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7 Ways to Advocate and Support Friends and Family with a Rare Disease – The Sidetracked Parent
I had a question from one of my friends today so I thought I would address it in a blog post. This person asked me, "What is the best way for me to be an advocate for my parent friends who have children with rare diseases?" Well now, that is an excellent question! As parents of children with rare diseases, we get throw
Rare Disease Day 2023 – The Sidetracked Parent
Every year since 2008, Rare Disease Day is celebrated all around the world. Since February 29th is the "rarest day" on the calendar, it was chosen for that date. Most years, like this year, it is celebrated on February 28th instead. It was created by EURODIS and the Council of National Alliances to spread global awaren
Day #7 of D-Blog Week: What we’ve learned – The Sidetracked Parent
What we’ve learned – Sunday 5/15: Last year, Wendy of Candy Heartsmade a suggestion for this year. She commented “I think Day 7 should be a post about stuff we’ve learned from other blogs or the experience of coming together online…” Today, let’s do just that!! What have you learned from other blogs – either this we
Dexcom – The Sidetracked Parent
Well, today was the day! Andy got the Dexcom Granted, we are just doing a trial, but even in the few hours since we started, it’s really opened my eyes up to how crazy his blood sugars still are. The insertion wasn’t nearly as bad as I thought. I just stood him in between my legs and laid his torso over my left le
Long Time Gone – The Sidetracked Parent
Wow! I knew I had neglected this blog for a while but had no idea it had been nearly two years! I decided it was time to kick things into gear and start blogging again about our journey. So many things have happened over the last two years and I may not totally back track to all of the little daily ins and outs. I will
11 Years With a Life Changing Diagnosis – The Sidetracked Parent
Eleven years ago we were entering Brenner’s Children’s Hospital in North Carolina to become pioneers for a rare disease. While Andy was not the first patient in the United States to come off of insulin, he was definitely in the inaugural class (we think one of the first 5 at least). For 17 months, we kept him alive by
Katie’s New Diagnosis – The Sidetracked Parent
This is an overdue post. We’ve now been in the Cincinnati area for over a year and we have been slowly getting the kids settled into their new team of doctors at Cincinnati Children’s. After meeting with the endocrinologist, neurologist and neurodevelopmental specialist, we decided to start the full testing for Katie
Day #6 of D-Blog Week: Snapshots – The Sidetracked Parent
Saturday snapshots – Saturday 5/14:Today is the only day I’ve brought back a fun topic from last year. Inspired by the Diabetes 365 project, let’s snap a few more d-related pictures and share them again. Post as many or as few as you’d like. Be creative! Feel free to blog your thoughts on or explanations of your pi
Mom’s Bright Idea! Let’s Go For A Walk! – The Sidetracked Parent
If you are a parent of at least one child on the spectrum or with SPD or motor delays, you will no doubt relate to this story. When I see other children outside playing in their yards or close to home I get jealous sometimes. I admit it would be nice to just tell my kids (much like my own parents did) to “go outside an
A Thought on Speech Delays – The Sidetracked Parent
I love that I have discovered the stats on my blog now. My favorite thing, right after looking at how many people have visited my site, is looking at the search terms that people have used to get here. It helps me to see what people are looking for and gives me ideas of how people have happened upon my site. One sea
Meeting with the Experts – The Sidetracked Parent
Last week we had the advantage of traveling to Chicago to the second North American conference on Monogenic Diabetes. While there we had the privilege of meeting with Dr. Hattersley from the UK. He was very interested in our story of low blood sugars with the infection and antibiotics back in early 2011. But when I tol
I Can Do It Myself! – The Sidetracked Parent
As Katie has grown up we have had both moments of clarity where we are absolutely sure she is displaying behavior that is typical for her age and moments if confusion where we are just not sure what’s normal. This morning was a moment of clarity as my daughter showed her true 3-year-old character. Stepping on the bus t
August: Our Family's Diaversary Month – The Sidetracked Parent
For every parent, the birth of their child is a significant month. But for the parent of a child with a rare disease, or a significant diagnosis, the month of diagnosis is also a time that is forever remembered. For some, especially in the diabetes world, we call this our "Diaversary". August is always a hard month for
Closing the Gap: Is Gene Therapy Our Future? – The Sidetracked Parent
There are two thoughts that ran through my mind when our doctor told us that our son had a rare genetic mutation: Which one of us gave it to him (or was it both of us)? – and Why can’t they just replace the gene with the correct one? While the answer to the first question may be easier to answer for certain diseases an
Site Under Construction – Exploring the Purpose of this Blog – The Sidetracked Parent
In the beginning when I started this blog, the reason was to spread awareness. I knew that my husband and I became frustrated for years by not being able to find information on the type of diabetes my son had. No matter what search we put in, the information about “babies with diabetes” just didn’t exist. At least n
Pretty Nails To Support Children with Disabilities – The Sidetracked Parent
I knew I loved Jamberry nails long before I even tried them and long before I decided to sell them. Part of what I love about the company is that they are all about giving back to people in need. They carry certain wraps called charity wraps that they donate $2 from each sale to that charity. Now, for a limited time th
Closing the Gap: What the Research Says – The Sidetracked Parent
Disclaimer: The information shared in this post is in no way meant to be a diagnosis or treatment for you or your child’s condition. Please know that our only intention is to share our story and help others see how we have advocated for the care and treatment of our children with a rare disease. Please consult a phy
At Last – Potty Training Success! – The Sidetracked Parent
Last year at this time we were very discouraged and at a loss for what to do. You see, Andy was sort of potty trained at around 5 years old but had some regression once he started having his absence seizures. Potty training with him has been a VERY LONG ROAD. Like most parents, we started putting Andy on the potty so
Potty Training the Second Child – The Sidetracked Parent
I was hoping that potty training on Katie would be easier and quicker since we’ve tried so long with Andy. But any parent with more than one child knows, every child is different. We tried a little with Katie last summer just because she was two and we thought we should. She just had absolutely no interest at all. Thro
New Tests, New Diagnoses, New Pills – The Sidetracked Parent
It’s been an absolutely crazy busy month which is why I haven’t posted anything in so long. Andy graduated from Kindergarten on Friday and the last day of school was Monday. We are trying to find a house to buy (if we get approved) while also looking for a place to rent just in case we can’t get everything closed by
Towers of Pillows – The Sidetracked Parent
Anybody who has a child on the spectrum or with SPD probably took one peak at that title and shook their head in understanding. “Yep, my kid does that too” you’re saying. Sometimes I look at Andy and just think, if only he could talk like a normal kid, he would probably be a genius! He is such a little scientist. I
Miss Independence – The Sidetracked Parent
The ear-piecing scream echoes in my head as I sit at the table watching her eat. She has a sweet angel-face on right now, but I know, like a light switch, she can easily flip on the face of discontent in 0.2 seconds. I persist through breakfast with a quick “a-a, eat please” every time I see the look on her face or hea
Day #5 of D-Blog Week: Awesomeness – The Sidetracked Parent
Awesome things – Friday 5/13:In February the #dsma blog carnival challenged us to write about the most awesome thing we’d done DESPITE diabetes. Today let’s put a twist on that topic and focus on the good things diabetes has brought us. What awesome thing have you (or your child) done BECAUSE of diabetes? After all,
Spreading Awareness – The Sidetracked Parent
One of the problems of having a rare disease is that awareness does not spread very quickly. It surprises and saddens me that we are coming up on 10 years into a new treatment for about 90% of patients with Neonatal Diabetes and still the estimated undiagnosed are in the thousands. Three years ago at the conference in
Day #4 of D-Blog Week: Wild Card, Limerick Day – The Sidetracked Parent
Today’s topic for D-Blog week was 10 things I hate about Diabetes, but I’ve been trying to put myself in a more positive mood lately so I just didn’t want to get all bogged down in the negativity of doing a post like that. Instead I decided to do one of the wildcard topics. I thought I could do the “Step outside the
Kicking the Bottle – Cold Turkey – The Sidetracked Parent
Before anybody starts to judge my parenting skills, I just want to say that I often “know” what I’m supposed to do, but quite often follow the children’s lead and stick with some things way longer than is good for them. That being said, today is day one of kicking the bottle habit for Katie. I should have done this b
Update – The Sidetracked Parent
I know it’s been a while since I’ve done a major update. Life has happened. I have been back at work full time since August of 2014 and had a part time job that felt like a full time job from August 2012-June2014. That being said, I feel that I need to get back to blogging at least on a part time basis. So much has
Secrets of Expanding the 5 Food SPD Diet – The Sidetracked Parent
Andy went through a phase when he was about 3 or 4 years old where he was a picky eater. He had the typical preschooler diet of chicken nuggets, macaroni and cheese, hot dogs, cereal and peanut butter and jelly. We started trying to expand his pallette at dinner time and fought the “refusing to eat” battle for about a
Closing the Gap: The First Two Weeks on Carbamazepine – The Sidetracked Parent
We are now at the end of the second week on Andy’s new medicine, Carbamazepine (Tegratol), and so far, we have had no adverse side effects. We started him on a small dose of 2.5 ml (50 mg) twice per day for the first week and then increased it up to 5 ml (100 mg) twice per day for the second week. We will continue to