Kristen's Journey with a Team of Professionals

This is Kristen's story. At least part of it.

Kristen is a beautiful mother to three precious girls. I've had the ability to help support her in her journey through motherhood, and she expressed wanting to write about a topic that has become really important to her.

If you haven't read my blog post Why You Need a Team Approach to Support Your Infant's Development, take a minute to check it out.

The following is Kristen's full written piece about her journey, and her message that she'd like to share with all parents.

"As new parents, we assumed that a pediatrician was all that we needed to help us stay on track with the health and developmental well-being of our children. We now have a 6 year old, 3 year old, and 8 month old and have thoroughly discovered that our children need a team of people to help and support them. I hope this information will be helpful for someone!

The pediatrician office that we use has been great when our children have been sick with a bacterial infection. Our 6 year old became infected with campylobacter after going to a petting zoo and needed to visit the emergency department. Without their help, she could have experienced more severe symptoms and not received the help she desperately needed. They were also helpful when our oldest was diagnosed with 10 cavities at one time. They referred us to a new dentist and ordered a blood panel to make sure that she did not have an infection that could have contributed to the oral issues.

I think it is important to highlight the things they have been helpful with, before I share the lack of support they have provided, and in some cases, hindrances that they have been in the care we have tried to give our children. I have learned that WE are our children’s best advocate, that you should always seek the opinion of a specialist if you are unsure about the advice given, and you must remember that the doctor works for you, you do not have to stay with a pediatrician that is unwilling to explore root causes or withhold referrals or tests because they think it is unnecessary.

Let’s start at the beginning. When my first daughter was born, I was able to and chose to exclusively breast feed. It was one of the most painful experiences I have ever had. I was cracked and bleeding for weeks. I was told that it would get better and I just needed to get through it. I was told to use the nipple cream and let them “air out” as much as possible. Not once was my daughter evaluated for oral restriction (tongue, lip or buccal tie). Not once was I referred to a lactation consultant.

My daughter would not crawl, she would only scoot on one side of her body. Our pediatrician told us “some babies don’t crawl”. She did not ask any additional questions, did not refer me to a pediatric physical therapist, nothing. She should have. My daughter now has one knee that turns slightly inward and causes her pain if she lands on it wrong when playing or jumping.

She also did not walk until she was 14 months old. My pediatrician said that she would not refer me to a specialist until she was 18 months old and not walking.

When my second daughter was born, I received help from a lactation consultant in the hospital and discovered that I had been nursing my daughter incorrectly, and had therefor nursed my first daughter incorrectly. They were so helpful and saved me weeks of constant pain. Why was that help not offered the first time? Because I knew to ask for it this time? Why are first time parents at such a disadvantage? Also, She would not take a bottle. My pediatrician wasn’t concerned because I stayed at home. No referral to a specialist to check for oral restriction, no recommendation to use a standard nipple bottle. I could not leave for more than 2-3 hours for the first 6 months, unless it was after I put her down for the night.

When my second daughter was 9 months old, I took classes from “Their Best Start” with Gina and Laura. For the first time I realized that my pediatrician was not the only person to assist in the health of my children. Their class gave me the information to understand what I was looking for in all aspects of childcare and development and the power and confidence to stand up for what was best for my children.

I am a confident person, I communicate well with others, I was a teacher for many years before I had children, and my husband works in the healthcare industry. My sister is a pediatric nurse and my mom is an early childhood specialist. I took all of the classes that the hospital offered. My husband read all of the pregnancy and newborn books. We really thought we were prepared. I honestly did not know how much information was missing until I took “Their Best Start”.

When our second daughter was not crawling by 10 months I reached out to Gina and she asked me if our daughter was able to kneel. I said that she was not, so Gina provided some exercises and activities to promote kneeling. Did you know that kneeling is a milestone? I didn’t! It is an important one to reach, prior to crawling! And my pediatrician has never talked about that, even when two of my kids were struggling to crawl!

When she was still not walking at 15 months and I let our pediatrician know, she responded with the “let’s wait until 18 months” again. So I reached out to Gina again and she said that our daughter would benefit from a pediatric physical therapy evaluation. It was determined that our daughter was struggling with over pronation on her right foot. Her ankle bone was almost toughing the floor when she stood up. Can you imagine trying to walk like that?! Thankfully, she just needed some orthotics in her shoes to help correct the position of her foot. She walked within 15 minutes of having the orthotics in her shoes. FIFTEEN MINUTES! Her pediatrician never even looked at her foot.

When our oldest was 4 years old, our dentist encouraged us to see and ENT because of her enlarged tonsils. Our pediatrician didn’t think this was necessary, but we went anyway. The ENT said that her tonsils were 50% enlarged, but he would not remove them unless she had a sleep study that showed she had sleep apnea. This is the same daughter that was diagnosed with 10 cavities at age 5. We had her cavities fixed over the course of 4 months, but I was determined to get to the root of the problem. I started to research why kids who eat healthy and brush their teeth get cavities.

During this time, my daughter was also struggling in school and her teacher thought she might have dyslexia. We had her evaluated by an educational psychologist at an area university, who determined that she did not have dyslexia or ADHD/ADD.

I was also pregnant with my third daughter while we were figuring out what was going on with our oldest daughter. When my 3rd baby was 2 weeks old, she started spitting up constantly. I was going through 4-6 burp cloths by mid-morning. By the evening, I was switching to hand towels. She spit up on both of her older sisters, every couch cushion had been spit up on (don’t worry, they have been washed!), and I was changing multiple times a day. The worst part was that she was so uncomfortable when she laid down, and she was soaking her sleep sack and pajamas at least 3 times at night. I was doing a full outfit change multiple times, every night.

After a few days of this, I sent a message to our pediatrician, describing the symptoms and asking for help. The response was that if she was gaining weight, then it wasn’t a problem. So I literally ordered 10 more burp cloths and 2 more sleep sacks and prepared for lots of laundry.

I also sent Gina a message and just mentioned what was going on, in case she happened to have any insight. She let me know that this was a common problem, but it was not normal, and that I should have a specialist evaluate our daughter as soon as possible. We had a physical therapist check her body for tightness and do some body work. She suspected oral restriction and referred us to a speech and language pathologist & certified lactation consultant. She immediately confirmed a posterior tongue tie, lip tie, and buccal tie. Holy oral restriction!! She gave us some stretches and referred us to a pediatric dentist that was able to release the ties with a laser in just a few moments.

Her symptoms improved dramatically! She was so much more relaxed and so happy. Her latch was immediately better and she licked her lips for the first time! It was unbelievable. And would have not happened if I had only followed the advice of my pediatrician. We followed up with bodywork, oral stretches, and a pediatric chiropractor to make sure everything healed in alignment.

During a follow-up visit with the dentist who released the oral ties, I mentioned something about my oldest and her 10 cavities. She asked me if my daughter was a mouth breather? Sometimes. She asked if she was tired during the day even after sleeping all night? Yes! She asked me if she had trouble focusing? Yes. She had just been tested for attention issues! She asked me if there were dark circles under my daughter’s eyes? Yes, every day. She asked if she ever wet the bed? Still wears a pull up every night. She said that my daughter likely had an airway issue and was not getting the appropriate amount of oxygen to her brain while sleeping. With a few questions, this doctor had given me answers that I had been searching for, for years. All of these concerns had been brought up to my pediatrician multiple times and I was told to “wait and see” Well what exactly am I waiting to see?? Waiting for her to struggle in school? Waiting for her to become so exhausted that we have her unnecessarily tested for something? No more “wait and see” for this family. Early intervention is key.

Also, why were all of these symptoms not looked at in conjunction with one another?

With all of this new information , we went to an orthodontist that specializes in airways. My daughter needs a palate expander. She may also need her adenoids and/or tonsils out, after we see the progress made with the palate expander.

There is a lot that goes into her treatment, but the bottom line is this: advocate for your children, and rely on a team of professionals to help your children develop into the strongest and healthiest they can be! Be proactive, the “wait and see” philosophy often requires reactive intervention, and in our case, it has been physically painful and emotionally traumatizing for our daughter. Don’t wait. Become empowered with the information you need to help your children thrive!"

-Kristen, wife, educator, mother to 3

Thank you for sharing your message, Kristen! I hope others find your experience helpful and I hope it gives them the courage and the understanding to trust themselves as parents to advocate for their child.

Gina Mydlo, PT, DPT

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