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#1 SnMomof7

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Posted 24 August 2016 - 06:44 PM

I'm not sure where else to ask.

DD2 (10) has a fairly new ASD diagnosis and this morning she did something...new.

I'm not sure where else to ask. We do have an appointment for her next week where we can discuss it - and we will.

She told her sister the floor was tilting, then became nonverbal and ran around the house looking scared, breathing hard, hiding under furniture, in beds, etc. and taking defensive positions for around 20 minutes.

DH eventually got her to write the problem down and she said everyone had green skin, she was very mistrustful of him. He got her outside for a walk down the road and she eventually told him that the floor tilted and everyone turned green. Then she squatted in the yard and played with some sticks. After a few minutes she asked why she was outside.

She lost around 40 minutes. She remembered being on the couch, the floor tilting, and people starting to turn green, then being outside playing. Later this afternoon she recovered some blurry memories of walking down the road. She asked several times what happened this morning and why she was outside. I have her a simple, non-scary explanation.

DH had a brother with schizophrenia, so we are feeling concerned.

I just don't know what to think :(. I've cried. Repeatedly.

#2 Starr

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Posted 24 August 2016 - 07:18 PM

:grouphug:  :grouphug:  :grouphug:  She's lucky to have such a loving family. I hope the doctor has some answers for you.


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#3 Harriet Vane

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Posted 24 August 2016 - 07:49 PM

:grouphug:


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#4 EKS

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Posted 24 August 2016 - 08:06 PM

First  :grouphug:

 

I wouldn't wait until next week to discuss this with the doctor.  At a minimum, I would call the doctor tomorrow, explain what happened, and let the doctor decide if she needs to be seen.

 

My understanding is that hallucinations associated with schizophrenia are most frequently auditory (like 80% of the time).  


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#5 Tiramisu

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Posted 24 August 2016 - 08:19 PM

I'm really sorry.

 

You know I have a very healthy, very normal dd who had a couple of weird episodes when she was younger, always when she was sick. The doctors don't know if it was a fever, low blood sugar, low blood pressure. She has an irregular heartbeat that is aggravated by illness and has a diagnosis of vasovagal syncope (fainting).  I also occasionally get ocular migraines that effect my vision. So I wouldn't expect it to be mental illness but something induced by a temporary physical problem. It could be a viral, vertigo-type of thing. But I've also heard of the tilting with MS, but I don't think that's likely with a child. Seizure?


Edited by Tiramisu, 24 August 2016 - 08:25 PM.

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#6 kbutton

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Posted 24 August 2016 - 08:19 PM

:grouphug:

 

I think I would call the doctor before the appointment--even if it's not addressed sooner, you might need a bigger time slot or something like that.

 

 


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#7 cherylswope

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Posted 26 August 2016 - 11:48 AM

Dear SnMomof7,

 

As a homeschooling mom of two children with schizophrenia, I have some suggestions I wish I would have received years ago. I hope this helps:

 

-Even if this episode can easily be explained as being something other than schizophrenia, create a log before your appointment.

-For this log, take time to interview your daughter privately in trust and support. Ask about (at least) three topics: visual disturbances, auditory misperceptions, and paranoid or suspicious feelings. Think of more, if you can. Word these in whatever way will best elicit honest answers. Examples:

-Ask her to tell you about other times she has seen odd things or seen things in an unusual way. Where was she? What did she see?

-Ask her when she has ever heard odd things or heard things in an unusual way. What did she hear? When did this happen?

-Ask her when she has felt suspicious or mistrustful of someone. Anyone else? What happened to make you feel this way? Let her talk.

 

Allow plenty of thought time and response time. Tell her she can follow up with you later, if she thinks of anything she did not mention.

 

-Jot down anything, even if it seems small.

-Add your own observations. Think back to other times when she has been suspicious or mistrustful when such suspicion was unwarranted. Think of any time she might have said, "Yes, Mom?" when you did not call her.

-Add all family history of mental illness. You mentioned that your husband had a brother with schizophrenia. I am so sorry. I am told that life expectancy is 25 years less for this. However, as with anything, early intervention is key. I am hoping for a much longer life for my two!

-Request a professional, standardized screening for schizophrenia, given the family history, at your next appointment. Get a referral to someone, if this person cannot do this.

 

 

Our story:

My daughter's childhood-onset schizophrenia manifested insidiously with visual hallucinations (age 4), paranoia (ages 5-8), disorganized, odd behavior, and then finally hearing voices (age 11). We caught my son's at age 11-12, although for him this was earlier in his progression. The children are twins, adopted, and their biological mother had schizophrenia. When we took my daughter to a university clinic for Early Schizophrenia Identification, my son was evaluated too.

 

Both children now want others to benefit from their experiences. Both have attended NAMI meetings and shared their stories.

 

 

My son presented with "one day the street was slanted, so I could not figure out where to place my legs when I walked," and, "Sometimes I think my mom is calling me, but it turns out she's not." Like your daughter, my son also had ODD, sensory issues, ASD, and ADHD. I added my reports of his paranoid delusions in normal social family settings. They followed up with testing. His symptoms had been so subtle, I was shocked (to tears) by the dx of pre-schizophrenia (schizotaxia, they called it); yet that diagnosis may have saved his life. Moreover, because he received treatment very early, he retained far more of his cognitive function than, I believe, he would have otherwise.

 

All of this was ten years ago for us.

 

Both children continued their education through high school and now serve others in many ways. Homeschooling was a Godsend for us. Classical education specifically assists their thought processes in profound ways to this day.

 

 

I know this is a very long response and, I'm hoping for your sake, may be completely unnecessary for your daughter's situation. However, little exists on this topic in homeschooling communities, so I wanted to respond when I saw the subject heading.

 

I do hope that your daughter's experience will be rather easily explained away. Even so, please consider proceeding with the above suggestions, if only to rule out what you fear.

 

 

And if it turns out that you are, in fact, seeing some symptoms, your support of your daughter will be invaluable. Even if those worst fears are realized, we have learned that insight into what is happening, trust in someone who loves her, and early intervention predict a much more favorable outcome.

 

 

Again, I hope all of this was unnecessary. However, if I can help at all, let me know.

 

 

Cheryl

 

Simply Classical: A Beautiful Education for Any Child


Edited by cherylswope, 26 August 2016 - 12:16 PM.

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#8 dmmetler

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Posted 26 August 2016 - 01:13 PM

Does she have migraines? Basilar arterial migraines, for me, present with visual disturbances, feeling like the room is tilting, colored streaks in my vision, and I do lose time as well. I can talk during an episode. It's strange. For me, it's heavily hormonal (all my migraines are), and while they were bad in my teens/early 20's (I hit puberty late), stabilized dramatically once I got through puberty. So that may be another possibility. Does she have a neurologist involved in her care? That's who diagnosed and treated my migraines.
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#9 AngelaVA

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Posted 28 August 2016 - 11:26 AM

I'm not sure about the skin changing color part but hallucinations that the world is tilting, spinning, getting bigger or smaller are often associated with partial seizures. Gaps in memory are also associated with seizures. There is a fair number of people who have both ASD and Epilepsy as well. I think it would be worth investigation from that standpoint as well. I would ask for a sleep deprived or 24 hour EEG vs a regular 20 minutes EEG which almost never picks anything up.


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Edited by AngelaVA, 28 August 2016 - 11:29 AM.

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#10 SnMomof7

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Posted 21 January 2017 - 08:45 AM

Thank you all. Her doctor referred us to just see the psychiatrist, who did mention that psychotic episodes are not uncommon with ASD, sometimes more sometimes less.

She did end up on an anti-psychotic used for schizophrenia. It has been such a blessing. She does exhibit paranoid behaviour. I'm just not sure when it crosses the line into schizophrenia.

I will talk to her psychiatrist further however.

It had been a busy year, we had two more kids diagnosed with ASD, and two in diagnostics. Our psychiatrist started genetic testing with our oldest. He has mentioned my own autistic traits several times so I may also purse a diagnosis.

Cheryl: Yes, my husband's brother died young at 56 of a massive heart attack. We do have some confidence that he is now at peace and free, he had a difficult life. He had a rather severe case of schizophrenia and we lived in the same home with him for several years when we were first married.

I'm so glad your children were able to access help early. Our second daughter who I am speaking of here does have many suspicions and paranoias, so I'm not ruling it out. She also has a persistent set of imaginary friends that she says she has real conversations with. It's difficult for me to say on that one.

Edited by SnMomof7, 21 January 2017 - 09:23 AM.

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#11 kbutton

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Posted 21 January 2017 - 07:47 PM

Thank you all. Her doctor referred us to just see the psychiatrist, who did mention that psychotic episodes are not uncommon with ASD, sometimes more sometimes less.

She did end up on an anti-psychotic used for schizophrenia. It has been such a blessing. She does exhibit paranoid behaviour. I'm just not sure when it crosses the line into schizophrenia.

I will talk to her psychiatrist further however.

It had been a busy year, we had two more kids diagnosed with ASD, and two in diagnostics. Our psychiatrist started genetic testing with our oldest. He has mentioned my own autistic traits several times so I may also purse a diagnosis.

Cheryl: Yes, my husband's brother died young at 56 of a massive heart attack. We do have some confidence that he is now at peace and free, he had a difficult life. He had a rather severe case of schizophrenia and we lived in the same home with him for several years when we were first married.

I'm so glad your children were able to access help early. Our second daughter who I am speaking of here does have many suspicions and paranoias, so I'm not ruling it out. She also has a persistent set of imaginary friends that she says she has real conversations with. It's difficult for me to say on that one.

 

Thank you for the update.

 

Regarding the bolded, good job! That's a lot to handle all at once.



#12 cherylswope

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Posted 24 January 2017 - 05:03 PM

Thank you all. Her doctor referred us to just see the psychiatrist, who did mention that psychotic episodes are not uncommon with ASD, sometimes more sometimes less....


Cheryl: Yes, my husband's brother died young at 56 of a massive heart attack. We do have some confidence that he is now at peace and free, he had a difficult life. He had a rather severe case of schizophrenia and we lived in the same home with him for several years when we were first married.

I'm so glad your children were able to access help early. Our second daughter who I am speaking of here does have many suspicions and paranoias, so I'm not ruling it out. She also has a persistent set of imaginary friends that she says she has real conversations with. It's difficult for me to say on that one.

 

 

Thank you for the update, SnMomof7.

 

Just be sure to tell the psychiatrist about the family history, if you have not already.

 

You can also request standardized testing to include cognitive testing. Our schizophrenia clinic's researchers have found some prodromal (early stages) cognitive indicators to be common among those developing psychiatric disorders. If your psychiatrist is not familiar with these, you might ask for a consultation with someone more familiar with prodromal identification and treatment.

 

At the very least, you might request the KIDDIE-PANSS. [The PANSS, for 18 & up, is often administered to assess positive (hallucinations, paranoia, delusions) and negative (apathy, withdrawal, flat affect) symptoms.] The KIDDIE-PANSS is normed for children under 18. See other schizophrenia assessment tools here, in the first full paragraph, left column, of this 2015 reference on child & adolescent psychiatry.

 

 

Sometimes subtle signs can indicate prodromal psychosis, so if you're not familiar with the "prodrome," I would encourage you to ask about or read about this.

 

Dr. Tyrone Cannon, now at Yale, was the first to open my eyes to early i.d. and treatment. I heard him speak, and was persuaded! If you are interested and have time, here are some of his published articles on the topic:

 

 

 

 

 

 

So good to hear your daughter is receiving help, especially when you now have other children's needs to address. Research findings also indicate "High structure, Low stress" as being helpful for both mom and kids, so take good care of yourself.

 

This book was a godsend for me. Even if you are not facing schizophrenia, the information may be helpful. And it looks like you can now obtain it used for just a penny!

 

https://www.amazon.c...e schizophrenia

 

 

(Pardon not hyperlinking.)

 

 

 

Thanks again for the update. I often wondered.

 

Cheryl

 

 

 


Edited by cherylswope, 24 January 2017 - 05:06 PM.