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Health and Nutrition Kids Meth Exposure Special Needs

CSF Pockets

There’s no way to know, for sure, which of Blythe’s special needs were caused by meth exposure.  It’s very possible that some of them would have occurred anyway, regardless of meth’s presence in her life.

The drastic improvements, though, tell me that at least some of them could be common among meth exposed kids, and so I’m going to discuss each of them, and the things that helped us to cope with them, one post at a time.

CSF Pockets:

Until recently, Blythe had two lumps on her head that were pockets of Cerebrospinal Fluid, trapped between her scalp and her skull. 

Most of the time, they weren’t noticeable to anyone who wasn’t looking for them, although they would often swell with major changes to the barometric pressure in her environment.

Any time the pockets would expand, or if the one closest to the base of her skull would shift to the area directly above her spinal cord,  she would get terrible CSF headaches.  A lot of times she would just be especially cranky during the day, but when she would lay down to sleep at night, the pressure would become extreme and cause her an immense amount of pain.

There were also times when the pressure from the lumps would cause her to have some random symptoms of neurological problems, such as blanking out for short periods of time, or aphasia, where she would use the wrong words for things without realizing her mistakes.

One time, she asked repeatedly for “Bar-be-que” and got very upset with me for not bringing her the ice she was asking for.  Good times!

Managing the CSF pockets was all about preventative maintenance in the form of daily therapy.  The first step was to locate the pockets, which was fairly easy given that I could feel the lumps with my hands.  Sometimes heads are just naturally lumpy, though, so to confirm that a particular lump was a pocket of CSF fluid rather than anything else, I used what I refer to as The Reverse Stud Finder Test.

With the pointer and middle fingers pressed firmly together, a firm tap to the head would normally sound solid, as it would when tapping a stud.  A tap landing on a pocket of CSF, however, sounds hollow, the way a wall sounds between studs. 

The daily therapy involved tapping the lumps, off and on, for about ten to fifteen minutes.  When I kept up with the therapy, the taps didn’t hurt at all, and would actually release endorphins that put Blythe  in an incredibly good mood when the session was over. 

If I skipped days, though, or if the lumps had expanded for some reason, the initial taps were painful and she fought them.  I’ve been smacked, punched and yelled at more than a few times.  What I would typically do, in that situation, was to engage her in some sort of activity and do one tap every few minutes until the pressure dissipated and she stopped protesting.

Most of the time, whenever I told Blythe it was time for taps, she would climb into my lap and allow me to do the therapy without any problems.  Occasionally, she would even ask me to do her taps, or would grab my hand and guide it to her head.

It’s strange for me, now, to massage her head and not feel those familiar lumps that were a daily part of our lives for so long.  I still watch for them, just in case, but it seems that they have disappeared along with so many of her other symptoms.

Categories
Kids Meth Exposure Special Needs Surviving

Self and Other Self

This is very hard for me to say, but here I go.

My daughter is two different people.  Her self, and her other self.

One of them, the one I feel is the real Blythe, is sweet, loving, charismatic, smart and articulate.  She is so incredibly amazing, and when I see her, when I spend time with her… I just can’t get enough.  I am so in love with her.

The other one, though.  This is so hard for me to admit thinking about my own child.  The other one is a child I don’t like very much.  When I see the signs of her eminent arrival, I start to feel a little sick inside. 

The thing about it, is when that other child takes over, I know my baby girl is in there, somewhere, fighting to get out.  It’s for her that I have patience with the other child when she appears.  It’s for her that I don’t give up.  I fight for her as long as it takes, and when I see the real Blythe emerging, I know that everything I do is worth it.

Have you ever seen The Exorcist?  Well, it’s kind of like that, only without quite so much gore.

Over the past couple of years, doctors and various types of therapists have listed the different diagnoses they would have given Blythe, had they only seen her as her other self.

A few:

Since Blythe stopped being exposed to meth in early October, I’ve seen that other child a lot less often.  In fact, I haven’t seen her in over a month, and even then she stayed a very short time and wasn’t really all that awful. 

It was the marked improvement in her health as well as the decrease in visits from the other child that prompted me to look into whether or not meth exposure could be responsible for Blythe’s “issues”.

What I found, in doing that research, is that most children who are exposed to meth are like Blythe’s other self all the time, and I couldn’t find any information on how to help them to get better.  It’s so sad to think about those kids, who never get to be their real selves.  They are trapped inside those other personalities, fighting to get out, just like Blythe was.

They are the reason I’m committed to writing about our experience with meth exposure.  It’s for them that I’ll post everything I possibly can about what worked for Blythe, even though at the time I didn’t realize I was dealing with a meth exposed child.  If even one child benefits from her story, it will be worth the effort.

Every child deserves a chance to be who they are… not what meth exposure made them.

Categories
Addiction Kids Meth Exposure Special Needs Surviving

The Blame Game

Thank you all so much for your support and encouragement on my last post, where I talked about learning of Blythe’s exposure to methamphetamines.

I realize that it’s not my fault for not knowing she was being exposed, but I can’t help but feel a lot of guilt, anyway.  I do feel as though I failed to protect her, but I also know that I did everything I could to keep her safe.

For the majority of Blythe’s life, the world at large has been a danger to her.  Every time we ventured out, we were taking a risk.  Everything she touched, away from home, had the potential to send her into anaphylaxis.  If she so much as leaned her cheek against the counter at the pharmacy, her face would swell within minutes.  That’s just a glimpse into what life was like for her.

I always did my best to keep my fear at bay, but I think I was able to do that, in large part, because our home was safe.  If the world was a battlefield, home was our neutral ground, where we could let down our guard and live like normal people.

I could spend hours telling you all the things I’ve done, over the years, to make sure our home was a place where Blythe could just be a kid, without worries.  All the research I’ve done, the ways we’ve altered our lives to provide the best possible environment for her to grow up in. 

So, to learn that she was being exposed to methampetamines, right here at home, the one place on this Earth that I thought was safe for her…  I can’t explain how it felt, other than to say it knocked me down in a way nothing in my life ever has before.

I worked so fucking hard, every day, to give her a place where she could be an innocent kid.  I did fail to provide that for her.  Through no fault of my own, obviously, but it’s a failure, all the same.

I was really, really angry.  My home didn’t feel like home anymore, it felt like a toxic waste dump.  And I place a lot of blame squarely on the shoulders of the person who was responsible for her exposure, where it belongs.

But I also know how much he loves our daughters, and if he had known it was his addiction that was making her sick, I like to believe he would have done something about it.  It’s hard to know, for sure, given the nature of addiction, but I have to try and believe that, for my sanity.

I’m trying to keep my focus on the now.  Since she has stopped being exposed to meth, her health has improved remarkably and dramatically.  It’s fantastic and amazing, and gives me so much hope for her future. 

For that, I am so incredibly happy.

Categories
Addiction Kids Meth Exposure Special Needs Surviving

Exposure

My girls, Alison and Blythe.  Have you met them? 
Alison & Blythe 2007

Protecting them is my job, and I am damn good at it.

But I failed them, my friends.

I failed in a very big way, and while I forgive myself for my ignorance, I will also carry the burden of that failure around for the rest of my life.

Blythe has a slight obsession with The Adventures of Shark Boy and Lava Girl, these days.  She thinks about them, and talks about them, and tells her friends about them.  Recently I asked her why she likes them so much, and she spouted off a whole list of things.  Then she said, “I like Lava Girl because she’s on fire inside.  Just like me.”

She has been on fire inside since she was two months old.  That’s when the screaming fits began, followed shortly thereafter by “pseudo seizures” where her body acted as though it was seizing, but her brain function remained normal.

She was inconsolable, for hours at a time.  Her tiny little body would stiffen, all over, and she would flinch away from my touch.  I was so afraid to hold her when she was like that, because I thought I would drop her.  So I would put her in her crib and watch her fight against herself.  Every muscle in her body would tense up, “seizing”, and then she would fling herself this way and that.  And scream.  She would scream for hours, even after her body calmed itself. 

She was on fire inside, and I couldn’t figure out why.

I can’t even count the number of pediatricians we saw, those first few months, but not a single one of them had answers. 

None of them asked if she had ever been exposed to Methamphetamines, even though I now know she was displaying signs of exposure.  As she’s gotten older, she’s shown more and more signs, and yet none of the experts assigned to her care – myself included – ever asked the question.  

The thought never even crossed our collective minds that meth exposure might have been contributing to the ever-growing list of problems with her Central Nervous System.  Even if anyone had asked, I would have told them, with complete confidence, that she had never in her life been exposed to meth.

I know differently, now…  and that knowledge changes everything.

As always, my disclaimer:

Please understand that I don’t hate him, I don’t wish him any harm, and I’m not trying to make him look like a monster.  He is getting help for his addiction and his behavior, and I hope he’s able to conquer those demons.

But this is my story.  My life.  This was my reality.  I won’t be silent.