On to the next step.

My son’s MRI showed no problems. We will do the EEG in two weeks but I doubt it will show anything. The Neurologist says probable complex migrains (the consumption diagnosis for all things brain related) and we have started him on a low dose med for the constant photophobia. Next step will be to the neuropsych for testing. Step three will be the head shrinker. We did get a difinitive diagnossis of torrettes syndrome. With all the ticking,this was not a surprise.
My son still seems to be having conversations with someone we cannot see. I suppose it could be a form of tick,but…..
We are regrouping,my husband and I. We are making an effort to play with this son and  go back to parenting him as if he is about six to eight (closer to six,actually.) We told him he had to play Sequence with us last night and once he was done conversing with who,or whatever,he had his discussion with (complete with facial expressions as if he were explaining something to someone stubborn) he had a good time and we saw lots of smiling. I am playing with him and doing word games like I do with the grandchildren. He seems to be responding positively. We figure if this is mental illness we need to have his complete trust if it progresses. If is is just some bizarre variation of FASD/Torrettes/ adolecent emotional issues, increasing his trust in us can’t hurt either.
I find myself looking for reasons for the odd (for this son) behavior. I find myself wanting him to be secretly on Facebook and talking to people on line when he smiles,laughs and shakes his head in agreement while doing his biology on line. It is that or the ciriculum is much more entertaining than I was aware of.  I had a harder time when we were out to eat finding a reason for the responses to nothing visable. Maybe he was remembering a past conversation? 
This past weekend I had picked out a book for him to read for school (he occasionally still does his school reading). Do you remember the game you play with small children when they are behind you and you call for them as iff they aren’t there and then turn so they stay behind you as you “look everywhere” for them. My almost seventeen year old son giggled when I did this with him.
I kept my smile bright and my tears inside.
I am about to start classes to reactivate my RN . Most of the class work I can do at home,but I will need eighty hours of clinical in a city  ninety miles away. I will need to work away from home. I have no idea what we are going to do with this son when I am gone. My husband works sixty to seventy hours a week plus commute (part of the reason I am going back to work-he needs to be able to find something that isn’t a cardiac arrest in the making).  I have no idea what we are going to do with a nearly seventeen year old who cannot be left alone for more than an hour and even that hour means he sinks a bit further into his own head.
One step at a time.
One step at a time.


About lenell

Wife to a very patient man and mom to 8 interesting kids via birth,marriage and adoption. Grandma to nearly 5,nearly perfect grandchildren.
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1 Response to On to the next step.

  1. ivy says:

    will having a definitive tourettes diagnosis qualify him for any extra help from the state, and/or disability assistance when he is over 18? i am really hoping that he will qualify somehow for services of some kind which can provide relief and assistance of various kinds to your family. i am so sorry that it is so heartbreaking for you. i am glad that he is at least giggling and happy. he seems so sweet.

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