LittleBear | Sleuth

LittleBear

Female / 5 years & 2 months

LittleBear’s Journey

Share the first part of LittleBear's story for readers on Sleuth! When and why did you start to feel concerned?

My child (last of 4) cried a lot. She was the epitome of colic. I exclusively breastfed her and constantly held her. I assumed her physical delays and speech delays were a result of the catering. It wasn't until we noticed her feet dragging a little that we realized we should have her evaluated. The physical therapist explained hypotonia/low muscle tone to us. Sadly, no one explained that it would be lifelong and the other delays that often come with it.

What was your experience, if any, seeking a diagnosis or treatment?

My little one will be 3 on December 18th and we still haven't received a diagnosis. This is 3-4 therapies a week, utilizing both state offered intervention services and private therapy with insurance. We have been to a neurologist, a muscular neurologist and have been on a Developmental Pediatrician wait-list for 2 years! Finally, we will see a Developmental Pediatrician on November 22. This has not come easy. I can't stress enough the importance of asking questions and advocating for your child. Go with your instincts and make sure you see the specialists you think will help clarify your child's differences.

Do you have any other thoughts or advice you would like to share from this experience?

It was helpful utilizing early intervention services. What a great program. We were in Northern Virginia at the time and it was excellent care. Don't be afraid to research your child's symptoms from reputable sites and make a list for your pediatrician. I just kept calling until they were able to observe the details themselves. Find support with other parents, online forums and Facebook groups. The journey has plenty of ups and downs. Celebrate every milestone your little one reaches, no matter when it's met! Go with your instinct! You know your baby best!