Parents of children with any chronic disorder or illness have some things in common. Eventually, your child becomes terrified of labs, blood draws, doctor offices, and medical professionals (lab techs, doctors, and nurses). At my house, we call this Scrub Phobia. Children who endure repeated blood draws go through a period of time where they become so terrified that they often will cry as soon as they see the lab or outside of the hospital building. My sons would begin melting down at home when we applied the EMLA (lidocaine cream). I have shared with you my Top 5 Tips for Surviving Blood Draws. However, it's not just blood draws children fear. They often begin to fear regular doctor appointments as well. Today, I want to share with … [Read more...]
You Are Your Child’s Best Advocate
When my oldest son was born, I remember having a conversation with my sister about how I disagreed with a decision made regarding my son's care. My sister told me: "Never be afraid to flex that mom muscle." What great advice. She was so right. Never be afraid to assert yourself. You are your child's best advocate and you know what is right for you and for your family. I tell that to people all the time. You'd think I would listen to the same advice. I usually do, but, recently, I failed to follow my own advice. 3 weeks ago, my oldest had to have blood drawn for some allergy/immunology testing. His doctor wanted me to use their recommended lab. I really didn't want to because we (of course) have a lab and phlebotomist we prefer. I … [Read more...]
My Child Has Congenital Hypothyroidism: A New Mom Confronts the Diagnosis
I am Thyroid Mom. I have been talking to parents and grandparents of children who were diagnosed with congenital hypothyroidism for several years now. Until this year, I had never met (face to face) with another mother of a child with congenital hypothyroidism. I had never met another child, another than my own, who had congenital hypothyroidism. Imagine my surprise when one day my endocrinologist said to me that she had a patient I needed to speak with. She told me that another patient of hers had just had a son diagnosed with congenital hypothyroidism and that if it was okay with me, she'd like to pass my email address along to her other patient. A few months later, I met my friend Shelley and her son, Gavin. I am pleased to share … [Read more...]
Top 5 Tips for Surviving Blood Draws
Having to deal with frequent blood draws is one of the worst parts of having a child with congenital hypothyroidism. When they are infants, it's heart breaking to watch them cry in pain as the phlebotomist squeezes droplets of blood into the little vials. Then, they become toddlers and are old enough to know what's going on, which may mean that they freak out when you pull in the parking lot of the hospital or lab. This phase lasts until they are 3 or 4 usually. As they get older, though, it does get easier as they are old enough to understand what's going on and why they need the blood test. Until then, here are my Top 5 Tips for Surviving Blood Draws. 1) Relax: No matter what the age, kids are perceptive. They can sense when you … [Read more...]
Should Your Child Do A Trial Off Synthroid?
When parents find out that their child has been diagnosed with congenital hypothyroidism usually one of the first questions we ask is "Will my child have to be on this medicine for life?" The pediatric endocrinologist then launches into an explanation of transient congenital hypothyroidism. Transient congenital hypothyroidism is abnormal thyroid function, which later reverts to normal. There is some debate within the medical community as to whether infants who have abnormal thyroid function on newborn screens but have subsequent test results showing that the thyroid function has become normal should be considered to have had transient congenital hypothyroidism. For the most part, though, transient congenital hypothyroidism … [Read more...]
Raising Children with Congenital Hypothyroidism
WELCOME TO HOLLAND by Emily Perl Kingsley I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to … [Read more...]
Are your child’s pajamas safe?
Pajamas – have you given much thought to what pajamas your kid wears? Other than whether they are Dora or Spiderman? What about the mattress they are sleeping on? Well, you should. A few years ago, I read that the flame retardant chemicals used in everything from children’s pajamas to mattresses to infant nursing pillows have been found to be endocrine disrupters. It upset me beyond words, and worries me to this day, particularly given that everyone in my family has an endocrine disorder (Congenital Hypothyroidism, Hashitmoto's Thyroiditis, & Graves Disease). What is an endocrine disrupter? According to the Natural Resources Defense Council ("NRDC"), “an endocrine disruptor is a synthetic chemical that when … [Read more...]
Golden Birthday – Kids with Congenital Hypothyroidism
Struggles in Raising Kids with Congenital Hypothyroidism That precious, little baby in the picture is my oldest son who has congenital hypothyroidism. He was 5 months old and in the hospital when that picture was taken. My oldest son recently had his golden birthday. Your golden birthday is when you turn the age that corresponds with the day of the month you were born. For example, if you were born on January 18th, your golden birthday would be the year you turn 18. I think your golden birthday should be a birthday that gets a little extra attention. So, we bought some gold balloons ready and ordered a cake with a big gold medal on it. Just a few things to make this birthday stand out a bit. When I think about how much he's … [Read more...]
Chat about Congenital Hypothyroidism Symptoms follow up
What does it feel like to be "off"? A follow-up Q &A with my oldest son about his Congenital Hypothyroidism Symptoms Recently, a reader asked me if my son could help articulate what "off" feels like using feeling words like tired, achy, etc. to help her better understand what her child was experiencing. In other words, better describe the symptoms of congenital hypothyroidism. Interestingly, her question coincided with a period of him being "off". We noticed that he seemed to be more tearful and have more difficultly sleeping. Both boys have an appointment coming up with their pediatric endocrinologist and so just had their thyroid levels (TSH, FT4, & T4) checked. The results revealed that my oldest (the one interviewed) is … [Read more...]
Out of the Mouth of Babes: A Child’s Perspective on Congenital Hypothyroidism
That’s me with my oldest at Disney when he was 3 years old and then again just recently. He’s 7 now. Those 4 years certainly flew by - way faster than he drove me around that race track a few weeks ago. He’s turned into quite the amazing kid - wise beyond his years. I recently interviewed him about what it’s like to have congenital hypothyroidism and here’s what he had to say: What does congenital hypothyroidism mean? It means that your thyroid doesn’t work that well. You don’t want to have it. You have to take a pill every morning. Where is your thyroid? In your throat and it’s shaped like a butterfly. How did you learn to take a pill? My wonderful mom and dad just told me I had to. I said I don’t want to … [Read more...]