everyone in his school or soccer team or scout troop to Google.  Like Amanda, I hope to continue to share relevant general information about MCADD on this site, but my son will remain out of the spotlight until such time as he can make that choice on his own.

I encourage you to read Amanda's incredible post about her poster child growing up.  She is a beautiful person who is deeply thoughtful and generous, not to mention an incredible writer.