Confused...update with Neuro Psych Eval and 14yo

[Squid]

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?

Noooope.
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.

Wha???

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.

S.

[Hereandhere]

Dear @Squid, I’m sorry your family is going through this. And yes, everything you are writing makes sense, even while you are confused and feel “stupid.”

I want to reassure you that you are doing everything you can. Since the doctors are giving you this chance for long-term guardianship, I would take that step when it’s time. I know so many people who can’t even find out when doctors’ appointments are or which medication needs to be picked up at which pharmacy and when. Guardianship is not that helpful in some ways, but being able to continue to communicate with healthcare providers is important.

When things become overwhelming, I have been told to just take the next known step. Take my family member to the next appointment. Make or microwave the next meal. Just trying to focus on what I know needs to be done helps me because I do not have a larger perspective and am often confused when I think of the future or how to do tasks I haven’t started, if that makes sense.

Best to you and your dear family. Get that testing done. It’s worth it. MRI’s are worth it. EEG is worth it. Because it’s all differential diagnosis and can help in the long run, the length and destination of which none of us can know.

[Ginger]

I think you are doing the right thing as best as you can. I am going thru SZ with my husband and could not imagine going thru this with my son…it would be absolutely heartbreaking. I think you should move forward with the testing; the more you know, the better off you and your son will be. You never know, maybe there could be some underlying illness/disease causing his SZ symptoms.
I read everyone’s post on here even though 80% of them are parents dealing with their son/daughters SZ and there is one common denominator I see: one parent takes responsibility for the child and the other seems to not want to face the illness. While I know this is a devastating illness and I’ve basically had to deal with this on my own advocating and taking care of my husband, but it would be helpful to have someone else on board to help. My son is only 12 and tries very hard to be a support to me and help his Dad anyway he can, but he can only do so much as he is not an adult…which is understandable. If I were you and I’m not so I am just voicing my opinion here, you should ask your husband to share the load because it is way too much for one person to carry. I am so sorry you are going thru this, my heart aches for you and all you are going through. This forum is my best outlet as only the people on here truly “get it” like no one else. I wish you the best of luck with all of the testing your son has to go through. Stay positive, even though it is hard, stay positive. We are always here for you.

[AnnieNorCal]

Hello Squid,
It’s a very nice picture of your son.
Just another parent here, offering you support.
I agree with you, we are not medical professionals, we are parents dealing with extremely difficult situations. We rely, cling, hope and pray, that what the medical professionals are doing, for our loved ones is correct. It can be so confusing and hopless.
I have no words of wisdom, just sending you a big hug and many prayers.
Take care, Annie - and keep crocheting!

[dkgreg]

Your confusion and frustration is completely valid. My daughter was talking about seeing odd things as early as three. I talked to a doctor about it and it was dismissed as childhood imagination. She was hospitalized for psychosis when she was 12 and again at 13. Diagnosed as major depression with psychotic features. When she was 18, she decided she didn’t need anymore help and was off meds and therapy until she was 30 when went back to her old psychiatrist and begged him to help her. He told her he did not treat schizophrenia and he hooked her up with a specialist in schizophrenia and three doctors took over and ran test and finally she got the diagnoses of schizophrenia onset childhood. A lot of anger and confusion on my part and hers about somewhere, someone dropping the ball with her. I think so much could have been done to help her a lot earlier than 30. Thank God you are able to get doctors involved with your son’s mental health at a very young age. I know the mention of epilepsy must have been very confusing and may have even caused anger on your part. It would to me too.
Take heart your son can be helped. The road can be rough, but I think you are on the right path to getting him help. You have definitely come to the right place by participating in this forum. The people here have helped me tremendously, especially when I was frustrated or confused.

[jax]

Hi, Thank you for sharing. I understand how hard this is as my son has very similar characteristics. I will say, we are taking him to the Neurologist next Thursday for epilepsy testing. My son has been on Seroquel for about three months now and most of his symptoms of psychosis are suppressed apart from static sounds. Your son is young and not only dealing with normal teenage hormones, he now has some of the added side effects of the medication to deal with and BONUS different Doctors wanting to put different labels on him. But my heart goes out to you right now, you are his biggest advocate and you have to listen to your gut. We will make mistakes and go down the wrong path a time or two, but your son has a future, all is not lost.

Jax

[krs1053]

Your son is beautiful.
My son is also 14 and was just diagnosed a month ago. He also has had “episodes” since he was 3: three and four hour tantrums, strange stories about school, refusal to participate in any large group activity, etc. He’s been in therapy since he was 5, & had diagnoses of ADHD, anxiety disorder, depression, etc. Since adolescence hit, he had been gradually deteriorating: refusing to go to school, stopped bathing or allowing his hair to be cut, wild mood swings. Finally he had a violent psychotic episode, and told my husband there was a demon inside me & I should be killed. We had the police, the ambulance, and two weeks in the adolescent psych ward. Since he has been diagnosed & put on appropriate meds, he is MUCH better. He is again the sweet, kind, loving boy he was a few years ago. He even got a hair cut! (His idea.) But he is anxious and afraid much of the time now - and so am I & my husband.
Treatments are much better now than they were when I studied psychology in college, but there’s still so much that is unknown. I am considering having neuropsychological testing done also, just to make sure there isn’t another disorder going on. I hope your son gets through testing without much trauma or unpleasantness.
I am just at the beginning of this road, so I don’t have any great advice to offer you - just my prayers and best wishes. I think many of us are taking things a day at a time.

[Squid]

@krs1053

Your son is beautiful.

Thank you…he is very sweet (handsome too, I adore those eyes!!..but I am allowed to be baised )

I’ve been reading in the background here, just really quiet lately. It’s been rough…I remember when I first came to this forum, that there was a lady who had been “quiet”, and someone sent a shout out hello to her. She responded that sometimes this “stuff” gets to be too much…she needed a break. I “get it” now. In a nutshell, in between all the testing with son, my husband is starting to have problems.

Son survived the psych testing and the xray with minimal upset. We have been going to this hospital for several years now (off and on, we moved to another state for a year) and I think that contributed a great deal towards easing much of the stress that could have hit him over this. There’s a little cafe right in the middle of the hospital (outside, with outside seating and shady orange tress in wonderful blossom!!) that he likes. He asked several times to go there during testing “breaks”.

When we entered the elevator to go down to the cafe he shared that he was “ready to go home”, and was “close to crying”, but wanted me to know he could do this. That little cafe really helped, also being familiar with everyone at the psych hospital. He saw so many doctors that he had already met. Even though his face (affect) was flat, and it didn’t appear that these people meant anything to him, I could see that the familiarity brought comfort and made things easier for him.

The testing (for those who are interested) is intense…loads of tests in various forms…some (he said) involved matching shapes and patterns that were “very difficult”. Others were standard math tests, writing tests…I copied off both of the “take home” surveys that they had me fill out if anyone is interested.

The pdoc who did the testing also interviewed me again. 220 questions for mom…that they prefer to do in session. I can see why…so many questions that needed to be defined. Answers were to be selected from: Always, Sometimes, Never. Geesh…well, that depends apon…she said all parents have a hard time figuring out what exactly the testing form is talking about. “Can he follow a two part instruction?” Always, Sometimes, Never…Is all three a choice? NO? Okaaaaaay. This portion was strangely validating for mom… (me)…as the pdoc had already been working intimately with son for two days now…3 hours each day. She was able to show me some of his tests, and tell me things she noticed during my portion of the interview. That was great!! She saw things too…and was able to help me answer these questions with much more confidence. For instance, she commented on his naivete and impulse control challenges. He is sooooo well behaved, but can then do something that’s extremely risky. The anxiety and rapid descent into depression/suicide was also noted. Wow…that helped. Another person who “saw” what worries me.

She also asked if I thought she could hand our sons portion of another interview (again, 220 questions for him to answer) and could he fill it out on his own? Well, no…there’s 220 questions here, each subjective, and THEN he must transfer his answer to a standard #2 pencil fill-in-the-bubble form? Nope…not if you want the results to be accurate. She agreed…she too didn’t think he could do it.

Bless his heart…he knew he didn’t understand much, and he knew he was struggling. I really am quite pleased with the pdoc staff who walked a very careful line between encouraging him and yet not coddling him either. There was a tremendous amount of respect shown to both of us.

The regular doctor called last night and has referred him to surgery. I know…it sounds really bad, but truth be told: it was a phone message, and I need to call back. I’m telling myself that it’s not that dreadful, it’s just probably the “surgery” building to follow up on his (possible) scoliosis xray results. I have to wait for them to open, then track down nurse or doctor, wait for return calls, play phone tag, and then I’ll find out what the message meant.

Of course this hit husband hard. He’s really shut down in the last month. I’m not comfortable talking about my husband too much here. I want him to feel welcomed to visit here, and not dread what “his wife may have said”. Still, he’s not one to reach out in this manner…I wish he weren’t going through this in the way he is, but I can’t change it. He says (husband) that he does everything he can to “not think about anything” once he gets home. He actually was surprised that I don’t do the same.

I can’t imagine NOT thinking about things…perhaps that’s not good either. I can shut my brain down and relax…watch some tele or crochet, but to not think at all…nah, it’s always there. But I’m a mom, I’m at home…and when things happen, they happen fast…so I kinda need to be “present” at all times.

He REALLY means what he says. He has shut down…he’ll sit for hours in the evening just nodding his head in response. Not much else…very little, if any, dialog. If there is, it’s ME talking, and he just nods like that little chihuahua toy in the old Taco Bell commercials. I actually said something completely “out there”, and he nodded in agreement.

I’m tired of that.
I’m tired of talking.
Of being the one with “joy”.

Husband heard the message from the regular doc last night, and…began sobbing. He kept rocking and repeating that he “did this” to our son, it’s his fault…and he would do anything to trade places. Then he shut down again. Later, I heard him crying again as he was falling asleep. This morning? Stern, focused, off to work, but held on to me for a much longer time than he usually does when I hugged him goodbye.

I really can’t reach him (husband).

I did go with him to his pdoc appointment, as he had asked for me to go. This was right in the middle of son’s psych testing. She (husbands pdoc) said he’s on waaaaay too much Klonipin, and needs to get off of it. She also said that it’s not going to happen until he’s willing to. In addition to four other meds, they then added another one! Really? Again, the pdoc said they are trying to get him to give up the Klonipin.

She doesn’t know, but I’m sure she can guess, that he drinks heavy as well. I begged him to tell his regular doctor how much he drinks. Interestingly, again, he asked that I attend THAT appointment too. So we went together…and I actually heard husband answer that yes, he drinks…and drinks heavy each night…so, at least our regular doctor knows what’s going on. (Whiskey and coke, at least 6 shots a night…more on weekend. I really don’t know how he continues to remain upright.)

Basically, his pdoc said this: for years, the pdocs have been giving him meds to help him relax, sleep, keep his head on, and keep his anger in check…in order that he can continue to remain employed and be the sole financial provider. This is not appropriate, and was just an “emergency treatment” until he could get more help. She (like his other pdocs) said he needs talk therapy. His face, his words, and his reaction all communicated the same thing: this is so very much NOT happening. This has been the way doctors have treated him for the last 20 years!!

It’s been a rough month. I can see that husband is crumbling. He is starting to make foolish money choices…and when he does talk, it’s sometimes illogical dialog. We are going through a difficult period right now…and it is, and is not, related to our son’s condition. I tried to talk about going to therapy…and was shut down. Okay…things are sensitive and very touchy. When he shuts you out, well, the door is barred and sealed.

Son is doing well…considering. He doesn’t or hasn’t seen the issues with Dad…they really don’t cross paths that much. Older son does notice, especially some odd things lately. I’m really blown away by some of his recent decisions…and am trying so hard to explain things to older boy, but don’t want to speak ill of husband either. Dang it…

Please, please don’t refer to AlAnon, etc…I’ve done that road. (Still do to a degree). Don’t tell me to “leave” or “give him an ultimatum”. That’s not going to happen. It would be the worst thing for both husband and sons.

It’s just a really wicked place to be for him.

You can’t keep things bottled in! (Hmmm, didn’t intend the pun there, but it works.)

Son is drawing still, stayed up all night last night doing so, and is STILL awake as I type. He’s irritable if anyone asks him to do something, unless it’s me. He will grumble with me, but has been doing a bit more of late. As to writing…no, not happening. He was soooo very excited at first, and now…hmmm, well, he too has a lot on his mind.

Sibling update: Older boy has settled on the Navy and a sweet girl named “Joanna”. (I have a feeling the Navy will be in his future, Joannna will remain a friend.) She attended the Law Program with him, and they really connected. He needed that…someone who thinks like him, has interest like him, but a completely different set of family dynamics that his own. Yeah! I LIKE that they text each other, that she has encouraged him to take up the AP classes, and then speaks to him about the struggle related to those same classes. He needs an “outside world”…after all, he’s 15 and is eager to embrace life.

That’s about it in our corner of the world.

I’m here…I might not always post…this “stuff” does get heavy…but it’s pleasure to share coffee with you every morning!!

Have a good day everyone!!

S.

Picture…my darling husband…his expression when he has shut down.

[Squid]

Quick reply…

Son is scheduled for MRI/Neurology Department in May.

If the regular pdocs veto it, the insurance might not cover. However, only one pdoc (in the entire team) considers this medically unnecessary. The others want a complete picture.

We’re getting it done…as well as anything else that might provide more information.

@Hereandhere

I want to reassure you that you are doing everything you can.

Thanks!!! Some days (today is one) I find myself thinking: “certainly there’s something MORE I can do, right?”

[Squid]

Updated below…

As to crochet…it keeps me sane I think!

I purposefully joined a beginner crochet forum on facebook to give my mind a break. To find something else to do, to be challenged and to be at peace with. It’s working…well, at least I’m having fun!!

Dexter (my dawg) agrees…

@AnnieNorCal

We rely, cling, hope and pray, that what the medical professionals are doing, for our loved ones is correct.

So true…I think that’s why I really like that I have something on my facebook feed beyond schizophrenia. One can research only so much…

[Hereandhere]

Oh those are super pretty. I love your color choices.

[hope]

@Squid, are you still having coffee with us in the mornings?