Thursday, November 15, 2012

Grieving Over Another Diagnosis...

We got some discouraging news this week when we took our youngest son for an evaluation with our psychiatrist. It wasn’t what I expected, but looking back, it’s all starting to make sense.

When we arrived at the psychiatrist office, my little one climbed into the big leather couch with his feet dangling off the side, not even reaching the floor. The doctor first addressed him asking, “Do you know why you’re here?”

My son straightened himself up and in a matter of fact tone said, “Yeah, I hear voices in my head.”

From there our psychiatrist ask about a dozen questions about the voices, here are a few of them:

 “Do you hear more than one voice?”

“Yeah, I hear a lot of them. They’re kids’ voices and strangers”

“Are they in your head or in the room?”

“In my head.”

“Do they talk to each other, or just to you?”

“Just to me.”

Do they sound like your mom or dad or your brothers?”

“No, I already told you, strangers!”

“What do they say?”

“They call me bad names like idiot, stupid and tell me I’m a horrible person.”

“What else do they say?

“They laugh at me a lot.”

“They tell me to do bad stuff and if I don’t do it they’ll give me a migraine.”

From there the psychiatrist gave me a curious look and said, “Does he ever get headaches?” I answered, “Yes, more recently, in fact about a week ago he had his first migraine and even threw up with it.” With a look of concern he replied, “Keep an eye on that and let me know if that continues.”

Turning back to my son he asked, “Do the voices ever tell you to hurt yourself?”

My son hesitated for a long moment, looking down and avoiding our eyes.  Then he softly said, “no... well I mean, yes.”

“What do the voices tell you to do?”

“They tell me to kick myself or to punch myself in the stomach.”

“Have you ever done that?”

“No, I know that’s wrong.”

“That’s great, don’t ever listen to that.”

After all the questions and reviewing the list of behaviors we’ve witnessed over the years, along with looking at his drawings of slaughtered dead people (with blood and numbered bodies) he turned to me and said that he’s clearly depressed. He believes the voices are possibly due to psychosis brought on from depression. If it isn’t psychosis, then it’s intrusive thoughts which are also bad and related to depression. He said that it’s clear that he’s struggling and we can’t continue with this so we need to start him on an anti-depressant, Prozac.

I felt a punch in my stomach.

Still dizzy from what I just heard, he then said, “Looking at the list of behaviors you’ve brought me, have you ever considered that he may have Aspergers?”

This felt like it came out of left field, but I had to admit, it recently crossed my mind. About a month ago when I was looking into my son’s vocal tic, Palilalia, I saw along with anxiety, autism was also associated with it. It made me ponder as I thought about the way my son never wants to play with other kids, but instead is happiest when he’s alone.

Plus there’s all the sensory issues that seem to be taking over his life, his extreme reaction to change in routine, even going out to pizza this week brought on anxiety because, “we’re suppose to go home after school, not pizza!” He’s overly obsessed with time and is extremely picky about foods.

There are moments were he goes into fits of anxiety over batteries dying, and showing him a bucket of fresh batteries doesn’t quelch this fear. A few months ago he was hiding under a clothing rack in a Old Navy store in a fit of panic because he saw some balloons and said, “The balloons have a spell on me!”

He seems to hate toys and never wants to sit with the group of kids during story time. He runs out of his classroom and lunch room because it’s too loud and this summer he ran away from a birthday party because it had too many kids.

We’ve seen anxiety over throwing trash away, how his sheets are tucked in or how his clothes are packed in a suitcase. Things like haircuts, shoes getting wet or teeth falling out have produced outrageous moments of panic.

Recently he told me that he sits alone at lunch. When I asked him if he ever wants to sit with friends he said, “I don’t have any friends.” When I asked if he preferred it that way, he nonchalantly said, “Yeah!” and wandered off like we were talking about nothing special.

This summer I found that it’s almost impossible to get a photograph of him since he seemed wary of our camera at times. Then there’s the varying moods, he definitely wakes up in bad moods and on other days he’s clearly happy, but in no time at all, he complains that it’s the worst day ever. He cries almost everyday about not wanting to go to school and homework time is painful.

He has on occasion shown destructive behavior when upset that I always felt was different from the energy his brother gave during a rage. It felt like he was mimicking what his brother did and unlike his brother, I was able to calm him down. Also, his brother’s rages always felt like someone out to get you, like a wild animal, where our youngest son just looks frustrated and overwhelmed.

We watched over the years our “playful boy” that liked to dance to music like he owned the dance floor, turn into the kid who runs and hides under the couch pillows when the music starts, refusing to participate.

And what really hurts, is seeing how he’s pushing my husband away. He just doesn’t connect or respond to hugs and playfulness as much. My husband says, “I don’t even know my son anymore.” And my son’s favorite time of the week is when his brothers leave for youth group so he can have his “alone time.”

As I look at my youngest son with a new lens of Aspergers, the list continues to grow. I can see now how this is possible.

I have to admit that my heart has been very heavy. It feels like I’m losing another child into a world I want no part of.

It’s not because he may have Aspergers, if anything that diagnosis would explain a lot. But it’s because I’m being told that this isn’t a phase. All along we have been told that our son may have PTSD because of his exposure to his brother’s rages. But this depression, this Aspergers, it’s not a phase. It’s another long journey I don’t want to take.

The thought of putting another child on medication, an SSRI on top of that makes me sick. What if it triggers a bipolar illness? What if it makes him suicidal? Our psychiatrist reassured us that we would take him off if we saw any bad side effects, but what if we ring a bell that can’t be unrung?

My heart is aching...

But as I was tucking my little one into bed last night, he was crying, saying, I’m so sad...

He told me the voices keep bothering him and he wants them to go away.

How can I ignore that.




24 comments:

  1. I am so sorry to hear that, it is hard and very painful to see your kid to have such terrible problems.........

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  2. Oh Mama Bear! Your family has gone through so much! The positive of this is at least maybe medication and appropriate therapy will help your son.

    Also, because our sons are so similar with their response to lithium, wanted to let you know that my son was starting to become more manic/mixed states. I had his li level checked and it was low so we added another pill (now 1200mg) to his lithium and just a few days later, he seems to be back to himself and doing pretty well again.

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    1. Thanks for the insight on Lithium, I will definitely keep that in mind! I’m so thankful that Lithium does such a good job with stability! As they grow, I’m sure we need to keep an eye on those levels!

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  3. Mama Bear,
    I cannot say "I understand your worries", as I didn't feel such a worry for a child (I am not a parent).

    What I can say though is that you have two possibilities :
    - Or you accept the SSRI, but you ask your youngest son's pdoc to be very careful with a manic switch.
    You can also ask him to hospitalize your youngest son to be watched carefully and react appropriately if/when a manic switch happens.

    - Or you refuse the SSRI and you ask him to treat your younger son by another type of medicine.
    I understand your being wary since your son has a psychotic reaction, and SSRI can and does trigger/increase psychotic symptoms.
    Be sure to be firm with the pdoc in such a situation. You can tell him that you accept a medicine, but you refuse a SSRI because you are concerned about the risk of a manic switch, as your oldest son has a diagnosis of bipolar disorder I.
    Family history of bipolar disorder is a reason to be concerned about a manic switch by a SSRI.
    So, yes, I can only understand your concern.

    Be firm about your concern about the manic switch. Stand on your feet about it.
    If your son's pdoc does not want to address seriously your concern, you can raise the fact that when your son has a manic switch, he will be responsible because he has chosen to treat your son with a SSRI whereas your oldest son has bipolar disorder I (so, your concern is scientifically valid).
    When a doctor does not understand fairness and equity, he necessarily understands lawsuit.
    You can also say that when your son has a manic switch because of the SSRI, your son will be dangerous for himself and for the others, so he will need to be hospitalized. Make him understand that he and you need to act proactively and avoid at all cost the real risk of manic switch. Last but not least, you can raise the fact that the risk is well known, and that he will be liable because he could not ignore the risk of a manic switch (especially because your youngest son hears voices, and because of the family history).
    Be firm. You have no reason to give a medicine which is more harmful than helpful.
    The worst medicine is the wrong medicine for your son.

    It's not because your son has a mental illness that you have to accept whatever doctors decide.
    You are your son's expert. You live with your son daily, whereas the psychiatrist sees your son only a few hours.
    A psychiatrist is a specialist of a wide range of disorders.

    BTW, psychotic symptoms can be triggered by PTSD. In fact, the researchers raise the concern to add in nosologic classifications (DSM and ICD) "PTSD with psychotic symptoms".
    So, you can have PTSD without psychotic symptoms or a PTSD with psychotic symptoms.
    But psychotic symptoms due to PTSD will have a content linked to the event (if PTSD is due to war to someone, the psychotic symptom will be linked to what happened during the event).
    I don't imply that it applies to your son. I just want to correct something from your post about PTSD (because it's only partially true).

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  4. I am so sorry to hear about the possible Asperger's. I have a 15 year old daughter with Asp, along with some mood issues and ADHD. Feel free to contact me, and also take a look at some of the biomedical interventions that can help autism spectrum disorders.

    Hugs!

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    1. Great! Does my son’s symptoms above look like Aspergers to you? Have you used meds to help treat symptoms?

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    2. Yes, he does sound like he has Asp. I've thought so for a long time, actually (I'm a lurker.) I treat using lots of biomedicals but as she got older, it was necessary to use meds so she could function socially at school. In hindsight, I wish I'd started those earlier, as she was suffering. These kids suffer quietly, and sometimes you don't know the extent until they are treated and improve. One thing about kids on the spectrum, however, is that they generally need lower doses, at least at first of SSRI's.

      I will continue to check back on this in case you have any other questions.

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    3. Thanks for the feedback! I really appreciate it!

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  5. My son hears voices as well. He is 10. He is currently on Risperdal. Tenex and Adderall. The medications seem to be helping with his ODD, Tourettes and ADHD. My other son has bipolar. He has been under the care of a psych since he was 2.5 - and on psychotropic meds that long as well. I don't need to tell you how difficult it is to put your child on medication - heavy medications. I also don't need to tell you how heart breaking it is to see your baby suffer. The diagnosis of bipolar was easier for me than the one of Aspergers for some reason. Maybe because I had done so much research on bipolar I felt I had a handle on it. The Aspergers is so apparent yet I couldn't completely grasp that he had it. It's hard. This whole journey is difficult but please know you are not alone. My son who has bipolar and aspergers is 12. Meds and psych appts is all he's ever known. It breaks my heart. Hugs to you!

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    1. It interesting you mention the bipolar diagnosis was easier than the Aspergers. My husband and I discussed how we know so much about bipolar that we feel prepared to take that on, but it is overwhelming that we have to start all over with a new disorder to learn and seek help with.

      What Aspergers symptoms did you see? Its funny all the things that might be related to a possible asperger diagnosis that seem obvious to others, to me they were just his quirky personality, I never made the connect.

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  6. How heartbreaking for your son. Your family is in my thoughts

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  7. Yes, definitely quirky. That's actually what I called it, "his little quirks". As an infant he was hard to console. There was no putting him on a schedule for eating, sleeping, anything. He refused to be put in a stroller. Being in a carseat was upsetting to him. When he was able, he would unbuckle himself and get out of his carseat while I was driving. Many times I had to pull over. We even resorted to tying the harness straps together. He wasn't able to pick up on social cues - ever. He is #5 in the birth order so at least I had something to compare typical behavior to. I also worked in special ed at the time so I had plenty of resources. I tried explaining all his quirks to his kindy teacher (he had previously attended special ed preschool) and she treated me as if I didn't know my own name. Pretty soon, we were meeting with the district psych and my voice was heard. I was no stranger to IEPs and I refused to have her tell me my son was "normal" when it was so apparent he wasn't. She even went so far as to not allow me on the playground to drop him off. I found an angel in an aide who would take his hand and stay with him. During this time I sought out a private kindy - not Montessori but lots of hands on learning. He thrived!!!! No more pen to paper or worksheets. He attended public kindy in the morning and private kindy in the afternoon. Fast forward.....he is still receiving special svces but is in a regular ed classroom and doing well. He continues to have outbursts in the home but maintains in school. He has a small number of friends as he is socially delayed. He is active in Boy Scouts (my husband is assist leader) and has come a long way. I know he will most likely need assistance for the rest of his life. Maybe that's why the aspergers gets to me the way it does. Little things get him worked up and its hard for outsiders to understand.
    Sorry this is a book!!! :)

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    1. Don’t apologize for the long comment, this is exactly the stuff I’m looking for. Thanks! What is public kindy?

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  8. public school kindergarten :) vs private school kindergarten

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  9. Oh Mama Bear, my heart goes out to you and your family. I watch my daughter carefully. She sometime shows signs of tics, but so far it seems to be anxiety from living with her brother (and having an anxious genetic makeup...)

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  10. Mama, you have a lot on your plate. My thoughts are with you.

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  11. Do you know why your doctor was concerned about the migraine? Shortly after entering puberty our 13 year old son began having episodes that include slurred speech, dizziness, altered gait, seeing flashing lights on one side, disorientation, etc. The EEG showed no seizure activity and his neurologist thinks it is a type of migraine that presents with neurological symptoms rather than severe headache. About the same time these episodes began, our son started hearing voices (his description of the voices is very similar to your son's). Evidently there is a rare type of migraine that can also cause psychotic symptoms. We are trying to sort out if our son's symptoms are all migraine-related or if he has both migraines and psychosis caused by some other mental health issue.

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    1. No, I don’t know yet, I’ll need to ask him. Does your son's voices only show up with a headache? Our son seems to mention the voices when his head is fine.

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  12. Our son's voices continue even after his other symptoms diminish. The neurologist thought his first episode was a psychotic break because it included visual hallucinations and all of the neurological tests came back normal. We found out months after that episode (and after trying to understand some bizarre behavior he suddenly begun demonstrating) that he began hearing voices about the same time as that first episode. Haldol made the voices and anxiety manageable, but the other episodes persisted. That led the neurologist to suspect migraines as a cause for the episodes (but not the pyschosis). But just recently he had an episode at home and during the episode he reported that the voices started to get very loud. So I now I wonder if it is all linked. So hard to sort everything out!! (Our son also has developmental delays and difficulty identifying and describing pain/feelings which makes it even harder to sort through.) I'd be interested to know your doctor's thoughts on the migraine.

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    1. I’ll have to ask him the next time I see him! I’m curious too!

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  13. We only learned the severity of our daughter's mood disorder after she started Zoloft an it triggered everything. The red flag you should watch for is if your son shows immediate benefits from the Prozac. SSRIs are supposed to take weeks before you see marked improvement. Our daughter was like a new girl in 48 hours. Two weeks later everything hit the fan. I realize he could start Prozac and be fine for two months before something is triggered, but typically those first few days are very telling. If he does have that instant positive reaction, you could stop the med right away. Praying for wisdom for you. Cathy

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    1. This is good to know, I had no idea about this. Thanks for the heads up!

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  14. Hi all ,
    I work with kids with all kind of disabilities ,specially Autism ,but normally we do not use medication specially in Aspergers ,they require play therapy occupational therapy ,speech therapy and sometimes Aba .
    Medication will not adreess the real issue .
    The more you expose your child to the environment the better he will function .

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    1. Thanks for the feedback! I really hope we get the services to help him with these therapies, I agree that we really need them to make a difference!

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