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