I do hope that you all had a very Merry Christmas and that our Lord and Savior, Jesus Christ, was lifted up in joyful songs and carols of praise. My family and I always look forward to this time of the year where we can reflect on the goodness of our Lord, the blessings he's provided us, and reading the Gospel message to one another and to our friends and family.
When Christmas day was over, my wife and daughter and I packed up the car and headed down to Florida to visit with some very close friends that used to be our neighbors. Now, mind you, our friends know of the challenges we face with Julie's PANDAS/PANS symptoms and the extreme OCD symptoms that she expresses in times of stress and infection, however as can happen with time and distance, they didn't think of the issues until we arrived that Monday afternoon.
Upon our arrival, we all settled in and once everyone came home from work and Disneyland (our friend's niece and nephew were there too) we all loaded the cars and headed to Chili's for dinner. One of our daughter's biggest smell fears is when someone eats fajitas. As you all know, they can really have a strong smell from the sizzle seasoning, the green peppers and onions. I'll be honest with you that I can't stand that smell either and it can sometimes permeate your hair and clothes. Anyway, our friend ordered fajitas and my daughter grabbed at my arm in a panic and said, "Daddy, I don't want to smell like the fajitas! Daddy it's gonna smell horrible! Daddy," in a hushed yet emphatic 13 year old's voice.
Well, our friend heard her fearful cries and you could almost see the lightbulb over her head. The moment she realized what was going on, she summoned the waiter over and insisted that he not bring the skillet of food over sizzling and steaming. He agreed, however when the food came out, it was still sizzling and steaming. He did say that the "sizzle seasoning was not included on the plate," but that did little to appease my girl. She was white-knuckled as she grabbed for my arm and squeezed as if she was about to fall off a cliff and her grip was the only thing holding keeping her from death itself.
Try as I might, my soft encouraging words made no difference that night. However, because others were around and she was not able to get a moment alone to obsess over this fear, she managed to control her panic by distracting herself with her friend and the cousins. That first night, of course, with three girls in a room, there was no sleep, only laughter and talking until early into the following morning.
As we've found out with our daughter, sleep is her ally. The more quality sleep she gets, the better her symptoms are. Well, on a vacation with friends her own age, sleep is optional in her opinion. Each day as the lack of sleep compounded itself upon each of them, the symptoms progressed 'til they were very obvious. Her friend actually started getting a cold the that became worse throughout the week. Our little girl had progressively hieghtened sensitivity to smells. One night our friend stir fried green beens with onions, which as you can imagine really made quite an aroma throughout the cooking time. She got so scared of the smell she closed herself in the room my wife and I were sleeping in and cried and screamed into the bed. It was absolutely awful.
One morning when we were all trying to get out of the house at a decent time (each day it was closer to noon before anyone moved) and I caught her picking up each pair of jeans out of the suitcase smelling each pair over and over and over again. I told her to move it along and pick a pair to wear. She snapped her head around to look at me and very coldly accused me of causing all of her smell issues and that the suitcase made everything smell musty. I retorted by explaning that this is no one's fault and that she must get dressed. I don't remember how it ended but I do remember her sassing back to me one more time and I snapped and spanked her butt telling her to never talk back to me like that again and that she was being very disrespectful.
Of course, mom came in after I left for damage control, but by then she was beyond consoling. What was interesting was that one of the evenings when she was supposed to put on her pajamas, she literally told my wife, "Well, I just decided that I'm going to have to get over the fact that my clothes smell musty from the suitcase, get dressed, and go have fun with my friends." To hear her say that was truly a sign that she's becoming more and more cognizant of her behaviors and is about to take full ownership of this disorder so she can begin the healing process.
Well, we piled back in the car on January 2nd at 4:30am and drove 13 hours back to Virginia. On the way home, our daughter slept through the dark hours. When she woke up we found a Denny's (funny it was the exact same one we stopped at last year) to eat some breakfast. Well, I shouldn't be surprised at this, but after eating she sat on the toilet there for over half an hour! Apparently the pancakes didn't sit well with her. Then, after loading her back in the car and were on our way, she lifted her leg up to her nose and sniffed her jeans. Suddenly, without warning, she screamed at the top of her lungs about how horrible her jeans smelled after going into the Denny's. It took over 20 minutes for her to calm down after numerous threats from my wife to pull over to the side of the road and kick her out of the car to calm down before we go any further. Once she calmed down she was very apoligetic for being that way. "I'm sorry, Daddy. I don't like being this way. I just want to be normal."
The rest of the trip home was uneventful except for the fact that I was in such a hurry to get home that we didn't stop for lunch and just ate nuts and drank 7up and water until we got home and could get some steak and salad from our local Ruby Tuesday's. What I didn't realize was that our daughter's stomach was so torn up from the Denny's pancakes and voiding herself of every bit of it at the bathroom that she was nauseated and over-hungry to eat. While she was eating her steak and salad at home (which she complained would smell up the house.......again) she complained that she might throw up. She jumped out of her chair and hit the bathroom and screamed for us to get her a trashcan while she sits on the toilet. While she didn't vomit, my wife had to talk her through some deep breathing exercises and relaxation techniques to calm her body down. She did end up with diarrhea, which leads me to believe she was truly ill from those pancakes at Denny's and potentially had a little bit of food poisoning or at least some serious anxiety around the food. It took us until midnight to get her to bed that night and still had to get her up early to go to school on the next day.
January 3rd through January 11th
Every day last week, Julie was seriously obsessed with the smell of food and general fear of smells at all. One night, our girl was so afraid that she moved all her homework and books to the room over the garage and shut the door so she could avoid being exposed to the smell of food. My wife did a little "intervention" with her and described in clear words that this fear of the smell of foods may grow into something much worse if she doesn't fight back. She used very explicit words (not vulgar, just very factual regarding anorexia, malnutrition, and failure to thrive) and that seemed to hit home with her. Not to mention my wife told her that we were never going to give up on her and will never leave her side, so that seemed to help our daughter come back some. On the first morning back to school, she didn't want to wear one of the hoodies she took on the trip because, "It still smelled like" her friends house. I raised my voice and demanded she put on the hoodie since it was just washed the previous night so it's impossible for it to smell like anything but fresh laundry. Boy did I feel horrible that day. So much so that I bought both my wife and daughter some flowers to say I'm sorry.
She has forced herself to be in front of us as we cook food, even though she'll do the, "Daddy, I'm scared that I'm going to smell like the food! Am I going to smell like the food?" every now and then, but I'll assure her that even if she smells the food on her or her hair or her clothes, it's temporary and it alwasy does go away.
We had an appointment with the ND just this past Friday 1/6. This time, I took her instead of my wife. This was very valuable since I've never really had a private audience with the ND to express my views and observations. The doctor and I both agreed that the Anacardium Orientale was not affective in producing any healing and that it was probably a sidetrack due to my wife's thoughts that our daughter's problems stem from a self-esteem issue. I stated that the self-esteem problems come from a lack of her confidence in her ability to control her emotions around her fear of the dark, her anxiety around smells, and the trauma of her past. The good doctor agreed that what I described to her was more PTSD type behaviors and not self-esteem problems. With that in mind, the doctor stated that we should do the following for three weeks:
- Continue taking the Elderberry Extract dropper (2 droppers full/day)
- Continue taking the D3 Liquid Supplement (3 drops per day)
- Continue taking the Vitamin (2 per day)
- Stop taking the Anacardium Orientale and resume the Stramonium. This time, however, now that we are no longer on the antibiotics, we discontinue the six pellets per day at 6c, rather while at the office, she administered a 30c large dose and wants to see her in three weeks.
This past weekend was fairly uneventful, however I did have to provide her another round of "intervention" by being overly dramatic saying that if she doesn't overcome this anxiety around the smell of foods, she will never be able to cook her own meals when she goes off to college and lives on her own and will die of malnutrition, so she has to fight back and win! Obviously that was over the top, but she caught on. Each night this week she's told us things like, "I promise I won't get mad tonight about food," or "I'm trying very hard tonight to get to bed on time," and "If I can get ready on time tonight, will you play guitar for me?" I've made it into an incentive now to see how she can accomplish her goals. I tell her that if she can be in her bed ready for prayers within 15 minutes of going upstairs to start her bedtime routine, I'll play one song on the guitar for her. If she gets ready in 10 minutes, I'll play two songs. More often then not, she'll get two songs because she's ready in 10 minutes.
Last night I made a different goal for her. If she could get in bed by 8:55pm I'd play four songs (since it's almost impossible for that to happen), but each 5 minutes after that that she's not in bed, I take 1 song away. I've never heard her feet move so fast! The good news is she got 4 songs. So, we're rolling along right now.
Well, I'm feeling a little bit lousy right now (head cold with sinus congestion) and my wife is feeling worse than me. Our daughter passed on these cooties to us so we're trying to wait it out.
All the best to everyone, and Happy New Year!
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