8: Exposure Therapy: Week 1 continued...

  

    It's Tuesday, November 13th and we head back to the clinic to drop her off. Same routine. We leave her there and come back towards the end. When we return, we learn that they have started to do some detective work.
    My husband and I meet with Dr. G alone and we learn that we are no longer to be answering our daughter's questions and reassuring her that she won’t get sick. She has a new skill she needs to practice called "detective thinking." Basically, when a thought enters her mind she needs to write it down and then write down any evidence both for and against the thought. For example, the thought maybe "I will not go into a public bathroom because I might get sick." Evidence for: "someone could get sick from germs in a public bathroom." Evidence against: "many people do not get sick from public bathrooms and I have never gotten sick from a public bathroom." They practiced this with many different thoughts and I learn that she is the one who needs to think through each thought and really use her own brain - not mine. Taking control over her own thoughts and actions is an important step. 
    She is also told how no one can guarantee that she will not throw up again. And in fact, it is almost a guarantee that she will. She understands we would be lying to her if we made that guarantee. We leave the clinic and she is pretty mad. She starts to ask us certain questions and we reply with "it's time to use your detective thinking." She begins to tell us how she doesn't like this anymore and she does not want to go back. She begins to get angry with us when we do not ease her fears about her usual daily anxiety questions. Am I going to get sick from dinner? Where did you buy the food? Is the food expired? Did you wash your hands? Was anyone sick at her little brother's school? There were all of the usual daily questions. And no more of us solving them.
    The next days it is harder to get her to the clinic. She is mad and resistant, but goes. Dr. G begins taking her to the bathrooms in the building and performing different tasks starting with simply walking in and building up to touching things. she writes down the tasks and learns to rate her anxiety and write down her thoughts and physiological feelings. 
    We meet at the end of the day and Dr. G explains her homework of working on some tasks and writing about them. Then Dr. G takes a sip of her water and starts to cough as if the water goes down the wrong side, she is holding one of those fun pens that click to change colors. I don't realize her plan until after the fact. She says to my daughter, who didn't really catch that she coughed all over the pen, "and here is a fun pen to do your homework with!" Dr. G then, ever so perfectly, slides the pen across the table to her so she has to catch it to avoid it falling to the floor. As she catches it and puts it into her bag, Dr. G makes sure she knows she coughed on the pen. And I can see the fear in her eyes. She starts to ask Dr. G if she is sick. And her reply of course is "I guess you'll have to use your detective thinking..."

    Thankfully we live only 5 minutes from the clinic since it was not a fun ride home. She is now starting to talk about another serious fear that she has of harming herself. In the beginning of the school year, there was a seminar about bullying in which they talked about, and showed illustrated photos of, kids that had killed themselves. She was haunted by these images for a long time. So much that I had to call the school and ask them to find somewhere else for her to be during these seminars. When she was having really bad moments for the past couple of months, she would say things like "I am afraid I would do something like that, even though I know I wouldn't." Dr. T said it was the anxiety talking, but to keep an eye out. 
     What started to worry me now was that she started digging her nails into her skin and biting herself when she was feeling out of control. She was starting to say she couldn't stop thinking about the kids that had killed themselves. She was also starting to wash her hands more and more. They were cracked and bleeding. Dr. G said that things may get worse before they get better, but this was really hard to watch and know how to deal with.

    She was saying she wanted to keep her phobia. She loved it and was not going to let this lady take it away. As I thought about that insane statement, I asked her if she loved the phobia because it was keeping her safe from getting sick. Makes sense I guess. It makes her wash her hands, it keeps her from dangerous places like school and has her on the lookout 24/7. It is her control and she is not going to let it go without a fight. And now it seems as though battling is the only thing going on between us. Battling over the soap and the showers and the food and everything.
    That night we were supposed to do some homework. When she refused, I took "the pen" and papers from her bag and we did it together with me writing everything. I had promised her a back message after we did the homework. Once she realized I used "the pen" she wouldn't let me touch her. She was so mad at me because I would not wash my hands. And so mad because she really wanted that back massage but could not control the situation the way she wanted.
    I believe it was the next day that we had a break since Dr. G was away for the day. I had a blood test set up for her that was ordered by the psychiatrist. This was going to be a great homework task. A doctor’s office with sick people and having blood taken. A bigger task than I even imagined.

7: Intense Daily Therapy Begins: Day 1

  

Monday, November 12th has arrived. My husband and I have a meeting with Dr. G first and she tells us what she will be doing with her for the next few hours. She also explains that we will all meet again for the last 45 minutes so that our daughter can teach us everything she learns. This will be helpful for us, and for her, and for Dr. G so she knows that she is grasping things.
    We arrive back for our meeting and learn a lot from our daughter about the specific physiological responses of the body when it is anxious and in fight or flight mode. This helps her to understand why her head hurts, hands sweat, stomach hurts, hands go numb, heart races and all of the other things that happen when she is anxious. She is taught how to scan her body and really sit with and feel her physiological responses instead of being scared of them. They also work on understanding an anxiety scale and how to rate the anxiety in specific situations. On paper, it looks like a thermometer. 0, no anxiety, and 8 being the highest level of anxiety.
    We are so impressed with how much she has learned and the way in which she is able to teach us. She had learned some of this in the past with Dr. T, but not in such an intense and school like manner. They had papers all over the table they had been working on. Towards the end, Dr. G starts to talk to her about the next steps they will be taking. Not specifics, but just generally about how people have to face their fears when they are scared of something. She tells her that tomorrow they are going to be detectives. I can see her starting to get a bit nervous. I start sweating, too. I know the next steps and I am afraid I will be having to physically place my child in the car to get her here when things start getting more intense.
    We have a nice talk in the car on the way home and we tell her how proud of her we are. We talk about how Dr. G is so young and cute and likeable and how she wants to be psychologist just like her someday. Little did she know that she was not going to have such kind words about the Dr. in a few days...

6: Our Last Hope for Help

The day finally arrives for our 4 hour evaluation at the UM clinic. I feel a small sense of relief that things are now starting to be put into place. The clinicians spend about 2 hours with our daughter and another 2 hours with my husband and me. Basically just trying to narrow down the problem and come up with a more specific diagnosis. For a while it was a mishmash of generalized anxiety disorder, separation anxiety, a specific phobia and now OCD with all of this hand washing business. The appointment ends and we leave there exhausted from all of their questions. I have an appointment for the following week to hear their feedback and hopefully a treatment plan.

    In the meantime, we are struggling with school and her daily ailments. One day she had convinced herself she had salmonella poisoning because we had chicken for dinner the night before. Ugh, another missed day of school. I am now getting automated emails every day from the school about missing classes and grades.
    Our appointment with the psychiatrist arrives and she is so wonderful. She sees that I am terrified of medication and she explains that she is very conservative. After talking with my daughter and myself, she absolutely sees the need for some medication. She explains that they take about 3-6 weeks to show any effects. 
     She hands me the prescription and my eyes well up with tears. It is half of the usual pediatric dosage so I am a bit at ease. We then go see Dr. T the same day so she can work with her on actually taking the medicine. That is a huge problem I forgot to mention earlier. She will not take medicine of any kind. She is afraid she will gag and throw up. A recent visit to the ER for an asthma episode turned into a nightmare when they had to give her injections because she refused the medicine. One doctor and three nurses had her in a panic trying to get her to take medicine. They realized I spoke the truth when they finally gave up for fear of her having a serious panic attack and possibly harming them or herself. Crazy scene! Anyway, Dr. T gets her to be able to crush up a tiny pill and put it in some applesauce. It takes them a good half an hour, but Dr. T is able to accomplish the nearly impossible. I breathe a sigh of relief knowing that I will not have a battle at home when it is time for the meds.

    My feedback appointment at the clinic is a couple days later. I sit down with the doctor and she tells me that the diagnosis they agree upon is the Specific Phobia of Vomit. They will keep their eyes open for OCD and separation anxiety, but they believe that those are just symptoms of the phobia. It all sounds quite logical to me. I am so impressed with this doctor. She has a way of explaining things to me that is so clear and easy to understand. She then explains the treatment plan. Intense daily exposure therapy for about 4 hours each day. She will need to be out of school for two weeks straight. My head is spinning because I am wondering how on earth she will catch up on all of this missed school. I am also thinking about our trip to MA the following week to spend Thanksgiving with my family. How is this all going to work?!
    Then, because my head was not spinning enough, she tells me the price. I didn't even have any words and I just start to cry. My life is so upside down right now. We Moved to Miami to save money! My husband is struggling to make his new real estate career become profitable. We are spending money on private school for our daughter that is not in our budget because our local public school is not a safe place and out of the question. I have a weekly psychologist fee and now a psychiatrist fee as well as medication to pay for. I have a 14 yr. old chocolate lab at home who is waiting for me to take him to the vet to fix an eye infection we have been ignoring. And now this! Way more $$ than I was expecting. At least the sale of my ballet school is paying our rent for a while. 
    The doctor gives me a few moments to call my husband and talk it over with him. Of course we both realize that our life cannot go on as is and we will have to accept this therapy option. I sign the papers and feel a knot in my stomach. It is so hard not to look at our daughter as this child that is making our daily lives miserable and our finances dwindle. It is a terrible feeling to have a hard time loving the very thing you should be loving the most.

    We end the meeting with the fact that we have to look at our schedules and come up with a start date. I need to think long and hard about this because I am supposed to be on a plane with the kids in a week and a half. This would mean that we cannot start therapy until 2 or 3 weeks from now. I honestly think we will not make it another 2 weeks without some serious help. She is losing weight daily and it's getting medically dangerous. So I get on the phone and start begging the airline to allow me to change my ticket and not have to pay any fees. I cannot afford anymore fees! They are so kind as I tell them our story. They waive all fees and give me travel vouchers for the full amount I paid. Thank you American Airlines!

    I call my family back in MA. My sister had a feeling this was what would happen and she was very supportive. My Mom was amazing, too. She was scared for her granddaughter’s health and cried with me on the phone. I can imagine it must be hard to hear all this from far away and not being able to see the daily struggles we have and how we are dealing with things. 
     I think no one in my family really understood how serious this all was until now. I call the doctor back and let her know that I have cleared our schedule for the next two weeks and we are ready to start on Monday, November 12th.

5: Middle School Begins

  

Middle School Starts in August of 2012. She is at a brand new school. A big change from her tiny little Waldorf style school from the past 2 years where there was no homework, tests, grades or academic pressure. She is jumping right into the real world now. She is excited to be in this new beautiful school. She loves the students and the teachers and finally getting some homework. The loving of homework only lasted the 1st week mind you... 
    As I try to remember back to this time when the emetophobia got really bad, I can't pinpoint what set it off. But, I am starting to understand that this anxiety is all because of a lack of control that she feels. Maybe it's a buildup of needing to control her life somehow. She no longer has my husband and I all to herself since our son was born, we move her from the only home she ever knew in MA, new school, lots of homework, people telling her what to do all day long, etc... I do remember the first week of school there was a boy that threw up at school and she was really scared when she got home. Then she started thinking about the amount of kids in school and the amount of germs there must be. Not to mention that in middle school, someone is always complaining of a headache or a stomach ache. 

     She started washing her hands a lot. A LOT! She started thinking she was sick every day or was going to get sick from whoever was near her at school. So her brain, whether consciously or not, came up with a plan to be able to control her from getting sick. Mind you I am not a psychologist, but I am just picking my own brain for answers and explanations. She decides school is a dangerous place. She needs to not eat there, try to stay away from her friends - especially if they are complaining of any ailments, bring hand sanitizer, stay out of any bathrooms and beg and plead my husband and I not to take her to school. She would have stomach aches in the morning because she would be so terrified. She would call me from school with a headache and try to get me to pick her up. She also stopped going to her ballet classes. She also stopped helping me with my ballet classes for fear of the little kids. This is really starting to make me even sadder. She had been helping me with my ballet classes for years. She used to love it! It was our thing together. 
     In addition to all of that she tried to stay away from her little brother who must be bringing home lots of preschool germs. She would ask us when we washed his hands and our hands and when I cleaned the kitchen counters and what did I use to clean them. She started to check expiration dates on everything. She was doing that for a while, but now the expiration date had to be far away in order for her to eat it. Going out for dinner was getting to be out of the question. 
     One night we went to one of our favorite places. We know the owner, it's clean, the food is great, we sit outside, and she gets up to go wash her hands. She cannot wash them because someone is in the bathroom and she can't get in. Instead of waiting, she comes back in a panic. She is crying and shaking and she wants to go home. There are too many people! Too many germs! She needs to get out! I look around and it is still early for dinner in Miami Beach. There is maybe one other couple at a nearby table. We are outside in the fresh air! I point all of this out to her and I get her to calm down. I tell her we are not going home and I can walk her to the bathroom so she can wash her hands. We wash and go back to the table. She then starts asking about how we know if the chef or the waiters are not sick. Ugh. I think that was the last time we went out for dinner...

    School was becoming an almost impossible chore. She was getting there maybe 2 or 3 days out of each week. She would tell me she did not feel well every morning. She would be in the bathroom for a while and convince me some days she needs to stay home because she feels sick. I explain to her that it is the anxiety starting to hurt her tummy for real. She makes me promise her every morning and every night that she won’t get sick. Ever! I knew it was an empty promise and it killed me to do so. But if I didn't do it, there was shear panic. Her hands were now cracked and red and bleeding from all of the washing. It was now two showers a day instead of her one ritual before bedtime shower. What the heck was happening! 
    We are now seeing Dr. T every week instead of every other. She explains that she needs medication. That she is now not able to put anything in practice that Dr. T is trying to help her with. She is angry and sad all the time and down to 58 lbs. Not even at the 0% on the growth chart! She was 65.5 at the start of school. She looks awful with gray circles under her eyes and not an ounce of fat on her. 

     I sit on Dr. T's couch and cry like a baby. Medication?! No. My husband has been pushing for it since she was born practically, and I want no part of it! There are horrible side effects. I know kids who have been on them. Of whom both ended up in hospitals because of suicidal thoughts. No! I am the "o natural" lady. Remember? I birthed my kids at home, did attachment parenting, and I have cabinets full of homeopathic medicine. No no no. I need a better plan.  
    To appease my husband and Dr. T's professional opinion, I start calling psychiatrists. A very frustrating task I quickly find out. I call the one she gives me the name of. After 2 days, and no call back, I try again sounding more desperate. Finally she calls me back and tells me she has no openings. She gives me 5 other names. I call them all. My husband is now is getting mad at me for not being able to produce an appointment. Not mad, maybe just frustrated with my stubbornness and not listening to him years ago. A few more days go by and one finally calls me back. She says she has an opening. She also says she takes no insurance, it's $300 per session and she needs about 4 or 5 sessions to come up with a diagnosis and a plan. And she is not willing to work together with Dr. T. Okay, now I feel like I am going to throw up!! 
    I start doing some more research on the computer and I run across something I had seen in the past. "Is your child feeling anxious or sad? Is it affecting their daily life?" Hell yes! So I get on the phone and I call The Child and Adolescent Mood and Anxiety Treatment Program at the University of Miami. I have a 30 minute phone interview with a very nice gentleman. I am desperate I tell him. He then tells me his boss is out of town until Monday and I will have to wait until early that next week to find out if my daughter is a good candidate for their program. The waiting game starts again. 

    Much to my surprise he calls me back 30 minutes later. He tells me he called his boss and she gave him the okay. Wow, I must have sounded desperate... The earliest appointment he has is two weeks away. I resign to the fact that this is going to be a long process and I accept that we have to hang in there. I relay my new plan to my husband and Dr. T. They tell me "that's great! But do you have an appointment with a psychiatrist in the meantime?" I tell her my dilemma with trying to find one and that I am done with that for now. I just want to wait to hear what the Univ. of Miami has to say first. 
    In the meantime, things are getting worse. My husband starts looking online for psychiatrists. He finds one that actually calls him back. They play phone tag until he has to leave the country for a quick trip. I take over and get an appointment with this 75 year old man who works two days per week. I make the appointment but think there must be someone better. 
     One more time, I hop onto the computer. I type in "child psychiatrists Miami." I see all the names I have already called and then one pops right out at me that I didn't see before and I give her a call. She called me back right away and tells me she has a cancellation and can see us the very next day. I cancel the old man and breathe a huge sigh of relief. Help may be just around the corner!