6 Tips to Help Kids With a 'Failure to Thrive' Diagnosis
I have been on a quest to find a good failure to thrive (FTT) blog. I’ve found a handful worth sharing, but none moved much past the initial shock of the diagnosis. So I’ve decided to write from my own experience. If you’re reading this and new to the diagnosis, I hope these tips will shed some light on what to expect for your little one.
My daughter was diagnosed with FTT at 8 months old. She is now 5 years old. If I could go back in time and tell myself what I know now, it would be practical, real advice.
1. Coming to terms with the diagnosis.
As I’ve read through many blogs, some common themes are guilt, fear, and worry — all valid feelings. I feel fortunate my daughter’s pediatrician did not make me feel guilt. She explained FTT is a medical term used for insurance claim purposes. It’s an unfortunate term, “failure.” Not something you ever want to correlate with your child or your parenting skills.
If you’re new to this diagnosis, I am here to tell you, you are not a failure. There are hundreds of causes for FTT. You may have a long journey ahead of you. You may find a quick answer or, if you’re like me, you may never have an answer. My daughter has gone from a FTT diagnosis to “Small for Gestational Age” (SGA) another vague insurance/medical term.
2. Find a support system.
First and foremost, be your child’s biggest advocate. It can be a very lonely road. There will be times you may question, “should I be worried?” Trust your instincts. Your family and friends may question your intentions. Maybe even your spouse. Remember, everyone has good intentions and probably want what’s best for you and your child. They will not be able to relate. After all, FTT is present in less than five percent of children. The chances of knowing someone personally who has experienced this first-hand is slim. Find an online support group, there are a lot of great ones on Facebook. Other parents will be your best sounding board.
I wish I wouldn’t have talked so much about my daughter to my non-FTT network. It always left me feeling empty. People didn’t know what to say, because they haven’t been there. They were always comparing her to their own healthy child or someone they know who is small. Or my favorite, “Have you tried feeding her cheeseburgers?” Really? These people think I have her on a diet?
3. When it comes to doctors do what feels right.
I actually had a pediatrician recommend I try bananas with peanut butter — thanks for the pointer doc.
Get second opinions. Be open-minded. My daughter had three pediatricians until I found one I liked. We like to believe doctors know everything, but unfortunately they don’t. Every specialist we saw thought they could “fix” her. She was on medication that didn’t help for two years. It didn’t dawn on me until then to take her off of them. It was a lightbulb moment. If they’re not helping her gain weight, why medicate her?
Research any procedures, treatments or medications. Learn the pros and cons of each. Utilize your online support groups, ask other parents about their experiences. Choose what works best for you and your child. Don’t do anything you don’t feel comfortable with. Trust your gut. Be in tune with what is actually helping your child. What works and what doesn’t.
4. Early intervention program.
If your child is under age 2, see if they qualify for your state’s “Early Intervention Program.” Every state is required to provide this service in-home or any other natural environment and it is not based on income. I was surprised we were eligible. She qualified to receive in-home visits once a month from a dietitian and occupational therapist at no cost to our family. We live in the state of Kansas where she received services until age 3. Their visits were invaluable to us. They were able to see my daughter in her environment, where she was comfortable. They gave practical tips for our home, like how to make our high chair work for her petite frame, sippy cups, potty-training, etc. Doctor referrals based on other client recommendations were helpful.
5. Keep a medical summary.
This may seem tedious at times; I wish I had done it sooner than later. I started a simple Word document explaining my daughter’s medical history. It began with my pregnancy complications down to specialists she’d seen, tests, medicines, surgeries, measurements, etc. It has made it very easy to email to a doctor prior to new consultation visit. Several doctors have told me how helpful it was to have all of her medical history in one place that was quick and easy to read through. Some thought I was a little over-the-top, but I’d rather be prepared and over-the-top than unprepared.
6. Meal time.
Food is the center of human life; without it we cannot survive. This is not new information to anyone. You might be asking, why even mention it? I say this as a reminder of how important it is that your child eats and learns to enjoy eating. The last thing you want is your child having a fear of mealtime or develop an aversion towards eating.
For my daughter, eating was a problem since day one. She struggled with nursing, latching, bottles, then spoon feeding. She did not like to eat. Most babies naturally want to eat. Sometimes I need to remind myself of that, it wasn’t anything I was doing wrong. Something was not right. As she got older, mealtime got to be more and more stressful.
I’d be lying if I said I never got frustrated. We’ve both shed tears. As a toddler she started refusing to come to the table. How could I blame her? She was under so much pressure to eat and gain weight.
Over the years, I’ve learned much from the specialists she’s seen. Plus, I have a few tricks of my own up my sleeve. In fact, so many, it would require an addendum.
The key is to try to stay positive. Keep meals fun and light-hearted. Five years into this, mealtimes are still not perfect. But I’m OK with that. I’ve learned to let go a little. Mom to mom advice: Allow yourself to let go of traditional ideas of good eating habits. I’m not talking about nutrition here. I’m talking about allowing your child to watch TV while they eat. Yep. I said it. Gasp! My daughter eats better when she’s distracted. I don’t do it every time, but sometimes it helps. You both need relief from the pressure. The most important thing is to get that much needed nutrition into their bodies. Give yourself permission to bend the rules occasionally. Don’t feel guilty. You have a lot on your plate. Pun intended.
Follow this journey on Pants for Peanuts.
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