Hammer and Chisel in Hand

Hello, fellow parents of PANDAS/PANS/PITANDS children.  I know, I know, it's been several months since our last update.  As many of you can relate to, my wife and I spend an enormous amount of time working with our daughter, collaborating with the therapist, and communicating with our homeopath, that we forget there are others out there looking for guidance and stories to help them know they are not alone in this journey.  So, I thought I'd update everyone with what's been going on the past three months.

Our homeopath and the family were really curious about our daughter's response to the remedy.  As I had mentioned in the past, while she was on antibiotics, we kept her on a daily regiment of her remedy since the antibiotics have been known to antidote the remedy.  Once we weened her off of the antibiotics and her system had cleansed itself of the medicine, the homeopath changed to the traditional dosing; one dose while at the office, then wait and see what happens.

Well, we did that with a one time dose earlier this year and, as expected, her reactions were quick and exaggerated.  For about a week after the dosing her symptoms were very high; fear of the smell of food, fear of a "burning" smell, fear of the dark, always looked for reassurance that she was okay, needing hugs all the time, etc...  Shortly after that, however, the symptoms subsided...........somewhat.  You see, this time her symptoms never truly went away as they had with the daily dosage.  Instead, as the weeks progressed, so did her symptoms.  We relayed this information to the homeopath and rather than telling us to come in and we'll reevaluate, she said she needed to consult with her mentor regarding this difficult case.   She asked that we continue to monitor and log her symptoms and she would get back to us.

When the doctor came back to us, she recommended that we bring her in and discuss the plan.  When we arrived at the doctors office, she reiterated that both her and her mentor truly believe we have the right remedy for our daughter, so all we needed to do was adjust the dosage to a higher potency version.  So, at that time, she recommended we dose her with the higher potency one time, and see how things progress, then get back to her in about 4-6 weeks.

So, here we are in the first weeks of April and here's what we've noticed:

1. There are no explosions of emotion regarding her fears of smells.  While she does narrate her feelings about them, needs a hug once in a while, we are able to rationalize with her (that her fears have no rational basis), repeat the mantra that we've developed over the years (Smells cannot......(she answers, "hurt me") and that they are.....(she responds, "temporary") and so on), and she's fine afterwards.
2. Her therapist has helped Julie learn to take accountability and ownserhip of who she is and that, while her history is painful, it does not have to define you.  We're experimenting with hypnosis to see if our daughter can go back in time to the first eye surgery that caused these sudden onset OCD symptoms and perhaps put some closure around those events so she will allow her spirit to move past these behaviors.
3. She's attempting to leave her bedroom door open a little more than before.  She uses her bedroom as a "safe house" where she believes no foreign smells can enter if she just closes her door.  The only problem with that is that her room gets musty smelling and she readily admits that she needs to start opening that door more.
4. A new fear has appeared now relating to my wife's facial cream.  She claims that when mom puts on her face cream upstairs, she can smell it downstairs within 5 minutes.  So, she panics.
5. She's more receptive to using her "toolbox" when the panic starts to happen.  For example, there was one time she and I were just returning from eating out (which used to set her off because a restaurant is loaded with food smells) and she smelled it on her clothes.  Well, her past dictated to her that she must lose control of her emotions every time she got home and was safe.  She turned to me saying she didn't want to "rage," and started to get weepy.  I hugged her, lifted her eyes to me and said, "This is where the rubber meets the road.  It's easy to use your tools when there's nothing to panic about.  It's really hard to realize that these are the times to use those tools.  So, you have a choice to make; you can either panic and let your fears consume you, or you can reach into that toolbox and start using the tools of relaxation like breath control, imagery, and your new hypnosis tools that the therapist is teaching you."  This time she chose to use the tools.
6. We've given her more responsibilities around the house as incentives to earn money.  At least that's what we told her.  The truth is that by exposing her to daily chores, we're teaching her to be more self-reliant and give her a feeling of contributing to the family needs.  So, now her job is to dust and vacuum the entire house once a week (I didn't dictate what day/days that has to be done), fold and put away the laundry, put away the dishes (although she still will not touch the sponge or soap so I have to do the hand-washing), and show respect to your parents and our authority over her.  She's really stepping up to the plate when I ask her to do these things, but we're still working on it with her mother and her.  There's something about a daughter's relationship with her mother that really make it a challenge, especially when they are so much alike.
7. We've begun to use more metaphors with her, such as this:  "Honey, your mother and I feel very strongly that you are really improving lately.  It's partly because of the homeopathy and the remedies ability to help you overcome these behaviors, but the other part is because you are maturing into a young lady and your spirit is much stronger.  There's just this big wall of bricks and mortar that stand in front of you that are keeping you from making that leap into complete healing.  The difference today is that you are standing in front of that wall with a tool in each hand; a hammer and a chisel.  It's like you have the chisel sitting right on top of one of the bricks and the hammer held right over your head ready to strike, but your mind is still questioning if you're ready to swing.  Her response to this is that she is ready, but still has these fears holding her back.  She's so close that she can actually feel it happening, which truly shows us that we're making progress.

Don't get me wrong, folks.  There are days when we take 3 steps back and have to claw our way back to the baseline.  But those days are getting further apart.  My biggest weakness is showing her my doubt, my fears, and my aggravation with her and her behaviors.  I ask that each of you pray for my wife and I that we eliminate all doubt and fear and stop pushing our anxieties out to her and feeding this monster.  I ask that each of you learn from this blog that you are not expected to be perfect, for no man has ever been perfect, save our Lord and Savior, Jesus Christ.  For it is only through His dying on the cross for my sins that I am even able to approach the throne of God and receive His grace.  I ask that He provide absolute peace that we are at this point because of His divine guidance and His ability to show us the path to healing.  I ask that all of you reading this will find peace in His arms as He laughs with you, cries with you, and strengthens each and everyone of you for you know what's right for your child.

So, that's where we are today.  In another 4 weeks or so, we'll go back to the doctor to give an update.  We're doing weekly therapist meetings right now at dusk so we can attempt to get our daughter to a state of hypnosis.  She's receptive to it, but still not truly willing to let go of control.  We'll see how she does this week.

God Bless you all,
Mark

Mid-term Panic Attack!

Our daughter was up until 11:30pm last night studying for mid-term exams in Spanish and Algebra I. She started out with a crying/yelling match between mom/daughter. By the time I got home, they were civil with each other as mom attempted to help calm her down. She was panicking over her Algebra I review worksheet saying, "I don't get this! It doesn't make sense! We've never had problems like this....." After calming down, she realized she knew what to do, but wasn't applying the formulas (slope, standard form equations, etc...). She had over 25 problems to do and was overwhelmed. This morning, she didn't get up until 7:20am and missed the bus. She sat on the toilet forever stating, "It's right there, but won't come out!" We've told her over and over again that if it ain't coming out, it ain't ready to come out (ad nauseum). She didn't get to school until 5 minutes after homeroom started. She's holding A's and B's in all but Algebra I. Right now it's a 72 (very low C) and wife and I are convinced she may go lower than that after mid terms. Should we make her repeat this math class in 9th grade? Do we start the process of getting the schools involved in a 504 or look for ways to get the teacher to lower the amount of homework?

There's the stigma looming in the back of our minds around our daughter not being treated as a disabled child and being labeled the rest of her school years as she approaches high school.  There's also the challenge of not doing anything for your child to help alleviate the stresses of school while she deals with these health conditions.  And there's our own personal anxieties of feeling like we are a family on an island not knowing how to build a boat and get off the island to champion our daughter's cause.  What to do, what to do.

Lord, heal our children! Amen!

3 Steps Back?

It appears that we are back to square one......sort of.  For several days after the ND dosed our daughter at the office, she was doing extremely well.  Seriously, I mean to the point that she actually said, "I dunno how to describe it, dad, but I just feel better about smells.  I just don't feel as anxious about them anymore."  We never thought we'd hear those words out of her.  To prove it, she carried the pizzas from Little Ceasars, started back to doing the dishes after each meal, and with a little coaching had started making positive comments about the smell of food (I told her to overcome these anxieties, she had to turn these negative thoughts into positive ones) and that the food smelled good, I'm starving, and so on.

Yesterday while I was out of the house, my wife called me and said, "Do you hear that in the background?  Yeah, that's your daughter in her room with the door closed screaming at the top of her lungs!"

My wife had baked cinammon rolls in the oven for breakfast, so when Julie awoke and opened her room door she smelled the rolls and fell apart.  Apparently while I was out of the house Saturday, my daughter had requested that my wife not make them for breakfast Saturday morning, which she didn't.  I think my daughter just didn't want mom to make the rolls at all right now becuase she couldn't handle it.

It was awful to hear her screaming and stomping over the phone, but clearly she's made a significant step backward since she saw the ND.

We have an appointment with the doctor next Monday, so I thought I'd share this update with you.  I have a feeling my daughter will stay on the current remedy, but move to a more potent daily dosage.  We'll see.