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.