B’s obsession

[Copabanana]

Swot has a point. I do not know your system. Only mine. That is why I suggested you go to a family attorney with respect to cps and in terms of the consequences of options..

But how in the world could it be wrong to put the truth in writing to caregvers?

 

[B’smom]

We do have the duty to report here in Ontario. If they think a child is being abused or neglected, they are legally bound to report it.
I don’t know if they haven’t called because it’s a sibling and not an adult? And because he hasn’t hurt LO “severely” enough that they consider it “typical” sibling thing.

The psychiatrists comment was referring to the daycare thinking that perhaps J/I were hurting LO.

But I’ve literally sat in a room during a wrap meeting where the supervisor for CPS was present (everyone is and then each agency offers services when appropriate for various families as they go through the day). And I bawled because B almost kicked LO down the stairs and I didn’t know what to do anymore. No one offered services, they just sent me to the treatment centre out of town (had to wait 5 months to get in). And tossed me more money to hire respite worker.

I’m not sure how CPS works in the states. It’s extremely rare for a child to be taken out of their natural home here. Or to be kept out of their natural home for a length of time unless it’s a sexual offence and even then, they get supervised visitation (it’s sickening really). They’d most likely come in and see we’re doing everything we can. I have 7 years of post-secondary education in the field of early childhood, disabilities and youth with mental health (not saying I’m perfect because I’ve obviously let things get this bad.)
I’m far from it and my belief is that I can always learn new things. I work with the behavioural specialist, I attend all appointments consistently and often request help from the wrap team (usually just get more money tossed at me). There’s nothing CAS (CPS) would/could offer to help other than removing B or the other children. And theyd most likely remove B. If they were removed, they try to place them with family (kinship) and often if that’s not the case, the natural parents get their children back. Majority of children in care have had their parents sign over their rights or come from parents that really cannot have their children due to addictions/severe mental health concerns (schizophrenia).

I do have emails saved from me to B’s mental health worker about B’s behaviours to LO and asking how do I decide which child is more important. And what should I be doing.
I at least have some physical proof.

I’m going to call and get information from a lawyer tomorrow and then call his mental health worker and get more information and perhaps direction. The mental health worker works with CPS (they’re in the same building and use the same doctors etc for assessments). There’s not a single professional involved with our family that isn’t aware of B’s aggression towards LO or others.
It wasn’t until I mentioned putting B into care that someone ever mentioned CAS getting involved if B hurts LO bad enough. Never really crossed my mind

 

[Copabanana]

It never crossed my mind that you were not doing everything within any human mother's capability, and more.

And by your last post, I am reassured that there is documentation. Being one, I do not necessarily trust professionals. But that is my problem.

I do not see how anybody could ever doubt your intention, your capacity, your devotion, and your responsibility, and your protection of your children and their best interests.

But the thing is, you are human. You are not bionic.

It sounds like the situation at this point is thus: You are doing everything. You are trying everything. You are accessing any and every form of support and treatment and counsel available to you. At this point, while the situation at times feels intolerable, you believe it is in the best interest of your family, in b's and your own best interest to take it day by day. To have intention and hope that, together, you can do this and B will get better. And that you can act to mitigate or control the risk to your other child and to yourselves.

On bad days, you feel you cannot do it. But most days, you are willing and feel able to keep trying. Your husband and you are communicating, and gradually you feel you are coming to a common understanding. You are more able to support each other and to comfort each other.

Personally, I think the attorney makes sense. Because this is an evolving story. You need to know your options, and how to best protect them. For each of you.

I hope you find it helpful to post. None of us really understands your situation fully, and that is why we seem to come from left field. In a short time we will be as aware of each contingency as you are, and you will not have to keep explaining things to us. We are in this with you. Please know that.

 

[BusynMember]

Very different in the U.S. Kids are mostly removed if parents substance abuse or abuse but if the child is dangerous, especially to other children they may take the child and put him or her in foster care or residential. When my friends son, who was very violent and had been in care on and off was removed when he said he was attracted to young girls. He had an eight year old sister. He was removed and never lived at home again and tjey didnt want him to. The police had always been at their house when he broke a window or hurt his sisters or ran away. Now he is of age and pretty much homeless and on drugs. His mother died, his father remarried and stopped caring about any of his kids. All are of age but are hurt and the youngest is 15 and lives with her birthfather now since he is a relative of her fathers. All of the children were adopted so tjey wete abandoned once and then by adoptive father. Its a sad story. But they do rrmove children here and ate quicker to diagnose and treat kids, which I feel is better than waiting for a total crash. Or if they fear someone may get hurt.

Mandated reporters tend to report. I was one when I was a foster parent and when I worked at Headstart. I never turned in anyone.

I hope you can get useful help for B.

 

[Elsi]

I think Copa has given you wise counsel regarding the lawyer. I hope you find one that can be helpful! It sounds like you have done everything humanly possible. And are better equipped to handle this than the vast majority. You have done so much already - no wonder you are reaching the end of your rope.

I know that feeling of helplessness when trying to navigate the system to help your child. When S was 16 she went through what I guess you would call a psychotic break. Tried to run me down with a car. Was put on emergency hold. Back 3 days later with not much more than a ‘good luck, we’ve done what we can.’ Two weeks later she walked out of a test at school, broke the mirror in the girls bathroom and slit her wrists. Another hospitalization, another psychiatric hold after her ER treatment. They could not or would not hold her longer than a few days, or diagnose or prescribe medications. She was referred to an adolescent psychiatrist for that and sent home. It was a nine month waiting list to see a psychiatrist that treated adolescents. NINE MONTHS. With a suicidal, psychotic, and possibly dangerous 16 year old. I can’t describe how helpless and alone I felt.

I am praying you’ll find some help navigating this system to get the help you need for B, for yourself and for the rest of your family. We are with you.

 

[B’smom]

It’s rare to CAS to keep children here (or at least in our area).
There was a story a while back where they went in and the 10 month old was severely dehydrated (mom was just giving water and not formula), broken leg (that was healing- never got medical attention). Mom got custody back within 6 months. They may continue to be involved (random check ins, etc) but their goal now is to keep families together and to educate rather than take. But there are cases where some parents never get their kids back. Typically it’s because of substance abuse (not marijuana though since it’s pretty much legal) or parents are mentally unstable. But I’ve seen where a child claimed they were sexually assaulted and still forced to see that parent in supervised visits. Although that was visits and not actual custody.


Copa- I appreciate all “the left field” stuff. It makes me think about things in a different light. Things I had never considered before. J has free lawyer advice through his work so we’ll do that tomorrow.

SWOT- I’m also technically mandated to report because of the field I’m in. But it’s very dependant on what’s going on here though. Ex: If we had a family that was already involved with certain agencies and actively working with them then no one will call. Unless of course it was straight out abuse, kid says “my daddy/mommy hit me”.
The mental health worker for B is very similar to CAS/CPS but it’s all voluntary. There isn’t much his mental health worker can do that they would do be able to do- except remove the child/B. But I guess you never know and they could make a liar out of me .


Eli’s- that is absolutely heartbreaking. I’m so sorry you guys had to go through that! I can’t imagine how scared you must have felt!

 

[BusynMember]

They want to preserve families here too but what is a family. DNA? Nonsense.

A toddler was removed and put into care. He wore a body cast. His drug addicted mother had smashed him into a wall and broken almost every bone in his two year old body. He went to a loving family who nursed him to health and he called them Mom and Dad. They wanted to adopt him alhough he had many challenges due to the birthmothers abuse and substance abuse during pregnancy.

The boy was four now, comfortable and safe and loved. Family was told they couldnt adopt him because his birthmoher was rehabilitated now. So he went back.

A few months later he was back in care. Birthmother decided she didnt want him.

So did they give him back to the family who had cared for and loved him? No. He went to a new family who had never met him.

By now he was becoming a big behavior problem from all that had happened to him and to being swapped family to family. The new family kept him a year then said they didnt want him anymore.

Only then did he go back to his real family, the one who had nursed him and had wanted to adopt him. He was a mess by now but I heard they adopted him.

The system is such a mess. We quit foster care after a few years. It needs an overhaul. Sad for those who need it. Just being able to give birth doesnt make anyone a fit parent.

 

[ARoomWithAView]

My heart goes out to you. You have dealt with years of trauma and deserve nothing but support and empathy.

Is your son under the care of a neurologist? Your mention of a high fever at the very beginning of the personality change makes me wonder about encephalitis. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2915599/

I too have a son that changed drastically following an illness when he was quite young. We have been on a roller coaster for over a decade (with a cancer diagnosis and brain radiation thrown in along the way). My son is well into his teens and is doing better - many days I did not think we would ever get to this point, though.

 

[Copabanana]

• These are symptom of encephalitis: I will go look if I can find behavioral changes:
• 
  
• Fever
  
  
• Headache (or bulging of the fontanelles, the soft spots on a baby's head)
  
  
• Sensitivity to light
  
  
• Neck stiffness
  
  
• Sleepiness or lethargy
  
  
• Increased irritability
  
  
• Seizures
  
  
• Skin rashes
  
  
• Difficulty talking and speech changes
  
  
• Changes in alertness, confusion, or hallucinations
  
  
• Loss of energy
  
  
• Loss of appetite
  
  
• Unsteady gait
  
  
• Nausea and vomiting

 

[Copabanana]

Here is a link that talks about behavioral changes. https://www.encephalitis.info/emotional-and-behavioural-problems

It is written without distinguishing children from adults, but it is a start. I will see if I can find info specific to children.

Here's a scientific article, linking conduct disorder in a child, an 11 year old girl, with encephalitis.

Conduct disorder—A sequelae of viral encephalitis

Here's another scientific article referring to personality changes, and autism-like behavior associated with encephalitis.

Atypical enterovirus encephalitis causing behavioral changes and autism-like clinical manifestations: case report

 

[B’smom]

Is your son under the care of a neurologist? Your mention of a high fever at the very beginning of the personality change makes me wonder about encephalitis.

Is that what your son is diagnosed with? How did they diagnosed him so many years after the fact?


He is not currently. We did go for a MRI last year and they said that everything was normal (I requested it because I have a condition where my cerebellum hangs to low and caused nerve damage).

If it was encephalitis, would it still be visible almost 8 years later on a screen?
My fear is that we’ll never know the answer. I do feel that’s it’s a piece to the puzzle that is B and it would help give us answers. And maybe a better direction on how help him better.
His first psychiatrist spoke about sending him to a developmental peadiatrician but then he was admitted to the treatment centre.

We definitely have to jump through hoops in Canada to get to certain doctors. I’m not sure how I would be able to convince the doctors to refer him to a neurologist.
The government won’t even approve genetic testing for him because “he’s not severe enough” Sounds like I need to do a better job advocating. I have the day off, I guess I have more phone calls and appointments to make today
Thank you!




SWOT- that’s heartbreaking! I can’t imagine being passed around like that with no care.

 

[Copabanana]

Has he been to a child neurologist? Is that a possibility? (A medical doctor specializing in the brain; different than a neuropsychologist.) Perhaps in your system a specialist, who is a medical doctor might be easier to access.

When I get home I will see if I can find out if there would be residual brain changes that would be detectable on an MRI.

The thing is, many or most of us don't know conclusively what were the causes for our children. Even for those who do know, (like me) it does not help. We have to deal with their lives (and our own) as they emerge. Knowing the cause, for me, has not made a difference. Because I had the mindset from the beginning, that together, we would overcome the past. It worked very well, until it did not. It stopped working when I no longer had any control, and when my hope, my attitudes, my work, no longer "worked" in his life. Despite this, it took a long time before I accepted this reality.

You are very much ahead of me in many things.

 

[Copabanana]

https://www.pedneur.com/article/S0887-8994(15)00112-5/pdf

http://www.ajnr.org/content/27/9/1919

There seems to be a literature on use of MRI to confirm the diagnosis of encephalitis in children. Note the above article(s). I am googling MRI childhood encephalitis. There is more if you choose to look.

I am reading again your post where you say he had the normal MRI. Which is certainly a good thing. I am wondering whether when they do an MRI with suspected encephalitis if there are specific areas of the brain that they look at, that need to be illuminated and/or a specific point of attention, not typically investigated in a "regular" MRI.

The thing is, the doctors are not stupid or malicious. There may be a motivation within the Canadian system of medical care to avoid costs; but that the physicians be involved in a conspiracy to avoid certain diagnoses seems over the top.

But the thing is in the USA there are very strong biases in diagnoses, which out of the blue come to be "seen" everywhere for motivations that are not necessarily pure as the driven snow (think ADHD, or even Bipolar in children) and other diagnoses that are avoided at all costs (say autism that could be related to immunizations.)

I will leave it with you, what you do with this. Take care.

 

[B’smom]

Copa,
Thank you for you everything! I haven’t had the time yet to read the links you’ve posted. The facility gave us a new diagnosis for B and I have been trying to gain more knowledge about what it is (DMDD- disruptive mood dysregulation disorder) WHAT A MOUTHFUL!!
It doesn’t seem to be too much as it wasn’t introduced into the DSM until 2013. I bought a book and plan on reading more tonight. I have told them that B cannot come back until a safety plan is in place to keep LO safe. If I have to involve CPS I will but I’ve been adviced to hold off until the meeting tomorrow and we where we can go from there. Hopefully by next Friday things are in place because that’s when he’s supposed to come home.
Thank you again for everything!

 

[B’smom]

Has he been to a child neurologist? Is that a possibility?

No he has not, it would probably be very hard for me to convince our doctor to refer us. There’s no self-referral to specialists in Canada. I’d have to have a good reason to get them to send him to one. I’ll have to do more research with his new diagnoses and their potential impact on the brain.

 

[Copabanana]

I found an article: disruptive mood disregulation disorder: current insight. Baweja et al.

Don't hold your breath. All this is is a placeholder diagnosis. By that I mean some words, a label to put on instead of other labels, other words.

This could be applied to kids with several different issues including autism, ADHD, etc. It was conceptualized because of concern about the over diagnosis of bipolar in children. Which was very controversial.

But this diagnosis too is controversial. Little if any research, little study to back it up.

Not to worry. You are doing everything right. I applaud you.

Please let us know what happens tomorrow.

How is he doing?

 

[Copabanana]

I'm on the train so can't do much.

Found a study. Univ of Nebraska. ID nct0282-4627. 2016 Oxytocin irritability/emotional dysregulation of disruptive behavior and mood disorder. (On cell. Sorry if not 100 percent accurate.)

The gist: there may be a receptor in the brain (in amygdala) that has a heightened response to negative emotional stimuli. It may be able to be detected by mri and/or meg. It may be treatable by medication. (I am taking notes on a newspaper.) It is genetic.

I will try to look up more later. I don't know what oxytocin is.

If we collect research it would make a case for a child neurologist and genetic testing.

These are wild goose chase but sometimes the goose is caught.

 

[Copabanana]

OK. Oxytocin is a hormone produced by hypothalamus.

It seems that low levels of this hormone (please google, as it is complex) as well as another hormone called vasopressin are noted in kids with autism. These hormones seem to be correlated with emotional dysregulation. In one study 34 kids between ages 6 and 12 were given a nasal spray with oxytocin hormone. Their social skills, empathy, and it seems emotional control improved significantly

I forgot to note where this study was done but there is other work being done at Stanford university in Palo alto CA. All this is very new. 2017.

Would it not be a miracle if it were only a deficiency in a chemical that something so simple as a nasal spray could help?

I am only typing what I have been able to copy in a few minutes. It seems though that research is being done.

At the facility there must be a child psychiatrist. The thing is they might not know of this research. I do not know if these are clinical trials or not.

But because these are naturally occurring hormones maybe they are available.

To me, I think it is reasonable to question in the meeting their thinking about what has given risen to this emotional dysregulation and to ask for genetic and neurological testing. At the very least you begin a paper trail.

I might mention the following (if you feel comfortable):

I understand that emotional dysregulation can occur because of hormonal deficits. I also understand it can be related to detectable (by mri and other types of brain imaging)) heightened responses in the brain (amygdala). I understand this can be easily treated. Where can we go from here? I am asking for your help to get my son to a child neurologist and geneticist.

Put this on them. Put it in writing. (You are going to hate me very, very soon.)

 

[B’smom]

I’ll look into the hormone if I have time tonight, but definitely by tomorrow am before the meeting.

I completely understand on the controversial aspect of it. I have had a very hard time finding any real information on his diagnosis. Most appear to repeat the same information over and over again. Even the book I bought, appeared to be an explanation of the diagnosis. The diagnosis itself fits him to a T. He’s quite grumpy all day every day.

We have unfortunately been to a geneticist. He had a microduplication on 14q12 on a basic test but they won’t do further testing (government won’t approve it). J and I have talked about when we go back in November to the geneticist that we’ll inquire how much it will be to pay for it out of pocket. The tests unfortunately, are sent to the states as we don’t have the resources in Canada. (Kind of like how we don’t have treatments for Lyme disease here). There are a few studies with his microduplication and speech/aggression concerns but nothing seems to be concrete.

The child psychiatrist is the one that diagnosed him with it. He was also diagnosed with ADHD, developmental coordination disorder and childhood apraxia of speech. They took away his Obsessive Compulsive Disorder (OCD), ODD and Generalized Anxiety Disorder (GAD) diagnoses. I’ll definitely ask about the hormones. He’s currently on Straterra, Seroquel (sorry I know my spelling is wrong) and another medication for ADHD but I cant remember the name at the moment (like concerta but not in the Ritalin family.) he’s been on many other medications as well that haven’t worked. Maybe this would be a better alternative.

 

[Copabanana]

If you mention it, i would go in with the specific names of what it is and what it affects and how it is treated. Good luck. Please let us know.