Vaccination and Institutional Trust

Vaccination and Institutional Trust

I remember when vaccination wasn’t controversial. It feels like a long time ago. It’s unlikely things will change any time soon because people are no longer placing high levels of trust in institutions. There is a substantial amount of evidence people serving in the highest levels of government, both at the White House and Congress, aren’t being truthful. Even when they are, it’s difficult to take what they say at face value. It used to be that when someone took political office they set up a blind trust or sold anything that might be perceived as influencing their decision making. That’s no longer the case in every situation.

I say that to say this, I understand why it’s difficult to trust hospitals. Physicians of all kinds, especially Pediatricians, seem to follow the recommendations of large organizations. It’s difficult to trust these large health care organizations when we see scandals like the Epipen pricing scandal where the Mylan CEO who is accused of gouging is U.S. Senator Joe Manchin’s (D-W.V.) daughter. Fortunately, the scientific evidence to support vaccinations has been around a lot longer than recent history. When vaccinations were developed and these programs were first implemented, the institutions doing the research were worthy of our faith and trust.

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Rough Patch, Part Four

Rough Patch, Part Four

Start here to read from the beginning.

We settled in to KKI but the vomiting didn’t stop. Our son stopped being able to keep anything down at all, even water. The nurses were insistent that he was keeping some down, but they weren’t with him all day. I was adamant they needed to do something but wasn’t sure what exactly that something would be. After the weekend the senior doctor returned and checked on us early in her rounds. She told us he looked OK but she was going to draw labs just in case. Once she received the results that would inform whatever our next steps would be. I settled down with my son for a nap and did my best to keep him comfortable while they worked out a plan.

Within an hour a skittish looking nurse came and woke me up. When I say skittish, her face was completely calm. Her eyes looked terrified. She told me we were being transported. “OK… can I take care of this when my son wakes up?”
“No,” she said. “They’ll be here any minute.”
“Oh… OK,” and I started packing things as quickly as I could. The nurse reassured me that they’d figure something out as far as the items we had to leave behind. I barely got everything shoved into a bag before our son was being woken and loaded up onto the stretcher for transport. Apparently his labs had shown a significant amount of dehydration, even though he didn’t appear dehydrated when examined.

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Rough Patch, Part Three

Rough Patch, Part Three

If you haven’t read the rest of the story yet, start here.

We loaded our son into the car and left for the hospital. It was dark and rain was pouring down throughout the drive to the emergency department. Check-in went quickly. Our son was exhausted and still showing signs of difficulty breathing so it didn’t take very long to be seen. A chest x-ray was ordered immediately and we were settled in to wait for the results. No one seemed particularly concerned so we did our best to relax and wait. We expected to be given antibiotics and sent home.

The nurse came into our room and asked in an unusually timid manner if our son had been seen at one of the other hospitals downtown. We explained a consult we had at one point with an interventional cardiologist, but that we only went once and that doctor recommended against running any tests. I mentioned to her off-hand that we had also done several second opinions at Hopkins. “Why do you ask?” was the next obvious question. Micro expressions danced across her face, all showing signs of discomfort, and she pointedly avoided eye contact. We were to be transferred and they were deciding where. The doctor would be in shortly to answer any other questions. With that she ducked out, having not made any additional eye contact.

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Rough Patch, Part Two

Rough Patch, Part Two

If you didn’t catch the first part, read it first.

We were waiting for many months for a call from Kennedy Krieger’s Outpatient Feeding Program. It’s not something I had mentioned previously; I wasn’t sure how helpful it would be. When the call finally came we were so excited. There was, however, a massive “but.” Our son had begun struggling with a new medical issue, ITP (Idiopathic Thrombocytic Purpora), and we weren’t sure how well he would do in the outpatient program given the need for weekly blood draws and hematologist visits. After speaking with the program’s nurse we concluded that, while difficult, managing his care on an outpatient basis was possible. If we were already actively in the outpatient program and he needed to be transitioned to inpatient they would do their best to have us transitioned to inpatient as quickly as possible.

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Hitting a Rough Patch

Hitting a Rough Patch

I was keeping up with everything. The laundry was washed, blog posts were getting written, and the house was clean. Looking at my blog, you might think I vanished into thin air. Those who followed me regularly were left scratching their heads, “what happened in June 2017?” I never forgot about the blog, or all of my readers. In fact, I missed you dearly. It’s time to share what brought me to a place I couldn’t post for a year.

Our son was doing well. All of his medical appointments were three to six month follow ups and keeping up with the house just wasn’t a challenge any longer. We found a daycare about ten minutes away willing to take a child with a feeding tube for four hours three times a week. They reassured us they were comfortable running his tube feeds, they had done it before for other children, and that they were able to give him the attention he needed. We had a plan and it was as solid as such a plan could be. With that, I took a part time job close to home. The arrangement was I would be in the office while my son was in daycare and work from home for the rest. I couldn’t have asked for a more flexible work arrangement.

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Deadline Changes for the Affordable Care Act

Deadline Changes for the Affordable Care Act

If you’re considering signing up for the Affordable Care Act (ACA) this year there are some important policy changes that have not been widely announced. The changes with the highest impact on the average family are unexpected deadline changes. Open enrollment for 2018 begins on Nov 1, 2017, and ends Dec 15, 2017. This only leaves a window of a month and a half to sign up for ACA coverage.

Tips to get started with obtaining coverage are available through Healthcare.gov. In previous years a public campaign has been launched through many avenues providing information to people who need it most. Do not expect the same outreach this year. The responsibility of knowing the deadlines and getting your application done in the brief window of time provided will be entirely your responsibility. More policy changes which make it difficult to sign up for the ACA may surface as the sign-up period comes closer thanks to the current administration’s dislike for the law.

Please, if you know someone who needs to sign up this year make sure they know about the deadline change. Outreach this year will be minimal compared to the information that’s been provided in previous years. The shorter deadline and lack of information provided will have a very real negative impact on the ability of people who desperately need coverage to sign up.

ObamaCare vs. Affordable Care Act

ObamaCare vs. Affordable Care Act

There has been a lot of discussion in the news lately about repealing and replacing Obamacare. The Affordable Care Act has also come up a lot in those discussions. Unfortunately, it’s not always clear during the discussions that these are the exact same law. It’s important to raise awareness of this issue, especially among people who don’t frequently follow politics or news “inside the beltway.” The main reason is the Affordable Care Act, hereafter referred to as ACA, is known for a lot of things people like while “Obamacare” tends to be associated with all the things people don’t.

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PTSD Symptoms and Support Organizations

After airing my podcast reading of a previous post about PTSD I was asked to gather and provide more information about PTSD symptoms and support organizations. I’ve thought long and hard about how best to cover this information. After all, people who are suffering from PTSD need professional help. Self-diagnosis isn’t reliable and it’s difficult to comprehensively describe any medical issue, much less a mental health issue, on a website with such a broad international audience. The approach I’ve decided upon is to aggregate the information as concisely as possible. I strongly advise anyone who believes they might have PTSD to seek the assistance of a therapist who has experience treating someone with PTSD.

If you are in need of immediate assistance call 911 or go to an emergency room. This post is for informational purposes only and is not a substitute for medical care.

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H.R. 1270 – Restoring Access to Medication and Improving Health Savings Act of 2016

H.R. 1270 – Restoring Access to Medication and Improving Health Savings Act of 2016

This law is a new one working through Congress, and a lot of people haven’t heard about it yet. I want to bring it to your attention because it could save our family – and possibly yours too – a lot of money. The law proposes to modify the existing healthcare law, the Affordable Care Act, to allow the use of Health Savings Account (HSA) and Flexible Spending Account (FSA) funds for over the counter medications without a prescription.

How the Process Works Now

You can pay for over the counter medications with HSA and FSA funds now – but only if you have your doctor write you a prescription. To pay for your allergy medicine or headache medicine you need to go to the doctor every time you need more and have them write down on a prescription pad the medication is necessary. Then, you go to the pharmacy and have them “fill” the over the counter medication just like they would fill prescription medications.

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Noonan’s Syndrome and Heart Problems

Noonan’s Syndrome and Heart Problems

Sometimes children with Noonan’s Syndrome are born with heart problems or develop them early in life. Because of this and other unrelated concerns, we’ve monitored our son’s heart since before he was born. This past week I was thankful we did. It’s not otherwise apparent that one of his ventricles is growing at an unhealthy rate. We’re expecting a call from a surgeon any day now to place a catheter up through his leg to measure the pressures inside of his heart.

I’m told this sounds significantly scarier than it is. My husband knows at least one person who’s undergone this procedure multiple times. That’s not overly comforting when your two-year-old is the one going in. I’m terrified honestly. We’ve recently discovered he has Von Hildebrandt’s Type 1. If they need access to his vein, that’s clearly going to involve some bleeding. The medicine challenge they performed a few months ago didn’t last as long as it should have. While they’re not ruling it out – they want to try again after he turns three – that does mean he’ll need two different drugs to help him clot after the procedure is over.

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