Yes, I am fighting another denial from Anthem Blue Cross Blue Shield. Yes, it is for the same procedure that I was battling to have done in 2025 (a single botox shot in her pyloric muscle). After my post on Facebook on September 29, 2025, we finally got approval for Lyra’s procedure. She had it in October and we saw a marked reduction in her spitting up, and a general improvement in her quality of life. I didn’t post about her receiving the procedure because there were still some potential legal things going on in the background. I had to wait until those were resolved to tell the whole story of the nightmare that Anthem, and their contracted pharmacy benefit manager CarelonRx, put me through to get standard care for my 10 year old child. By the time the legal portion was wrapped up, I was emotionally drained and onto the next crisis to manage. So, I put off writing this a little longer.

Then the spitting up started to creep back in.

Lyra’s doctor had told me there was a good chance she would need this procedure more that once to see the full benefit. According to him, Botox has a half life of 4 months. So, it’s common for patients to need another shot around the 6 month mark. The studies that I have read, and passed along to Anthem, say the same thing. Lyra had Botox shots on another portion of her GI tract when she was younger, and it took more than 1 procedure to a sustained improvement. We had different insurance then, and that insurance company didn’t delay her care. So, her doctor submitted to have the procedure performed again.

After a 9 month battle in 2025 to get a single Botox shot approved, Anthem has denied it again. Again Anthem, through CarelonRx is claiming that it isn’t “medically necessary” given her diagnosis. So, I submitted an appeal with all of her records and a number of additional documents. The first 2 documents I attached in that appeal were the approval letters from the last time we had this procedure done. The most important document was from the 3rd party review, which is your last hope when going through the appeals process. In this document, the reviewing doctor (who was the only pediatric GI doctor to review her case on the insurance side) stated:

• “the requested service is appropriate and medically necessary based on the current literature and extenuating circumstances found in this case.”
• “There are no FDA approved therapies for gastroparesis. The current standard of care is to use promotility agents… If medications fail, the use of Botox injections to the pyloric sphincter is an acceptable next step.” – Gastroparesis is where your stomach is slow to empty. It is often painful and causes nausea and vomiting. This is one of the GI conditions Lyra has. We have tried every medication recommended to treat it, and she is currently on 8 medications to manage her GI symptoms.
• “This member has a complex condition and has already tried and failed medical therapy with many agents. Therefore, Botox injection [to] the pyloric sphincter is appropriate in this case and medically necessary.”

You would think, that after submitting this document, from Anthem, along with documentation of how the first procedure provided noted benefits, the lack of complications experienced during/after the first procedure, and all of the records and medical literature provided the first time, that Anthem and CarelonRX might realize their mistake.

Nope. Again, they are denying and delaying medically necessary care.

I highly doubt they even read the documents. Why to I believe that? Because I have evidence of them disregarding the information the first time in 2025. This is the story that I didn’t tell before.

In February 2025 Lyra’s motility specialist doctor (we will call him Dr. BG) and I decided that it was time for the next steps to help manage her spitting her. Dr. BG is one of two GI specialists that Lyra sees at Children’s Hospital of Colorado because her GI system has been so complicated. I am beyond grateful for the level of care that Dr. BG and Dr. K provide Lyra.

In April 2025 I started to get denial letters from Anthem regarding the Botox. It’s not the first time I have received a denial letter, and normally the hospital is able to get everything resolved quickly. However, this time I noticed it wasn’t getting resolved. So, I started calling Anthem. I worked as an adjudicator for a pharmacy after college, so I have some experience calling insurance companies to get information that I am legally entitled to. This was when I knew that things were going to be very different from other denials I had received.

Following the directions on the denial letters from Anthem, I called the numbers on the back of my insurance card. I was consistently told that I had called the wrong department and transferred, only to be told that wasn’t the right department either or that they couldn’t find her case. I was requesting documentation from Anthem regarding how they came to the conclusion that the Botox was not medically necessary. These are documents that every patient is legally entitled to. The denial letters from Anthem even state:

“Can I get copies of documents for my records? Of course! You, or your authorized representative can call Member Service or send us a letter to ask for free copies of all documents including the actual benefit provision, guidelines, protocol, or other similar criterion on which this decision was based. You can also ask us for reasonable access to and copies of all documents, records, communications and other information and evidence relied upon to make this decision.”

It was that last part that I wanted. I especially wanted the notes from the doctor at Anthem who had done a peer-to-peer review (phone conversation) with Dr. BG. Again and again I would call Anthem and request these documents. Again and again I would be told that they could not do that, even when I read the policy to them directly from Anthem’s own documentation. At one point, I was even told that those documents simply do not exist in her file. Not only do I have dates, times, and names for these phone calls, but I have recordings. Anthem should have recordings as well, but I wanted to make sure I have my own just in case theirs end up in the same place as the documents I was requesting.

At this point Mark and I hired a lawyer. We figured we would have to take Anthem to court to get this approved. Upon hiring the lawyer we learned that due to how certain laws are written, lawyers fees could not be included in the lawsuit. We would have to pay for his time out of pocket. However, our lawyer was confident that it was unlikely we would need to go to court. According to him, these situations are often resolved with a letter and a threat of legal action. Luckily with my background in research, I was able to do a lot of legwork finding medical literature to support our case. I also obtained all of Lyra’s medical records regarding her hospital stays and every encounter (appointments/phone calls/emails) that I have had with the GI department at Children’s regarding Lyra. It is close to 10,000 pages. I went through them to mark the information to support our case. I noted where we had tried different medications, the dietary changes we had made, the tests that had been run, and noted the patterns in her symptoms.

It was hours upon hours of my time. Not only that, but I had to sit an read about some of the most traumatic experiences of my life. And I relived them. While reading I lit candles because I could smell the emergency department. I could hear the beeps from her monitors. I could feel the fear, helplessness, and stress in my body. To be honest, writing those 6 sentences caused a flash back. Yes, I have PTSD.

In May 2025 the letter was sent from our lawyer with all the fancy legal stuff, and a flash drive of documents (because her records are just too much to print out). The only thing our letter didn’t address what the “documents, records, communications and other information and evidence relied upon” by doctors at Anthem to make their decision. Why? Because I still didn’t have them. Then, we waited… and waited… and waited. Finally Anthem responded! Just to say that they needed me to fill out paperwork so that they could respond to the lawyer. I filled this out while on vacation in Hawaii.

And Anthem still said that the Botox shot was not “medically necessary” for Lyra.

I regrouped. Tried to figure out my next step. I felt lost. Then we got a letter from Anthem saying that we had exhausted all of our options for internal reviews. Our only option was to do an external review. At this point it was August 2025. I had been working on getting Lyra this procedure since February. Anthem has continued to delay my 10 year old CHILD care. So, I requested an external review.

We were informed that a company called Christopher Place Healthcare Review would be the company looking into Lyra’s case. Of course, Anthem got to pick the company. I did some research into the company and I honestly wasn’t very hopeful. From the little I could find online, it looked like they normally sided with the insurance company. To say I felt hopeless is an understatement.

In late September 2025 we still didn’t have a response. As we frequently do, we went to have dinner at my sister’s house. Lyra has a special bond with her aunt and uncle, and they always make sure to work around what she needs. At dinner she started spitting up escalated, as happened almost every night. My family wasn’t phased or grossed out, they know it’s just her. But I was angry. Not at her, but at the cards she had been dealt. I did what I typically do, and took a video to send to Dr. BG for the purpose of documentation.

On September 29, 2025, I was watching my son at swim practice and cutting up that video to send it to Dr. BG. I had to cut it up because the file size was too large. As I watched and rewatched the video, I was no longer simply angry. I was filled with rage. How was it okay for Anthem to force a child to live like this when there was a well documented treatment? Anthem couldn’t even give me a solid argument for it because they have never sent me the documents I had repeatedly requested. So, not expecting any kind of response I made my post on Facebook calling Anthem out and tagging them:

Hey Anthem Blue Cross and Blue Shield: you keep saying it’s “not medically necessary” for my 10 year old to get a single Botox shot that her pediatric motility specialist at a well respected Children’s Hospital recommends. You won’t even suggest other possible treatments because WE HAVE TRIED EVERYTHING ELSE. You won’t give me the documents I have requested repeatedly. You won’t look at the research from other well respected children’s hospitals showing that this treatment is effective. I want you to watch this video and tell me how it’s okay to let my 10 YEAR OLD live like this, when she can be helped by 1 SHOT. Are you proud of yourself for the money you saved? Yes, I have filed appeals. I have been jumping through all of your hoops. While I perform like a clown in your circus, I want you to see how your decisions impact CHILDREN.

Suddenly I got a phone call from a representative from Anthem’s parent company (I missed it because I was picking up the kiddos at school). Then I got an email from them as well. We set up a meeting and I went into detail about I had been illegally denied the documentation regarding Lyra’s case. I told her how one representative even told me those documents weren’t even in her file. That they didn’t exist. While I told her that I could provide names, dates and times, I held back that I had actual recordings. But I’m not holding anything back now. I explained all of the documentation that I had sent to Anthem, and how her case being reviewed by an ER doctor and a Neonatologist was not appropriate when evaluating an extremely complex GI problem in a 10 year old. I spoke about how Anthem was causing a child to suffer needlessly. I also explained that I understood that Lyra was expensive for Anthem. She is bad for their business model and it is more beneficial for them if her health deteriorates and she dies, than for them to allow doctors to give her all of her medically necessary care. It was blunt and painful, but it’s the truth when you are dealing with for profit medical insurance. She couldn’t even argue with me. She said she would look into Lyra’s case.

After that call I waited a week to see if anything happened. I hadn’t heard back from my contact, so I reached out to her again. I honestly don’t think she expected to hear from me again. I think she expected to allow me to vent, and then I’d move on. Obviously, I wasn’t done. I sent her an email in the morning of October 7, 2025, and by that afternoon I was informed that Anthem had changed their mind and her Botox had been approved. Within days I received an approval letter from Anthem in the mail AND results from Christopher Place. As noted above, Christopher Place also ruled in Lyra’s favor.

But the story doesn’t end there. Yes, we got approval. Yes, Lyra had the procedure and it helped. But what was in those documents? You know, the ones I kept asking for. Why did they continue to say that the Botox was no medically necessary despite all of the evidence saying otherwise? What had changed their minds? Were there really no documents?

So, I tried again. I made another phone call to Anthem with the same results. Then I reached out to my contact at Anthem’s parent company and explained that I was still being denied documents that I’m legally entitled to. She then passed me along to someone else within Anthem to try and resolve this. It’s December 2025 and I am still trying to get the information I am legally entitled to. At least now I have a name and an email for someone at Anthem. However, it takes her weeks to collect the documents. She informs me that CarelonRx is refusing to provide the documents to her, and she has had to get upper management involved. Finally, in January 2026 I receive 3 documents. The first two are redacted to remove names, including the names of the doctors who were listed on the denial forms Anthem had already sent me. These documents did not give any indication that Lyra’s records had even been reviewed. Even the peer-to-peer notes lacked any indication that the doctor had considered the information Dr. BG had given him. The notes didn’t even contain what information Dr. BG had given him. And the third document? Well, that was something that I hadn’t even requested. It was a transcript between my husband and their help desk regarding his own medical information. HIPAA anyone?

So, truthfully, I don’t think those documents exist. I think Lyra was denied care in bad faith. Anthem has been unwilling and unable to provide me, or my lawyer, with any evidence that they did their due diligence. And now, it’d April 2026 and I am back in the same place I was in April 2025. Fighting again for a Botox shot for Lyra. I have no faith that jumping through Anthem’s hoops will result in them doing what they are legally obligated to do. Hiring a lawyer is not financially an option this time around. All I can do is publicly shame Anthem. Even then, my reach doesn’t go very far. I am a 41 year old mom who just tries to make sure that her kids get to school, appointments, and swim practice on time. I’m a mom who just wants to enjoy whatever time I am granted with my daughter. I feel so lucky that I been gifted almost 11 years so far.

My platform might not be very big, and my voice might not be loud. But so long as I have one to speak with, I will say something. Especially since Lyra can’t.

As Maggie Kuhn said, “Speak your mind, even if your voice shakes.”