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 In between she can be withdrawn, playing with her sibling, drawing, tearing apart the pantry looking for food, but she can calm down after a while.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 http://www.easytolovebut.com/?p=2782)
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.