Sunday, November 15, 2009

Boring stuff

Seriously, boring stuff coming ahead. I have been reading and researching and have found some things out that I did not know. So I am going to share what I found because I thought it was significant to my daughters' circumstances-- Genea that is, not The One I Gave Up Caffeine For.

Start throwing your! I have always found neurology interesting. When I was in the 7th grade, about 100 years ago, I did a report on Autism. It was facinating to me that a child could start out with no problems and develop, for no evident reason, a disorder so severe it could cut off speech, interactions and interest in the world, after he turned 2. When I worked in a group home, there was a middle aged man who was "non-verbal". He had seizures a lot, wore a helmet and did very little other than sit in a daze. As far as I know, his whole life had been that way. Anyway, like I said, he did not talk at all. Made very little noise even, no grunting, moaning, laughing, none of it. But when this man had a seizure, he could speak in clearly articulated, grammatically correct, full sentences. "I would like a hot dog now, please" things like that. Then you have the stroke. Our wonderful child psychiatrist who had a stroke a few months back has recovered greatly (in another state-- booooo)but has not regained everything. Example, he can count as well as anyone when it comes to numbers on just about anything. But he cannot count change. Coins. He cannot add them up. Okay, so like I said, throw eggs at me if this makes me an egghead because I do think it is so interesting!

So I ordered this book, "Clinical Neuroanatomy Made Ridiculously Simple"- - HA, that is really the title so you can see where I might be drawn to it! By Stephan Goldberg, M.D. Since I think most of Genea's problems are in her brain, it seemed like a good idea to understand more about it. I have read so much research and so many books about attachment, bipolar in children, adoption etc and the thousand different problems that can come fully equipped on the child of your choice, and I have a good understanding of the "what" of what goes wrong, and the "why", but nothing on the "where".

Moving right along here, I came across a section about nerve pathways in the spine to the brain and here is what I found that was interesting- there are different paths for different nerves. There are 3 nerves that travel and cross over into the brain at a specific spot together. Those 3 pathways handle the specific information that Genea struggles mightily with every day, and there they are, climbing the jungle gym together! They are the main sensory systems here:

Pain- temperature. Feeling too much pain, or not enough. Feeling too hot, too cold, or disproportionate to the actual climate. Like sweating when it is 60 degrees out. Genea doesn't feel it when she gets overheated from too much activity, she just keeps burning and burning until she is physically stopped (well not that much anymore but for sure used to be that way) Genea only gets cold in extreme temperatures. She does not feel pain unless she really knocks herself into something, hard.

Proprioceptive- stereogenesis. Feeling where your body is in space, such as you know where your wrist is without looking for it. Stereogenesis is being able to tell what something is only by touching it. Genea is extremely awkward, clumsy and clutzy and I have often thought she looks like she does not know where her body is compared to where the furniture is. I don't know about her stereogenesis, I keep forgetting to check on it.

Light touch. Obvious what that is, but I never knew it was routed to the brain separately from medium or strong touch, or that it is connected to the other two pathways above. Genea will flip inside out if you lightly pat her arm or gently tousle her hair. But she will melt in front of you if you rub lotion on her or firmly massage her legs for example. I guess people who are paralyzed can sometimes still feel light touch but not strong touch for this reason.

Okay, so these three all party together (trying to make it interesting) and then twist around right before they shoot into the brain from the thalamus to the cerebral cortex with each other on board. This is what struck me, that the 3 are connected, a team, at this crossover point. That Genea has significant issues in all 3 areas.

I have no idea. But it jumped out at me and screamed.
It fits.

Does anyone have any idea's? If you can see that I misunderstood or got it wrong, let me know that too puuuuh- lease. Maybe everyone already knew this but didn't tell me?

Do other kids have the same combined problems in this area? Can you have a problem with one of these pathways and not the others? It is like having a key without having a locked door. I don't know what I don't know and that is a lot. It just struck me when I was reading- these things are connected. This is a piece. I think.


  1. My eldest adopted daughter (from foster care) has a problem with about everything that happens in the hippocampus, I think it is, the "reptilian brain." Sure wish I knew what to do with that information!

  2. That is a great book and you are right on base. There is a simple test for the stereogenesis/proprioreceptive issues. It is called the WACHS general movement test. Takes about 5 minutes to do. It involves testing the child's ability to perform certain physical tasks like skipping, hopping and balancing and comparing the results to other kids the same age. The last part of the test involves having the child lay face down with their head turned away from you and their arms at their sides. Touch one limb at a time and have the child raise it up. Then touch two at a time (including the head) If you see that other limbs also rise up, there is confusion or a general arching of the back raising the trunk up, then the child has retained some primitive reflexes. There are simple exercises that help them develop the correct reflexes. Try this on her and let me know what happens. I can talk you through the exercises.
    As for the pain and temperature issues? It could also be arrested brain development brought about by the trauma she has experienced. Her brain is stuck at that age. Let me do some research and see what I can find.

  3. I think it is all fascinating, too!

    Very cool indeed. I have a severely autistic cousin, Becky - born on my birthday one year before me.... She always haunted me - for obvious reasons, she was scary. But also because in the bedroom where I slept when we "went to grandpa's house", there was a photo of Becky and her older sister. In the photo Becky looks about 2 - it must have been taken right before everything changed. She looks so bright and smart and adorable. Everything she wasn't when I knew her. Haunting.

    I can't stand light touch either - makes me want to belt someone....usually my husband who has the idea it is affectionate. On the other hand Zhenya LOVES light touch.

    Never did it occur to me that these preferences were "wired in" - anything more than just preferences.

    Keep the info coming!

  4. Very interesting post...not boring at all. Some good information for sure. Hope it leads you to some answers.

  5. Felpsy can fall off the top of the swingset and walk away but if you breath too hardly on him it "hurts"

    Also coordination is a problem.

    Boog has temperature regulation problems.

  6. I find this so interesting!

    Genea is lucky to have a mom who cares enough to do research and try to help her. You are such a great mother because you are thinking outside the box and trying to understand the CAUSE of the problem and work on that too, rather than only TREATING the problem.

    I don't have kids but if I did, I hope I could and would go to the lengths you have to understand them, serious problems or not. Keep on being such a great mom!

    P.S. Your blog is awesome!

  7. I know so much more than I did. Now what to do with all the knowlege?

  8. Sooo interesting!! I would love to take a class in this stuff!

    Probably not related but I have always been amazed at my 3 yr old AE. She is my bio baby with no past trauma. But that kid doesn't get cold. One night, when she was about a year old, she had a fever of 103. I put her in a tempid bath and she played and played, never a shiver or a chill bump - she screamed when she had to get out. So bizzarre!!!

  9. Dustin has all three too! Crazy stuff. (LOL no pun intended)

  10. NOT BORING!!! Love this! TTops has all three bigtime! We just assumed they were all part of her cerebral palsy...but you know she has the wango tango, too.

  11. So interesting, my fellow egghead. In case you're wanting a small sample for comparison purposes, our P has issues with only the proprioceptive-stereogenesis (much more the proprioceptive aspect), but not with the other two.

  12. I have no ideas, but I think it's awesome that you are trying to research it and figure it out.

  13. Hi,
    I've only been following your blog for a short time...really love your sense of humour.

    I don't know if you're familiar with sensory processing disorder. It's a neurological condition quite common in children who have spent their early lives in an institution. My eldest dd adopted from Russia has this condition.

    If you haven't checked out this condition before You might find this link of interest.

    Best wishes,

  14. Fascinating.

    Did I tell you how much I love the book, "The Boy Who Was Raised As A Dog"? Surely, yes, as I'm constantly raving about it...

  15. So now what do I do with the information!?! It's interesting that some kids have one facet, others have all 3 affected. I wonder if poor prenatal development vs. early neglect has an impact.
    Hi new people Sarah and Valerie and Kerrie (I think Kerrie has been here before!) happy to have people jump on in. I especially like new people who have not already heard all my good jokes ha ha.
    Wendy- have you been holding out on us?
    Annie- that's exactly what I am talking about, terrifying!

  16. Ha ha- I'm a semi-lurker; sorry! I have one bio and three adopted from foster care. You know how it is; you lose your mind for a minute and start talking about your radlet to someone normal and pretty soon they're looking at you with the "am I a mandated reporter?" look. Adoptive blogs are where I go for my parenting advice these days. So here I am!

  17. Baaah ha ha Kerrie, I know that look, I call it giving you "appalled eyes"!
    You should start a blog too, with 3 teenagers I would bet you have a lot to say!

  18. I have 2 kids with sensory processing disorder, and they have these issues and a few more. We worked with an O.T. and it was incredibly helpful. This is something you should be able to have her tested for through the school, IF they believe in it. Some schools are still denying it exists so they don't have to deal with(pay for) it.

  19. Ha! There's four. And they won't be teenagers for five more years, so I have half a decade to pre-panic.

  20. Interesting. . .

    Armadillo doesn't feel big pain. He broke his leg, both bones on the bottom half, and it didn't hurt. He cried because he was scared of going to the hospital. But I cannot shower him because it hurts and the water is too hot or too cold.

    If I don't tell him it's cold outside. He doesn't know. He wonders why there is ice hanging from the roof.

    He has no spatial awareness of his body. Until recently, when he traced things on paper, he would trace beside it, instead of on it. If I try to get him to hop on one foot, he can't understand that his other foot is on the ground still.

    I think this is an amazing revelation! But I don't know what to do with it. Somebody, please, tell me what to think.


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