July 9, 2018
It's been a while since I have posted anything here. I stopped when my book came out a few years ago. I thank you all who have reached out and to all who have shared their own stories.
There is more to our story. Another short book in itself...
We have found out that sometimes this phobia can creep back in and it seems more like a lifelong battle. It's not like curing a fear of heights or spiders or flying or really anything else. People with most fears can avoid them. One can take the stairs instead of an elevator or drive instead of fly. For an emetophobic, they can't escape themselves. Every bodily sensation provokes fear or at least an alert. The
anxiety jumps to anything that might lead to vomiting. A headache, a stomach ache, or even a stomach noise turns into fear. The horrible irony is that anxiety causes
stomach distress which in turn evokes more anxiety. The belief that these sensations (or the actual act of throwing up) are a serious threat is what leads to the
tipping point. This is a phobia. This is emetophobia.
Unfortunately, my daughter, who is now 17, has had a couple relapses. Nothing has compared to when she was 11 and 12 years old, but she has been struggling again for about a year or so. Her phobia was pretty much non existent for a year and half after she finished exposure therapy until she threw up about 4 years ago. Thankfully, with all of the therapy she had previously been through, she didn't revert back to what we went through after the initial food poisoning that spiraled her life out of control.
She never figured out why she threw up the last time. Maybe it was something she ate or maybe she had a virus. For my daughter, this was important so she would be able to avoid whatever made her sick and be able to have that false sense of control that she could do something to avoid throwing up again. When she threw up, we all looked at each other in shock and she actually laughed. She had a sudden realization that it wasn't that bad. All that worrying in previous years for this? My fist thoughts were of total amazement at the fact that she wasn't freaking out. For years, we all had this built up anticipation of what would happen when she throws up again and here it was finally happening! Sadly, she threw up all night and her initial feelings of it not being so bad were taken over by misery and fear.
After about 6 months of trying to handle her fears ourselves, I reached out to the director of the program at UM that helped us before. Dr. J agreed we should see her for a bit to help things get back under control. My daughter was finishing 9th grade at the time and was back into her fear habits of checking expiration dates and not wanting to go out to eat. She was also begging me to let her become vegan. She has always been very passionate about animals, but I also know that she believes being vegan would help cut out a whole lot of food safety issues. I told her that once she could prove that she can get things under control with Dr. J then I will consider letting her become vegan.
On the way to Dr. J's office each week, I would have to go pick up some take out food from random restaurants that my daughter has never, and would never choose to eat from. They would work on exposures around the food such as sharing utensils and even eating off the desk or eating something that fell (purposely) onto the floor. Simply eating food that was from a restaurant she didn't know or trust was a feat in itself.
After having sessions in Dr. J's office for a couple of months, we moved on to meeting Dr. J at other places. We met at Target once where the two of them went shopping for expired or close to expired foods and and then they worked on eating them at the dining section of Target. We also had a few sessions at our house to help her work on eating at home. She doesn't like to eat things that I cook, and especially that my husband cook, since she doesn't trust how we wash our hands or prepare things. She is constantly reading up on food safety and is always on alert.
We stopped seeing Dr. J after a few months since her schedule was getting busy and things were going much better. My daughter was also about to go away for a few weeks to a ballet summer intensive. Her first time ever going away without me! As a ballet dancer, students her age and level should be auditioning for summer ballet programs. Since I was a ballerina and I am one of her teachers, I am quite involved in her ballet training. I assumed she would never want to go away to one of these programs because she would have to leave the safety of home. However, when auditions began, I saw her excitement when she was getting accepted into some pretty prestigious ballet programs. She and her friends were contemplating where they would go for the summer and I was so happy to see this. Along with a few ballet friends, she chose the Nutmeg Conservatory in CT. I was so excited for her and so happy that her fear was not stopping her. So in the summer before 10th grade, she stayed away from home without me for the first time ever. She called me everyday because she was scared when others didn't feel well or if she had a headache or stomach ache. She also lost a few pounds since eating outside of home was still not that easy, but I didn't care since she accomplished something I never thought possible!
The next relapse, the one we are still dealing with, began towards the end of 10th grade and reared it's ugly face during the start of 11th grade in 2017. Her phobia didn't go away after her early summer therapy with Dr. J in 2016. I didn't expect it to since we were not doing the same kind of intensive treatment we had done in the past. Being much older, there was no way I could force her into that kind of therapy again. She just needed to learn how to cope with some of her actions surrounding the phobia, but the phobia still lingered. After she threw up the last time, her brain decided that she would never let her guard down again and that she needed to be on constant alert. It kind of makes sense in her world of anxiety. It's totally not logical, but when you think about it from her point of view, you can see the connection. She was basically cured after her initial exposure therapy back when she was 13 and she stopped worrying about throwing up. She stopped taking precautions like washing her hands obsessively and checking expiration dates. And then... she threw up. Obviously it was bound to happen at some point and not because she was not on alert anymore, but unfortunately, her brain made the wrong connection and now she is stuck.
IBS Diagnosis
I believe things started getting out of hand with the stress of school which simply added to her phobia. Towards the end of 10th grade, her stomach started to bother her and she was diagnosed with IBS. She was having constipation and diarrhea and stomach pains everyday. I knew it was her anxiety setting this off along with the academic and social stress from school.
Now imagine an emetophobic with IBS... Her stomach hurts, she gets anxiety because she is afraid she will throw up, the anxiety makes the IBS worse, which then makes the phobia worse, which then makes the IBS worse. It's a circle of hell!
She started missing some days of school towards the end of 10th grade and we just sort of dealt with it ourselves knowing that school was almost out for the summer. During this summer before 11th grade, she spent 5 weeks in MA for another ballet intensive. She was accepted to Walnut Hill School for the Arts, which was very exciting and special because it's where I went to high school. I lived at this boarding school for two years and was thrilled she was going to get to experience this magical place with it's wonderful ballet training. To make it even more exciting, she was also offered a spot for the 11th grade school year!
This was the hardest decision she has ever had to make and it tore her apart. She wanted to take the 5 weeks and really experience life at Walnut Hill before she made her decision. I tried not to push her one way or the other, although I really thought it would be an amazing growth experience for her and I was hoping she would say yes. She was stressed out the entire 5 weeks because she was in turmoil. She didn't want to go back to her school in Miami, but she didn't want to live so far from home even though my family lives and hour away from the school. She called me everyday, more than the previous summer, complaining of stomach aches and headaches. We had many discussions about the pros and cons of going to school there in the fall and she finally was leaning towards a yes. It all fell apart though when she went to a meeting for the students that were interested in staying for the school year. The subject of dorm parent duties came up and the woman running the meeting was a dorm parent during the school year. She talked about how the students should be at ease knowing that if they ever have a problem or are sick in the middle of the night, the dorm parents are always there for them. The conversation morphed into how some years the stomach flu goes through the dorms! I am sure you have figured out now that her yes, turned into a no. Absolutely not. No way. Not happening. Get me out of here now.
We talked and talked and talked for the next week as the decision deadline was coming up. I left a message for her psychiatrist to get her opinion, but she was on vacation. After much contemplating, she decided she could commit to going and trying it for a few months, but only if she could have her own room. The school tried their hardest to accommodate her single room request, but the last spot for the fall was for her, and it was not in a single room. They tried to see if there was anyone they could move around, but they couldn't make it work in our favor. After the decision was made, the psychiatrist called me back and said it was probably for the better. She did not think my daughter would have been able to handle it.
A few weeks after she returned home, 11th grade began. She was very unhappy and depressed. Each week became more of a struggle. She was constantly feeling sick to her stomach and was depressed and stressed out. I reached out again to Dr. J and she agreed it was time for help again. She was not seeing clients anymore because of her schedule at the University, but she passed us along to her fellow psychologist at UM. Dr. J was able to fill her in on my daughter's history.
We started seeing Dr. A in September of 2017 and we still see her every week. My daughter was starting to have more frequent panic attacks, was very depressed, and I was having a really hard time getting her to go to school. Her stomach was a mess and she was freaking out because it was getting harder to keep up with her classes while missing so much school. She has always been set on getting A's, yet she had no drive to do homework or class work for missed classes. She was taking all Honors and AP classes and just couldn't keep up since she would be up late at night having stomach aches which would lead to panic and was unable to get any homework done. In the mornings she was so stressed out because she didn't do her homework so she would refuse to go to school.
We came up with a rule that if she didn't go to school, she couldn't go to ballet. It worked initially until she started missing too much school and ballet. She decided life was not worth living anymore if she couldn't dance. Ballet was the only place she felt happy and healthy for the most part and she now wanted to die. Dr. A had us write up a suicide contract much like the one we had hanging on our fridge when she was 12. Things were not getting better and our whole family was suffering. The school offered dropping AP classes and honor societies, but she said no. She didn't want to be seen as a failure or looked down upon by the other students and teachers.
Dr J suggested we find a new Gastroenterologist since the one we went to previously just sent us away saying it's IBS from her anxiety. She offered no problem solving and no medical intervention and no follow up appointment. Dr J gave us the name of an amazing doctor who did a whole physical work up. She even did a colonoscopy and an endoscopy after a few months of trying things that were not working so that she could rule out any other possible problems. As it turns out, it is IBS, made worse by anxiety along with some intestinal motility issues (basically the rate in which the food moves through her intestines). She had stomach issues when she was young with constipation and diarrhea, so I guess she is just prone to this. And of course, the anxiety doesn't help. She suggested we try hypnotherapy in addition to some medications to help her gain weight and also help to stop the stomach spams.
No More School... as we know it
Things started getting pretty bad in October and November and I began looking at other schooling options. We sat down with Dr. J and Dr. A to talk about options and strategies. They really did not want us accommodating the anxiety in any way and they really wanted her to stay in school. We all agreed that homeschooling was not an option since she would never leave the house and also for the fact that she has the personality that could very much lead to her becoming an agoraphobic. I felt like she was going to spiral out of control and wind up in a treatment facility if I didn't find another option. A treatment facility that is four hours away from Miami was an option that they told us to consider. I was very much against it because it is a day program only. They would most likely do exposure therapy and I knew there was no way my daughter nor I would be able to handle that again. One thing would be to put her in a full-time residential facility where she would have help 24/7, but to do intensive therapy for 4 hours a day and then give her back to me each afternoon was definitely not feasible. Not after what we went through when she was 11 and 12 years old. Besides, the prices of these facilities are outrageous and our insurance would not be covering anything like that. I can't even get them to pay for any psychiatry or psychology visits.
Against Dr. A's and Dr. J's advice, my husband and I decided to pull her out of school after I found another solution. A brand new school had just opened very close to our house. It's a school that is based on online classes. Students make their own schedules and there are teachers there to help with all of the courses. Our psychologists were at least hopeful because we were not just pulling her out of school and letting her stay home. I made it pretty clear that I could not handle our home life as is. Having to yell every morning because she wont get out of bed, consoling her at night while she is having panic attacks and wondering when the moment will come when I have to take her to the ER because she wants to kill herself. We had to make a change unless we wanted to go down the road of very expensive treatment options that are never guaranteed to work.
In November of 2017, we withdrew her from the school where she had spent the last 5 years. I had so many conflicting feelings about it. It felt wrong, yet it felt right. It felt like we were giving up, but it also felt like we were standing up against the system that was feeding into her stress. We made sure that we all, the school and Dr. A and my husband and I, came up with a schedule together that my daughter would need to follow. It was also in the plan that Dr. A would have a conversation with the director of the school regarding things that would be helpful and not helpful. The school is quite flexible and the students that were there basically came and went according to their sports or sleep schedules. My daughter needed more of a solid set in stone schedule or she would wind up staying in bed all day.
They welcomed our daughter as their 4th student and were absolutely helpful and understanding. We agreed on a 10:00-2:00 schedule Monday through Friday. Her new school definitely alleviated lots of stress and allowed her to be able to deal with her morning IBS issues a bit better. After a month or so, she started to not follow her schedule and there were many mornings that I would still have to be yelling to get her out of bed. She would text me that her stomach hurt and can I please pick her up. I tried hard not to feed into her anxiety and I would ignore her texts for the most part. We still had the no school=no ballet rule. It was only having to be used maybe one day a week initially but started to become a more frequent thing. She hates school so much that any school at all sucks in her mind. She was still overwhelmed with her AP Science class that was transferred over and was also trying to get used to the online classes without speaking up and asking for help.
After a few months of this she had a breakdown one night. She was under pressure for not completing things on time for her online classes and was unhappy because she was missing ballet classes for not going to school. On a cool February night at almost midnight, I wound up driving her to the Children's Hospital ER because she was having such a bad panic attack and was saying over and over that she wanted to die. We stayed there for about 4 hours and by the time the doctor came in she was fine and we went home. I called our psychiatrist the next day and the first appointment she could get us was 4 days away. In the meantime she gave us a prescription for clonazepam, which is basically a valium, to be used for the short term in case of another panic attack. I also called Dr. A who gave me reminders about how to deal with the depression. I needed to try to get her out of bed and doing stuff. It is not easy getting a depressed 17 year old out of bed, but I was able to get her to walk the dogs with me and play some games.
New Psychiatrist
We made it to the appointment with her psychiatrist 4 days later and agreed that her medication needed to be changed. She suggested we get a second psychiatric opinion and had me call a friend of hers who she thought would be more knowledgeable with pediatrics and phobias. I called him and he told me about a different psychiatrist who could probably be more helpful.
I made an appointment with her and she turned out to be wonderful! After we shared the long history and the medications we have tried, she knew we needed to change things. She told us about a genetic screening that identifies which psychiatric medicines would be best for my daughter's specific genes. We decided to spend the money and get that done instead of just guessing by trying different medications until we find the right one.
The genetic screening came back two days later and was extremely helpful. The medication we had talked about switching to with this new psychiatrist and our last one was on the red category. There are three categories in the report. Green, yellow and red. In the green, we had 4 medications to choose from that were found to interact well with her genes. In the yellow were 5 medications with notes next to each one about why they are not idea for her genes. Both medications she had been on in the past were listed in the yellow which is why they were probably not very effective. In the red category were 13 drugs listed. The one with the most negative markers was the one we had talked about switching to! Yikes! These are a few of the notes so you have an idea; 1. Use of this drug may increase side effects, 2. FDA label identifies a potential gene-drug interaction with this medication, and 3. Genotype may impact drug mechanism of action and result in reduced efficacy.
Another really important thing the test showed was that she has a gene that prevents her body from metabolizing folate into L-methylfolate. Again, there were three categories and her folate conversion was so low that it was in the red. Folate is very important for the brain and people that have this gene are more prone to suffer with mental health issues. It was also explained to me that her lack of folate was preventing her body from metabolizing the medication properly.
The new psychiatrist gave me specific instructions on how to titrate from the current medication to the new one. We basically just needed to slowly lower the dosage of the current med, then add a low dose of the new one after a few days, then stop the old one and then increase the dosage to her current dosage. In addition to the new SNRI (instead of an SSRI), she would need to take another pill everyday, probably forever, that is simply folate that has already been converted to L-methylfolate so it can automatically be used to create seratonin, norepinephrine and dopamine in the brain. It's not even considered a drug, so my insurance doesn't cover it. It's considered medical food and has no side effects. The psychiatrist told me about an online pharmacy she uses for that drug which cuts the price almost in half.
The psychiatrist explained that both new medicines take about 4-8 weeks to take effect. It was a long 6 weeks after we started to see a difference. I was still having to coerce her into getting out of bed and there were a few instances where I just laid in bed with her while she cried. It's so hard trying to give someone the will to live when all they see is despair.
Much to my surprise, my daughter started looking into hypnotherapy online since the Gastroenterology doctor had mentioned it could help her stomach. I was so excited that she wanted to try it that I found a place in Miami Beach and made an appointment right away. Unfortunately, after a few sessions, I realized it was not going to work. Deep down, she doesn't want to get rid of the phobia since she believes it is keeping her safe from throwing up. It was so exciting initially and we really thought it was going to help. The hypnotherapist was amazing, but my daughter was just not able to buy into and let her phobia go.
Once I was able to get her back to school we started a new rule which was no school=no phone instead of no ballet. Dr. A and I came up with the plan together after trying to figure out what would motivate her to do the things she is supposed to do. We changed the rule since I know that ballet is the only thing she does that is healthy for her mind and her body and I didn't think we should be taking that away. We were also able to drop some academic classes that she didn't even need. She was stressing over an AP Environmental Science class which her previous school didn't even tell us she didn't need. She finished all her necessary science credits in 10th grade! After sitting down with the new school director and figuring out how many credits she actually needs to graduate, we were able to drop lots of things, including science, so she only had the 3 core subjects that she needed for 11th grade. Her senior year should be a breeze since she only needs an English and a History class.
This made me realize the insane schedules that a lot of schools are pushing on kids. To be taking 7 classes with tons of homework and tests everyday when you really only need half of them is crazy. If you have future plans of ivy league schools or a career in science or medicine, then yes, those classes would have been great. I wish high schools were better about giving kids what they need and not overloading them to the point they want to die from the stress. Thinking back, I am not sure why she was made to take honors High School classes in 8th grade. She had impeccable grades so I guess that was just the track in her school if you were one of the "smart kids". I didn't know any better aside from the fact that it didn't feel right to me. I just went along with the schedule since that's what everyone else we knew was doing.
That "smart kid" track led to taking AP classes as soon as high school began as well as the honors classes. I am now a believer that this mentality is what is leading to the stress and suicide rates among high school students. Why can't kids in middle school take middle school classes, kids in high school take high school classes and let the college kids take the college classes? My son will start middle school in 2019 and I am taking this all into consideration. He is already in a school that boasts about their accelerated curriculum. Most of his subjects are the curriculum of the next grade up. I have friends with kids in his class that hire tutors to help their kids keep up! Tutors in 4th grade for kids that are stressed and having trouble with the 5th grade math they are being taught is not the path I want. My son earned a B- all on his own with no tutors and not much homework help. A B- is totally unacceptable with many people I know here in Miami. There is a boy in my son's class that cries when he get anything lower than a 95! I feel like all this pressure it just setting the kids up to fail. Or setting them up for a school life full of stress.
Getting Ready for Austin, TX
School has been out since the end of May which definitely alleviates the having to wake up to get to school stress. The difficulty now is just trying to get her to wake up before 2 everyday and get her to help do things around the house. She has always been a night owl and most nights she doesn't go to bed until anywhere from 12-2 in the morning. I have set a rule that she needs to wake up around noon and I do manage to get her out of bed by then on weekdays.
Her new medications have really made a difference as far as the depression goes. Her phobia is still there, but at least she is not suffering from the debilitating depression anymore. I think the phobia is going to remain with her for a long time. Dr. A was trying to do some more gentle exposure therapy and work with her on spitting out soup into a bowl and then eventually in the sink and then into the toilet in her office building. It was really starting to throw my daughter over the edge and back into a depression, so we all agreed to stop that. It wasn't helping. It was just making her angry and more anxious. So now they are working on coping skills and different ways to handle and manage her anxiety as well as life goals.
Most of those coping skills were forgotten the other night when we saw a teenage girl run out of the restaurant where we had just eaten and proceed to throw up on the sidewalk. We rushed to the car and my daughter was of course in a panic yelling for my husband to roll up his window and to hurry up and leave. I totally missed a good opportunity to not rush her away and to practice some coping skills, but it was such a whirlwind of anxiety that I couldn't even think straight since I knew she was going to freak out. It was a night for one of those back up pills called clonazepam that we have on hand for full blown panic attacks. It calmed her down and she fell asleep shortly after 11pm.
Hopefully we will be getting her medical marijuana card soon which will be a much better option for helping with the panic. We met with a doctor a few months ago and our application should be approved any day now. It's natural and it has properties that have been shown to greatly help stomach pains and anxiety. Once she starts, the doctor will be monitoring her closely to find the appropriate dosage of the cannabis oil. Our psychiatrist is very much on board and mentioned another patient she has with Crohn's disease. Medical marijuana has been the only thing that has helped his stomach and she is hopeful it will help my daughter as well.
This week we will be leaving for Austin, TX where my daughter will be training at Ballet Austin for three weeks at their summer intensive program. She will be going with her ballet friend from Miami and they will be sharing a room. She is excited yet nervous of course. Mostly nervous about someone getting sick. It will be easier than last summer since she will only have to share a bathroom with her roommate instead of a whole floor of other students. I am assuming I will be getting the dreaded multiple phone calls each day because she feels sick or has a headache or her friend is sick or has a headache. The good thing is that she will be in TX and I will be in FL and I don't have to answer my phone. It's so tiring having a child like this. I know there are so many parents who have it much worse than me, but never the less, it is exhausting and I can't wait to have a break!
Once she gets back home, school starts after a few weeks and then the whole college stress is going to start. Dr. A has been helping me to get her to look into dance colleges that are not far away. She desperately wants to be a dancer and I have explained that she has to go to college. She is not a strong enough dancer to get into any company straight out of high school. My hope is that she gets into a college in FL that has a good dance program and she starts to discover other forms of dance besides ballet and maybe even some other interests as well. She needs to get out of her bubble in our home and experience life. Breaking that bubble is going to be tough, but is has to be done.
