It has been too hectic here to write. Hours and hours researching and on the phone with doctors.
The EEG Iris went through was traumatic for all of us, only to learn that she doesn’t have a seizure disorder. Iris had at least one seizure from lack of oxygen during bad apnea attacks at night. And she shakes and jolts constantly (every 3-12 seconds) when she sleeps. But that is called Sleep Myoclonus which is different then Myoclinic Seizures. It it just a symptom of how bad her sleep has gotten.
The neurologist is now very concerned and has ordered two tests immediately. One is another sleep test with the new sleep neurologist (last one was many months ago) but we can’t get her in until April 4th. 😦
The second is a genetic blood screening for Congenital Central Hypoventilation Syndrome. We hope she doesn’t have this but its a fairly good bet at this point. It just means a chromosome mutated and her brain will always stop telling her lungs to breathe a bunch of times at night. Her case would be mild but most cases the children-adults live with a trach opening and are on a ventilator at night. Fortunately I found two alternatives which are a diaphragmatic pacemaker they use at children’s hosp. LA and the other is that possibly a BiPap (like CPap mask for adult apnea) could work if it is mild enough.
That brings us to the strange bi-pap issue. This whole time Karolyn and I have begged the doctors to give us a Pap system to try with Iris in case it helped. They wouldn’t because they said they couldn’t find one in Iris’s size. This made no sense to me as most tiny preemies in the NICU have to use the CPap- they have masks that size. So I called the manufacturers who would not talk to me because I wasn’t a doctor. But the other day I went online and found that with a perscription I could order both the machine and a mask that fits Iris. WTF. So now I have to beg for a perscription.
It wasn’t until Iris had the first big seizure and now the constant shaking that it finally hit me: MY KID STOPS BREATHING IN HER SLEEP. That is the definition of central apnea but I never got it like that before. So now I can’t stop having panic attacks (which is very unusual for me). My heart races for hours and I try like made to figure more things out, make more phone calls and do more research until I can’t really breathe myself and after enough hours of trying to catch my breath, my hands go numb.
I asked the neurologist if Iris could possibly die in her sleep.
“Probably not. Since she has not died yet and she’s had this apnea her whole life.” But since things are worse now, I am a very worried mama.
I don’t care about the perfect diagnosis or answer or treatment anymore. I am asking for a miracle.
My inclination is to take Iris to the beach and have her sleep near the ocean. Fortunately we are going to Mexico shortly and maybe I will take her to LA for a while before that. At least for me, it will be easier to breath with the waves. In…Out…In…Out…