Continued Advocacy: How to Stay Resilient During Challenges With Your Medical Plan

It can be so discouraging when you are consistently dismissed, told to wait and see, or forced to be put into a sit and wait cycle when it comes to getting the right medical care for your kiddos. As a mama, I know this all too well. As a medical mama, I know it more than I would like to admit. While I am sitting here typing this, I am having to remind myself how to stay resilient during challenges with your medical plan, more than ever. And this is where the mamabear energy, that “I won’t take no for an answer” comes in. Where my advocacy skills get to their peak state (as Tony Robbins would say), and I roll up my sleeves to mean BUSINESS. 

You see, I have had to practice these skills as a woman my whole adult life. They have been honed when trying to get a doctor to listen to me seriously when I tell them my symptoms, when I get on Google trying to self-diagnose so I can have a sliver of hope with evidence once I get to the appointment. Psyching myself up for dismissal and for rolled eyes that tell me it is all in my head, or this is “perfectly normal for a woman your age”, blah blah blah. But, it has gotten even worse since becoming a mother, a mother who knows there is ABSOLUTELY something wrong with my child. And, I will do NOTHING but advocate, and insist on more support, until we find answers. This is really where this entire blog and company was formed. I consistently felt like I had to gear up and prepare myself to advocate. And, I learned very quickly that just getting emotional was not going to get me anywhere. I needed facts, I needed proof, I needed answers. 

So, where are we now? We are about halfway towards full diagnosis and treatment plans for my kiddos.

What does this look like for us so far? 

• Successful tongue and lip tie releases for 2/3 kiddos 
• Allergy diagnosis/intolerance plans for myself, and 2/3 kiddos, with slowly transforming entire diet plans for the whole family 
• Ear Tubes for all three kiddos, including ear tubes x2 for 2/3
• Adenoid removal for 2/3 kiddos 
• Laryngomalacia diagnosis for 1/3 kiddo, with watching and waiting as treatment
• Full IBCLC support for breastfeeding for 2/3 kiddos
• Consistent chiropractor support for all 3 kiddos until age 3 and now regularly throughout the year
• Feeding therapy/myofunctional therapy for all 3 kiddos
• Sensory/OT therapy for 2/3 kiddos 
• Bronchoscopy for 1/3 kiddos to determine airway prognosis
• Sleep studies done for 2/3 kiddos 2x each, formally diagnosing Obstructive Sleep Apnea in both kiddos 
• Consistent allergy testing and pulmonology support for 2/3 kiddos with asthma diagnosis and emergency care plans in place
• Full airway expansion under way for 2/3 kiddos including upper and lower expanders for both. One child is currently adding brackets/braces to teeth and the other is undergoing crank expansion and is about to get night/head gear added to the plan
• Heart murmur leading to finding two holes in 1/3 kiddos heart, and watching and waiting to see if any intervention was needed. Luckily for us, we are officially cleared for now and do not need further treatment. 

On the Horizon:  

• Continued airway expansion and symptom tracking for 2/3 kiddos until we see full results/improvements, including but not limited to:
  • Frequent bed wetting (resolved)
  • ODD/ADHD mirrored behaviors (working on)
  • Sensory issues to food, in particular related to smell (working on)
  • Continued emergency room visits for closed airways and inability to breathe (working on)
  • Tooth crowding (major) and smaller palate/jaw (working on)
  • Jaw strength, chewing mobility (working on)
  • Snoring
  • Night Terrors and thrashing/restless sleep 
  • Poor growth
  • Emotional Regulation
• Consistently Getting Sick and ending up in the ER (currently working on, more on this in a bit)
• Tongue and Lip Tie Release (1/3 kiddos)
• Sleep Apnea Diagnosis/Sleep Study (1/3 kiddos)
• Diet and nutritional support/increases (ongoing)
• Continued chiro/myofunctional support (ongoing)

Where and What Now? 

We have been super frustrated with the healthcare system, and the fact that none of the providers seem to speak to each other. Even when they are all in the same network. We have had to do so much advocating and informational sessions with our providers, bringing cases, medical plans, and more to each of them, that we feel like we should have a medical degree and clipboard at this point! We legitimately backed out of getting our kiddos tonsils removed last minute this July during an ear tube removal procedure because the day before, we decided we needed a second opinion from our airway orthodontist because we had heard so much research saying that it was not needed. In fact, the statistic we brought to the table was from another airway dentist that had stated findings that 97% of the children who are treated with expansion, getting to the ROOT cause of breathing issues and enlargement of both adenoids and tonsils, could actually avoid removal altogether. Because you see, removing the tonsils and the adenoids is not SOLVING the problem. Just like pulling teeth is not solving the problem of overcrowding in the mouth. It is just addressing the issue at hand. This is the exact same way that we had felt about our asthma emergency plan. It just addressed the emergency, not the root cause as to WHY we were having so many asthma attacks and hospitalizations.

Introducing our plan on how to stay resilient during challenges with our medical plan.

We have had to constantly push our providers to sit with us, and to help us understand the why, not the what and the now. When we went in the day before our surgery for the tonsilectomy, our airway orthodontist literally sat with us, drew pictures, and explained from start to finish what was happening. He pulled up pictures of the initial consultation of our child prior to getting his expander placed, and showed us how large his tonsils were at that time. Then, he showed us the current state of his tonsils. They had decreased in size by more than double in the four months since his expander had been placed, and he explained, in this instance, his issues were absolutely NOT because his tonsils were enlarged. The airway issues (narrow/blocked airways and narrow palate) were why his tonsils were enlarged and already we were seeing HUGE progress on this becoming almost negligible. No one had done that before. No one had sat down and walked us through, with clinical evidence, what was happening with our kid. And, so we made the decision to cancel the procedure and we have not looked back. 

You know what else has changed significantly in the four months we have had the expander in this kiddo? Besides the set backs of him being seven and breaking it numerous times, he has: 

• Completely stopped nighttime bedwetting!!!! I mean, zero accidents in eight weeks. HOLY MOLY!
• Has avoided hospitalization for airway obstructions/issues for four months now and counting (UMMMM WHAT??!!!)
• Snoring is significantly improving

For our other child, who is in year three of expansion treatment, we have seen:

• Significant improvement in sleep in general. They went from never sleeping through the night to sleeping through the night at least four days per week. HUGE WIN
• Restful sleep: while this is still an ongoing issue, we have seen deep improvements with quality of sleep
• Anger, Anxiety, and Emotional Outbursts have improved each year
• With additional supplements and balancing of therapy and support, we have seen a huge change in her overall happiness and coping strategies

This, my friends, is a huge WIN. But, we are still battling on the other side of the house, which is why, in general, my kiddos get sick so often, and so significantly worse than their peers. This has been a huge uphill battle with so much lab testing, experimentation, and documentation. I have legit compiled over 100 pages of medical documentation, including dates, notes, and visits/outcomes for my kids to submit to both our provider and insurance to support his diagnosis of a specific antibody deficiency. The labs support it, and so does our provider and our story. But, insurance continues to deny our claims for treatment and we are unsure why this is happening. So, we continue to roll up our sleeves and keep fighting. And the first thing we do, is connect with our provider and ask questions. I accidentally called our doctor on her personal cell phone this week thinking it was the office, and I am so glad this outcome happened. While not my intention, I got a hold of the doctor first hand instead of  going through the front desk or our medical portal and was able to talk to her 1:1 about my discouragement and frustration. She had not even heard from the office yet regarding the rejection and was similarly baffled by the outcome. But, she put immediate protocol into action following up with her team and our medical review group, and they are again, going back to the drawing board to figure out where this is getting stuck. 

Advice for Mamas Like Me: Stay Resilient During Challenges With Your Medical Plan

The best advice I can give to other mamas in this situation, when you are feeling like you need to stay resilient during challenges with your medical plan, whether that be gaining a diagnosis, getting treatment, or battling insurance, it is the following: 

• Document Everything:  I mean, everything. Symptoms, dates, times, medications administered, calls to the office, everything. We keep this symptom tracker for families who are just in the beginning of their journey as a GREAT first step. We also have print outs of all of our doctors visits including the notes that don’t come up on the visit summary and our own running date/time/notes tracker just in our notes app on our phone so we have EVERYTHING compiled.
• Ask Other Parents: Whether your local group of mom friends, or a Facebook group, it is always an awesome idea to share a bit of your story and see if anyone else has gone through something similar and found answers. While this can be a rabbit hole, sometimes your nearest and dearest have the information you already seek, and you just don’t know it. I found this out the hard way going through a miscarriage. When I felt so alone, I had no idea that friends that I had known for years had already been through this and I had a built in support system. You just have to ask.
• Look for the Helpers: There are some amazing providers out there. I know that I harp a lot on BAD providers that I have found and dismissed, but I have also found AMAZING ones that have really lifted me up and helped me advocate for my child and find other providers like them. They are an incredible resource for you, and can help you connect with the community and specialists that you need.
• Join Our Community: You are here! This is your built in support group of moms (like me!) who have already been through so many feeding and breathing issues. I built this page exactly for people like me. You are HOME. There are so many things that we offer parents just like you, so make sure to check it out and choose the best path for YOU. 

Sending you all the love and light today and everyday on your journey. Keep going. And, stay connected with us and our team. You’ve got this.