She's off the Keflex

Late last week, we took Julie to the local laboratory for a blood draw.  Our homeopath and I were interested in seeing if her current exacerbation in symptoms was due to exposure to someone with an infection of any kind, or even if her strep titers were high due to her very own lingering infection from the strep bacteria.

As you would guess, she was extremely anxious about getting yet another blood draw since needles are not exactly a friend to anyone of any age.  The good news is she's now at an age (13) where we can reason with her about why we want the tests and what the tests will show us and help us determine the next step to take in her treatment.  Her famous last words after these types of conversations are, "Yeah, but...".

So, the results came back this week and the numbers were shocking to say the least.  Her ASO Titers are at the lowest level ever since we started lab draw some three years ago.  Other measures of inflammation also showed very low numbers, thus no current or previous infection seems to have caused her OCD symptoms to flare up so bad.  Simply put, the chicken roast smoking the house was merely a trigger for a very high level of anxiety and fear that compell her to smeel everything and fear all smells and their effect on her surroundings and her body.

We shared the lab results with the homepath and she was very happy to hear this.  We let her and her pediatrician know that we are going to discontinue the Keflex and stick to the supplements and remedy to help heal her of her obsessions.  Our current regiment is:

1. Arcadium Orientale (4-6 crystals a day)
2. DHA Fish Oil (up to 6 capsules a day to aide in skin moisture, brain focus, and mood stabilizer)
3. Multivitamin with Copper and Iron (2 a day)
4. Elderberry Extract (two droppers full of the liquid for immune system boosting)
5. Vitamin D Extract (3 drops for immune system boosting)

Julie had a very good session with the therapist yesterday evening whereby the doctor put it very plainly to her (at least that's what I was told afterwards).  Basically the doctor told her to stop trying to control her environment and her parents to avoid dealing with smell exposures, rather control her response to the situation(s).  Of course she didn't like to hear that, but at the same time this was validation of what we've been telling her constantly that she has to learn to use her tools for relaxation, breathing, and imagination to change her thought process around these obsessions.

So, last night we brough pizza home for dinner and while she did make a point of telling me her hands smelled funny, I pushed back saying that of course they smell......they smell like pizza, which was very yummy.  That seemed to help her avoid a blow up and even after she went upstairs to get ready for bed and she told us the hallway smelled a little, she did manage to narrate for us how she was coping with it.  Both Beth and I praised her for using her tools and relaxing.  So, last night was a good start to helping her cope better.

Beth and Julie went to Beth's parents to help setup the dinner table for the Christmas Eve dinner and found out that they had turned on the oven cleaning feature.  Obviously when they realized that it would smell up the place, they were very apologetic.  From what I've heard today, Julie managed to hold it together by working upstairs in a closed off room helping grandma wrap some presents.

The real test will be when she spends the night at my sister's house with her two cousins.  They baked cookies this afternoon, so I'm sure the whole house smells of cookies.

The reality for Julie is that she'll have to reverse years of hard-wiring of negative responses with good habits and good thoughts and new wiring in order to eliminate and cure these obsessions.  So, it's better the expose her to smells than to avoid them all together, thus reinforcing and strengthening those fears.

Merry Christmas everyone and we fervently pray for all our challenged children to be healed by our Lord and Savior, Jesus Christ.  Amen!

In His Grip,
Mark, Beth, and Julie

Don't Panic, Mark!

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:

1. She has made her son the owner of this disorder.
2. She has put HIM in control of the future.
3. 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.

Hopeful

This morning started out MUCH better than yesterday.  There were no slamming doors as our daughter rushed between closed doors to avoid smells, and the breakfast routine was smooth.  That is until she brushed her teeth.

Only seconds after putting her toothbrush back Beth and I heard her yelling, "Really?  Aww, come on," as she stomped across the upstairs hallway back to her room.  Shortly afterwards, she came clammering downstairs to get one of her hoodies, then stomped back up the stairs whimpering all the way.

She slammed the door to her room, then quickly opened it again asking, "Can one of you take me to school?"  Her demeanor was frustration with herself for getting up so late (once again, she was up until 11pm doing homework and studying).

"Of course we will," I lightly replied.  She replied with a sad little, "Okay," and was back to the closed door of her room.

It seemed that after writing that in her mind as a release of strain on her compressed time she relaxed and, once back downstairs, was her relaxed and easy going self.

I asked her about what happened this morning and she said her hands smelled funny after brushing her teeth and the hoodie she picked out first this morning was a little musty smelling.  I explained to her that she has to remember that she did AMAZINGLY WELL this morning up until that point, so that is progress and she should be proud of that.  However, I did tell her that the negative reaction she had to the smell of her hands and blowing up over the hoodie was not an appropriate response to smells and she must remember to understand that smells will be around her all her life and her reactions to them are the main thing she must work on.

She seemed to understand what I was talking about and we quickly changed the subject to tonight's events.  She has one of her friends coming to spend the night and go driving around looking at Christmas lights in the various neighborhoods.  We do this every year and always bring one of her friends with us.  We're supposed to bring pizza to the house for dinner after Julie's therapy session, but she has already expressed some worry about the pizza smell.  We'll see how it goes.

Frustrated

I had a conversation with the homeopath that is treating my daughter and explained my fears and concerns about the significant up tick in her smell anxieties.

I must have sounded like I was in a panic because her responses to my comments were very professional, yet calm.  She assured me that her current remedy Anacardium Orientale is the right one for Julie and that the increased sensitivity to smells is definitely a response to the remedy that she was hoping for.

The more I learn about homeopathy the more frustrated I get.  How can an up tick in symptoms be a sign of healing?  How can I sit here and sooth, coach, and cry with my thirteen year old daughter and be encouraged that she's getting better?  I know patience is a significant key to progress, but I'm a guy!  Guys fix things!  You present me with a problem and I'll fix it!  I CAN'T FIX MY DAUGHTER!  I can only research, collaborate, and pray that the path we've chosen is the right one.  You guys out there can sympathize with me, right?  I mean, working in the information technology field provides so much logic and reason when troubleshooting that coming to a logical resolution can be methodical, reasonable, and sometimes quick (not all the time of course).  This is neither logical, reasonable, historically researchable (beyond five to ten years) and very few in the allopathic medical field have found the golden ticket to nirvana!

We did talk about doing a neurotransmitter test on my daughter with the saliva test to see if perhaps she's not producing enough serotonin or melatonin.  We could be having a problem with her own brain's ability to produce enough of these calming chemicals to assist her during her difficult times.  We also talked about a potential exposure my daughter has had to other infectious children (Ugghh, the schools are a veritable petri dish of bacteria and viruses) and that perhaps she has some brain swelling going on.  She suggested we try some Turmeric to reduce any swelling occurring, however at this time we're using a dietary supplement that uses an extract from the tobacco plant.  We'll see if that shows any improvement.

I know I'm starting to sound like a broken record, but these fears of smells, especially around cooking, have truly taken a toll on Julie and my family as a whole.  However, having said that, I can say (not to pat myself on the back) that I have not yelled in several days, I've made verbal promises to Julie that I will try every day to treat you better and understand that most of this behavior is not you, but the PANDAS talking.  I repeat to her every time we talk that I love her and her mother does too and that we'll get her through this.

Tonight she called me on my mobile phone around 5:00pm to cry to me that the house smelled horrible because mom baked sweet potatoes in the oven and the whole house stinks now.  She had blocked herself in her bedroom to try and escape the smell and wanted to hear my voice.  I tried to talk her through it, but someone called on the other line and she had to hang up so mom could get the phone.  I called her back a little while later and she seemed to have calmed a little.

By the time I got home, both mom and daughter were dressed in workout gear and Beth was attempting to distract Julie by doing a trial run with a DVD of Zumba moves.  As I type this upstairs I can hear laughter and silliness as the two of them attempt to move their bodies in ways that I could never do.  It appears to be working to get her off of the obsessive thoughts around smells.  She still has to do some homework tonight, so I'll have to be the heavy and break up the fun I'm sure.  But as I've done for three nights now, I'll sit with her in her room and help her get through it.

Lord God, in the name of your son Jesus Christ, I plead with you to heal my daughter!  Amen.

New remedy

Well, Thanksgiving has come and gone and we're now on a new remedy.  According to the doctor, she is pleased with Julie's progress and says it's time to move on to the next phase.  In the first two months, the good doctor had her on Stramonium .  According to the materia medica (I hope I'm saying it right) fit Julie's initial fears of the dark, night frights, terror, and, for the most part, the symptoms seem to have subsided.  She no longer feels the need for the overhead light to be on at night and has even asked that her bedroom door be closed all night.  I don't know whether to put that in the "healed" column or "new symptom" column.


Anacardium Orientale


For the past two weeks, we've been provided the remedy Anacardium Orientale, which to a large extent seems to meet our current need to help Julie deal with fears, scared, anxiety, insecure, obstinate, and lacks self-confidence.  So far no changes in behavior or habits, but patiently waiting for the light.

Our nighttime routine has improved somewhat, however the time she requires to prepare for bed has not improved much at all.  She seems to want to take care of herself at bedtime most nights by telling us she's going upstairs to get ready for bed and that she'll call us when she's ready [for prayers].  The challenge is to get her to understand that the toilet is NOT a place to sit forever while attempting to push every possible drop of urine and/or feces out of her body.  There are nights where she is on, then off the toilet in minutes, but most nights she's on the toilet for 10, 20, sometimes even 30 minutes.  Every time we get frustrated and ask her why she's sitting so long, her response is, "It feels like it's right there and it will not come out!"

We think this is a psychological challenge with Julie.  You see, back in January she had to be "cleaned out" at the local children's hospital because she was severely impacted.  She was traumatized by the experience because they had to put a tube down to her stomach through her nose and slowly drip a product called Nulytely to her stomach that essentially cleaned her out.  It was very traumatic to see your daughter drugged first, then a tube put down her throat, watch her struggle with it, then void her body (which at that time she weighed under 70lbs) over a 24 hour period.  I will not get into the horrific crying, screaming, and pleading to take out the tube, but suffice it to say that I laid by her side while she cried in pain and agony and we came out of the hospital completely cleaned out.

That's not the end of the story though.  She didn't start eating right away.  She stated her stomach hurt really bad and anything she ate came right out (both ends).  The gastro specialists basically stated she needed some probiotics to help her reestablish the good bacteria colonies needed to digest food and that should help get her back into balance.  The gastro doctors highly recommended a probiotic called VSL #3.  This probiotic has to be refrigerated and costs upwards of $70 with shipping.  The good news is it works.  The bad news is you can't take it on long road trips unless you have a very cold cooler.  We're thinking of an alternative now that she's been using it for close to a year and it has truly helped control her GI challenges with being on a prophylactic dose of Keflex every day this year (750mg/day).

Anyway, back to what I was talking about.  My point here is that psychologically, this experience has led her to obsess over eating healthy (if only our society did as much to reduce the obesity pandemic in our children today) and not eating too much.  She has it in her mind that if she eats too much, regardless of whether it's healthy or not, she'll vomit or she'll get constipated and have to go back to the hospital for another cleanout.  No matter how much we assure her that she's not going to go through that again, she still worries.  And at thirteen years old and under 80lbs, I tend to worry that she's not taking in enough nutrition to help her growing body thrive!  Today she doesn't weigh enough to enable the passenger side airbag.  We try to make light of it when she's had a good meal and gets in the seat and notice the airbag light is turned off (meaning she weighs enough), but as a father it still concerns me.

So, we're still dealing with her extreme fear of smells (as I mentioned last posting about the roasted chicken smoke in the oven), and her stomach not really feeling very good on a regular basis.  Just last evening, Julie helped me put out the Christmas deer and the pond (you know, the metal framed deer with lights all over them for the yard) and right in the middle of putting them in place in the front yard she starts weeping because her hands smelled wierd like the grass and the deer.  I told her to look at me in as soft a tone as I could and said, "I love you, Julie.  Do you want me to talk you through it?"

"No, I'll be alright," she said as she sniffled through a wavering voice as she continued anchoring the deer's legs into the ground.

"Julie, look at me again.  I can talk you through it if you want.  It's okay to get help.  Remember, mom and I love you.  You sure?"  I went about my motions trying to lock down my doe's legs into the hard clay soil.  It always amazed me how grass could grow in such a silty hard-clay soil, but it does.

"I know, I'll be okay."  She went back to her work but I still persisted in asking her the questions that have formed a mantra over the years.

"What's more important; the smells or having fun putting out the Christmas deer?"

"Having fun."

"And history has taught you what about smells?"

"That they go away."

"Right.  And that the will not....."

"Harm me," as she moved to the next leg to anchor with a stake.

"And that they eventually..." I coached her as I moved on to connecting the power cords in the back of the deer.  I had run a green extension cord from the front door where there is an external power plug and put three multi-plugs on the end so we could get all three deer and the pond connected.

"Go away."  By now she had started to sound like she was calming down, but still sniffling as the tears drained from her eyes down into her sinus cavities.

"Exactly.  So, let's just have a good time putting out the Christmas lights and instead of smelling your hands, do the opposite; don't smell them and focus on the fun."

"Okay.  Hey, can we get the red rope lights out and wrap them around one of the trees?  Please?  It will only take a couple of minutes."  Her demeanor seemed to be back to that of a jubilant thirteen year old girl still holding on to the spirit of a child at Christmas, yet struggling to identify herself as a young lady that's maturing on a daily basis.

"No, honey, you have to go back inside and fininsh your book report.  Let's finish this up and get back inside."  You could see her eyes pleading for just a few more minutes away from that darn book report, but despite my own interest to keep her outside and having fun, I put my fatherly hat on and refused once again.

Here's the difficult part.  She was up until 10:30pm last night finishing up that darn book report!  We were so angry with her for waiting until the day before it's due to put any effort into the report.  It was supposed to be a rough draft that could be either typed or hand written.  Instead, Julie put so much effort into it that it ended up being typed, double-spaced, all parts of speech labeled and callout boxes pointed to the underlined areas of speech, three pages long and seven paragraphs long.  When I sat down next to her she sounded so defeated and tired.

"Is it okay, Daddy?  Is it too long?  It's too long isn't it, Daddy?  I hate this so much!  Do you ever find it hard to write something when you don't want to, but when it's something you want to write you can do it in a matter of minutes?"  You could visually watch her shrivel in her chair as she contemplates her over-achievement in this assignment whic only required 25 sentences over five paragraphs.

"Julie, I'm sure it's fine.  I'll read it over like you asked and let you know.  Right now you have to go to bed, so go get ready for bed while I read it over, okay?"

"No, I have to redo my bubble map!  It's too sloppy and he's going to give me a bad grade," she started to raise her voice at us as she felt the pressure of us requiring A/B work from her, which in her mind means we want her to be perfect.  It went downhill from there.  She snatched the paper and started to rewrite this bubble map while tears dripped down on the new paper.

"Julie, this bubble map looks great!  I can read it perfectly fine."

"No, it's sloppy and he's going to count off for it not being neat!"  She snatched it back from me and began writing again.  Well, a wise parent would have let her complete the rewrite, but Beth and I wanted her to get some sleep, so I snatched it back and said, "No, you're not redoing it.  You're tired, you've worked very hard today to finish the report and you need to go to bed."

It escalated from there.  She grabbed it back and kept going.  I pulled both the paper and the binder she was bearing down on from her lap, put it beside my chair and told her I'll read it and let her know if it needs to be rewritten.

"All you're going to say is that it looks fine and you can read it even though you know it's sloppy just because you want me to go to bed!"  By now she was yelling and staring me in the eyes as if she could scream.

"No, Julie.  Why in the world would I lie to you?  Comeon now, just go get ready for bed, I'll review the report, then I'll read the bubble map, and if there are corrections to make, we'll make them right before we print it."

At this point she was absolutely unmoveable.  She started to jump up at me to grab the binder and paper to get back to rewriting the map.  I snapped.  I grabbed her around the chest and attempted to redirect her away from where we were sitting and walk her towards the bathroom.  We didn't make it far.  She straightened up her body and arms trying to escape my grip and yelling, "What the heck?  Why are you doing this?  Let go of me I need to rewrite my map!  Stop it!"  The drama continued for a few minutes as I tried to explain to my wife (who had been right in Julie's face yelling at her to stop obsessing over the bubble map and go to bed) that I was trying to physically move her out of the situation so she could move on.

I let go of Julie only to watch her lunge past me to get back to the paperwork.  I finally snapped and sent a barage of "Go to your room," until the last one was at the top of my lungs, "GO TO YOUR ROOM NOW, JULIE!"  She ran to her room and slammed the door while I stood where this all started and looked at my wife wondering what in the world just happened.

Beth clearly identified the problem by turning to me saying, "Well, I guess I didn't help matters much by screaming at her right in her face telling her to stop this."  I simply nodded and repeated the same apology for yelling at her to go to her room and by getting physical with her.  Don't you just hate it when you know what you SHOULD do or SHOULD say, but instead you let the adrenaline of the moment kick in and instead of thinking through what to do, you act on your instinct to just get this over with?!  Well, she managed to get to bed around 10:30pm last night and, had she spent a "normal" amount of time on the toilet, she would have been in bed by 10:00pm.

This morning was difficult to say the least.  None of us got out of bed on time.  We were all drained from the previous night and Julie was no exception.  She got out of bed 30 minutes behind schedule and was attempting to put in her contacts and one contact failed after another on the left eye.  After the third try, she screamed for mommy to come help her.  By then mommy was downstairs attempting to eat her breakfast before heading off to classes (she's studying to be a sonographer), so Beth told her to come downstairs and she'll help her put in the contact.  Well, that didn't sit well with Julie.  It's not part of her routine, which is very strict, so reluctantly she stomped down the stairs to have mommy put in her contact lense.

After this, it was a rush to get through her cereal, then off to the stairs to brush her hair and teeth while attempting to get her clothes picked out, which is a struggle in and of itself.  Beth went off to school and I stayed behind to make sure she made it to the bus.  I've never seen her in such a flustered state of affair.  She got through all these things I mentioned and ran down the stairs saying she's so late.  The bus wasn't coming for another ten minutes, so I'm not sure where she got that idea from.  I was wise enough not to engage in a futile conversation as history has taught me one thing; don't take the bait of negative thinking.  Wait for her to calm down first, then engage when she's more receptive to coaching.

She must have forgotten something because she started growling at herself and calling herself stupid and an idiot and ran back up the stairs crying about missing the bus.  She finally came back down the stairs and sat on the foyer tile attempting to put on her socks and shoes.  She took her frustration out on her socks while I finished brushing my teeth upstairs and began to walk down the stairs saying that, "these socks are getting too small!"  I didn't take the bait and merely went about my routine as I prepared to leave for work this morning.

I walked passed her and started gathering my baggage, my lunch, and my laptop case to put it in the car and Julie pleaded with me, "Don't go yet!"  I looked at her and as calmly as I could, told her that I was simply putting my stuff in the car to leave after she did.  That seemed to calm her somewhat.

After putting my equipment in the car I came back in the house and went back to the front door and opened it.  "What are you doing that for?"

"I thought you were ready to leave," I said in a questioning tone.

"No!  Not yet!  I'm still trying to get this stupid jacket on and my backpack.  I hate backpacks!  I hate school!  I never want to go to school!"  She was fidgeting with her hood on the sweater so I gently reached back and held it up as she fixed her hair and the straps on the backpack.

This time, I took the bait, but I said, "Well, if you hate school, then don't go.  You'll get a zero for the day, but that's your choice."  I'm not sure that was wise, but it seemed to stick, for her reply was, "I wish I could!"

As she finally headed out of the front door, down our steps and onto the sidewalk she was whimpering a little to herself.  My heart reached out to her and I said, "I love you."  The response was a short, yet pleading voice; "I love you too."

We'll see how the new remedy affects her over the course of the next few days, but suffice it to say that the stresses of honors classes at middle school, the load of homework dumped on her and her classmates right after the Thanksgiving holiday, and the challenges of managing time seem to have taken a toll on her.  My prayer is that tonight when I return from home she does not have a lot of homework, so we can just play, or run, or shoot some hoops, or anything besides the stresses of school.

Lord, heal our daughter!  In your son's precious name I pray, Amen.

Happy Thanksgiving

Well, friends, it's been eleven days since I posted and so much has been going on with Julie that I'm not sure where to start.  Some of it is encouraging while other parts of it are just so darn frustrating not only to Beth and I but Julie too.

Each day we are faced with the reality that God has placed this child in our care and, above all else, He reminds us that there is absolutely no other parent that He would have rather had take care of His child than us.  In the heat of the battle we sometimes forget to give thanks to our Lord and Savior for the many blessings we have, including a child with PANDAS/PITANDS/PANS.

The challenges are still there, such as:

• Still on 750mg Keflex/day after attempting for 3 days to drop 250mg.  Her response to the lower dose was almost immediate once it leveled out at 500mg; pure PANDAS symptoms exacerbated.
• Still on 3-5 crystals of Stramonium each day as her ND Homeopathic physician prescribed.
• Sitting on the toilet for anywhere from 5 to 30 minutes at a time (especially at bed time).
• Avoiding strong smells so she "doesn't rage" (her words). 
• Still will not wash her hands with soap other than the liquid soap we've used all her life.
• Ever since Beth roasted a chicken in the oven last week and it smoked up the house, Julie is obsessed and fraught with anxiety around cooking food in the kitchen.  Last night when I came home from work, she was weeping at the steps of the garage because the house "smelled horrible," because Beth used the oven which still had some splatters in it from the chicken that hasn't burned off yet so that caused her some grief.  I actually told her to go out on the driveway, sit there and stay until she can control her emotions over this.  It took her about 20 minutes, but it worked.  When she came back into the house I told her that I was very angry that we have to continue to have the same conversation about smells; they are not permanent, they will not hurt you, and they go away, yet she argued back that the smell of the horses she's around are not the same as the smells in the house.  I argued that they are the exact same thing.  The only difference is that she is not in control of the smells that she has not allowed herself to relax around.  She has a choice to make about smells; either let them control your emotions, or you control them yourself.
• I thought that was the end of it for the day.  That is, until I made popcorn.  The good news is that she actually stood over the popcorn as it was popping (yes, we actually use the old fashioned skillet, oil, butter and electricity) and said she's controlling herself because she likes popcorn.  However, after the popcorn was ready I noticed her tucking her pony tail in under her shirt so that it would not smell like the popcorn.
• For the past two weeks since the chicken roaster incident, she has kept both her bathroom and bedroom door closed so they will not smell like the kitchen.
• Tonight when Beth made stuffing for Thanksgiving dinner at my sister's house, she fell apart because the house smelled like stuffing.
• When we got in the car tonight to go home from my sister's house, Julie started complaining that her hair smelled weird.  By the time she got home she was crying and weepy about it, but I refused to smell the hair that she pushed into my nostrils demanding I agree with her.  We managed to get her to brush her teeth and go to the bathroom for her bedtime routine when out of nowhere I heard, "Oh my gosh, NO!!"  She came running to me in my bedroom to show me one of her beautifully long fingernails on her thumb had ripped pretty low into the nail bed.  She fell apart saying she was a stupid idiot and always making things worse.  Well, after waiting for her to calm down and listen I sat her on the bed to talk her through her emotions.  The key was to help her keep it in perspective.  Here's the mantra I went through:
• Julie, remember what you were going through two months ago?
• "Yes."
• How did your fingernails look then?
• "They were gone."
• Why were they gone?
• "Because I pulled them off."
• And how did your toenails, eyelashes and eyebrows look?
• "They were gone, because I ripped them out."
• So, fast forward to today and tell me, Julie, how are your toenails, fingernails, eyelashes and eyebrows now?
• "They are there now."
• Why?
• "Because I left them alone."
• Julie, you are a beautiful young lady not because of anything on the outside.  It's because of your beauty from inside your heart, your spirit and your mind.  These outward things that are growing and you're leaving alone tell me that you are actually starting to feel differently about yourself; you feel beautiful and more confident.  This broken thumbnail is not important, it's your emotional reaction that is.  How important is this broken nail compared to the challenges going on around the world and in our own city?
• "Not that important."
• That's right.  Keep it in perspective, Julie.  Look at where you are today as compared to two months ago.  You are improving each and every day because you want to improve and we have the right remedy helping you along the way.  This nail will grow out if you give it a chance.  Just keep your perspective in all things and don't blow them out of proportion.  Yes, I get it; at 13 years old you want to look pretty and not have people judge you for looking different or acting different.  I've been there too.  But look beyond yourself and see the world around you and the troubles that God has not put us into.  Keep it in perspective.
• Well, that worked until we started filing that nail down to keep it from snagging more.  She immediately sniffed the thumbnail and said she didn't like the smell.  So, we had to go through the mantra again about using her tools, such as when she feels compelled to smell something that she knows will just make her mad, do the opposite and don't smell it.
• We finally got her to bed at 10:00pm tonight after a 20 minute toilet routine.

Beth and I are going to relax on the sofa for a short while before retiring tonight.  I pray that we, as parents, keep it in perspective too.  Yes, it's aggravating, frustrating, irritating, and sometimes feels futile to keep fighting this moving target.  However, each day there's signs of hope that she is winning the war even when some of the battles are lost.

My prayer for each of you reading this blog can understand that you're not alone in your struggle and God would not have put us in this situation if we could not handle it and still glorify His name through it all.  Yes, it's not fair.  Yes, it's heart-wrenching to see your child go through this.  Yes, it can sometimes make you and your spouse feel miles apart when you need so desperately to be together in this struggle.  But know this; Yes, He loves you.  Yes, He listens to your prayers.  And yes, your family will be blessed through it all.

Happy Thanksgiving to you all,

Mark

A weekend in Corolla, NC

My wife and I were invited to spend the weekend with friends at a cottage in Corolla, NC.  It's been a long time since we've left Julie with the grandparents for longer than one night, so she was a little bit nervous about being without us Friday through late Sunday.  Truthfully, we felt kinda bad because we had to cancel a horseback riding lesson for Julie that was planned for Saturday morning, and she made no bones about how upset she was that we cancelled her plans so we could make our own plans.

We explained to her that in a relationship, you have to continuously remind each other of why you married each other through dates and getaways.  At first, she didn't believe us, but after explaining that this was NOT our attempt to get away from HER, rather a way for us to strengthen our relationship so that we can be better spouses for each other in good times and bad.  I think she got it after a few words of encouragement.

Well, our routine has always been to call her before her bedtime no matter where we are, and so we continued that routine Friday night.  She didn't sound too excited to be left with the grandparents, but she was not upset.  Her anxiety seemed to be in check and appeared to be doing okay.  After the phone call, Beth and I stayed up until 1:00am playing dominoes with our friends and truly having a good time.

Saturday I played golf with two of my friends while the ladies shopped and relaxed together until we returned to the cottage.  Then it was on; Wallyball!  I'd never heard of such a thing but I have to tell you it was such fun to play volleyball in a racquetball court!  I had no idea my friends were so competitive.

When we returned for showers and dinner and another round of dominoes, we made our phone call to see how Julie was doing.  While Julie didn't confide in me she did confide in her mom that she had pulled out a few more eye lashes.  The good news is that after Beth asked Julie if it made her feel any better, the answer Beth got was, "no."  So, she's now more aware of her triggers for OCD type behaviors (away from mom and dad, and tired (my mother-in-law is a really loud sleeper) and those are the times she's at her weakest.  It was a good learning opportunity.

Julie had to go to her grandparents high school reunion, so of course all these people were fawning all over her about how pretty and tall she was (that felt good to Julie because she is shorter than most of her friends at school), but was a very good socialite for the night.  However, she was very anxious about the food they served her.  Before going to the luncheon, my mother-in-law had called ahead of time to request that something nutritious be available for Julie to eat due to her GI anxieties.  She was assured that something good would be ready for her, but instead, they served her chicken tenders and fries.  Needless to say, Julie did not eat that and her grandmother fed her some good food later at home.

That didn't stop Julie from asking Beth, "am I going to be okay?  Will my stomach bother me, because it feels kinda weird."  Of course, Beth explained to her that she was probably hungry after going so long at the luncheon without food and had to wait until she returned to the grandparents to eat.  That eased her mind.

Well, Beth and I returned from Corolla around 6:00 yesterday evening, met Beth's parents at the Wendy's nearby so we wouldn't have to drive all the way to the grandparents house to pick up Julie.  On the way home she seemed very cheerful and laughed about how much food grandma gave to us (she has a really bad habit of sending food home with Julie and it's just come to a point of laughter now.  I used to get so upset over it, but it's not worth it anymore) and she even wanted to feed Julie "toast" every time she ate, which just tickled Julie's funny bone.

Tonight, Beth had roasted a chicken in the oven and when I returned home from work the entire house was covered in a fog of smoke from the roaster.........and Julie was fit to be tied.  She had apparently been raising her voice and screaming about how she's going to smell like chicken and didn't like it.  Her OCD around smells was on very high alert and she wasn't handling it very well.  So we opened all the windows in the house (thank the Lord for small miracles like a warm evening) and turned on the furnace blower to get rid of the smell.  It worked after about an hour, but it took Julie all night tonight to get relaxed to the point she could go to bed.  The good news is she went to bed early (8:45pm) and will most likely get a full night's sleep.

Still very sensitive to smells and reacts very negative to them.  We're on week five of the Stramonium Homeopathic Remedy.  When will this stuff start working??

Lord, heal my child!

Amen.

Manicure for a reward

So, my wife and daughter had a good visit with the homeopathic doctor and after reviewing the status of the past four weeks.  Even with all that we posted about her routines and habits, we mentioned that the past two days we've seen glimpses of improvement. We even mentioned that she had her nails done and that she was not happy about the smell once we got back in the car.

The doctor didn't want to bias her work by reviewing this blog because she feared it would make her micromanage our daughter's progress plan.  Furthermore, she stated that there are over 600 remedies in her database to deal with our daughter's situation.  Dr. Shelly is using Stramonium because she states that most of her symptoms seem to be coming from post traumatic stress disorder and is working from that as the primary issue with her anxiety disorders.  So, she is still very pleased with her progress and was especially pleased with learning of her recent improvements.  The recommendation from Dr. Shelly was to continue with the current remedy and dosage (3-4 pellets each day 20 minutes before food or drink and no food or drink for 20 minutes after) then come back in four weeks or call before then if any significant developments.

Additionally, our daughter had a session with her therapist today (they have the day off from school today and tomorrow) and seems very uplifted after the session.  What we're encouraged by is that the past two days she's reduced her toilet routine by half at bedtime.

What's discouraging is that on the way home tonight I had to stay on the phone while driving to calm her down while she removed the fingernail polish from her nails because she hates the smell of the polish remover.  What's encouraging about that is that she wanted to do it herself regardless of how much she hates it.  She sobbed and cried, but eventually she got through it with my encouraging words.

What's discouraging is that while I write this our daughter is now 30 minutes still sitting on the toilet even after yelling up to her that she's been on the toilet entirely too long again.

Perhaps she'll still do better with not being scared to sleep with the light off in her room and not yell out to us that she's scared even after we leave the room.

Well, it's now an hour later and she just came downstairs to cry.  She admitted to pulling out some eye lashes while sitting on the toilet and just "couldn't get off the toilet and got bored, so I pulled out some eyelashes."  My wife and her argued about, "Now my eyelashes are all curled wrong from pulling them out," and grabs her mother's glasses to put them on her to prove that her eyelashes are "jacked up" and my wife didn't agree with her, and now there's sobbing and arguing about them being curled wrong.  I overheard Beth asking Julie if she felt like she let herself down now, and Julie said, "yes, now I have to start all over again!"  Fortunately we knew what that meant (I want to pull all of them out and start over again), so Beth said, "That doesn't mean you have to pull them all out, just let the ones you pulled out catch up with the other ones."  We'll see if Julie cuts herself some slack.  Beth explained to her that there will be set backs on the road to recovery, so don't be so hard on yourself.

Lord, heal our daughter.  In your son's name, we pray,
Amen.

Stramonium

It's now been close to four weeks on Stramonium and we're still seeing the following occur:

1. Cannot get off the toilet in a reasonable amount of time.
2. Takes upwards of 3-4 visits to the bathroom every morning before school.  When asked if anything is coming out she says yes, however when you listen you only hear pee for the first 20 seconds, then nothing.  Of course if she's pooping you don't hear it.  Beth has checked the consistency and volume on an irregular basis, and says some days it's a lot, others not so much.  The speckling of the feces has gone away and the consistency is still that of "soft serve ice cream."
3. Nighttime routine still consists of trip upstairs after hugging both of us, walking upstairs, brushing her teeth, then sitting on the toilet for at least 30 minutes.  However, the past two nights she's been reducing that down to 10-15 minutes (after a therapy session with her therapist).  Also, the past two nights she has not bounced back out of bed after saying prayers.  Both my wife and I have praised her for this and mentioned how nice the past two nights have been at bedtime.  We made sure we told her how much we enjoyed the past two nights and look forward to continued improvement.
4. Another improvement the last two nights has been no longer calling us after 10 minutes of being in bed in the dark.  Again, I'm sure that's because of the therapy and perhaps the remedy kicking in finally, but unsure at this point since it's only been two nights.
5. Still has anxiety around foods.  As I mentioned in the past, she had a horrible experience in January at the children's hospital with being "unclogged," in a most undesirable way and how she was warned that she is the only one that can control this with proper diet, exercise and relaxing and going to the bathroom when she feels the urge.  I'm sure that experience along with the instructions have compelled her to compulsively go to the bathroom due to a "sudden" urge.
6. Still avoids strong smells in the air and on her body.  I asked her to help me warm up the beef stir fry last night at dinner and refused because she didn't want to get the smell on her.  In fact, when my wife made the beef stir fry the night before, I came home from work and Julie was upstairs trying to avoid being near the smell and was weeping when she came downstairs for dinner, saying, "I just don't want the smell all over me."

On a brighter note, her fingernails are long and the skin around them is being left alone.  Her eyelashes have been growing in significantly and you can actually see another row of them growing in to make them thicker and healthier than ever.

She cannot stand the taste of the Elderberry extract and jokingly says, "I wonder if Dr. Shelly might have gotten the bad taste of the Echinacea mixed up with this Elderberry 'cause this stuff is nasty!"

The Vitamin D liquid goes down very smoothly and there's no aftertaste.  She's taking her vitamin without any skipping and still takes VSL +3 Probiotic to protect her GI system.

We have an appointment with Dr. Shelly tomorrow morning and will hopefully get the go ahead to take Julie off of the prophylactic dosage of Keflex (750mg/daily).

Short and sweet

Over the course of the last 4 days, Julie has maintained the same routine for bedtime.  We'll tell her it's time to get ready for bed and she'll eventually go upstairs, but not until she asks for hugs, finds something to distract her, then we tell her again to

For starters

We decided to keep a blog of how our daughter is doing as we treat her PANDAS symptoms with a Classical Homeopathic Physician, Dr. Shelly Clevidence, ND.  For a complete blog of where we started and how we ended up with the homeopath, please visit A Hidden Journey.

Dr. Clevidence met with my wife and I on a warm day Monday, October 3rd at 5:00pm.  I had arrived at the conclusion that Dr. Clevidence would be our best option for starting off with classical homeopathy after doing much reading, especially from the blog The Light and numerous others touting the efficacy of natural homeopathic remedies that have dramatically improved and, in some cases, cured a child of Autism and PANDAS.

Our doctor has had experience with numerous children with anxiety and various types of issues, this will be her first experience with a 13 year old girl who has been fighting PANDAS since she was 4.  The doctor provided us with a CD to listen to that explains what to expect from natural homeopathy and how to help them pinpoint the exact remedy that will help lift the fog from our daughter's mind.

Our daughters symptoms as of the meeting on 10/3/11 were as follows:

• Strong aversion to smells, especially strong ones that could permeate her clothes or get into her skin, especially her hands, such as:
• fragrant soaps, shampoos/conditioners (will not put conditioner in her hair)
• strong cooking smells, such as when my wife and I stir fry beans in oil, scrambled eggs or omeletes.
• Restaurants such as Subway (strong smell of baking bread), anyplace that serves fajitas
• High levels of anxiety around
• fear of the dark (sometimes to the point she sleeps with the ceiling fan light on).
• school/homework
• bowels (in January 2011 we had to have her "cleaned out" due to impaction.  Basically she was holding it in).  Now she goes to the bathroom anywhere from 3 to 10 times a day because pee or poop "suddenly" needs to come out.
• Bedtime routine takes anywhere from 30 minutes to one hour, all around going to the bathroom and pushing for all she has to get it all out (even if there's nothing there).
• Raging anger at times with screaming to the point of exhaustion.
• Ripping fingernails off and toenails.  Once to the point we had to go to podiatrist to remove a sliver of a toenail that was infected.
• Pulling out eyelashes out for a couple of years and, at times, her eyebrow hairs.

Yet, with all these symptoms, she has been able to maintain healthy friendships with girls at school, is an honor roll student since elementary school, and hides her symptoms from her peers as best as she can.  She has a close knit group of girls that she has confided in and, to their credit, they have kept the secret and in some cases have helped her through some hard times during sleep overs and parties.  Heck, one friend even told her, "No big deal.  I have ADHD.  I take pills.  Big deal."

What's even more fascinating is that some smells have no affect on her.  Even some things she does with her hands don't bother her, like:

• Riding, grooming, washing horses and even mucking the stalls.
• planting flowers with daddy.
• Cooking and preparing eggs, muffins, etc...
• Doing the dishes

Anyway, here's the chronology from the week after we saw Dr. Clevidence and we picked up her remedy as prescribed.

REMEDY PRESCRIBED: STRAMONIUM
DOSAGE: 3-4 PELLETS/DAY TAKEN 20 MINUTES BEFORE FOOD OR DRINK AND NO FOOD OR DRINK 20 MINUTES AFTER DOSAGE.

We chose to give it to our daughter in the afternoon right after returning home from school.  She usually has a snack before she starts her homework, so instead, she gets her remedy, then 20 minutes afterwards, she continues with her snack.

Chronologically here's what's happened since then:

10/10/11
Monday night (has not had her first dosage of the remedy) had a really bad dream.

10/11/11
Tuesday afternoon began remedy.
Tuesday night slept with light on.

10/12/11
Wednesday night slept with the light on.

10/13/11
Thursday night slept with light.  She was much more difficult with helping her with her homework again.  My wife and daughter are so much alike that when Julie has a frustrating homework assignment and Beth attempts to help her (whether she asked for help or not) they exchange very short/terse words.  The good news is that when my wife feels she's being talked do with no respect, Julie gets sent to her room until she can talk to us with respect and calmly.  Usually the threat of being sent to her room is enough and she calms down.

10/14/11
Friday night Julie slept with the light on, but promised that she wouldn't need it after this.

10/15/11
Saturday night Julie did not sleep with the light on, however when we tucked her in, she wanted the door to her room cracked open.  She has made it a regular ritual now that within 30 minutes to one hour after she goes to bed, she'll yell, "Mommy,"  and either Beth or I will yell up to her, "What, Julie!"  She responds this way every time; "I'm scared."  To which either we'll go upstairs and calm her down and tell her she's safe and there's nothing to be scared of and, usually, she'll go to sleep.  Other nights we'll yell up to her that she's fine and go to sleep.  This time when she did it, we told her she was fine and to go to sleep.

10/16/11
Sunday afternoon.  Julie has left her eyelashes and fingernails alone for 21 days.  I had placed a reward out there for her that if she did leave her fingernails alone for 21 days, she and one of her friends can get a manicure.  So, she took one of her friends with her to a spa and had their nails done.  You could see the terror on Julie's face when the manicurist put oil on her cuticles.  While we told the lady not to put lotion on Julie's hands I don't think either of us knew there was oil for the cuticles.  I asked Julie how she was doing and was quickly told, "FINE," in a quiet but silent-screaming voice.  She was visibly nervous.

Later after dropping her friend off at home, our daughter fell apart in my hands over the smell.  She cried and hugged me, but also yelled that the smell would never come off as she washed her hands in the sink with just water for several minutes.  We got her out of the house for a walk to distract her and she was better.  She was happy she did it, but was not expecting oil on her fingers.

Later Sunday evening we took her to church for youth worship, but when she came home and took her shower, we heard her crying in the shower because her hands still smelled like the manicure.  She was also scared to get in the shower at all without Beth in the bathroom with her.  "What if the smell doesn't come off," was her worrisome question.  It was after 10pm before she made it to bed because of sitting on the toilet for 30 minutes, but still required the door to be open. As usual, less than 30 minutes after being in bed she called for mom because she was scared.

10/17/11
Monday it was 9:50pm before she went to bed.  She stayed on the toilet for 30 minutes until we demanded she get off the toilet and go to bed.  Again, the door to her bedroom stayed open and called for mommy because she was scared.  We told her to go to sleep, she's fine.

10/18/11
Tuesday night she was on the toilet again for 30 minutes during her bedtime routine.  Now she's playing the Nintendo DS while on the toilet.  She will not get off the toilet until 2 minutes until 9pm, which is the bedtime goal in order for daddy to play the guitar and sing to her at bedtime.  She finally went to bed, but was scared.  The good news is that this time when we asked if she wanted the light on, she said she did, but then changed her mind and we left it off.  She got herself up at 11:10pm to go to the bathroom again.  Beth still thinks she was sleepwalking and then suddenly woke up when Beth asked her what she was doing.

10/19/11
Wednesday night - same bathroom/bedtime routine.  Went to bed, was scared, told her she was fine and to go to sleep.

**NOTE:  Not to get gross, but since taking the remedy and as of Thursday 10/13, Julie's poop has been "speckled".

10/20-23/11
Same bedtime routing, still sitting on the toilet for 30 minutes and still scared 30 minutes later after we leaver her room.  On 10/23 Julie wanted the light on in her room and I refused.  She managed to go to sleep anyway.

**NOTE:  She wanted to review Science & English notes one more time after watching the new series, "Once Upon A Time," which delayed her bedtime (very deceitful since earlier in the day she said she was ready but she probably was not ready and lied to us to get to see her show).  In bed by 9:54pm.  The next day she lost her cell phone privileges for a week for being dishonest.

10/24/11
She took 3 bathroom trips during the afternoon and evening and complained that her poop is not coming as much now.  Beth and I both told her she's back to normal now so probably will not be as much now.

Bedtime was still close to an hour preparing with the above routine.  At 3:00am Julie called Beth to turn on the ceiling fan in the room (Julie will not get out of the bed in the dark).

4:00am Julie called for mommy saying she was scared.  We have our bedroom right next door to Julie's so we simply said from our bed that she's fine, there's nothing to be scared of and that she's safe.  I even told Julie that this is getting ridiculous.

10/25/11
Same routine, however this time she yelled down to mommy as Beth and I attempted to watch TV together that she was scared 3 TIMES before 11pm.  Same routine of telling her she's fine.

10/26/11
Bedtime still taking 30  minutes for bathroom.  Julie still has the goal of being in bed by 9pm so I will play the guitar, but now she's getting in the bed at 9, yelling down to us, "Daddy, get the guitar, it's 9 o'clock."  Then she'll jump out of the bed after we've said our prayers and I begin to play and say she feels the pee coming on "suddenly," and has to pee.  But she still sits on the toilet for another 15 minutes.  I told her last night (while I played the guitar) that this is OCD.  Having to constantly go to the bathroom and pushing with all your might to make something come out that's not there is OCD and she needs to talk to her therapist about how to deal with her obsession with going to the bathroom.

10/27/11
**NOTE: This has been a problem all 2011 since Julie had to be cleaned out at CHKD with Nulytely over a 24 hour period due to her not pooping on a regular basis.  She was impacted so this was the last thing to do after numerous attempts with Miralax, prunes, and chewable tablets didn't work.  Here's the problem; She sits to eat breakfast, jumps up to go to the bathroom.  Sits 10-15 minutes and slivers of poop come out.  Other times nothing comes out, but repeatedly says, "It's right there," and still other times it's a bunch of poop that comes out.  Still, by the time she leaves to go to the bus, she has been on the toilet 3-4 times in 1 hour for anywhere from 3 minutes to 30 minutes.

Tonight she ran to the bed by 9pm and immediately jumped up to run back to bathroom to put Vaseline in the corners of her mouth (her braces make her salivate and after a night of sleep can chap her lips in the corners).  She finished that, and still went to the bathroom again (just went less than 5 minutes ago).  15 minutes later she went to bed and still expected me to play the guitar.  I said no.  She was in bed for 3 minutes and got up to go to the bathroom again.  This time I left her bedroom while she sat on the toilet.  Beth tucked her in after washing her face in our bathroom.  Later, Julie yelled down to us pleading for one of us to come turn on her ceiling fan light.  We said no less than 3 times that if she needs the light on then she is to get up and turn it on herself.  She refused and Beth had to reassure her that she's safe and she has her nightlight and is fine.