Family and Caregiver Schizophrenia Discussion Forum

Squid Catching Up...Younger Boy w/dx


#1

To continue from previous post:

There were a few people that I was about to respond to, and then we lost our house internet for a few days (construction workers broke the street line). Each (in my mind) required more than a simple response…so please allow me to apologize for not getting back to each of you…and thank you for the kindness and understanding that you each show daily.

We are the parents of the 14 year old boy who is dx Early Onset Scz for 7 years now.
We also have an older boy by one year, who is in High School here.

I honestly had found no other group on the internet for many years after his initial psychotic breaks. I guess I didn’t look deep enough, or perhaps, I was afraid to face the reality of this dx? In a way, I hoped that meds would “fix everything”, or he would “grow out of this”. Denial, grief, negotiate, repeat…I also didn’t feel comfortable talking too much online about our boy. After all, our initiation into this illness with our son first came when he was 3 years old. Pdocs said it was rare for a child this young…so I didn’t expect to find anyone who could relate to a child seeing blood on the walls, and rabbits following him around so they could bite chunks out of him/us when they got their furry-chance. (Think Monte Python white rabbit. THAT’s what I thought he was imagining. Just imagination.)

For ages now, our son has been asleep. If he’s not asleep, he’s in zombie land. There’s no other way to put it. His last suicide attempt was almost 2 years ago, and although he’s no longer within the realm of those thoughts, the increase in meds (or the condition) has somehow changed our boy from the “super sweet kid with issues” to someone who is…well, “dazed”? or “simple”? or “slow”? or…well, as he puts it: “loopy”. Heavily medicated, sleeping, gaining weight, and slowly becoming a hermit. (His words…he wants to be a “hermit”, basically isolate.)

Then…he woke up.
I’m not kidding.

About two weeks ago, he woke up.

He’s awake now in the morning. He stays up until early morning hours as well. He honestly cannot sleep at his “normal” time of 8pm…he’s up far longer. It’s worse if he lays in bed, so I’m letting him stay up, as long as he follows safety protocols and understands that “nighttime thoughts” can be worse from lack of sleep. I check and check throughout the night hours (I wake at 4am, so I’m exhausted with these night checks…but he’s okay it seems.) Sleep hours now? 1 to 2am bedtime, some days it’s 3 to 4 am. Wakes at 7 or 8am, may return to sleep for a few hours, OR may stay up until the next 2am point. He may wake at 10, and then he complains that he slept too long. What has happened?

He’s active. ACTIVE. Remember the kid who couldn’t make the walk to his brothers High School? Whose hands are as soft as butter from lack of activity? He helped me move a desk from one room to another yesterday. Broke down his desk, cleaned and organized computer wires, and organized his “world”. He helped with laundry! He TOUCHED and moved the clothes. He actually carried the hamper. He was exhausted, but he did something for a change. His movements were stiff, and his hands shake like crazy, but he is STILL trying to do things.

This is not our usual boy.

His art is off the charts. He draws for hours now. Day or night, he’s drawing. I asked for him to use his love of YouTube and search videos on drawing in lieu of school work. We honestly thought this was the only way to get him to open his mind to what he was doing, instead of forcing page work, his dozing his way through, always on the verge of destroying the page he’s “working on”.

He’s studying everything he can about drawing. It shows too, in his art. I wake in the morning, and the refrigerator, my desk, the walls, each have drawings hanging all around them.

He’s TALKING. For about 2 hours at least a day. Only with me…and I can’t always follow it (doesn’t mean he isn’t making sense, I’m sleep deprived, and don’t always understand the older boy, let alone our younger one!) But, he’s talking. This is the same kid that I wrote to you all about with extreme sadness as to how quiet he is. How DAYS can go by with silence. Now? He’s talking for hours.

And…it’s tiring. I (sadly) am finding this very hard to keep up with at times.

Yesterday, he announced out of the blue, that he “needs to take up gardening”. (I have a garden…he didn’t connect the two. I showed him the balcony…he just said “ummmm”, and went on with his thoughts.)

I honestly don’t know what to make of it. I’m happy, but I’m also not. Something in my gut says to be careful. This is sleep disturbance, with a drastic difference in thoughts and actions. And yet…he says the meds “are perfect”, and everything is great.

I finally asked, if he was having hallucinations at night? He’s drawing the “scary” creatures during these hours, and I found a stack of them tucked away in the desk drawer. He found a way to put the time and date on his pictures in an artificial watermark. He says this way “no one knows” what time it was, just me, so that way: “I know”.

Yet, he denies that these are hallucinations like before. He responded (to my surprise again, as this refers to a conversation I attempted to have with him months ago) that I told him that he could use his drawings of hallucinations to design creatures for video games. That only he could visualize what is really scary, as he knows this all too well and can create unlike anyone else. (I did tell him this, when he entered suicidal ideations again recently. I told him this to give him some direction, so hope that he can do things to contribute to life…to have a purpose…to turn what is a nightmare at times, into something he can control, or at least: manage.)

Oooops?
He wasn’t even listening to me way back when.
At least I didn’t think he was.

He used to sit with a billion pillows and blankets for hours. All day…the only time he moved was to bed, or to the toilet. He tossed out the pillows a week ago, stating it was “bad for posture”.

Okay, these are all “good things” right?
Nearly forgot…he also said I needed to bring back math into his schoolwork…as he’s getting “behind”.

Behind? We couldn’t even do schoolwork! Two weeks ago he refused to work anymore on math, as the worksheets had “little kid designs” on it. (Of course it did…you’re still at “little kid level” of math! I did NOT say this…but sure thought it!!!)

So, I’m now remaking the “little kid” sheets into adult style math pages. And, we’ll start with multiplication…again.

This is all great.
Except…that brother now is “irritating”. Brother “knows what he’s doing”. It’s “that silly song”, or brother is “making a face” that he “knows” he doesn’t like.

This has not happened before.
He didn’t know I was crocheting in the living room a few nights ago. I stayed up to crochet, and keep some sort of adult supervision with these late nights. I heard older boy go into kitchen, happily getting something to snack on. Then, younger brother exploded. The profanity! So many foul words, and the anger!!!

He didn’t know I was listening.

That’s just being a jerk. I think? Except he took me on with anger too.
That’s a fine line with him.
I did make it clear that if I couldn’t trust him to be kind to his brother, he would lose the opportunity to stay up.

Let’s be honest here. How am I really going to keep him in bed?

He told me later, privately, that he was scared…he could feel his anger taking over. He couldn’t stop it, but was telling himself to do so. Still, he kept thinking brother was causing it. For now, I told him to reach out to me, or Dad, but leave brother alone. It’s not fair, it’s wrong, and brother doesn’t deserve it. Think for a minute about the things brother is dealing with. He was happy that night as he succeeded in his recent endeavors. It was wrong to attack brother, when as a family we cheer for one another. It was a time to support, definitely NOT attack. Brother didn’t do anything, I was right there, a few feet away…I can testify to this.

Neuro Pscyh eval is at the end of March. I’m going to continue to move with the flow for now, and let them find out as much as they can. Boundaries about behavior towards brother of course, but the sleep patterns…well, no clue what to do there.

Odd…for years pdocs ask FIRST about his sleep? (SECOND question is always about suicidal ideations. THIRD: is always about any recent aggression.)The answer has always been he sleeps too much. Pdoc would respond that was the hoped for. To sedate and calm post suicide attempt, and would hopefully remain this way for “a long time”.

It has…
and now:

he’s awake!

What’s happening?
And why am I not overjoyed?

Perhaps, I’m tired. (My IBS is acting up right now, dang it, and may impact my perspective.)

Thanks for listening.

I will say this: I took this picture yesterday morning before older boy left for school. It was nice to see both my boys in the same space talking to one another.

I’ll post artwork later…there’s too much, and I have to use several devices.

(For those of you who may be uncomfortable with family/private photos…I find them to communicate far more than words. The boys are okay with it, as long as I speak respectfully about them. Excuse the laundry on the table.)


#2

Holy Hades…
I didn’t know someone could make an artificial watermark.

Why the secrecy about what time he made the artwork?

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#3

Things can get rough when they start interacting again. It sounds like the younger boy is getting better but the anger is a concern. He’s got a good eye for art.


#4

I hope I’m not monopolyzing the forum…please skip and ignore if this is too much.
What I found in the drawer. Sure enough, he wrote that these were simply ideas, or creations.

I wish sometimes, I could simply rejoice in what he does, and not wonder if it’s indicative of something more?

Eyes and teeth, these were ALWAYS the hallucinations. I am intimately acquainted with these monsters.


#5

I wouldn’t be too concerned about the drawings. They don’t look violent to me. Could you get him some paints perhaps? Colored pencils?


#6

Thanks…I’ll relax then.

I like that he actually DID listen to what I was saying!

Colors…used to be very much against…but he drew something the other day with green added to it. He also drew a beautiful turtle, asked for me to scan and reprint it, and then if I would color it, that would be great.

Dad bought him the pencil set recently. Wow…it’s working.

Maybe Dad can also get some colors?

Amazing what a Dad can do.

Thank you so much…
scared me when the drawer fell open.

I thought: “no…not again!”

Yeah…went there. Thanks again!


#7

I know when our son wakes up it is 24/7 consuming. I feel guilty that I cannot think of enough activity to keep him occupied. He seems to only want to work with harmful things and it is a constant struggle. That is a whole different thing.

I think it is a good thing to draw these out and he is quite an artist. Art allows expression. And I remember my son telling me he hears everything. We think he is out of it but he hears us.


#8

I do not wish to be a downer with your son’s wakefulness, but I’m worried it sounds like mania. As in manic/depression or bipolar. Something maybe to ask about when you next talk to the doctor.
I think it’s great that you encourage him to express himself with art.


#9

He crashed yesterday, slept until 4pm, and then was up until 2am.

He looks so very tired.

Yeah…I was thinking the same.

We see pdoc today for our regularly schedule appointment. Neuro pscyh eval is the end of March.

For now, I told him he can do his work at night…we think it’s a bit better if he’s busy than if he’s laying in his bed on his phone.

I trust our pdoc…he’s done very well with our boy…

Thanks!
(Not a downer at all…why I love this site, and your posts. Thanks again!! Everyone!!!)


#10

I was wondering if maybe he’s outgrowing his dose of medication? They grow so fast at this age.
As far as getting mad at his brother, I’m curious about that because at 14, my son has become very angry toward his younger brothers. I think some of it is hormones, but not just that, probably.

Hope your pdoc is helpful!


#11

I was wondering the same. He has outgrown everything, and is literally towering over the pdoc and I now. Only Dad is taller…and much wider. (Big Bear)

Interesting…son just woke up (it’s um…1:30pm) and said the same thing. He doesn’t like this sleeping/not sleeping thing. (That’s great!) He has been told that he may outgrow his meds, that’s why we go to the pdoc and pay attention to this “stuff”.

Sooo, jotting down a few questions for pdoc.
And…very glad that I have other parents to talk with.

15 minutes with a pdoc is NOT enough for a mother.
At least not me…I need to talk to someone else about this.

Thanks everyone!!!


#12

I, also, want to at least mention a mood disorder as a possibility. I read these posts with special interest, because although different, I could see elements of similarity with our son, who has a SZ diagnosis for 2+ years. Son was not really seeing a pdoc for this past year due to refusing meds and managing fairly well on his own for 6 months but then he disappeared and was homeless living out of a car for 3 months. Now that he is back in our area but having significant trouble staying out of ER or hospital due to going into a stupor (sometimes catatonia), his “new” pdoc (who I like so far) believes he was mis-diagnosed and actually has bi-polar illness. I see elements of both, but our son does not seem to fit any kind of “typical” manifestation for either. Please be sure to share with us the results of the upcoming neuro-psych eval. And what is that, by the way, and how is it done?


#13

@Squid

You write SO WELL it’s like we are talking on the phone. Totally get the worries you have. I have read through everything here and EVERYONE has contributed with thoughts I had along the way.

This truly is an amazing group and I am so thankful to have found this forum.

As others have requested, PLEASE let us know how the pdoc visit goes.


#14

Good Morning!
I’m still on my first cuppa joe…so let’s see how the synapses are firing so far. :stuck_out_tongue_winking_eye:

Met with Pdoc last night, and it went VERY WELL!!! I think a bullet list of main points is probably the best way to address what feedback we received.

(Of course, he asked about sleep immediately.)

  • Son is not taller than pdoc…but he’s grown. See pics…from 3 years ago, and one from yesterday. Pdoc is taller than I realized…I’m now the shrimp.

  • He’s LOST weight, and gained height.

  • VIT D was shown on recent bloodwork to be seriously low. Very serious, which is why pdoc called and requested that we add 2000 units of Vit D3 immediately. Note: that was 2 weeks ago!!

  • Vit D loss can be a part of Seroquel. Results in: depression, lethargy, slowness of thought, tiredness.

  • Iron is low too, which has been addressed through Vit as well. (Fam Dr caught that first. Both pdoc and fam dr are at the same agency. I did this on purpose, in order for the two Drs to be able to communicate immediately with each other. They love it by the way.)

  • Head pych doc came in and met with us too. She thinks he has a comorbid dx of EO Scz and Autism. Wanted to know if we would please add testing for this as well when he has his Neuro Psych Eval. We agreed, they are adding even more test to this, in order for (son) to have disabled /support needed status prior to age of 18.

  • The Drs think he has reached the “sweet spot” of medicine. Since he is doing well, they no longer feel the full 300 mg of Seroquel is necesary, and are concerned with weight gain and diabetes. So, he is being reduced to 250 mg starting in 5 days. They told Aramis that they are certain that his hallucinations will not return with such a small drop, but his joints should hurt less, and he should have more energy as a result. It was deemed “medically unsound” to continue at this juncture with 300 mg.

  • They are not concerned with sleep cycle change, as long as he is receiving 8-10 hours of sleep within a 24 hour period. If it’s broke up, or mixed around that’s nothing to be frantic about. It just shows he’s finding the sweet spot, and is reacting to the increase of Vit D. However, his goal should be to be in bed my midnight, and do NOT stay in bed if he can’t sleep.

  • Keep up the art in lieu of school, (son said again that he needs to address math), so they added math.

  • They also said they were pleased, as with his testing coming up soon, he’ll be more alert and not struggle so much with the time involved or the stress…IF they reduce the Seroquel now.

  • Return in 4 weeks to keep a close eye on this change, and call (of course) if there is anything out of the ordinary.

  • They asked what Aramis would like to do, if they could remove some of the joint ache and increase energy? He immediately responded: “Go fishing with my Dad!”…and that was settled. Son made plans with Dad last night to go out on a charter boat soon. (Another new thing…to be interested in something again…fishing is something he used to love…yeah! STILL DOES!!!)

When they discussed son’s increased talkativeness…to their absolute delight (and my mortification)…son told them that:

“Dad and I are quiet. We like to hear Mom talk, we just don’t do that ourselves. However, she won’t let you be…she finds you and makes you talk. It’s okay…but you really can’t get away from her. At least she’s fun to talk to.”

Geesh…but even he laughed when he heard himself. That in itself is new…and great! He apologized, but we agreed…I do “chase them down”. Privately, the pdoc said it was the way to go…with personalities that are uber quiet. They need dialog, and sometimes it’s only those who they really feel safe with that it then occurs. Good job for my not giving up and embracing silence. (Whew!!!)

Husband told me later that he loves to hear me talk. (Especially if he can get a back rub at the same time.) It “saves him” from having to think of what to say. Apparently the anxiety with speaking is enough to make them both tremble and lose the ability to interact. I didn’t know this, but husband spends the entire day at work trying to avoid dialog with anyone…(how does he do it?)

I’ll post a seperate thread on the Neuro Psych Eval info I have so far. That way, when the follow up comes through, the subject will be organized to it’s own thread. (I think this is the “right” way to do this…I think?)

Whew…
He did not want to go yesterday. Refused (gently, he did not become nasty) to change his clothes or brush his teeth. As usual, I was gentle in return, but gave him slightly better clothes, and told him his breath stunk…(aren’t I sweet?)…so, he put himself together with as little effort as possible. I’m okay with it…he said it would “cost me”.

It did…
Over an hour in bumper to bumper LA traffic AND $18.00 at McDonalds.
He got a huge hamburger and his beloved MILK SHAKE.
I got my comfort food: Suasage McMuffin and Egg!!!

Dad (while we were gone) took older boy and walked to our local restaurant for sushi.
Got to love the man…he may be quiet, but he adores his family.

P.S. Yeah…Aramis hates to wear shoes…it’s too small an issue for me to wage battle over.

I’m smiling…
A little concerned (or aware) that he will need more involvement from me right now. BUT, he is interested in things again, and hey! He ASKED for math didn’t he? (Hmmmmm…I’m getting ideas!!!)

Thanks everyone!!!


#15

Great news! I’m happy for your family. It seems as if you have a good team of docs working w you. I hope you continue to have positive results.


#16

What is a Neuro-psy test? What does the test prove/disprove? And who do you schedule it with?
Sounds like something I would like to explore.

Thanks for the info.

Glad things sound good!! Yay


#17

I started a thread on this subject…and was surprised there wasn’t one already.

I’ll add any other information I gather as we continue this journey. (Especially costs, length and scope of exam, methods…etc.)

Wish I knew more, but he’s at a good place right now to do this.

FB has a lot of information from other parents who have done this. (I don’t feel right putting anyone’s responses up here that was not agreed to prior, as supposedly the fb group is “closed”.)

BUT, the groups can be found and joined easily. These are the two I have joined, and have threads along the subject line of Neuro Psych Evals. On Face Book:

Families Living With Schizophrenia
Parents of Kids with Schizophrenia

The second group is more active.
BOTH have a lot of information, but something more: parents who are searching for information. As a result, many times they are sent back to scz.com!

I notice far more “real time” issues are disclosed on fb due to it’s instant availability.


Pediatric Neuropsychological Exam