Monday, April 21, 2014

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?

Sunday, April 20, 2014

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.

Saturday, April 19, 2014

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!!

Wednesday, April 16, 2014

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.

Wednesday, April 9, 2014

TIP - Medical Alert Bracelet

LB's metabolic physicians have recommended that he wear a medic alert bracelet nearly since his diagnosis (at 3 days old when a car seat sticker is about as good as you can do in the medic alert department), but we honestly had trouble finding something that was appropriate for a little kid for a very long time.  Always wanting to be prepared for a situation where others need to be aware of LB's medical condition and when we may not be able to speak on his behalf, we kept looking and ended up settling on something that I have used for a long time as a marathon runner and triathlete (don't be too impressed, I haven't done much training in ages, but it was a fun hobby pre-kids)  -- Road ID!  Although they are made primarily for athletes, the selection and sizing has been great for our purposes, too.

There are a couple options that work well for little kids and there are a lot of options for older kids and adults:

Option 1 - A Shoe ID - you just Velcro it onto their shoe and you don't have to worry about it irritating their wrist or being much of a distraction to them.  Hopefully they manage to keep their shoes on, but not a bad option for a toddler all things considered.

Option 2 - A Wrist ID Slim - it's made out of silicone and resembles the bracelets that a lot of people wear for fun, but it is available in sizes as small as 5" to fit the wrist of a toddler.

The laser-engraved tags can be modular with different items and larger sizes of bracelets as your child grows.  You can also order just the tag and not the whole bracelet/shoe clip/etc. for times when your emergency contact information might need to be tweaked, but the bracelet/shoe clip/etc. is still in fine shape.  I actually still have my original shoe ID Velcro bit even though I have ordered at least 3 new tags as I've moved from place to place.

The metabolic clinic suggested that the bracelet read - "Metabolic Disorder, MCADD, Needs Glucose, Metabolic Dr. On-Call ###-###-####" and we got the color red to make sure it was very visible.

The best news of all?  They are having a HUGE SALE THIS WEEK!  If you're wanting to check this important item off your to-do list, there's no time like today!

Saturday, April 5, 2014

Happy Birthday LB!

Guess who turned two??
LB did!! (see how excited he is for birthday cake?)
And here he is digging into his presents.  He got a great set of tools, some new books, a ball and mitt and bongo drums!

Over the weekend, we had his friends over to celebrate with us.  We had a wild idea for a digging in the dirt party and we waited until the last minute to send out the invitations because we weren't sure the weather would cooperate.
Lo and behold, we had a beautiful day for an outdoor party, so the construction site was erected!  Some cones, a big tarp and five bags of topsoil (that we were going to need to add to our garden anyway this season) later, we had a party!

The cupcakes were chocolate/chocolate and topped with crushed Oreos to look like dirt and all the kids were issued a cupcake and a construction hat before getting turned loose in the dirt pile.

They dug and played with gusto.

And I'm happy to report that there wasn't any dirt throwing or dirt eating to speak of.

And most of the dirt stayed on the tarp, too.

He got some fun presents from his friends - a Star Wars t-shirt, lots of cool bubble wands, a set of golf clubs, some books and a John Deere Tractor.

After a couple hours, kids started to head home by way of the wash station...

...and our boys spent the rest of the evening playing in the dirt and helping us put away the party stuff (LB spent a lot of time climbing on the coolers).

What a great way to celebrate a great two-year-old!  Happy Birthday LB - we had a great year!!!

Thursday, April 3, 2014

Newborn Screening Saves Lives Act - UPDATE!!

This afternoon, the House Energy & Commerce committee passed H.R. 1281, the Newborn Screening Saves Lives Reauthorization Act of 2014.  It has strong bi-partisan support and is now one step closer to being signed into law!  Next steps are a vote by the full House of Representative and a vote by the full Senate before it ends up on the President's desk for signature. 

Read more details about the bill in the Milwaukee Journal Sentinel.

And kudos to APHL, the March of Dimes and the Milwaukee Journal Sentinel, among countless others who have been advocating tirelessly to reauthorize the Newborn Screening Saves Lives Act.  The work you are doing will help newborn screening continue to save lives.  THANK YOU!