Well, I'm going to try and get back into blogging again. I need an outlet. To say that life has been stressful the past few months is the understatement of the year. I don't have time to go to a Counselor, though I'm a huge fan of counseling. So therefore, I'm going to try and at least put some of the thoughts in my head onto "paper" and perhaps that will help ease my stress level a bit. We'll see how this goes.
In November Tanner was diagnosed with Cyclic Vomiting Syndrome. What does this mean? This means that she vomits for no reason for a week or so on end. It means life stops at our house for five to seven days a week. It means that we usually end up in (at least) the ER and/or the hospital for an overnight stay. It means she misses school for three to five days. It means her social life comes to a halt. It means our lives are forever changed.
CVS is described as an "abdominal migraine." Lots of different things can cause it. Excitement (good excitement, like the holidays), stress, getting overheated or overly tired, hormones, headaches and so on. It typically starts in the younger years of life but for some reason Tanner's started when she was 16. She's had migraines (that land her in bed for a day or two each month) ever since she started her periods, but that was it. My Mom and I have the same thing and I just assumed Tanner's was the same way.
Boy were we wrong!!
There is no cure for CVS. The key is to find what triggers it and "treat" it. We thought hormones were a trigger, so we went to the girly Dr. and she was put on birth control pills. That didn't work. We think her migraines were a trigger. So we went to the Neurologist (an adult Neuro) who prescribed a preventative headache medicine that she takes the week before her period. That didn't work. Our Dr. at Arkansas Children's Hospital in Little Rock put her on two mineral supplements thinking that perhaps would work. It didn't. Our ACH Dr. also put her on Periactin, which is an allergy medicine that has GI side effects. That didn't work.
This last round of CVS landed us inpatient at ACH for four days. It sucked being away from the family but at the same time, it was nice to be down there for them to see how she is and for them to be able to treat her. She was put on fluids and a continuous drip was given to her of both saline and potassium. They also took her Maxalt for headaches away and replaced it with a dose of Imitrex through the nose. Tanner said it was the nastiest thing ever, but it really worked-quickly- and kept the headache away so it was worth it. Another thing we did different was add liquid Benedryl. Again, it has GI side effects and seems to have helped. They also doubled her Periactin dose. Ever since doing that, she has not complained of a headache once.
We went to a Pediatric Neuro up here in Lowell the day after we were released from the hospital. He did an EEG and determined that it wasn't seizures causing the vomiting. We go back to him in July for a follow up and talk about preventative medicine, although I don't think she needs it since the Periactin seems to work.
While at ACH they also did a metabolic workup, via blood work. Those tests take awhile to get back because the Geneticist has to read it. As of Friday, those results are still not in.
Right now, Tanner's cycles seem to happen every four weeks. To the day. It's good and bad. Good to know so we know how to plan....bad because the week we know it's supposed to happen--we all walk on eggshells. When the cycle starts (which is usually without warning), the best thing to do is get lots of anti nausea meds in her, along with pain meds, then she lays down in a dark, quiet room...which is where she remains until the cycle passes.
I hate not being able to help Tanner get through these phases. I hate seeing her lay there and suffer. I hate that it's not me instead of her. I hate that it has "taken over her life" as she says. I hate the thought of her having to deal with this the rest of her life. I hate everything about it.
Perhaps putting some of my thoughts into writing will help me process things better. Tanner has started a blog herself about CVS and how it's effecting her life. Why shouldn't I?
1 comment:
blog it baby!
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