Keeping an Eye on Autism

Yesterday Camryn had an appointment with a new neurologist. An appointment that has been a pain in the behind to shedule with all the hoops insurance had us jumping through just to get permission to go. We have been to three other neurologists in the past, two that I loved and one not so much. Our most recent one, Dr. Morales in Fort Myers was a wonderful woman who expressed true care and concern for not only Camryn but for me and Brad as well. I never felt rushed in her office, she always took the time to let me talk and when I would break down in tears, which I often did, she would take my hand and tell me she understood. I really liked her. But even living in Port Charlotte, going to Fort Myers was a drive, sometimes taking an hour to get there. So now that we are in St. Petersburg, there was no way I was going to drive over two hours to see a neurologist when we have so many credible ones to pick from in the area. I wanted to go to All Childrens but our lovely insurance didn't agree. I ended up with a pediatric neurology and seizure disorder clinic in Tampa who oddly enough turned out to be the office Camryn's first neurologist referred his patients to when he moved out of state! I really liked him as well and was glad to hear that he was affiliated with this office. Brad and I have been eagerly awaiting this appointment anxious to get someone elses opinion and experience into the mix. With Brad's work schedule I am ususally the one to take the kids to their doctor appointments, as most moms do. Brad has managed to make it to a few of Camryn's neurology visits, but I am always her "Speaker of the House", spouting out her birthweight, APGAR score, and date of her first step without a moments hesitation. And like most Dad's out there, Brad mostly listens, asks a few questions and prays to God the doctor won't ask him if Camryn's birthday is the 21st or 22nd ,although this year I think he finally got it. So Wednesday night I was all pumped up to go and see if this doctor had anything new to say or had any ideas on how to stop the aggressive behavior. I ran through Cams eight year history of doctors, therapies, medications,etc in my head ready to answer whatever questions they threw at me. Then Thursday morning I woke up to a very red and extremely painful left eye. It had been hurting the ngiht before but I wear contacts and it is not uncommon for my eyes to get irritated from them. I usually just take them out overnight and by the next morning my eye is better. But my eye was worse, much worse, in fact it hurt to keep it open, but it also hurt to keep it shut. It was swollen and bloodshot and dripping like a faucet. I could not believe it. Not on Camryn's appointment day! Luckily Brad had taken the day off, so he and I were going to go the appointment together. My plan was to take Mason and Nat to school and then Brad and I would take Cam to the doctor, but halfway to Sawgrass Elementary my eye was in so much pain I thought for sure  somebody had fashioned  a voodoo doll in my resemblance and was sticking a pushpin deep in my retina. I managed to drop both girls off but by the time I got home I knew I had to get to an eye doctor ASAP. Brad and Cam were ready to go when I walked through the door. I looked at Brad and said "I can't go. You're gonna have to do it alone." Brad is a very good Dad and he puts our girls on a pedastal so of course he had no problem taking Camryn by himself. He did have a concern about how he would answer all the questions I normally address and I told him no worries I would text all the info. to him. He and Cams headed out and I got on the phone pronto with an opthamoligst. The office manager told me to come in right away and they would work me in. I got in the car hoping that there would be little traffic and even less sun as my eyes are extrememly sensitive to light and because I rarely wear my glasses I dont' have any prescription sunglasses. Squinting made me want to rip my eyeball out of it's socket it hurt so bad, but despite my numerous prayers for clouds, the sun shone brightly in my face as I drove to the eye doctor cursing like a sailor and really hoping the doctor would give me some drugs.
While I was in the waiting room I began texting Brad Camryn's entire medical history while my eye burned like hell and was soaking my cheek with it's constant tearing. I made sure to include her birthweight, length, list of doctors, dosages of medicines, surgeries she had when she was a toddler, etc. Anything I could think of that may be on the paperwork. I'm texting like a madwoman and my eye is throbbing and tearing and I stopped for a moment to recognize the humor of the situation. I then got a text back from Brad that read.... "Cams bday is jan21 2002?sorry" I laughed out loud in the waiting room! It was 2003, but at least he got the day right! I then got a text that read "Her name is Ry-Ry". Again I laughed out loud. I knew this meant that someone had asked Camryn her name and she answered "Ry-Ry" The girl cracks me up!
The nurse called me back and I had to put my phone away. I hoped he had everything he needed and I really wished I could have been there. I hated not being able to talk to the doctor myself. The opthamologist came in and examined me and turns out there was no voodoo doll, although it might have been less painful, but an ulcer on my eyeball! Isn't that fun? Actually, an ulcer on your eye is extremely serious, as you can lose your sight to one, so I was very alarmed and also very glad I came in. The doctor gave me a very small, very expensive bottle of eyedrops and instructed me to put them in every hour, even at night. Every hour at night?? Oh this was not going to be good! I was then to come back in the morning for him to check the progress. I asked if there was anything I could take for the pain to which he replied "No". Uggghh, I was so hoping for drugs!
I left the office and called Brad. They had been at the neurologists since 9:45 and it was now 11:00 so I assumed they were finished. Nope, still there! Brad asked if I wanted to talk to the doctor, but I felt like that would be undermining him and questioning his ability to handle this on his own so I said no and for him to call me when they left. Meanwhile I was at home with my ulcerated eyeball contemplating just gouging it out stop the pain. I rationalized that would only cause more pain and laid down on the couch in agony.
Twenty minutes later Brad called with the report. First things first the neurologist put Camryn on a new medication for her aggression. I had mixed feelings about it because on the one hand I hate putting her on a drug when she cannot tell me how she is feeling. And knowing that Abilify, which is the medication she will be on, can cause dizziness, nausea, suicidal thoughts, etc I feel absolutely horrible putting that in her system. But on the other hand, I know that nothing else is working to curb her aggressive tendencies. I know that her sisters are continuing to get assaulted on a daily basis as well as her classmates and that she injures herself, banging her head against the wall and biting her hands and feet. That makes me feel horrible as well and when I weigh the pros and cons of it all, the medicine comes out on top, so we will try it. The doctor she saw was not only a pediatric neurologist but also specialized in seizure disorders. Many Autistic children suffer from seizures and several have died as a result. It has been theorized that John Travolta's son may have had a seizure which made him fall and hit his head, ultimatley killing him. And although it had always been kept hush- hush, the Travolta family finally admitted that Jett was in fact autistic. There have also been stories of Autistic children passing in their sleep from a seizure and in some instances the parents were not even aware their child was having them. It has always been a question for Brad and I if Camryn was having seizures. She often stares out in space for about a minute or two which can be what is referred to as a "staring seizure". Her prior neurologist wanted to look into it more and had ordered tests but insurance wouldn't pay because she was no longer in network. This new doctor told Brad that she would like to do an overnight study of Camryn's brainwaves while she is sleeping and that she would need to hospitalize Cam for at least one night, possibly two and have her put under anesthesia to do an EEG as well as some other tests. I was horrifed and ecstatic at the same time. Scared of course at the thought that Camryn could be having seizures. Worried about her going uder any kind of anesthesia and thrilled that this doctor was not just scribbling out another script for meds and pushing us out the door. They were going to do further testing with her and that is what we have always wanted. I asked how she did with the exam and he said she did well. When the doctor asked Brad if Camryn was currently on any medications Camryn shouted out " I need my Risperidone!! I need my Clonidine!!" Nothing like your kid yelling out they need their anti-psychotic! He then said the doctor asked Cam how old she was and Cam's answered "Poo-Poooooshz". This is something she says ALL THE TIME at home. She will say "Poo-Pooooshz, I shaid a Poo-Poooooshz". I don't know where this came from but it is hilarious, which is one thing about Camryn, she will keep you laughing even as she brings you to tears. So that was it, a new medicine and a brain wave study. It was a success and I worried all for nothing. Brad did it! He answered all their questions, he pursued further testing, although he did confess that when the nurse would ask a question he would say "Oh I have that on my blackberry",then try to find my text with the info.When the nurse asked if Camryn had any surgeries, he scanned the texts but wasn't sure how to pronounce "frontillectomy" (having her tongue clipped underneath) so the nurse grabbed his phone and took the information herself! LOL
So last night we gave Cams her first Abilify. I hated giving it to her at night because I would rather she be awake so I could monitor her better, but the doctor said nightime was best. I was on the phone with my mom before I gave it to her and I was telling my mom my concerns about giving at bedtime and my mom pointed out there coudn't have been a better night to start since I would be up every hour anyway with my eyeball! She had a good point. I gave Cam her pill and today she woke up just as she had the morning before. It takes a while for these meds to take effect and she didn't seem woozy or out of it. She took another before school, so I sent a note to her teacher to keep an eye on her.
I went back to the doctor today and was told my eye was looking alot better but I wasn't out of the woods yet, whatever that means. I now have to do the drops every two hours instead of one and I don't have to get up at night to do them, thank God!!! I go back on Wednesday to see how it's healing. So I am on the mend and hopefully so is Cams. Not that she is broken, but wow would I love to see her aggression leave town. I know it won't take away all of it, but any little bit would help. So we will wait and see as we always do. No matter what we will continue to love our daughter and cherish the things that make her her. It is hard to believe she will be turning 8 next week.Time goes by so fast! Seems like just yesterday our little "Ry-Ry" turned "Pooooo-pooooshz". I love that girl!!!!!