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.

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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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