Before I Had My Son, I Wish I Had Known…

The biggest surprise for me after having my son was how much control other people wanted over decisions involving him. This came up quickly as he struggled with gaining enough weight from the day he came home from the hospital. Family members wanted to attend doctor’s appointments. Everyone seemed to have an opinion on how we could fix the problem. Some of them were insistent we created the problem ourselves by not following their “expert” advice. None of this was true of course. He was eventually diagnosed with Noonan’s Syndrome which is known to cause all sorts of growth difficulties and not just poor weight gain.

Looking back, if I had known going into it others would be so pushy and insistent to the point of blaming I would have more resistant about having outside involvement in our son’s health concerns. Though, I’m not sure that would have even helped long-term. After all, they probably would’ve tried to exert their influence in other ways if they hadn’t been using all of their energy they way they did. I recommend first-time parents set boundaries early and often. It’s your child. Don’t let anyone else tell you how to raise them.

What do you wish someone had told you before you began having children?


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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Finding Resources

Having a child with medical or other special needs can be overwhelming and expensive. Not knowing where to find resources is a common reason children and parents don’t get the support they require. I wish I could transfer everything I’ve learned over the past few years to you. My book is a great resource, but even it doesn’t cover everything exhaustively. Trying to address every challenge all in one place would have made it so vast and unwieldy it would’ve been unreadable.

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I’m Still Here

I apologize profusely for the silence. It’s not like me, and I’m disappointed in myself for letting it occur. I became overwhelmed approximately the end of November, and I’m only now getting my feet back under me. Again, I’m sorry.

A lot of things have happened in a month. I’ll stick to the highlights and keep this brief. Our son is beginning to do what most people would consider eating. He’s getting more confidence every day in his ability to keep food in his mouth and swallow it safely. A lot of us take it for granted – it’s never been a given for him.

We thought we would need to go in for a heart catheterization. The interventional cardiologist recommended against it because of the risk due to his bleeding concerns, and he wasn’t certain he would find any more relevant data than we already have. There is something concerning going on with our son’s heart, enlargement of one of the chambers, and there’s no apparent cause. So far he shows no visible signs of heart difficulty.

I haven’t forgotten you, and I hope to begin writing on a weekly basis again soon. Thanks for staying with me.

Podcast – PTSD in Special Needs Parents


Available for subscription on iTunes.

Available in written format on our website.

Podcast – Introduction


Available for subscription on iTunes.

Available for download on Gumroad as an MP3.

Munchausen Syndrome by Proxy

Munchausen Syndrome by Proxy

There is a lot of misunderstanding out there about Munchausen Syndrome by Proxy (MSbP) including what it is and what it’s not. It’s a tough topic and an important one to understand with the government being more involved in our lives and parenting decisions than ever before. Accusations – true or false – have the capacity to break up families and destroy relationships.

MSbP is a condition where a caregiver makes their charge sick to gain some reward. The reward may be attention, sympathy, validation, or anything else the caregiver receives in return for their patient being ill. Typically, the relationship involved is that between a parent and child. MSbP is considered to be abuse. Harm undeniably comes to the recipient of the abuse and cases of death have been reported.

This syndrome is not poor parenting. Disagreeing with medical professionals or getting a second opinion does not indicate MSbP. Those things can undeniably place a child at risk when taken to the extreme, but a label of Munchausen Syndrome by Proxy is inappropriate. The words we use matter.

If it’s abuse or neglect, why does it matter what particular label we use? When you report someone to a medical professional or Child Protective Services, how you document the problem in the report will decide the initial direction of the investigation. If the parent you’re reporting isn’t following the doctor’s orders because they disagree but you state it as MSbP, the investigation will center on whether or not the parent is making the child sick and providing proof to that effect. It draws attention and energy from what that child needs, which is mandated adherence to the doctor’s orders.

Muddying the definition and misidentifying the syndrome also hurts efforts to increase awareness and identify real cases of MSbP. MSbP is hard to catch at times depending upon the experience of the medical professionals involved. The ones who have seen it in action know how to tell. Not all have seen it – its occurrence is rare. When the doctors aren’t knowledgeable on the topic friends and family can be a critical step in getting the underlying cause of the child’s medical difficulty identified.

There are a few concepts that will shed some light on the difference between poor choice and MSbP:

  • Second Opinion vs. Doctor Shopping – Second opinions are common place and critical to making the correct decision when the path forward is unclear, or the stakes are high. Once you have seen three or more doctors you’re meandering into the range of what’s called “doctor shopping.”
    It’s suspicious because it gives the appearance that instead of taking a qualified expert’s opinion you’re looking for a specific answer instead. This path is an approach MSbP sufferers use to find an unsuspecting doctor who will play into what they want to occur whether it be a minor medical intervention like a medication or a major one such as surgery.
  • Disobeying the Doctor vs. Intentionally Making Your Child Ill – Doing either one of these is horrible. They’re also very different. Sometimes parents make bad decisions on behalf of their children. Instead of getting a second opinion they might just tell themselves the doctor is wrong and ignore their instructions, never following up. That’s OK if you’re managing your medical care but if you have a dependent and the doctor says care is needed – you don’t necessarily have a choice. That is, however, very different from intentionally making your child sick.
    The former is bad; the latter can’t be anything else but medical abuse. When you make an accusation of MSbP you’re telling the person you report to that the caregiver is mentally ill and that the person receiving care is being harmed. I will not list methods here in detail for fear someone mentally ill might stumble across this article and use them. I will say poisoning is extremely common and you’re unlikely to catch the perpetrator in action. If you suspect you know what the caregiver is using, contact the child’s medical professional and they will find a way to provide evidence.
  • Advocating for Care vs. Pushing Medical Intervention – Children with disabilities and children who are medically complex need an advocate desperately. Medical professionals are simply too busy to give the kind of attention to every detail needed to coordinate a child’s care between multiple specialists and across various hospitals. It’s unusual for a parent to pick a medical intervention, especially an invasive surgery, and insist it is performed without it being recommended to them prior.
    They sound similar, but they’re very different in the core motivation. One way to differentiate, MSbP sufferers will tend toward extreme resolutions and unnecessary and dangerous procedures that may be extremely invasive. Advocates tend more toward questioning and might get a second opinion about a procedure if it’s brought up as a future option to avoid having the procedure done unnecessarily. In essence, an advocate will seek to prevent their child’s pain while an MSbP sufferer will attempt to maximize their reward. Typically, maximizing the reward – usually in this case sympathy and attention – is accomplished by having the child go through the most painful and agonizing route possible.

As knowledge of MSbP has increased, more medical professionals are pushing to place it under the umbrella of Medical Abuse. That is, after all, what it entails. The motivation behind the abuser isn’t as important as recognizing the abuse and removing the abused individual from their care. If you’re unsure of why a caregiver is causing harm and still believe they are Medical Abuse may be a better term to use. That way the focus remains on removing the abused person from the environment with time provided later to evaluate the caregiver.

More information can be found at WebMD.

There is Skilled Labor in the Medical Mom Community

There is a large untapped labor pool that – if someone can figure out how to access it – would provide a significant amount of skilled labor to the marketplace. This set of people has a broad range of skills from software development to professional writing. Some individuals in this mysterious category excel at art, music, or storytelling. The one thing they have in common – a child with a medical condition whose care would cost more than they could earn working.

I recommend employers take a look at this community of people and sincerely evaluate whether or not they can put them to work. They will be part-time employees unless paid more than childcare costs for their child’s unique needs. Some of them may need to make enough, even part time, to replace what they get through state assistance in addition to funding their childcare needs. It won’t be easy or straightforward – but it’ll be worth it.

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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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