Just Parents in Life

Journey through our trials and triumphs of raising a transgender child and his two sisters.

Month: October, 2016

Just keep fighting…Just keep fighting…

So, I thought the fight was over and that we were moving forward with our sons surgery…I was wrong. I cannot believe how difficult this whole process has been. Now, I am fighting with the pharmacy and their lack of care or concern to get the approval processed and order the medication needed. CHLA and I have spent the last two weeks fighting Caremark. Faxing over the approvals and prescriptions, following up and re-faxing approvals and prescriptions and getting nowhere. I cried again today. Tears of frustration have become a normal part of my routine. Its been 90 days since we saw Dr. Olson-Kennedy. I thought we would have had the procedure by now, but here I am, still fighting for my sons medical right to hormone blockers.

I worry daily that it’s going to be too late by the time we get the surgery scheduled. I worry daily that irreversible puberty will kick in before we get it all handled. I worry daily about what that will do to my sons mental health. I am carrying this tremendous worry around that has me constantly in tears and easily on the verge of a mental breakdown. I keep telling myself in my best “Dory” voice (from Finding Nemo), “Just keep fighting…Just keep fighting.”

I feel like as soon as the surgery is done and the medicine kicks in, it will be a huge sigh of relief, the worry will lift and we can just enjoy our life again. I know that there will always be worries as parents, but, this surgery will allow us a year to just settle in and enjoy our son. Please keep us in your positive thoughts as we continue to hold onto that “ounce of hope” that it will all resolve itself soon.

♥︎ Just Parents

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The Appeal Process

Ever feel like a tidal wave of emotions is attacking your mind, body and spirit? Yeah, thats me (mom) this last month. I think the last seven months had caught up to me last week. In July, our son saw Dr. Olson-Kennedy at Childrens Hospital Los Angeles and it was recommended that we immediately get him on hormone blockers as he was in late stage 2 of female puberty. Our medical group denied the procedure, so we had to file an appeal with our insurance carrier. They get 30 days to make a decision and if they don’t approve it, then you can appeal to the Independent Medical Review (IMR) board.

Our insurance carrier had until last Friday to make a  decision on whether or not to approve the hormone blockers our son desperately needs to feel normal. I have pages of documented notes calling our insurance and almost every time, I got cordial people who really are just getting through their job for the day. Last week, I got a person who I could tell immediately had a cold and my heart dropped. Oh great, I thought. She’s going to be crabby and short since she is sick. I summoned up my kindness (instead of the F bombs of past conversations) and told her I was sorry she was not feeling well before asking for her assistance. She surprised me. She actually cared to see what was going on. She went over the entire notes on our file and asked questions about what she was reading. She discovered that they had NOT received the medical records and letters from doctors that were sent over last week and asked for my number to call me back, so that she can try to locate those faxes. We hung up and I had an emotional breakdown. Why? Why is this so difficult? I felt like our insurance carrier was trying so hard to make sure they didn’t have what they needed to make their decision to our appeal.

I called her back an hour later (because she never returned my call like she said she would) and she advised they never received any faxes. I got a little hysterical with her and started to cry again, from frustration, and I think she felt bad. She offered to call our therapists office herself to ask them to re-fax all the medical records. She followed up with me (and by followed up with me, I mean she replied to my email) to tell me she was in receipt of everything needed to make their decision and that she had passed our file onto the Medical Director and that the decision would be made on Friday, September 30, 2016. All my hard work was over. I did all I possibly could to prove to these medical professionals that this treatment was in the best interest of our son. She also let me know that they will not verbally notify me of their decision and that I will have to wait until a letter is generated and sent out via regular mail. 😱 So, I just tried my best to wait patiently.

Yesterday was Tuesday, October 4, 2016 and I just couldn’t handle the anticipation (I’m not very patient) any longer. I emailed the employee that so graciously helped me last week and told her I hoped she was feeling better and that if she could let me know if in fact a decision was made and when I could expect a letter to be mailed out, I would be grateful.  About an hour later, I saw an email come through from our insurance carrier and my heart stopped for a moment. I immediately opened it up and read the words “Your request of consultation and insertion of Supprelin LAVantas implant (hormone therapy) at the CHLA Department of Adolescent Medicine for the diagnosis of Adolescent Gender Dysphoria has been approved” and I screamed out in excitement, yelled for our son and told him it was approved!! We hugged and I cried a little as I felt so relieved to not have to start another appeal with the Independent Medical Review Board. I told him if he was 21 we would have celebrated with a glass of champagne!!! That letter took a HUGE load of bricks off my shoulders and I immediately felt better.

I started sharing our news with my hubby, our doctor at CHLA, our mental health offices that worked so hard and swiftly to help me get the proper paperwork submitted and to our family that knew what was happening over these last several weeks. If I could have written it across the sky for everyone in the world to read, I probably would have!

I have gotten some questions about what a hormone blocker is and why we need it, so I just wanted to share with everyone. This procedure will implant a small, soft tube into his left inside upper arm. It is a minimally invasive surgical procedure done by a specialist in their medical office. This tube will release a medicine called histrelin which blocks the action of the gonadotropin releasing hormone (GnRH). Basically, this will stop female puberty from setting in on his body.  This will need to be in place until our son is ready to start the process of male puberty.

So, now we wait until we hear back from CHLA as to when our consultation is to sign the consent and then get us scheduled for the procedure. Thank you to everyone who has kept me sane during this process, who has offered up support, prayers and love to us. We truly appreciate it.

♥︎ Just Parents