Well, our trip to LA to see the specialist at Children’ Hospital finally happened! It seems like it took forever to get here, but it was so worth the wait.
Because we couldn’t have the trip be all about the hospital, we managed to get in a few fun things to. We took Natalie to the American Girl Store (her first time ever) and I am pretty sure angels were singing when we walked in the door. I am not sure who was more excited - Mike or Natalie. Needless to say, it was a good time.
We also visited the happiest place on earth. Natalie has always loved Disneyland, rides, and anything fun! Because of her struggles with nausea and fatigue this year, she did not want to go this time. She was nervous about rides, way opposed to riding on any kind of shuttle, and just anxious about the whole experience. We had to convince her to go which is just kind of crazy to me. The doctor we went to see had already started a part of the treatment which we knew was working so we were pretty confident that she wouldn’t have an issue, but she was still apprehensive and understandably so. The day started out super shaky and we had to work hard to get her to go on her first ride. After that, her engine started to rev up and pretty soon she was good to go. We even made up a song to go with our rides that day, “I throw my hands up in the air each time, I don’t give into fear, I want to celebrate and live my life, my nausea won’t win” to the tune of good ol’ Dynamite by Taio Cruz. We couldn’t go on everything - had to avoid spinning rides and anything super loud (as her ears are still really sensitive) but we had a blast and even ended up getting her on CA Screamin’! This was a huge victory for her that took place at the very end of the day. Mike and I figured if it didn’t go well, it was okay because a full afternoon of fun had already been had. She was nervous, but did not give in to her fear. And....she LOVED it! We even went a second time. She announced loud and proud that if she could ride on CA Screamin’, she could do anything:). I am pretty sure I squirted tears at the sound of that.
On to the appointment... It was FANTASTIC! It was so nice to be somewhere where the doctors weren’t perplexed, skeptical, or condescending. It is hard for people to understand her condition and, at times, we have felt people (including doctors) thought we were being dramatic or overstating things. We have also had some who insinuated that Natalie was manipulating us, or that it was all an issue related to anxiety which we knew was not the case. We know our kid and have watched this all unfold since last Thanksgiving. It has been very hard to have to defend her as we sought care.
That said, it was great to have the doctor, social worker, and genetic counselor understand what this experience is like and confirm all that we have seen and expressed to doctors. The doctor validated all that we have been experiencing and have observed with Natalie and confirmed her diagnosis of Cyclic Vomiting Syndrome from a genetic, diagnostic, and physical examination perspective. He said that it is something she has always had and her blood sugar issues and other previous odd illnesses/reactions to things were all symptoms of the larger root cause. Cyclic Vomiting Syndrome is related to a dysfunction in the mitochondria within the cells and is an inborn thing. He said that various things can trigger it and that the serious strep infection she had in November did just that. And then..it became much worse.
Because it is genetic, she will have issues for the rest of her life and he said that her puberty years will be challenging because of the huge toll they take on your body from an energy perspective. Once she turns 16 or 17, things will level out and then we wait and see if things stay the same or transition into typical migraines or some other variation of the illness.
The good news is that the treatment plan is super doable and primarily involves taking COQ10 (an enzyme that her body is deficient in), significant vitamin doses,specific diet content/frequency, good sleep, and one other possible medication depending on the results of some labs. With this, she should be able to be pretty much her old self most of the time. We will need to be very responsive to any fevers or illness, and we still have an ER trek in the event she starts vomiting so she needs to stay healthy!
Natalie is mostly excited that the doctor (and social worker) understood her body and what she goes through inside, had a plan, and said she could play soccer again (with some restrictions:).
Thanks to those of you who have stood by us on this journey, who love my kid(s), and who have been praying. The support has been amazing. We love you!
If you want to learn more about Cyclic Vomiting Syndrome...
General Info
http://www.cvsa.org.uk/fleisherguide.html
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