10: Website for Emetophobia

I promised this woman who has a website for emetophobia that I would put a link to her website on my blog. Dr. T and my daughter went to her website for photos many times in the past. 
If you need help with emetophobia, check it out: http://www.emetophobiahelp.org/

9: Blood Draw and Check Up

  

    It is Thursday, the 15th. She has an appointment with my doctor for some blood work and a checkup. The psychiatrist wants this done to make sure there is nothing else going on. It is the first time she has been to my doctor. This is because I cannot get her to the pediatrician very easily. A waiting room full of sick kids... So I book the first appointment of the day.
    As soon as we walk in she is following me like a puppy. I cannot even check her in or get my insurance card out easily because she is so close to me. I ask her to sit down a number of times and reluctantly she does. She has her sweater over her face so she won’t breathe in any germs in the air. I remind her that this is a good homework task and she needs to remove her sweater and breathe properly. She has been known to hold her breath when walking past people she thinks are sick.
    I see the doctor first so I can give her a quick history. The doctor now meets with both of us. She weighs her, checks her height, and does a quick physical. She also pays close attention to her hands that are red and cracked. She then takes us to the lab room. There is a nurse waiting for us and my daughter is starting to get really nervous. The doctor pulls up a chair in front of us because she knows she will need to help. She is amazing. She is also an ER doctor and is used to kids who are fearful. 
    She sits on my lap and starts to beg everyone to wait. She just needs to breathe she says. We all give her a minute. When she begs for longer we have to say no. I have my arms wrapped around her tightly and the doctor is holding out her arm for the nurse. She screams and struggles but luckily she is so meek that we are able to restrain her. She is seriously distraught and the doctor wants to do an ECG. They repeat it 2 or 3 times because the readings are crazy. The nurse stays with her while the doctor takes me into another room. She tells me that this needs to be solved ASAP. She gives me a copy of the ECG to take home. It says: abnormal ECG - enlarged left ventricle. I ask the doctor and she says it is from the stress. We agree it should eventually be checked out further, though.

    We get in the car and she needs to wash her hands and shower immediately. I tell her she has to eat breakfast and take her medicine and then she can shower. Waiting to wash hands and showering is a task we were working on for a couple of days. She is really mad now. Says she is afraid because she is thinking about the images of the kids that killed themselves from school again. 
    We get home and she sits at the dining room table. She tells me she is not eating until she can shower and that I will have to watch her starve to death. I tell her what I am supposed to "I know it must be hard." Then I ignore as instructed by Dr. G. She is yelling that she hates me and I am a horrible mother. I try to keep busy by putting away dishes and cleaning the kitchen. I also purposely do not wash my hands first. She notices and starts yelling at me to wash my hands. She says she is never eating off of those dishes again. I am trying to ignore, but it is so hard.     
    My back is to her and tears are streaming down my cheeks as she tells me how she hates me and how she will starve herself to death. I can't take it anymore and I lose my cool. I am shaking and crying and yelling at her that I cannot do this anymore. I threaten her by telling her how she will not be able to live in our home if she cannot follow the rules. I basically turn into some kind of crazy woman for a moment, and I shock the hell out of her - and myself. She then goes to the fridge and takes out the pasta that refused to eat last night, because there was sausage in it, and she warms it up herself and eats it. She then asks me for her medicine. I give it to her and then go to my room to put away days of piled up laundry. She very nicely asks if she can help. We exchange a much needed apology, from each of us. We do a homework paper about the task of going to the doctor and then she showers. I lay in my bed crying because I seriously think I cannot do this. I am not strong enough.
    Dr. G calls that afternoon to check on us. She is away at a conference until the next day. I tell her what happened, including my temper tantrum, and we agree that she will call us tomorrow and check in again. We make it through the night without any more battles. She refuses to do any more homework and I do not push.

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.