Since my last post the roller coaster ride has been anything but fun for my wife and I, not to mention our daughter. Her sensitivity to smells have gone off the chart. For a couple of days now we've had to eat cereal for dinner so she didn't react to the smell of foods. Even after washing her clothes and putting them away for her she's now obsessed with smelling everything that will be near her (clothes, pillows, comforters, etc...) and will trip the "smell" circuit and tell us that these things smell horrible and cry.
First I want to extend a VERY TIGHT HUG to Beth Eberhardt from
pandasconnection.com . I read her blog about her son growing up with PANDAS and the challenges and frustrations. While her son grew up with different effects from the immunological response to the infections, her story of recovery through homeopathy was encouraging to say the least. Beth, my wife and I exchanged phone numbers and had a conversation late into the night last week with her. She was, to say the least, very warm, curious, comforting, encouraging, and truly had a message of hope for my wife and I. Thank you, Beth, for sacrificing that night to talk with us and give us the strength to persevere.
Second, one of the great "light bulb" moments we had after finishing our conversation with Beth, was a new approach to helping Julie through this rough patch as the new remedy takes effect on her. You all may already have had this "ahaa" moment, but it's only now solidifying in our minds. You see, as a father of a challenged child I never thought to really put things in the perspective of my child's struggles. Instead, I was taught what most men were taught growing up; you act up, you get punished. You act appropriately, you get rewarded. For years we were told by numerous therapists that our daughter was attempting to control us by acting out and that we have to set clear boundaries and that when she crosses those boundaries, we are to punish her. The problem with that disciplinarian attitude is that when she's having a flare up from either a new infection or exposure to one, there's no reasoning or talking to her. She is NOT herself, thus cannot think rationally, rather with current emotions and anxiety. So, in essence, the "lesson" I'm trying to teach her is lost in the battle. With PANDAS, the deeper issue is not a lack of making proper choices (good behavior or bad), rather an inability to make those choices due to an infectious attack upon the brain's decision and behavior center!
Beth made some comments on how she brought her son out of the fog and into recovery through a partnership. Here's what she meant. Essentially when her son was having problems with various things (sorry Beth, I don't remember all of them) she asked her son, "Tell me what you can do and what you can't do right now and let's write them down. Then, I want you to number the things that you can't do right now but would like to work on. Put a one next to the thing you'd like to do first, then up the scale to the hardest thing to do and we'll work on each thing together." By doing this, Beth has accomplished several things:
- She has made her son the owner of this disorder.
- She has put HIM in control of the future.
- And she has provided her son the comfort of knowing that she will be there always encouraging, always watching, and always looking for a cure as she champions her son's cause in the medical industry.
It was interesting to hear that our experience with "two steps forward, one step back," were shared by Beth's son too. Some times they would work on one struggle and just couldn't get through it. So, she kept the list flexible and moved on to other things her son might be able to accomplish, thus always moving the recovery forward.
I was very frank with Beth by telling her that I'm in panic mode because Julie's symptoms are so dramatically acute at this stage. We talked more about the homeopathic remedies her son used and that he recovered very quickly at times when the remedy was matched perfectly with her son's disorder. It's frustrating to me that her son responded so well within days of getting the right remedy whereas Julie is on remedy number two and it feels as if she's made absolutely no progress at all. In her very calming Wisconsin voice Beth reassured us that we should be seeing some dramatic improvements by the end of two weeks. My wife sat with us and was softly reassuring me that we are on the right path and that Julie will improve.
After that conversation it was pretty interesting to see that Julie was presenting signs of SOME improvement over the weekend. Friday morning was awful with the PANDAS convincing her that, even though nothing had been cooked in the house, the house smelled weird. The truth is that because she's had her room closed off so much her ROOM actually smells slightly musty. When she leaves for school we open the room up and let it air out and she has yet to notice. The weekened was interesting. Saturday she was slammed with homework. She had a book report to complete by Wednesday this week and she hadn't even finished four chapters of a 33 chapter book. So, she was pretty much limited to homework all day Saturday.
Sunday we all missed church since we couldn't get Julie off the toilet until 10:30pm and still took until 11pm for her to calm down enough to sleep. At 1:30pm we went to Primos Pizzeria for Beth and Glenn's (her brother) birthday celebration. Of course, Julie was very tense at first because being at a restaurant she has no control over what smells will come her way and I was tense because I know how she reacts to fajitas at the local mexican restaurant and being at an Italian eatery with all the garlic and spices would be pretty difficult to handle. The good news is that the place had very little smell to it and because she was in public, she was able to control her fears. That is until I ordered Shrimp Di Favoro (spicy shrimp and pasta in a tomato sauce).
She turned to me and with fear-filled eyes asked, "Why did you order shrimp, daddy? Is it gonna smell?" In the past we brought home steamed shrimp from the grocery store, so of course that really did fill the house with the smell of shrimp.
"No, Julie, this shrimp is not steamed, it's just sitting on top of pasta. You'll see."
Sure enough when the food finally came (it must have taken over 30 minutes) and the shrimp was placed in front of me, I turned to her and said, "See? No steam." You could hear the sigh of relief in her voice as she looked at it and the waitress put her plate of plain spaghetti noodles in front of her. She did have to quickly run to the bathroom when she managed to get some of the Ceasar Salad dressing on her hands and rinse it off. No, not wash it off with soap, just rinse it off. She cannot stand the idea of using soap on her hands, not even the stuff that's been in our house since the beginning of her life.
We had a great time with Beth and Glenn's parents at the restaurant and Julie by my side. She was a delight to eat lunch with. Afterwards she pleaded with us to go to PetSmart and buy Sandy (her pet poodle that lives at my parents house) a treat for Christmas and a giant tennis ball. We walked to the opposite end of the strip mall and found the tennis ball and a treat for him. The moment we got back into the car she started complaining about the food (there was just too much food for me so I had it boxed up) in the car and the smell of the tennis ball, which I agree and can't understand why these tennis balls have to smell so "rubbery."
We made it home, but the rest of the day was difficult for she still had a lot of reading to do and had to create a cube for science class (which I will not even describe for you how ridiculous I find it that the kids have to make a 3d cube with periodic table information on it) which Beth and I ended up finishing for her so she could move through more reading.
Now, here's the hopeful part. Monday morning was a little better. She didn't complain about smells (true, we only had cereal instead of her favorite oatmeal) and generally had a good morning preparing for school. She was a little anxious that she was running late and would miss the bus, but we assured her that even if she missed the bus we'd take her to school. That eased her mind enough that the rest of the morning rush was better. The afternoon and evening Monday was just as encouraging! No smell fears and no rage towards Beth or myself. That is until it was bedtime and she got very angry about the smell of her freshly washed tank top and tshirt for her pajamas. I had to put her in my lap and calm her down with imagery. She loves to take horseback riding lessons so I capitalized on that and had her close her eyes and imagine being on the back of "Cordouroy" riding around the arena. That works amazingly well for her. It was close to 11pm Monday night before she got to bed.
Tuesday morning was another hopeful morning. Yes, she got up late since she was up so late, but she managed to eat her breakfast and get herself motivated while mommy was in the shower to actually get herself out to the bus stop on her own! Beth texted me that she was shocked when Julie came to the bedroom and said she was on her way out to the bus stop. Talk about looking like an owl peering into the night with golfball size eyes! My heart was leaping with excitement at reading that text message. Last night was better as well. I had gone to my parents house for dinner right from work and when I came home Julie and Beth were eating dinner (cereal, yogurt, slices of pineapple) and seemed to be having a good time. Julie did confide in me that she was afraid of the house and her smelling like pineapple, but didn't raise her voice. She seemed to be in a good state of mind whereby she could reason with me, so I told her to put on her "smarticle particles" for a minute and review the history of smells; they are temporary, they don't hurt you, and they should bring positive thoughts when it's the smell of food you like.
One of the things that she's always enjoyed is my playing the guitar and singing to her at bedtime, but I've always told her that if she's not in bed ready for prayers by 9pm then no guitar. She was panicking last night when she was on the toilet asking me to tell her when it's 8:58pm. She yelled out to me, "What time is it daddy?" You could hear the panic in her voice.
"It's 8:58, sweetie." She let out a whimper because she'd only been on the toilet for about 3 minutes whereas her typical time is anywhere from 10-30 minutes.
"What time is it now daddy?"
"It's now 9:00."
"NO!" She jumped off the toilet crying. She ran down the hallway and jumped into the bed screaming at me, "COMEON DADDY, IT'S 9 O'CLOCK! COMEON!"
Beth and I made it to the bedroom (I brought the guitar of course) and she laid her head on my shoulders wiping her tears. That's when I realized what undue pressure I had put on her to be in bed by 9 or her favorite time of night would not happen. I apologized to her not realizing how important that was to her. The end result was she went back to the bathroom to finish sitting there for another 10 minutes, came back to bed while I started playing, then got right back up and went one more time for another 10 minutes. We talked quietly about how we need to figure out how to overcome her fear of the dark so she doesn't feel the dire need to get every single drop of pee out of her bladder so she doesn't have to get up in the middle of the night. She agreed, so we'll probably be putting together a plan to improve this routine and this fear.
Even though she made it to bed and I was leaving the room at 9:30pm last night, she still got up very late. Beth made oatmeal and, of course, the smell hit Julie upstairs in the hallway and she screamed and raged at us about how horrible it smelled and that it's all over the house. Beth and I remained calm and reminded her that it's her favorite meal for breakfast and that the smell will go away. Of course she had a few angry words for us, but as Beth and I continued our calm and relaxing conversation about the news, the weather, the lunches we were making, Julie stopped the rages and joined into the conversation. I was pleasantly surprised at how little time it took to get her to move on.
We have lab orders for blood work to test her for any new infections, so Julie is not at all happy about being stuck again. We explained to her why we were testing, especially because if there is no new infection it could be a perfect time to start titrating her off of her antibiotics. We tried increasing the dosage to see if it reduced her symptoms and there was no improvement. We've already started titrating her down by 250mg of Keflex and we find it interesting that after only two days of titration the remedy seems to be making better inroads to healing her.
Lord, in the name of your son, Jesus Christ, we ask that you heal our daughter of this disorder. Bring her mind back to balance. Give her your peace and love. Embrace her in this time of need. Amen.
