My sixteen year old is regressing emotionally. He is having subtle personality changes (and every once and a while not so subtle changes). He is ticking more than he isn’t. His verbal ticks are worse than his physical ones. He tells me the light hurts his eyes,his balance is off,he is episodically dizzy and nauseous. He tells me in a small voice he is forgetting things-a lot. (more than his normal;enough it is scaring him). A few times it has looked as if he has been having a conversation with someone we cannot see. He denies seeing or hearing anything we cannot-but then he will deny the cookie in his hand. His mouth does move when he thinks. It might be that. It just didn’t feel like that. Last night he had rythmic movements with his arms at supper. It is hard to describe in words. It was new. He is back to needing one step instructions. He has been able to follow two and three step instructoins for a few years now. He tells me that paying video games (he is still grounded from them and is not seeming to want to earn them back) makes his head hurt. He spends a lot of his unstructured time staring. Just staring.
He seems to sink down and then come back up to almost where he was before he declined-but never quite where he was. I am beginning to see a pattern of sorts.
We see the neurologist on Wed. His MRI was last Fri. The new adolecent specialist was seen last Monday. He ordered a boat-load of lab work. I really liked him. He understood FAS. He spoke to my son with respect and automaticly adjusted his words to my son’s level without sounding condensending. He told my son it is probably a migraine issue,but it is better to to be safe and make sure, He told me in the hall he is looking for progressive Encephalpathy -it happens sometimes with FAS. He doesn’t think it is the onset of mental illness. He doubts it is strep related (PANDAS).
Years ago his older brother did someting sort-of-kind-of similar. His brother lost most of his cognative ability almost overnight when he was between twelve and thirteen. His neuropsych said he was presenting like a stroke victim. We were never able to find out what caused the decline. I can remember watching that son look at his fork with confusion at the supper table,unable to remember how to use it. Eventually, after about two years he began to come out of it. Once he had physically painful migrains his mental abilities slowly returned. Now he is twenty and on his own. Every once and a while he will have the same blank,confused look,but never for long.Yes, we saw specialists. No, there were never any answers.
We are hoping and praying that his little brother is experiencing something of the same inexplicable sort. There are big differences between the two. We know that. Still, it is something to hold on to.
Today my son is having a good day.
He is smiling.
He is not hiding his face.
He is making eye contact.
He is clean.
He started his laundry on his own
He is working on Kahn Academy on the computer for school.
The ticking is minimal.
I have not had to remind him to eat.
He isn’t nauseous.
His eyes do not hurt as badly.
Sometimes the good will last a few days-up to a week. Sometimes the good will last a few hours. Sometimes his days are dark for the same varying periods of time. I am seeing patterns in the cycles,but cannot see what triggers him to cycle. I just know that he never fully regains his baseline.
Emotionally he is between six and eight. He had the best time having me chase him around the house last night. It is the same game I play with the grandbabies. It was good to hear him laugh and see him smile.
I have not been blogging because I did not want to make this real. How is that for denial with a side order of magical thinking? I am tired of worry and grief. I am the world famous “the truth,no matter how painful,can be dealt with” person. I wanted to believe my son’s issues were emotional. I wanted (and still want) to be overreacting. FAS is hard enough on a good day. Adolecence isn’t all that much fun on a bad day. Throw in some adoption issues and that should be enough.
I am praying for answers this time. Technology and brain science has come a long way in the last six years. Of course I am also afraid of what answers we may get. Still, the truth,no matter how hard, can be dealt with.