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!

4: Progress! An amazing Day!

    What an amazing day it was today! My last post left off at the end of the summer before middle school started. I was going to keep up with telling everything in order, but as I read it back to myself, it is getting a bit long and maybe boring for anyone who has not lived through this and I now need to shout out that today was incredible! I will get back to the start of middle school later and all that led up to today.

    After 3 weeks of intense, almost daily, exposure therapy at the Univ. of Miami I am finally seeing my girl get better! After the worst few weeks of our lives so far, we finally had a great day. 
     We went to the beach, went to 3 different places to eat,  didn't wash hands 5000 times. AND, the biggest event to finish off the day was when we even saw vomit on the sidewalk and she didn't freak out! Real life exposure therapy! I am so proud of her, and ourselves, for getting through these past few weeks.

3: Summer 2012

  

School is out for the summer and we reluctantly book a trip to the island. I am hesitant and prepared for 3 weeks of her anxieties away from the comforts of home.
    Dr. T works with her and helps to prepare her for the trip. We promise her we will not take the ferry from the mainland to the island. So we book our favorite pilot for a private plane and spend triple the money to get there. If I count all the money we have spent on psychology, psychiatry, an anxiety clinic and airplanes instead of boats we could have our own private island by now! Anyway, we get there and I am a bit surprised to see that she is excited to be there. She seems fairly calm and ready for the adventure. She is not ready to hop on our little boat yet but I can see her constantly looking at the ocean from our deck. I can see her trying to calculate in her head how much the boat will rock if the seas look a bit wavy. Fabrizio goes fishing on the boat and we watch him with our binoculars. We have fun visiting our friends and she gets put to work babysitting our friend's children. She loves it! First time she ever gets paid for it. While she babysits, my husband and I get to go out on the boat together and have some fun.
     The next day we find out that one of the kids she babysat is throwing up. Then his brother. Then another friend. No!!!! This is the last thing I need her to find out. Our friends know about her phobia and we are all messaging each other on facebook to keep it a secret. Part of me is thinking maybe she needs to get this stomach virus that is going around. Maybe throwing up again would be the cure. That is what our psychologist had mentioned in the past. But I cannot think like that yet. Not when here. Not when I have no Dr. T in case things go really wrong. So we stay away from our friends for a few days and remain thankful that none of us got sick.
     She is still doing really well. We are actually able to get her on the boat. We start by staying in the harbor. Then we take a longer trip. She is doing it! She is quiet and pensive, but she is calm. I take a photo of her sitting on the bow and I am happy. I am happy that she is happy. I am happy that I am on the boat able to relax and enjoy myself and my family instead of having to distract and console and comfort her. As soon as we get back to the house I am so happy that I instantly send the photo in an email to Dr. T. I thank her for her work and let her know how happy I am that I have my child back!
     We have a great few weeks and return home to enjoy the rest of summer and get ready for the start of middle school. Little did I know that middle school and all the added pressures of more homework, a new school, new friends, etc, would bring it all on again. Well, I was warned by Dr. T that it could be hard at first, but I had no idea how bad it could get...

2: Food Poisoning/Therapy Begins

  

    My husband was away and I was tired of cooking. I thought the kids and I would go out to eat. Not our usual type of destination for food, but Denny's was close by our new house. I have many fond memories from my childhood of going to our local Denny's for breakfast after church on Sundays. Although my Denny's, in our small quiet town in Massachusetts, is not quite the same Denny's as here in the huge city of Miami. The same menu, just different atmosphere. Anyway, we had fun. Stuffed ourselves with the kinds of food we don't usually get in restaurants. Burgers, chicken fingers and hash browns and fluorescent colored mac and cheese I have ever seen. It was a far cry from our usual meal choices of Spaghetti alle Vongole or sushi or some other more refined restaurant specials. We came home happy and full and went to bed.

    In the middle of the night I am awoken by my daughter who is terrified because she just threw up on the floor. First time throwing up since she was a baby and we tried to let her "cry it out" until she would throw up all over her crib. Nice parents huh? We only tried that a few times. Doctors’ orders... Anyway, I run her into the bathroom and she doesn't even understand that she is supposed to throw up in the toilet. I have to teach her where to throw up! It's a frantic scene because I am trying to get her to the toilet. I don't want to clean throw up off of the carpet in our new rental home. She is so distraught she cannot even think straight. She throws up a few more times, I go clean, and then we cuddle in my bed together and fall asleep.

    I cannot even remember now if it was the very next night that the panic attacks started or if things just got progressively worse for the next few months. It got to the point that she was TERRIFIED to go to sleep for fear of it happening again. We would try to help her rationalize and see how illogical she was being. That just because it happened once, it doesn't mean it will happen again tonight. She knew the logic, she would say so, but she just could not convince some part of her brain that was in panic mode. She was unable to get to bed before midnight most nights and she stopped eating meat. Mainly, she seemed to just be having trouble only at night.

    My sister came to visit us a couple of months later. We set her up in our daughter's room so they could sleep together. This was when I realized it was more trouble than I thought. She had a whole set of rituals that she was doing in her room every night. Things like counting the fingers and toes on all of her Barbies and opening books to certain pages. She tried to hide them from my sister, but she noticed and promptly let me know. I was on the phone to find a psychologist the very next day. Luckily we found a wonderful woman. I will call her Dr. T. She was kind and understanding and got us right into see her.

Therapy Begins

   

Cognitive behavioral therapy began as well as some training for my husband and I on how to deal with the situation at home. It was very hard, and still is, to not lose our tempers. She would come out of her room in a panic at least 5 times at night needing hugs and reassurance and we could not always keep from getting angry. So therapy was good for us, too.
    Very slowly she was learning to use different techniques other than rituals to fall asleep. She is a beautiful writer so I bought her a journal so she could write before bed. Although that quickly turned into a ritual I later discovered. I looked in that journal one day and there were weeks’ worth of pages where she wrote and drew EXACTLY the same things on every page. 5 hearts, 10 stars, etc. Ugh. 
   She was however, slowly starting to eat meat again. She could begin to tolerate when we would say words like vomit, barf, throw up, etc. The idea is to expose her to the fear and get her used to hearing the words. This eventually led into some exposure therapy with Dr. T. They would look at websites and photos of vomit. Starting with cartoon images and working their way to harder images.
    Things were getting more manageable. Although taking vacations to our usual island destination became very unpleasant. She did not want to go anywhere. She was afraid of school if someone was sick. She just wanted to stay in the house and feel safe. Our child, who grew up loving boats, snorkeling and fishing with daddy was now terrified. Why? Well, because some people get sea sick of course. Our fun and livelihood on this tiny island where half the place is boat access only, was no longer fun for me. We had been going there since she was 4. We consider it our home away from home. We were going to live there someday! 
    This was particularly hard for my husband to swallow. This island is his dream. His peace and solace from the regular hustle and bustle of life. My dream too, but on the back shelf for now... Because taking her anywhere from her safety of home in Miami is one big tiring and mentally exhausting chore for me. So when vacation opportunities would arise, I would let my husband spend his time on the island and I would stay here with the kids. I was fine with that. I am Mom, I am strong, I can hold down the fort. I also was going to feel terribly guilty that I was letting her ruin his fun in addition to mine if we all went. So stay home we did. For about a year...