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.

HEADS IN THE SAND!

This posting has less to do with my daughter's journey with PANDAS than it does with the growing visibility of this infection-driven disease and the allopathic medical industries inability to recognize it for what it truly is; disease!

In case you didn't know it, there is a new batch of teenage girls in New York that suddenly, without any warning, developed tics/tourettes symptoms.  All 12 of these teenage girls were good friends and none of them could explain what caused this sudden onset of very strange and unpredictable behaviors.

In a Today Show interview with two of these teenage girls, one of which couldn't even sit still in the interview in the studio, the doctors at a neurology specialty concluded that all 12 of these girls have a conversion disorder or otherwise known as mass hysteria.  Essentially, these doctors have labeled these teens as suffering from a psychological disorder that occurs due to external stressors.

Folks, when are these physicians going to realize the data is showing them that a label of psychological disease is merely a mask to the underlying problem?  These young ladies have probably been infected with strep and it has attacked there brain?  It's like we have to prove that the lab results (Myco p, DNASE, ASO) are not fake!  I don't know if these teens have had lab results that these neurologists could refer to, but if they did they probably would not have come to the conclusion that they need psychological therapy!

Friends, how strange it is to see history repeat itself over and over and over again.  The nature of mankind is to be skeptical, I understand, but can you imagine how Luis Pasteur felt when he first discovered that microorganisms were the cause of illness in people who drank milk, wine, and beer that had spoiled, yet no one listened?

It's as if we're on a witch hunt in the 21st century by branding children as psychological problems.  Think back to the Salem Witch Hunts of 1692.  Have you evern wondered if the girls that were "posessed" by Satan through witches were perhaps, instead, infected by some bacteria or virus?

"The seeds of the hysteria that afflicted Salem Village, Massachusetts were sown in January 1692 when a group of young girls began to display bizarre behavior. The tight-knit community was at a loss to explain the convulsive seizures, blasphemous screaming, and trance-like states that afflicted the youngsters. The physicians called in to examine the girls could find no natural cause of the disturbing behavior. If the source of the affliction

The Salem Village Meeting House where the trials took place

was not attributable to a physical malady, the community reasoned that it must be the work of Satan. Witches had invaded Salem. "

Oh, too far of a reach for you?  Consider this; we push homogenized, pasteurized, hydrogenated, condensed, antibiotic riddled, growth hormone, enriched, sodium benzoate, MSG infested food products on our children each and every day, yet when our children "suddenly" come down with Autism Spectrum Disorders (ASD), OCD, PANDAS/PITAND/PANS, and other immunological disorders we are shocked and have no idea how they ended up this way?  Come on, people!

Our daughter may, or may not have PANDAS.  Her lab results right now show she has no infection, nor are there any indications of a lingering left over infection.  We'll be checking her blood tests again soon to get a benchmark for her progress.  We're staying the course of Stramonium, Elderberry Extract, Vitamin D3 liquid supplement, DHA, and Multivitamin for now and seeing even more signs of improvement.

Until we see 100% healing, we are constantly praying that our society will come to grips with the sins of our own greed for money (cheap fillers, chemical preservatives, and volume increasers in our foods), and the impact it's having on our future.

Sorry if this comes across as the rantings of a lunatic, but God put these concerns on my heart when I heard of these poor teenagers who are scared of what has happened to them and seem to have no reasonable voices investigating the root cause.

Lord, heal our children,
Amen

Happy New Year Everyone!

December 23rd through January 2nd
I do hope that you all had a very Merry Christmas and that our Lord and Savior, Jesus Christ, was lifted up in joyful songs and carols of praise.  My family and I always look forward to this time of the year where we can reflect on the goodness of our Lord, the blessings he's provided us, and reading the Gospel message to one another and to our friends and family.

When Christmas day was over, my wife and daughter and I packed up the car and headed down to Florida to visit with some very close friends that used to be our neighbors.  Now, mind you, our friends know of the challenges we face with Julie's PANDAS/PANS symptoms and the extreme OCD symptoms that she expresses in times of stress and infection, however as can happen with time and distance, they didn't think of the issues until we arrived that Monday afternoon.

Upon our arrival, we all settled in and once everyone came home from work and Disneyland (our friend's niece and nephew were there too) we all loaded the cars and headed to Chili's for dinner.  One of our daughter's biggest smell fears is when someone eats fajitas.  As you all know, they can really have a strong smell from the sizzle seasoning, the green peppers and onions.  I'll be honest with you that I can't stand that smell either and it can sometimes permeate your hair and clothes.  Anyway, our friend ordered fajitas and my daughter grabbed at my arm in a panic and said, "Daddy, I don't want to smell like the fajitas!  Daddy it's gonna smell horrible!  Daddy,"  in a hushed yet emphatic 13 year old's voice.

Well, our friend heard her fearful cries and you could almost see the lightbulb over her head.  The moment she realized what was going on, she summoned the waiter over and insisted that he not bring the skillet of food over sizzling and steaming.  He agreed, however when the food came out, it was still sizzling and steaming.  He did say that the "sizzle seasoning was not included on the plate," but that did little to appease my girl.  She was white-knuckled as she grabbed for my arm and squeezed as if she was about to fall off a cliff and her grip was the only thing holding keeping her from death itself.

Try as I might, my soft encouraging words made no difference that night.  However, because others were around and she was not able to get a moment alone to obsess over this fear, she managed to control her panic by distracting herself with her friend and the cousins.  That first night, of course, with three girls in a room, there was no sleep, only laughter and talking until early into the following morning.

As we've found out with our daughter, sleep is her ally.  The more quality sleep she gets, the better her symptoms are.  Well, on a vacation with friends her own age, sleep is optional in her opinion.  Each day as the lack of sleep compounded itself upon each of them, the symptoms progressed 'til they were very obvious.  Her friend actually started getting a cold the that became worse throughout the week.  Our little girl had progressively hieghtened sensitivity to smells.  One night our friend stir fried green beens with onions, which as you can imagine really made quite an aroma throughout the cooking time.  She got so scared of the smell she closed herself in the room my wife and I were sleeping in and cried and screamed into the bed.  It was absolutely awful.

One morning when we were all trying to get out of the house at a decent time (each day it was closer to noon before anyone moved) and I caught her picking up each pair of jeans out of the suitcase smelling each pair over and over and over again.  I told her to move it along and pick a pair to wear.  She snapped her head around to look at me and very coldly accused me of causing all of her smell issues and that the suitcase made everything smell musty.  I retorted by explaning that this is no one's fault and that she must get dressed.  I don't remember how it ended but I do remember her sassing back to me one more time and I snapped and spanked her butt telling her to never talk back to me like that again and that she was being very disrespectful.

Of course, mom came in after I left for damage control, but by then she was beyond consoling.  What was interesting was that one of the evenings when she was supposed to put on her pajamas, she literally told my wife, "Well, I just decided that I'm going to have to get over the fact that my clothes smell musty from the suitcase, get dressed, and go have fun with my friends."  To hear her say that was truly a sign that she's becoming more and more cognizant of her behaviors and is about to take full ownership of this disorder so she can begin the healing process.

Well, we piled back in the car on January 2nd at 4:30am and drove 13 hours back to Virginia.  On the way home, our daughter slept through the dark hours.  When she woke up we found a Denny's (funny it was the exact same one we stopped at last year) to eat some breakfast.  Well, I shouldn't be surprised at this, but after eating she sat on the toilet there for over half an hour!  Apparently the pancakes didn't sit well with her.  Then, after loading her back in the car and were on our way, she lifted her leg up to her nose and sniffed her jeans.  Suddenly, without warning, she screamed at the top of her lungs about how horrible her jeans smelled after going into the Denny's.  It took over 20 minutes for her to calm down after numerous threats from my wife to pull over to the side of the road and kick her out of the car to calm down before we go any further.  Once she calmed down she was very apoligetic for being that way.  "I'm sorry, Daddy.  I don't like being this way.  I just want to be normal."

The rest of the trip home was uneventful except for the fact that I was in such a hurry to get home that we didn't stop for lunch and just ate nuts and drank 7up and water until we got home and could get some steak and salad from our local Ruby Tuesday's.  What I didn't realize was that our daughter's stomach was so torn up from the Denny's pancakes and voiding herself of every bit of it at the bathroom that she was nauseated and over-hungry to eat.  While she was eating her steak and salad at home (which she complained would smell up the house.......again) she complained that she might throw up.  She jumped out of her chair and hit the bathroom and screamed for us to get her a trashcan while she sits on the toilet.  While she didn't vomit, my wife had to talk her through some deep breathing exercises and relaxation techniques to calm her body down.  She did end up with diarrhea, which leads me to believe she was truly ill from those pancakes at Denny's and potentially had a little bit of food poisoning or at least some serious anxiety around the food.  It took us until midnight to get her to bed that night and still had to get her up early to go to school on the next day.

January 3rd through January 11th
Every day last week, Julie was seriously obsessed with the smell of food and general fear of smells at all.  One night, our girl was so afraid that she moved all her homework and books to the room over the garage and shut the door so she could avoid being exposed to the smell of food.  My wife did a little "intervention" with her and described in clear words that this fear of the smell of foods may grow into something much worse if she doesn't fight back.  She used very explicit words (not vulgar, just very factual regarding anorexia, malnutrition, and failure to thrive) and that seemed to hit home with her.  Not to mention my wife told her that we were never going to give up on her and will never leave her side, so that seemed to help our daughter come back some.  On the first morning back to school, she didn't want to wear one of the hoodies she took on the trip because, "It still smelled like" her friends house.  I raised my voice and demanded she put on the hoodie since it was just washed the previous night so it's impossible for it to smell like anything but fresh laundry.  Boy did I feel horrible that day.  So much so that I bought both my wife and daughter some flowers to say I'm sorry.

She has forced herself to be in front of us as we cook food, even though she'll do the, "Daddy, I'm scared that I'm going to smell like the food!  Am I going to smell like the food?" every now and then, but I'll assure her that even if she smells the food on her or her hair or her clothes, it's temporary and it alwasy does go away.

We had an appointment with the ND just this past Friday 1/6.  This time, I took her instead of my wife.  This was very valuable since I've never really had a private audience with the ND to express my views and observations.  The doctor and I both agreed that the Anacardium Orientale was not affective in producing any healing and that it was probably a sidetrack due to my wife's thoughts that our daughter's problems stem from a self-esteem issue.  I stated that the self-esteem problems come from a lack of her confidence in her ability to control her emotions around her fear of the dark, her anxiety around smells, and the trauma of her past.  The good doctor agreed that what I described to her was more PTSD type behaviors and not self-esteem problems.  With that in mind, the doctor stated that we should do the following for three weeks:

1. Continue taking the Elderberry Extract dropper (2 droppers full/day)
2. Continue taking the D3 Liquid Supplement (3 drops per day)
3. Continue taking the Vitamin (2 per day)
4. Stop taking the Anacardium Orientale and resume the Stramonium.  This time, however, now that we are no longer on the antibiotics, we discontinue the six pellets per day at 6c, rather while at the office, she administered a 30c large dose and wants to see her in three weeks.

Her idea here is that the more traditional Natural Homeopathic remedy administration is to give one large dose and wait to see the affect on the patient.  Most of my research shows that doing this will provide the body the proper dosage to create a change.  Also, the research shows that the symptoms may get worse for a couple of days, but then gradually dissipate.  We went home and cooked a normal meal, which made her anxious, but she did manage to hold it together through some imagination exercises and some deep breathing.

This past weekend was fairly uneventful, however I did have to provide her another round of "intervention" by being overly dramatic saying that if she doesn't overcome this anxiety around the smell of foods, she will never be able to cook her own meals when she goes off to college and lives on her own and will die of malnutrition, so she has to fight back and win!  Obviously that was over the top, but she caught on.  Each night this week she's told us things like, "I promise I won't get mad tonight about food," or "I'm trying very hard tonight to get to bed on time," and "If I can get ready on time tonight, will you play guitar for me?"  I've made it into an incentive now to see how she can accomplish her goals.  I tell her that if she can be in her bed ready for prayers within 15 minutes of going upstairs to start her bedtime routine, I'll play one song on the guitar for her.  If she gets ready in 10 minutes, I'll play two songs.  More often then not, she'll get two songs because she's ready in 10 minutes.

Last night I made a different goal for her.  If she could get in bed by 8:55pm I'd play four songs (since it's almost impossible for that to happen), but each 5 minutes after that that she's not in bed, I take 1 song away.  I've never heard her feet move so fast!  The good news is she got 4 songs.  So, we're rolling along right now.

Well, I'm feeling a little bit lousy right now (head cold with sinus congestion) and my wife is feeling worse than me.  Our daughter passed on these cooties to us so we're trying to wait it out.

All the best to everyone, and Happy New Year!