Sunday, October 27, 2013


A couple of days ago my daughter was having an episode.  Screaming, yelling, and frankly too much frustration on my part (as well as hers).  I know it's ridiculous--we've been going through this for so long.  I should be able to operate every day with the realization that my daughter cannot function like the typical eleven year old.  Yet every day I get to the point that I am expecting her to behave like one.

Actually, when I hand her a book to start reading (we attempt to homeschool her) or tell her to do anything--I know in the back of my head that she is not going to do it.  Yet my frustration over the fact that she won't do it quickly escalates.  I've got other kids watching this.  Mom telling her to do something and her not only ignoring it but getting extremely ugly, calling mom stupid, etc.

My daughter has lost so much and can function only minimally at this point-eating, sleeping (up all night and then crashing), sometimes, after intense frustration and fit-throwing, able to get dressed appropriately to go to church or choir.  She cannot get schoolwork done or keep even a pathway cleared in her room.

Often, we have to restrain my beautiful girl when she is raging.   There is no hiding her raging or us having to restrain her from my other kids.  Of course, I know this is not a good thing for my other kids to be bombarded with on a daily basis. Of course.  But what does a family do?  We are family.  And although we have often considered hospitalization or a special boarding school, I know that this would not allow for her to be treated for any of the true pieces of the puzzle.  She would immediately be taken off of antibiotics, supplements and put back on psych meds.  And puch meds have never worked well or for long.

So we've held on to this situation while continuing to search for answers.  Desperately search.

The other day after a pretty regular episode, which included her screaming that I don't love anybody, nobody loves her, she just wants to be loved, I got out the scrapbooks that included when she was born.  we looked at those pictures, and I reminded her of how much we all wanted her and were so excited when she got here.  After about 3 minutes of continued ugly commentary from her, she began to soften.

I noticed how much younger my husband and I looked.  But I also felt the mom that I used to be.  I saw the hope and positive attitude in my eyes.  I felt that all-immersed mom feeling....the feeling that came long before me needing frequent breaks from the screaming and constant "line in the sand" moments that often happen several times a day now.  I saw the me that thought that the intense love I have for my children would fix anything that could possibly come up.

And I wondered if my children even remembered that mom.

Yesterday, in the midst of all of the normal, I had one of the few clear moments I'v had in a while.  In the morning, my four year old tried to wake Sweet Girl up by hitting her with a book and jabbing her with a pen several times...not normally her nature.  And then later when I told her she couldn't watch Dora on the computer, she asked all the other kids how she could get the computer without Mommy knowing.  That sneakiness has not been her normal, either.

And my clear moment looked like this:  Constant chaos and fighting IS my youngest daughter's normal.  It has been this way every since she was born.  And what kind of parent lets their child grow up with this distorted state of normal?  This will certainly shape who she becomes.  We will continue to search hard for answers, including methylation answers, auto-immune answers, lyme answers.  But if things don't change soon, we will have to make some hard decisions in the best interest of ALL of our children.  

Please, Lord, bring some relief soon!

Thursday, October 24, 2013


I know that I haven't been on this blog much at all.  I can't even take the time to explain why.  But I will tell you this,  without any evidence to point me in this direction.....I know that my girl will get better.  I know that God is working out a fantastic story for this girl.  And in my mind I picture a day when we see people who have known us for years, and I will say, "Let me introduce you to my daughter."  My beautiful daughter.  Even though I haven't seen her in a long while, I know that she is still in there.

In the meantime, I will give you this update...perhaps you will find a piece of your puzzle, or maybe you will share a puzzle piece with someone you know who is searching for their child (or maybe you will share a piece with me!)

We have been treating Lyme for six months.  With no significant change.  Two months after we started, we had an improvement in her sleep, which, I kid you not,  was a huge thing.  But at our appointment at that point, we switched meds, and we lost that improvement and then some.  Sweet Girl is now routinely up until 3, 4, 5 o'clock in the morning.  And she is more gone in a lot of ways than she has ever been.

However, I do think that she is not as rage-y as she was earlier this year.  Rage was at a level 11 on a scale of 1-10 in March, and now, perhaps it's an 8.  Meaning, it doesn't go on all day every day.  But she is having rage episodes several times a day with wilder antics than before.  In between she can be withdrawn, playing with her sibling, drawing, tearing apart the pantry looking for food, but she can calm down after a while.

She is extremely oppositional, to say the least...doing absolutely nothing I tell her to do, boldly disobeying me even as I speak the words, lying while looking me in the eye, destroying property every day, making the biggest messes and then not being able to clean them up.

So after 6 months of no real improvement, I've asked around on the boards and gotten some great suggestions.  We are now waiting for our KPU (pylourria) test results.  Dr.  Klinghardt (not our doc) believes that 80% of people with Lyme have KPU, and this is key because no matter how much you kill with the antibiotics, you are not able to properly detox.  If you have KPU, you need to supplement with several vitamins, the main ones being zinc and B-6.  Interesting.  My son's labs from two years ago show him to be pretty low in those things, among others.  Relatively speaking, this is an easy fix.  But a careful one since the high doses of zinc that might be needed can cause heavy metals to move, and it's important to have a way to be getting rid of those.  KPU can be genetic, or it can be brought on by some stressor....even an illness like Lyme.

Secondly, all of my children have a heterozygous gene mutation (one copy--either from my husband or me, but not both) of C677.  This means that they cannot use regular folic acid.  In fact, folic acid can build up and cause issues in itself.  But folic acid is crucial, so they need it in an easier to use form...methylfolate.  And they need methylB12 to go with that.  Again, this is key because people who have this gene mutation cannot....detox effectively.  Hmmmm.....starting to see a pattern here.

In fact, I have heard stories from people who said that treating whichever issue that had, dramatically improved their situation.  Quickly.  Neither is going to be the end all and be all, but one or the other or both might remove a huge roadblock for us.  (For more information about the c677 gene mutation, go here

And thirdly, we have our first appointment with a neurologist in four days.  We are counting down the seconds.  Seems silly, with all that Sweet Girl has been through, that we have never seen one, but at this point, I think it's wise to cover this base.  AND....seems more information is coming out about autoimmune encephilitis...(sometimes Hashimotos's Encephilitis).  We did some basic bloodwork and found Sweet Girl's TPO number to be high.  Her regular thyroid tests, like TSH are great, but the TPO could point toward an encephilitis or some other type of autoimmune issue (which PANDAS is!)

I am hoping that with the TPO, the fact that we have an autoimmune history as long as my arm, the fact that my daughter has lost math skills and cannot function academically and the fact that we did all those years of psych meds with no sustained improvement, the neuro will look for encephilitis.

Whatever it is, I ask desperately for your prayers.  Pray that God will heal my girl's body and quench the fire in her brain.  Pray that God will lead us to the right answers and provide for us to follow through where he leads us.  Pray that all of us are more like Him and can handle the stress of another day in this kind of life.  Pray that we can all love like Him. Pray that He will work it all out for His glory.

My daughter needs a break.  Her siblings need a break.  Her parents need a break.  We want our family back.

Tuesday, April 2, 2013

A Legacy

I used to drive past a cemetery on my way to drop off Sweet Girl at her school each morning and each afternoon.  Often, there was a funeral procession entering the cemetery or a graveside service in progress.  I never thought too much about it except that I certainly didn't want to be there anytime soon.

But now I am looking past that place and wondering.  One day, when the how and the date are past, there will be something that is left.  And that is the legacy that I will leave behind me.  Not my husband's legacy, not my family's legacy.  My legacy.

What will be the legacy that I leave my family?   

When I drive past there these days, it always starts me thinking specifically about how my children will remember me through this most difficult time.  If this season of our life is over soon, will I have the chance to regain who I thought I was as a mom?  Will I have the opportunity to get back to the legacy that I thought I had begun?

The legacy that I wanted to leave was one of presence.  Of "look you in the eye" and pay attention to the details that are so important to a seven-year old dog-lovin' cowboy, a three-year old little mommy, a sixteen-year old girl who is figuring out who she eleven-year old who loved to read with me.

That legacy would put my husband in a prime position in our family and make our home a calm in the storm.  The legacy that I wanted to leave says, "You are so very important to me."  It puts God as the main presence and healer in my life.  That legacy relies on Him and not on myself.

Maybe I'll have the chance to get back to that legacy.  Maybe Sweet Girl will soon recover (at least somewhat), and I won't be the sworn enemy, the personification of all evil in the world to her.

Maybe I can get back to being the mom that I wanted to be instead of the mom who has no time right now because she is on the phone with the doctor's office going over test results, instead of the mom who is too tired to push you on the swings because she was up so late messaging another PANDAS mom and googling "detox solutions".

I don't want to be the mom that forgets to say prayers with you or pray FOR you because she is restraining your raging sister (or YOU).  I don't want to be the mom who tells you to take your sibling out of the room while I deal with your raging sibling. And I sure as heck don't want to be the mom who is angry and loses her temper after being called a selfish brat for the   fifteenth time today.  

I don't ever want to give you the impression that you are in my way.  I don't ever want you to feel anything less than precious to me.


If today were my last day on this earth, I think the best legacy I could hope for would be:


Perhaps that is enough for today.

Monday, March 25, 2013

Who Would Dream This Up?

Pardon me, I am feeling a little sour today.

Back to the pediatrician we went today--to confirm my suspicion that strep has not left us.  First I took my sweet girl, who is again....not so sweet.  She had a big, matted mass of hair right at the nape of her neck which she would not let me touch.  The intensity of her not liking me had come down a little after a couple of Advil, but she was still far from kind.

The nurse, who last visit had to help me hold sweet girl down for her Bicillin shot and seemed shocked that my eleven-year old would tell her mother no, called us to the door when it was our turn.  Her face showed no sign of what must have been going through her mind as she realized it was us.

Sweet girl was all smiles with the staff and surely seemed awkward, but not a threat by any means.  The nurse seemed puzzled when I had no definite strep signs but thought that she still had strep.  I sent sweet girl out of the room with her little sister and reiterated that my daughter is raging at home, has an autoimmune issue related to strep and other illnesses (PANDAS/PANS), and told her that I had to be sure that we were clear of strep.  I could tell that she didn't understand and thought that maybe I was missing something.

When the doctor came in, I watched as he seemed to be reading notes from the nurse and saying, "Hmmm."   He, too, seemed puzzled about why we were there, said her throat looked great.  She seemed fine.  He said he would do a throat culture and see what grew rather than a rapid strep because then we might get a false positive.  Ummm, ok.  Maybe.  But I still wanted it.  Couldn't convince him to do both.

Sweet girl took little sister to the bathroom at this point, and I took the opportunity to tell the doctor, "You have no idea what is going on at home."  I told him about the holes in our walls and the constant raging.  He said with a smile, "Yeah, but it doesn't last long, does it?"  like I must be exaggerating.

I looked that doctor straight in the eye without blinking....the look that says, "I am as serious as things get."  And I said, "Yes, it does last long.  Like all day.  Just this morning she pulled out a knife."  To which the doctor replied, "What was going on at the time?"  (like this is an appropriate response for a kid in any situation short of being threatened with their life?)  My response?  Again, with unblinking eyes, "We were asking her to take her medicine."

"Really?"  he said.

So we left with the idea that we'll get a call before noon tomorrow telling us what grew or didn't, and I'll sleep on the idea that I don't think the nurse got a good swab.  Sweet girl hardly gagged.  And she ALWAYS gags and grabs the swabs and kicks and becomes indignant.

Thursday, March 21, 2013

I'd Say That's Pretty Accurate

Laugh and the world laughs with you,
Weep and the world goes away.......

I've heard this line from a poem many times, but recently while reading The Book of Virtues by William Bennett, I ran across the entire poem.  I'd say it's pretty accurate.....

Wednesday, March 20, 2013

Strep, You Are Beastly.

Just got back from the pedi, and after leaving behind a portion of our life savings and  almost having to promise my first-born to pay for the four visits, strep tests and Bicillin shots,  we know that four of four children have Strep.  Have I mentioned that even Strep exposure causes a reaction in one of my children...I mean a major OCD reaction in my already constantly raging child?  I think I mentioned that before.

I knew that the visit would be expensive, but I had to have proof, antibiotics and a paper trail on all of my children.  If we cured just one or two, we'd continue to pass this yuck around.  And we still might, but at least now we have a shot--no pun intended.

The visit was interesting.  Interesting because our pediatric group that is all over this medical center city does not believe in PANDAS.  So I didn't really bring it up.  I just mentioned that one of my children had an auto-immune issue and was severely affected by exposure to strep.  I hate to say it, but I think he could tell which one. 

I was in last week with my youngest daughter (3) who tested positive for the third time in 7 weeks.  She was given Augmentin since we had already tried Amoxicillin and Cefdinir.  Yesterday when she was still positive after a week on the new antibiotic, the pediatrician seemed a little confused.  A little like, "This is not supposed to be the case."  He flirted with the idea of me causing a resistance in her by not giving her the antibiotics on schedule (which is not the case).  Before we left I asked him if he saw this often.  He subtly changed the subject.

So I'm wondering if we have a particularly virulent strain of Strep or if our immune systems are not up to snuff.  I tend to think it is the latter.  Because although we are not sick often, it seems that strep lingers in our family.  And I am starting to discover that strep does not always cause symptoms in us.  

Sometimes the only symptom has been a strange "evergreen" smell  that I get a whiff of--seems to come from the nose rather than the throat.  Sometimes there is nausea or vomiting, and sometimes just a headache or even just a warm little hand in mine.  Sometimes nothing.

So I am reading, reading, reading.  I have discovered that lingering Strep cansometimes have something to do with Lyme, and we already know that Lyme is an issue, so maybe....

Anyway, I'm leaving you with a few links about PANDAS.   If you are living with this beast, I encourage you to visit the ACN Latitudes board for PANDAS (for some reason, my link button won't work, but go here:  .  There are other parents there who are trying to figure out this stuff, too.

 And I'm again reminding you to tell everyone you know about the link between Strep and OCD and the host of symptoms that go with PANDAS.

(ugh...none of those links are working'll have to cut and paste them to your browser bar....sorry :(  )

Monday, March 18, 2013

After Oz

Whew.    We are home.  Barely made it.  It occurred to me several times during the last leg of the trip that this could be my last day on earth as Sweet Girl raged out of control in the front seat in major traffic.  

We left  yesterday morning to go to our long awaited appointment outside of Dallas.  Feels like we left a week ago.  I did a very bad thing and stayed up past the wee hours of the morning on Tuesday evening/Wednesday morning because I wanted to have all my records just so to take to the appointment.  I knew that was probably not a good idea.  But I had no concept of just what a bad idea it was.

When I got up on Wednesday, I let my girl sleep til the last minute.  She couldn't decide on any clothes to bring and hadn't packed anything because of it.  She is actually down to very few items of clothing that she is willing to wear at this point, but it still becomes a long and laborious task for her to decide what to put on.  So I put a few things that I have seen her wear into my bag, and we woke her up to get straight in the car.

She was very upset about not getting to pack her own bag and immediately became very oppositional.  We gave her 2 Advil, 2 TBSP of peanut butter and had to chase her around the front yard, trap her in the van and take off so she wouldn't jump out (I know my neighbors love me....)  She insulted and screamed and berated me for almost 2 hours.  Finally, half way there, she was sweet and held my hand as we went into the gas station.  She was pretty sweet for the next few hours and until bedtime.

We ate food of her choosing and went back to the hotel room early to go to bed about 7 or 7:30.  I finally dozed off a little after 8, and woke up at 8:30 to turn off the tv like I said we would and dozed back off.  She woke me up very upset and went on for hours screaming and yelling to me she wanted to go home, she couldn't stand me, no one could, she never wanted this trip, etc., etc., etc.  Once in that time period, she calmed down and actually laid in the same bed snuggled up next to me, but when I dozed off, we repeated the whole cycle over again.

Finally, around 2, she dozed off in the other bed, and I had a chance to get some sleep.

We got up early to be outside the doctor's office at 8:30 for our 9:00 appt.  We went in, Sweet Girl got to play on the swing and some sensory stuff, and we were called back very quickly.  We left the office at 1:00 after an extremely traumatic blood draw which required the nurse, myself and the lab tech to hold her down.

The doc had to leave the room to visit with another patient a few times but spent a great deal of time with us.  He suspected that yeast may again be a player for our girl (wish I could say that was a shock) and tested her for several chronic infections such as H1N1, coxsackie, etc.  The doc gave her an rx for Omnicef (we had been on a month of Azithromycin) as well as an anti-anxiety med.  I do have to get her on a plane to go to the appt in a month, and I am more than a little concerned about how I will do that.  We talked at length about her history, and he asked who would be seeing her for Lyme.  He knew of the doctor that we will see in April and seemed to approve.  We have an appt to review test results in a month.

We left the office, and Sweet Girl was in a terrible state, set off by the blood draw.  The 11 year old girl who had loved me when we went in now hated me and wanted to inform me, once again, that everyone hated me, that she never wanted this trip and was no way going to go with me on the trip in a month(hello, anxiety med for the plane ride).

I planned to eat somewhere that she would like, but she could not find any place that was okay, and now she wanted to go home, and I didn't really want to repeat the night we had before.  So we packed up the car and headed back home looking for a place to eat.  We finally found a Sweet Tomatoes where my girl who always has a voracious appetite ate a handful of salad and a small serving of chocolate pudding.  She said she wasn't feeling well.  I thought she probably had strep again, but the doc had declined to test her since he was giving her a new antibiotic anyway.  I think the blood test was enough.

Did I mention that we filled her Rx?  We did.  Got a little lecture from the pharmacist about the anti-anxiety meds--I would so like to be able to skip them, but....And then we were going to get our nails done.  Except that once we got into a salon to pick out the color, she didn't really want to.

So back on the road we were with not enough sleep, but plenty of stimulation!  She was feeling nauseous, but I gave her a chocolate and her new antibiotic--so excited to maybe bring our girl home!  At least a LITTLE better...

Pretty soon she was back to the irritable side, and we had more insults and ugly ideas coming my way for a.  very.  long.  time.  By the time we got to our hometown, it was dark, and I offered up several places to eat because no way was I going to cook when we got home.  Nothing was agreeable, and pretty soon, I was stupid for even suggesting such restaurants.

I finally stopped at Chili's--she likes their ribs.  We went in and were seated, but she was complaining about what a terrible restaurant that was and how stupid I was--loudly.  The server took my order--Sweet Girl declined--and the server was afraid to look at her.  My food came fairly quickly (wonder why?) and I began to eat while she got more and more upset, half crying, half soft yelling about me being stupid, a pig, etc.  It was so bad that we finally left.

Got in the car and gave her the anti-anxiety med, but she was already hyped up.  Yelling, kicking the dash, telling me to stop, STOPPPPPP!!!!!!  Stop breathing, stop eating, stop drinking, STOPPPPP!!!!!! This soon changed to MAKE IT STOPPPPPPP!!!!!!! and I told her to close her eyes so she wouldn't see the lights going by, but she couldn't, everything was too much.

We got home, and immediately, she couldn't touch ANYTHING.  Not the door, not a person, nothing, and she was SHRIEKING from the car into the house.  We turned on the shower and tried to get her in thinking that would calm her down, but she couldn't get into the shower and stand the feel of it.  She was already naked and now could not put any clothes on.  I shut the bathroom doors as I went out, and she couldn't open them because she couldn't touch anything.  Didn't want me to leave her sight.  And SCREAMING, CRYING.

We couldn't figure out what to do.  It was bedtime, but nobody was going to bed like this.  Finally, in desperation, I remembered about activated charcoal to absorb and attract some of the toxins that were now being moved around in her body.  We gave her two capsules.  She ran upstairs and discovered that her room had been cleaned and screamed and yelled and threw things around for a while.  The husband and I were in our room trying to brainstorm what to do.

Thirty minutes after we gave her the capsules, I exited our bedroom to find her laying on the couch, fully clothed, watching tv and able to answer a question about a toothbrush.


Let's just file this post under--Herxing.

Friday, March 15, 2013

Let's Get Real

I woke up today excited.  Today is the first day of summer, my first day to have all of my kiddos all to myself where I can control diet, supplement times, water intake, etc.  Today makes me feel like with God, I can do it.  We can bring her back to the true her.

That's what I wrote on the first day of summer--almost a year ago.  Yet, here we are still struggling.  Worse than we ever have before, in fact.  I do not think that she is sicker than she has ever been.  She has been on psych meds for four years, and her symptoms have been masked.  How many years can we struggle with this?  How many years can SHE struggle with this?

This is the only family life that my youngest child has ever known.  Most of what my son, age 7, has known.  This is what they think our family is.  But our family is a loving family who wants to play together, love on each other, bring out the best in each other.  Our family is so much more than this mess.

I believe that this is all our sweet girl remembers as well.  She doesn't remember that we were so attached, so loving, that home was wherever we were and there was no need for "escape" or "relief".

Thursday, March 14, 2013


Lions and tigers and PANDAS, oh, my!  Okay, that was a lame attempt at making the unfunny....funny.  Sometimes you gotta' laugh, right?

PANDAS.  If you don't know about it....learn about it.  And tell everybody that you know.  Because it could save the sanity of a child and/or family that you know.  Literally.  Save their sanity.

More and more I am convinced that often mental illness is the same as any other illness.  It is infection or some other disease state whose symptom is behavioral instead of or in addition to "medical".  And PANDAS fits that to a "T".

I could quote a lot of statistics and research here, but I'm just going to cut to the chase and give you the nitty gritty of what I know.  PANDAS is an autoimmune issue in children (but not always) that researchers originally thought was due to only strep infections.  It is an infection that causes a sudden onset of OCD and/or tics and other behaviors.   Researchers have found, this disease can actually be caused/exacerbated by other infections such as chronic Lyme Disease (which many doctors don't believe in or don't know all of the symptoms of or test and/or treat inadequately), mycoplasma infections, staph infections, etc., etc.

Other symptoms of PANDAS are separation anxiety, bedwetting or frequent urination during the day, sensory issues (as in sensory processing disorder), concentration problems, irritability (sometimes this can include aggressive behavior), depression even to the point of suicidal thoughts, immature behavior. The is the short, general list.  

PANDAS is difficult to treat, to be sure.  Add to the lengthy treatment time the fact that many, many doctors and insurance companies do not recognize PANDAS as a disease itself and often refer out for counseling and psychiatric treatment, and you've got a disease that can steal a person's childhood altogether.  It can wreak havoc on family relationships and can rob a family of any savings they may have as well as money that they don't have but borrow to heal their child.

Early diagnosis is huge.  Getting doctors to recognize it is even bigger.  And educating parents is enormous.  Who will fight for a child like their parent?  Not a doctor--not even the best-intentioned one is invested like a parent.

At this point, PANDAS and Lyme and other infections have taken 7 of my daughter's 11 years....and she is not healed....yet.  We didn't even have a clue what was going on until 2 years ago--after we had seen pediatricians, therapists, psychiatrists, autism specialists and been evaluated by the school district.  And even then, we didn't find out about PANDAS through them.  It was googling and questioning and remembering that once, years ago a doctor had mentioned PANDAS and then went on to refer us to a counselor.

But after getting confirmation of PANDAS through Madeleine Cunningham's testing at Oklahoma State University, we still could not get treatment from our local pediatricians who gave us the speech about how PANDAS was unproven, and we had to be careful of following unproven lines of treatment, and by the way, if we didn't come up with some plan for vaccinating our children, we would no longer be seen by the practice (okay, I'm a little disgruntled).

We saw at least 3 local pediatricians who would do nothing but run us out of the office and then found a functional medicine MD who recognized PANDAS but hadn't had enough experience with it to feel comfortable treating it.  And she tested us for Lyme.  So then, after quite a bit of arguing back and forth about whether or not this was real and the true cause of everything, my generous husband and I agreed to see a Lyme doctor several states away.  Ahem.  And may I just say, he was not all he was cracked up to be.  And although we had never taken my girl of off psych meds, we went back to the idea that she must just have bipolar, perhaps brought on by PANDAS and/or Lyme.

Frankly, it was more than we felt we could swing to take us all to the Lyme doc out of state.  I knew that we could not continue to travel the country paying thousands of dollars to doctors who did not take insurance.  And we did the best that we could for our girl.

After two more years on pysch meds with no significant long-term improvement, we were seeing more side effects than we had ever seen before.  To the point that we had to wean down off of meds altogether, had a strep exposure soon after and a very obvious OCD flare until we started antibiotics.  And this brings us to where we are today.  Treatment for PANDAS.  And Lyme. And other infections.

So I end this post by telling you again, if you know a child who has a sudden onset of OCD or tics, tell the parents about PANDAS.   If you are the parent, educate yourself about PANDAS.  And then advocate for your child.  You could save someone's childhood.  You could save someone's family.  Tell everybody you know.

Tuesday, March 12, 2013

One More Day Til It Really Begins....I Hope

Today is Monday.  One more whole day before we go to our doctor's appointment in North Texas.  About a five hour trip for us, but I am so hoping that it's worth it.  This doctor deals a lot with allergy/immunology issues and has helped a lot of PANDAS kids.  So say an extra prayer for us, please.  Hoping that he will be a big piece of our healing puzzle.

We still have our appointment in Colorado for Lyme.  I hear great things about this guy, and honestly, I think he is the first piece of the puzzle that has to be worked out for us.  But I have to get this machine rolling, and a PANDAS doc is a necessary part of that team of docs.  Our Colorado appt. got bumped up from mid-June to early April .  And...we have an appointment with her psychiatrist in early April, as well.  

I have to keep our psychiatrist in the team for a couple of reasons.  First and foremost is the fact that our family is on the brink.  Over the brink, actually.  We are hanging onto the edge of the cliff by our fingernails, and slipping as I type.  I don't want her on psych meds because I want to know that when I see improvement, it is from our wellness plan, not from our band-aid plan.  And on psych drugs, it will be hard to distinguish.  Yet...I can't hang on like this much longer at all.  And I know the rest of our family can't either.

The second reason I need this doc is that our house is that house on the block that could just sink into the ground and be swallowed up whole at any moment.  It's the one that neighbors must see as the house with inexplicably flashing lights, strange noises and screams in the night (and in the day).  We're the family that appears to be shirking our duties when our children march, push and shriek their way out to the van for church and the family that requires three children to sit in the running van for a half hour or more while a parent tries to wrangle a small-adult-sized child screaming, "I HATE YOU, I WISH YOU WERE DEAD IN A DUNGEON, DON'T TOUCH ME!!!!!!" out to the car for school or some other venture.  Even though several of our neighbors know what is going on, I need our psychiatrist who has walked this walk with us for the past four years.  I need him to be able to tell anyone who comes to question, that this is not poor parenting or abuse.  We have been walking this walk with him for years, and we are so TRYING to heal our daughter.

And recently, we tried a therapist.  Two visits.  I thought that would help.  She seemed to be in a place where she was more aware, where she could tell me, "I'm starting to feel bad and irritable."  However, she has since left that place and can only scream and rage.  There is no good time any more, only momentary breaks.  She can't function in a way that would allow her to use any skills to "manage" her behavior or symptoms.  So for right now, no therapist on our "team".

So we're leaving on Wednesday.  Please pray for us.  Pray for an accurate picture of dd's circumstance for the doctor, for me to be able to include everything that is an issue, for dd to feel positive and good about this experience, and for HEALING.  Please pray for healing.  For our daughter who has been so sick for so long.  In a way that alienates her from those that love her most....not being able to stand the touches or hugs of those people, spitting words at those people like venom.  And please pray for healing for our family that is so hurting.

May God bless you and yours and bring healing to each one of you who needs it.

Sunday, March 3, 2013

This Must Not Be Depression

It is 12 am, and I have just walked into the house from a movie.  Alone.  My husband and all the children are sleeping cozily in the den with Little House on the Prairie playing on the tv.  I feel like a good for nothing having been out without them.

All days have been the same here.  Raging, name-calling, insults.  No ability to complete a task or get dressed appropriately. Certainly no ability to prepare for or attend school or do any kind of homework.  I am mentally exhausted.  My head is aching, bur ing, pounding.  I don't want to do anything.  I can't find the energy to prepare a meal or clean up the mess that she has made hole in a rage--chairs turned over, toys and things all over the floor in our schoolroom, her room, the stairs, etc.  broken items in every room.  She hasn't had a bad spell since around noon, but I just want to lay in bed and watch movies.  And sleep.

Tomorrow is Sunday.  And church.  And I know there will be fighting about clothes.  I don't wnt to go.  My oldest daughter keeps wanting to go somewhere, to get out of the house, but I don't want to have to think enough to have a conversation or be pleasant.  I anted to get out and see a funny
Live, but I didn't want to have to drive myself there or back.  Or get myself dressed.  I am dreading g tomorrow.  I don't want to get up.  I don't want to fix breakfast or lunch or drive to chirch.  Or feel like a schmuck for  it wanting to do anything. My head hurts.

This is all worrisome because I have to be functional for this life to work.

Sunday, February 24, 2013

Diary of Symptoms

Sweet girl has been off of all psych meds for 3 weeks now.  Three weeks with no Lithium, Depakote, Abilify, Tegretol, Pexeva and the like?  I never thought we'd survive.

Lest you (or I upon reviewing this for our records) think that these past three weeks has been a bed of roses, let me assure you, it hasn't been.

Except for those first three days.  On those first three days, for whatever the reason, my girl was here with me.  She was the girl that I know.  Not easily angered or flustered.  Almost seeming to understand that she has caused so much grief and so much pain to her sister.  Able to have a conversation with me about that and how to fix it.  The behavior of an almost 11-year old girl rather than a three or four-year old one.  Best buddies with her brother.  She smiled.  Sweet girl has a glowing smile.

Everyone saw it.  It wasn't just my imagination.

But then at the end of the third day, we had a soy peppermint white chocolate mocha.  And over the next half hour she began to unravel.

By no means am I saying that I believe that the coffee is the cause of the unraveling, as I initially thought.  But it is something that makes me say, "Hmmmm....."

After the coffee, we shopped in the mall, and she happily looked at clothes that she might like to wear.  I was imagining her in those clothes instead of the ones with the hanging threads and the ripped seams and the stains that she wears every day.  It was a wonderful time.  But then she started to get irritated with the clothes.  And the people in the mall that were everywhere, and I couldn't get her home soon enough for my liking.

It was that fast.  Something took over.  And that something has waxed and waned ever since.

One of the key points in all of this was the Thursday of my oldest daughter's first "date".  The boy, who had already met with my husband and been coached about treating her right, came over for pizza and a movie and to hang out with our fam.

Sweet girl was fabulous.  A little less mature, but happy, rosy-cheeked, wonderful.  She did not pull any of the stunts that my oldest daughter thought she might. (I wish I had not felt awkward taking a pic--my oldest daughter sat next to the arm of the love seat, Prince Charming sat in the middle next to her, and sweet girl sat on the other side of him!  What a cozy bunch!)

After the movie, Daddy took the two of them out for a walk on the golf course, and I had sweet girl take her shower.  Everything was fine.  Until she turned off the shower.  Then she couldn't put the washcloth down because it had wrinkles, and she couldn't straighten it out.  Then she got out of the shower but couldn't leave the towel because it was wet, and she couldn't straighten it out.  By this time, she was screaming, yelling and out of control, and I was sure that they would all walk in at any moment.  She had to wipe everything down with a napkin, water bottle, pills, everything.  We finally gave her some Melatonin and Advil, and she calmed down enough to get ready for bed.  OCD had returned in a big, wild way.  That fast.

The house was all quiet by the time the troup returned home, and I was spent.  Prince Charming went home, and all had gone well for the "first date".

Tuesday, January 29, 2013

Tender Mercies

My girl has been through hell again lately.  And so have we, her family.  I am usually the target of anything that disturbs her....from being able to hear me breathe to asking her how her day was at school.  We have all endured hours of raging, torn clothes, broken and otherwise ruined items.

In the middle of it all, my girl has softened for a moment, whined to me that she just wants to be nice, beeeeeegggggged me to help her be nice--and in the next moment spit venom at me through hateful words after I tried to suggest something like listening to some music on her ipod or reading a book.  And the next moment, she has begged again, pleaded through a crying voice.  She has been crying out to me to take this agony away from her.

And I have had nothing to offer her.

Just typing about it, rethinking it, I heave a deep sigh.  It's been exhausting.  And hard to always stay out of it, not get sucked in to arguing the points.  I can't comfort her by touching her arm or rubbing her back; she can't stand touch and vigorously wipes off the touch after she jerks herself away.

She has been on Lithium since Christmas break.  Lithium and Abilify.  I know that Lithium helps some tremendously.  But to us?  Lithium feels like water.  Or perhaps poisoned water.

A week ago, her school called me to tell me that she was shaking.  I had left my phone at home, and when I got back and found the message, I thought, "Shaking?  You mean,  more than usual?"  Because shaking has been an issue for her since before we started Lithium.  I called her psychiatrist who, oddly enough, had an opening that morning and agreed to see her.  When I got to school to pick her up, her arms were shaking so badly that she could not drink from a water bottle.  She was sweating and feeling nauseous.  Her speech was slurred (but had been so over the past week or so).

I thought she had lithium poisoning.

Her doctor gave her a cogentin in the office to calm down the shaking and gave me some to give at home.  He said it was a combination of the Abilify and Lithium and told me to back down on the Abilify.

But this weekend, she was wildly out of control.  We would see extended family (we were out of town for a baby shower),  and she'd be able to contain the tantruming, but anyone could tell that something was not right with this kiddo.  Wouldn't really look at people, quiet, strange demeanor, and if we were sort of alone, she would be horrid to me with ugly remarks.  It was like being pecked to death with a very large and pointy beak.

I had to call her doctor.  I was thinking that we were possibly looking at our first hospital stay...and we were out of town.  I didn't think that our other three children and I could safely ride four hours home in the van with her.  And I could see that on top of it all, she was extremely distraught about feeling this way and not being able to contain it.

Her doctor told us to give the med that we had held back on, and somehow, by the grace of God, we made it home the next day.  Luckily, I had an appointment with the doc the next day, and she will be fully weaned off of Lithium in the next two days.  Thank God!!!!!

Last night, after I gave her the smaller dose, we read our devotional book, and it spoke about the prophets in the Old Testament and the fact that they were not always popular.  And it talked about standing for right even when other people didn't/don't like it.

And my girl, softer than I had seen her in a good while, joined us in the conversation.  And she said in the stopping and starting, unsure way of herself that this medicine has given her, "I used to be sort of popular.  But now...."  And honestly, I don't remember the rest of what she said.  It hurt my heart for her.

But then she went on not to mourn any idea that she might not be popular, but to say that she stood up against two others in her class who were being mean to another girl.  It took her a long time to get it out, but she was really thinking about looking out for that girl and standing up for what was the right thing.

And my heart melted.  Because that is the heart that I know is in my girl.  Only a bit more sorrowful and tired.

I love this girl.  She's still in there.