This is long, and I have written something similar on facebook forum this morning. This post differs in that more personal information has been added. Also, I’m not writing in perfect speech…I’m venting…(don’t expect too much organization or clarity please.)
Background for those who don’t recognize my name…Basically, our son has been dealing with this (something) since he was 3. The official dx, which really has been quite flexible between the doctors we’ve seen…is severe anxiety with psychosis, or schizo-affective with severe anxiety, or anxiety/psychosis/with autism like components or Early Onset Schizophrenia (frequently referred to no matter what the dx).
When a new doctor asks questions, they ALWAYS end up back at genetics…my brother and mother are dx scz, my brother with Early Onset…my uncle as well, with Early Onset. My maternal Grandmother was psychotic/delusional, the family simply accepted it. My husbands aunt with “typical” adult onset scz. Anxiety on both sides, severe with husband and son. Depression that is severe with psychosis in father in law. Some are medicated, most are not. Most are not in a good place right now.
Soo…pdocs end up responding (like they are right now) “oh, this has all the signs of scz…it must be scz…AND the genetics prove it.”
Okay…so as a result, we’re undergoing a Neuro Psych Eval…our boy is now 14 and has been on so many drugs. He’s now on Seroquel, Clonidine, Sertraline, Hydroxizine.
The pdoc for the Eval looks at him and says “This looks like Epilepsy! Has he ever been tested for that?” She then proceeds to tell me that this should have been checked for “in the beginning”, and that “with the fantastic insurance” we have, I should have just called already…I don’t need a referral. “Call now…don’t wait any longer, I honestly don’t know why you’ve waited this long!!”
I did find my courage to remind her that I’m a mother, not a medic or anyone who understands this field and would not have been able to make such a decision. Tell me what to do, and I’ll do it…I’m a “mother” not a “doctor”. I don’t dx and I don’t recommend medications. (She was also aghast that the doctors prescribed Saphris to our son when he was 9…how was I supposed to know that a pdoc years later would consider this to be “unethical”?)
Geesh…well, now we’re starting the “epilespy route”. I call the Neurology Dept and set up appointments to do something for something which needs to be checked because a doctor told me to. (I sound really brilliant now!! No wonder I hung up in tears…reading this makes me realize how little I do know and just how stupid I sound!!! Appointments to begin this route are made for May.)
Two days later, we’re back to the regular pdoc who calls in his psych boss who says that there is no reason to check for epilepsy, they will talk to the Neuro Psych Eval pdoc as they consider testing for epilepsy to be “medically unnecessary”. They said he has Early Onset Scz…and we need to know how much gray matter has been effected. Okay…now I’m more lost than before and can’t understand why I feel like breaking down in tears. Meanwhile, these doctors can’t find his blood test results…can we go again and retake the fasting portion?
My point? Our boy is isolated, he struggles with leaving the house, does not want to and makes it very clear. He hasn’t had a psych break in months, hasn’t hallucinated in almost a year (that I know of, and if you don’t count static noise or “water running” as an auditory hallucination, or cockroaches taking over…it was ONE cockroach, but hey…I have cockroach nightmares so I don’t count it the same way…his behavior was delusional, the cockroach was real), he has basically been asleep from the heavy meds since his last suicidal/heavily psychotic state. He is academically behind by years, and is obviously “different”.
To me, he seems healthy and more normal than ever. I’m the primary caregiver, and I think…too close to see anymore. It’s everyone else…even my husband and older son…they are the ones who are really noticing that younger son is “odd”. Pdocs as well…I’m so puzzled. No one is really pushing for him to return to school (since his last suicidal period when he was enrolled, 2 years ago), nor are they pressuring me to re-enroll him as they are still trying to figure things out. Frankly, no one “pushes” son…he can’t handle it. A push is really all it takes…and they noticed. The Eval pdoc keeps asking “what will he do if we push?” To be honest, after what we went through, neither husband nor I want to repeat that.
For me…well, he’s the best he’s ever been (please remember, he’s been really challenging at times) …I feel strangely guilty that he is not demonstrating signs and symptoms anymore…but he’s not demonstrating only because he isn’t challenged in any way, shape or form. He’s had one testing day…just one…he has two more to go. Then an MRI if the docs agree on it, as well as anything else. Frankly, I’m not pushing him too much ONLY because I think it’s more important to get this testing completed. I can’t force him into the car, and can barely get him to change his clothes for the visit(s). He told the testing doctor he wasn’t “talking” that day, and refused…but as I didn’t back him up, he had to go. He crashed once he got home of course…and began to make very little sense speech wise.
Pdocs are looking at “Guardianship” issues…settling something so that he is covered by insurance and SS when he reaches 18. He has come so close to hospitalization, each time they ask us what we want to do…husband looks and says to me: “can you care for him?” and I do.
The future scares me…I don’t know anymore if my son is sick or not, if he has scz or not, if he will ever be able to function in the world…or, well that this doesn’t seem to be something that will ever happen. Husband says he’s sick, has been for years, and it’s really starting to show. (Now? Really? What about when he was actively hallucinating? Oh, yeah…I am the one who dealt with that. Husband was at work…long hours OR in a completely different State/Time Zone. I’m the one who dealt with this stuff, he saw a medicated child who was asleep…or he took older boy so I could focus on second son…he didn’t “see” so much then…he “sees” now. Now? It’s not anywhere near as bad as it was!!!)
I don’t know anything anymore…and this is after years of this “condition”. They call it scz…he’s as agreeable and clear headed as I’ve ever seen him, and I don’t trust it. And yet…he has completely dropped his writing, and his interest in drawing has changed…he’s back to teeeny tiny drawings of shadowy people. When I recall the things we have gone through…it’s hard to put it all together.
Sign me…very confused and needing someone to hear these scrambled thoughts.
(P.S. This pdoc is one of the most confident women I have ever met…I honestly was brought to tears by my own hidden feelings of inadequacy…I felt “stupid”…haven’t felt that in a long time.)
Thank you for listening…does any of this make sense?
Picture: Son at the pdocs for the Neuro Psych Eval…8:30am and he announces that: he’s not going to talk, but I can…I don’t mind taking the test for him? Right?
He did tell the pdoc I was the most outstanding mother they would ever meet.
When asked about his Dad, he said he doesn’t know anything about him.
AND, he’s NOT going back to school…he articulated well…he told them clearly what it’s like to go into public and not trust what you are seeing, or that the things you see can begin to change…what is real and what is not? How difficult it is to disobey the commands. I was really proud of how well he explained things and spoke for himself.
And that too left me sitting there going: “Wha???”
I don’t know anything anymore.