Family and Caregiver Schizophrenia Discussion Forum

Tips and Tricks for Getting the Right Diagnosis


#1

I have heard so many theories from so many people. Over a dozen psychiatrists have evaluated my daughter in three years. She’s been diagnosed with severe depression (2015) and treated for it with a little success. It gave her coping skills essentially. Then in July 2017, she was diagnosed with Major Depressive Disorder with Psychosis and Oppositional Defiant Disorder. Now, while inpatient t this time, hey tried to diagnose her as Bipolar Type 1 with psychosis. I balked at that because it just doesn’t seem to fit to me. Today they tell me she has a generalized anxiety disorder so bad it’s causing her to hallucinate. I can find no evidence that’s even possible. Am I being placated?

I made a list of the schizophrenia diagnostic criteria and then described Libby’s symptoms that matched it. Still, they are focusing all around it or on a single symptom. How do you get these people to do their jobs properly and stop skirting what’s going on? It takes up two years to get SSDI after a diagnosis of PSCZ. But I can’t start that clock until they diagnose her and I can’t seem to find anyone who will, even in an acute setting. I don’t necessarily want it to be true but evidence is evidence. And at this point, they’re not ruling anything out, they’re just spinning in circles.

Tonight they’re going to stop all of her meds and give her Lexapro for the GAD and see what happens. Why do I feel a little like I’m playing russian roulette, except with my daughter’s mind?


#2

Yep, sounds about right… They make diagnoses based on whatever med works LOL… NOT funny, sucks but par for the course…

Probably not, she might be deteriorating and becoming Med resistant…


#3

Oh, I hadn’t considered that. Well, isn’t that a wonderful idea? As if there isn’t enough to worry about? lol God, I love mental illness. At least I found my sense of humor again after a week of this.

Okay, so I’m focused on taking this one step at a time and the hospital seems willing to follow that plan. The one thing we’re certain of is the GAD. So they’re going to observe her for a few days and see what happens when that’s the only med she’s on. Most likely, due to the low stress environment, she may or may not start hallucinating again. I’m not opposed to the idea that anxiety is contributing to her issues but I don’t think it’s the source of her issues if that makes any sense.

So my big question is, let’s say the med works, her anxiety is less, and she doesn’t show any signs of psychosis. That meets the criteria for stable. They release her to us (most likely Saturday or Sunday), which would be great so she’s home for Christmas. She always does much better at home than at school. She’s home for the winter break until 1/4/18 when school starts. What do I need to watch for at that point when her triggers start and her stress level climbs? School is her top one stressor, and unfortunately, there’s nothing I can do to change that much. I can try to work with the school, who are very willing to cooperate, but I don’t have a clue what to tell them. Any ideas? She has an IEP already for dyslexia. Do I get the committee together and try to give them some information without giving them everything? The GAD is official so that much I need to share but what about the rest of it? Do I share my suspicions or do I wait?


#4

Her age?..


#5

She’s 10, almost 11.


#6

OMG, sorry to hear, I am not qualified to help with how to approach schools/Docs/Meds at that age… Hopefully someone will add here???


#7

Author, if there is anything I have learned lately is not to suggest anything to the doctors. It seems like they take an about face and head in a different direction. I have a friend who is brilliant and she has diagnosed herself. Watching the resistance that she consistently received spoke volumes. In my opinion just state the facts and let them make the diagnosis.
Our role as parents is to love and support our children. They are the doctors. I’m saying that as a big know it all myself and I hope I don’t offend you.
The hospitalizations and the medicines and the records you keep will determine disability. So keep every doctor diagnosis and every medicine record. Start a binder of all discharge papers. Keep everything. That is my best advice. I pray a lot too and it helps me. God bless you and your daughter.


#8

I agree with you completely.

One of my friends had very visible pink eye and went to the doctor. She said, I have pink eye. The doctor: no, you don’t.

Next time she had it (lots of time spent with small children), she walked in and said, something’s wrong with my eye. The doctor: you have pink eye.


#9

I think you go to the IEP team and provide them with the discharge summary from the hospital including the diagnosis. You may want to request that she be reevaluated to consider Emotional Disability as a special education category. She will likely meet the criteria and be provided more services as a result. When you make this request, do it in a formal meeting or put it in writing to the school administrator. If she is in general education with 25 classmates and only 1 teacher, that could be very overwhelming and as a student with ED she may get access to a smaller classroom environment. Reducing the stress at school sounds important for her.


#10

Wonderful suggestion! Thank you! I didn’t know emotional disturbance was a SpED category. I am only familiar with the dyslexia accommodations. Her general anxiety might be enough for that.


#11

Thanks! I have a 4 inch binder already started for her and working on records request to her prior hospital. I am starting a daily timeline and record of symptoms. We will see how it goes. Thanks for the suggestions, they helped!


#12

Author, have you considered home schooling? My son begged me to home school but my husband was against it. His senior year the anxiety was so, I did sign up with a CA online school. I wish I had done it sooner. I was so impressed with all the teachers at Laurel Springs in Olajo Ca. God bless


#13

We did consider it but with her dyslexia, it’s not an option. I also work fulltime and so does her father, for now. We are working on getting both of us more flexibility and I may work from home in the future.


#14

If I were you, I would definitely present the findings to your daughter’s special education team, as soon as humanly possible. The team needs that information to provide your daughter with what she needs to have a fighting chance to stay mentally stable and make academic progress. Be transparent with what you know and believe. It will help your child get what she needs.

It sounds to me that your child’s emotional disability is her primary disability, the one that will most impact her ability to make academic progress.

Is your daughter currently placed in a substantially separate classroom (with fewer kids and more staff), or is she in a large classroom setting? Do they have an emotional/behavioral program in your district?

Nobody wants their child in a substantially separate classroom, but often times it really is the best thing for them.


#15

She’s in a normal classroom environment. The school is small so I am not sure what if any options are available but will look into it after winter break. We were concerned with making too many changes for fear it would alter or diminish her symptoms artificially. In addition, I wasn’t sure what staff reactions would be. I am dealing with ten humans with their own thoughts and opinions. More than once I have come up against disbelief or ignorance and lack of understanding and a refusal to accept or change. My son had s suffered previously at the hands of teachers who were unkind and targeting him.

Thanks for the feedback.


#16

One good thing I can update. My daughter is being released tomorrow morning. It might not be a Christmas miracle but close enough for me!


#17

Author, I’m so sorry that your son’s teachers didn’t always treat him with kindness. That would certainly make anyone apprehensive about sharing sensitive information about your daughter’s mental illness, for fear someone would judge her and treat her too with less than kindness.

I don’t know who the 10 people are or what their roles are, but maybe you could just a call a meeting with the Principal, the school’s social worker, the classroom teacher, and your daughter’s special educator, to talk about accommodations and possible next steps. At the very least, I imagine your daughter needs very frequent check-ins by the school counselor and opportunities to take breaks away from the classroom whenever she feels anxiety coming on. Is she getting these supports? I hope so.

I’m happy you will have your girl home for Christmas!


#18

The criteria in general are difficulty building and maintaining relationships with peers and adults, heightened emotional responses under normal circumstances, pervasive mood of unhappiness or depression which impacts educational performance, and somatic complaints which interfere with functioning. They don’t have to exhibit all of those traits but must have one that impacts her education. If it ends up that she meets that criteria, the IEP team will then develop and IEP to address her social/emotional, social skills, or interfering behavioral needs through special ed services and can include counseling as a related service in school. It’s certainly worth a try given that school is her big trigger.


#19

Prior to the most recent crisis she met with the counselor weekly for lunch. We have no real monitoring in place so that’s the first thing I would like to do. I have emailed the school principal for some help and guidance. The team includes the school principal, assistant principal, Libby’s three teachers, school counselor, dyslexia specialist, school nurse, and an aide who mainly records everything. And me of course. Up until now we had no idea how bad her anxiety is/was. I hate to say I have had my head in the sand for years, convinced she was ‘normal’ and refusing to accept otherwise. It just seemed to me to be a lot of drama all the time so I blew it off. I am ashamed to say I was really callous about the whole thing. I didn’t set out to be. It all seemed so frivolous - kids being mean to each other. I had been bullied before, the school was doing what it could but I couldn’t keep running to them all the time. So I believed I was just picking my battles. While she suffered everyday, all day, I did nothing. I am doing something about it now but it can’t ever make up for it so I just try to move on and do better.


#20

Author, I can’t imagine there’s a single parent on this forum that doesn’t wish they did things differently. There was no “How to” manual delivered to our door steps when our children became sick. I feel guilt for all kinds of things, especially for when I reach my max and lose my temper, but this is seriously hard stuff we’re all dealing with. We do have to forgive ourselves, move on, and get back to work. If we don’t, our MI loved ones will have no-one.