Our story, and Considering RTC
Hello! I'm new to the Balanced Mind and just need to share our story. I welcome any thoughts!
I am a single mother from Ontario Canada, raising two children (10, 11) and working on my Masters of Education. My son (11) was always a little "off" but I really didn't start to see what I would call "Symptoms" until he turned 7. He has always been what is termed as "slow to warm up" meaning he watched others do activities before he joined and didn't like to meet new people or try new things. He had INTENSE separation anxiety as a child, for the first 8 months of my first year in college, the daycare teachers would need to peel him off me, screaming. He resisted any change to ANYTHING, from his routine to the layout of his room, God forbid the change from crib to bed. As he grew older, he had issues with sensory things...wouldn't walk or sit on grass, couldn't tolerate tags on his shirts, wouldn't eat some foods due to texture and would "chipmunk" it in his cheek until it needed to be spit out. THe biggest obstacle we had were shoes and socks. If the socks weren't JUST RIGHT, we would be an hour in a meltdown trying to fix them. As a mother, and I'm sure some of you know what I mean, I got so familiar with the "correct" movement while putting on the socks to prevent nuclear meltdown.
At 7 he began to become oppositional. He was often angry, and began to become explosive with little or no provocation. He began verbal and physically attacking his sister (12 months younger) when previously they were inseperable. He began to have trouble in school, and trouble with peers. He began to worry about things.. couldn't handle anyone running late, and it got so that I couldn't tell him about any plans we had until just before we left, just in case something went wrong. He just couldn't handle it.
His issues got worse when he became 8, the anxiety rising and beginning to manifest physicallly. He began rubbing his knuckles under his nose until he had two raw lines when he was nervous. He began snorting incessently (and I would say subconsciously). He still does it now, all the time. It is most prevalent when eating, watching television, or when he thinks others are talking about him. His abusive behaviour became much worse, a lot more physical aggression and angry verbal explosions directed at both his sister and myself. He began "trashing" his room in a rage. He became obsessed with fire safety plans and needed to hear ours EVERY day before dinner for 8 months, even though we had lived in the same place for 2 years. Nothing had changed. I finally mananged to get him into a psychiatrist, and we attempted Zoloft, with no improvment. SHe then tried Prozac, which led to a major crises.
At 9, he began to report very strange things. He talked about a "man" that came from the corner of his room at night and woke him up by tapping him on the leg. He told fantastic tales of this man, who would tell him to sneak out of the apartment while we all slept, to jump off the balcony cause he could fly, and stole his favorite toys. One Saturday morning I discovered that he had smeared little lines of feces in the corner the man comes from, along the foot of his bed and television stand. He had no answer for it. In fact, he had no emotions about it at all. I learned later that this is called "Flattened affect". The pdoc called this a "psychotic break" and started him on Quetiapine, low dose. The dosage increased as his hallucinations gained power, he felt the man touching him, he heard whispery voices that were too loud for him to hear the television, or us talking to him. He heard clawing noises on the carpet, saw bugs in the corner that the "man made come". He started hearing voices telling him to hurt us, and hurt himself. When the man came, he was scared. In a panic actually. Sometimes he saw "shadowy men" that followed him around. They came to school. They came home. I was in a nightmare. One time he told me that the man had given him a helmet and taken him to his underground lair, where he had tons and tons of computer screens. He was convinced those screens held all the private information of everyone in the world. He began asking for a safe to keep his favorite toys in. The Quetiapine went up and up and I was in contact with the pdoc by phone daily.
Then came the scariest moment of all. One Friday evening after 9pm, my son came to me from his bedroom hysterical. He kept saying he needed to go to the hospital because myself and my daughter "were not safe". The voices told him to find the kitchen knife with the black handle and plunge it into my daughter's chest while she slept. That if he didn't do it, he would have to hurt himself instead. He confessed he thought about stabbing me in my sleep, but he was afraid I would wake up and catch him. That the voices tell him he is a bad kid and not worth it. That he cannot trust me because they say I'm going to hurt him. I spent the weekend in his stripped bedroom, blocking the door with a sofa that I slept on. Monday - he was hospitalized on the pediatric psych unit at our local hospital. At 9, he was by far and away, the youngest on the unit.
He spent 2 weeks on the unit, where they stripped his meds and started over. The hallucinations are under control now - he has been in remission (as far as I know) for a year and a half. He takes 200mg of Seroquel XR daily. Although I am happy those demons do not torment him, there is a whole other host of issues that are getting worse. His aggression is off the charts. He is explosive, argumentative, oppositional and verbally/physically abusive to his sister and myself. My 10 year old daughter spends half her time living at her fathers house now, as she cannot handle the pressure at home. Our relationship has deteriorated beyond recognition. My son has executive functioning impairment, struggles with school (despite IEP's), and cannot make friends. He is paranoid, he thinks any conversation out of his earshot is a negative one about him, that his peers are out to get him, that everything is everyone else's fault. He checks the expiry dates on our food because he thinks I'm going to feed him bad food and try to make him sick. Any recognition of the son I once had is gone, gone, gone. Where he once had "a lid" on his aggression, meaning he could function fairly well during the school day and fell apart at home, it is now leaking out. He is fighting physically with his best friend daily, with me, my daughter and anyone around him.
Our pdoc just informed me that although she would like to change him to resperidone, she is going on leave for 6 to 8 months, and we will have NO doctor during that time. Just a bunch of medication refills. She also mentioned she thinks we need to begin the process of seeking out a residential treatment center for him. At first I was floored, I always considered RTC to be the last resort, and I can still control him somewhat. But now that I've gotten over the initial shock, I wonder if now IS the time. I fear waiting until he is a teenager may result in an angry young man, violent and out of control, who feels abandoned and is unwilling to learn coping mechanisms to assist him in getting through the day. No parent wants to send their child away, but I'm at the end of my rope, and I have to protect my daughter, and in some ways - my own sanity. Is there anyone out there going through this too??
Someone once said to me: "How much of this are you going to take?" My answer was: until there is no more. That is the depth of a mother's love.
When your son was younger he was very similar to my daughter. She too hated change, had huge sensory issues with clothes, and also had to be pryed off me every morning at school. Anxiety was also a huge issue for her.
She never has heard voices but did started raging, still not to the extent of your son. We have been using a supplement (Empower Plus) and it is working fairly well.
I think you must find a new doc as the meds do not seem to be working completely. Perhaps you need something additional. Others with wayyy more experience are sure to give you some good advice.
Thank you for the reply Sarah! I appreciate any advice or thoughts anyone can share. Before I found this site, I felt very alone with the whole ordeal. It's nice to know that someone understands what we are going through!
DAG
Oh, my heart goes out to you. It sounds like your son's psychosis is severe. I agree with the first reply--you simply must find another pdoc. If only because this one is going to be gone for some time and you really need one that is dedicated and present for your son.
What other meds are your son on? It sounds like he is on just one--The antipsychotic may help with the hallucinations. Combined with a mood stabilizer it may also help to stabilize him. But on its own, that sounds like a very tenuous med regimen. Is he on mood stabilizers as well? If not, that is another good reason to get another opinion.
Things will get better, but you do sound like safety has become a very real concern. I have had my daughter chase me out of the house when in a rage; later she had explained that she was concerned she was going to really hurt me (she also hears voices) and she was chasing me out for my safety. I have been on the brink of putting her into RTF.
If you have to make the decsion to do so, remember that it isn't permanent, that he is where he needs to be, and that this is a stepping stone toward improvement. Sometimes we can't do it alone.
--
Jennie (37) depression treated effectively with lexapro
Husband (58)
daughter Alison (14)
Bipolar I with episodes of psychosis; Oppositional Defiant Disorder
Recent Meds: Switched to:
Lithium XR Fast acting Lithium
Depakote XR Fast acting Depakote
Zyprexa Abilify
Zoloft No SSRI
Clonidine for sleep
Pravacid Prevacid
Zantac
4 cats (Oscar, Lilly, Mitzi and Morph) 1 foster dog (treeing walker coonhound named Roxy) 4 parakeets (Kiko, Poppyseed, Jack and Charlotte) 7 hermit crabs, 1 goldfish (Lenny) lots of guppies, 2 betta fish (Al and Pebbles)
Pearl - I'd say our medication is tenous at best. I can't seem to find anyone to really be the present and focused doctor I need. Here in Canada, we are based on a referral system, so we basically get who we get. In the area I live in, there are only 3 child psychiatrists in total. It's frustrating to say the very least.
It is not so much my safety that I am concerned about - I can make choices for myself. It is life for my 10 year old daughter that I worry about. She has to endure a lot from him, and she often retreats to her father's house for respite. All that is fine, and I'm glad she has a place to go, but I don't think it is fair that she should be chased out of her home, and that our relationship has to suffer. That is the main reason, coupled with my end goal - to make it ok for him to live a good life.. is why I am considering RTC at all. This is recommended by our pdoc.
I have started the intake process with YET another service here in Ontario, and the earliest intake appt I could make was for mid-Feb. Holding on until the next step. Thank you for responding to me... it helps immensely to know I am not alone. Cause sometimes it damn well feels like it!
--
Double Agent Girl - single mother of two and Masters of Education student
Son - 11, currently dx ODD, GAD and Psychosis NOS. Meds: 200mg Seroquel/day
Daughter - 10, struggling with life in our home
Blog: www.doubleagentgirl.blogspot.com
Your story sounds very similar to my daughters. However, her major symptoms didn't start until she was about 12 or 13. AND...I didn't know anything about the hallucinations until just recently. (She's 16 now, they supposedly started when she was 9).
Risperdal has helped eliminate her hallucinations. (audio and visual...hers sound VERY similar to your son's) I too would sleep in front of her door or with her.
Abilify, another atypical antipsychotic, really is the only thing that has ever controlled her rages. You can use this along with risperdal. Or as others have mentioned, adding a mood stabilizer. (We are in the process of switching pdocs too as they would never try a MS!)
Good luck!!!!!!!!!! Hang in there...you are not alone. I know it feels like it, but just remember that you have support here and we are the one group of people who will not judge you or your child.
--
L Anxiety, Lexapro
Mom to:
T (16) Mood disorder (Depression, Anxiety, OCD, BP, SA, ADD?), Risperdal 1mg morning/night, Zoloft 200 mg., Trazadone 150 mg.
Also has hypoplastic left heart syndrome (open heart surgery 3X), Lisinopril, Aspirin
10th grade-currently going to school online at home.
J (13)
J and C (10)
Mama,
Thank you so much for your comments. You don't know how good it is to hear that anyone has experienced anything very similar to my son. I've often thought a MS would do some good... the pdoc talked about changing him to Risperdal, but now she wont because she is taking leave and cannot monitor him. Its frustrating, especially knowing it will be another 6 to 8 months before she is back and we can think about a med change. Currently I do not think he is adequetly medicated. We briefly tried adding Cipralex, but that increased the aggression.
Thank you for the support. I'm sure its something we all say - that we feel alone. But it isn't until you find a community like this one, with people just like you - that you realise how alone you have been.
--
Double Agent Girl - single mother of two and Masters of Education student
Son - 11, currently dx ODD, GAD and Psychosis NOS. Meds: Seroquel 200mg/day
Daughter - 10, struggling with life in our home
Blog: www.doubleagentgirl.blogspot.com
Double Agent Girl,
Seroquel is probably not the most potent AP available. Risperdal may actually work better. Since he had a bad reaction to the Pristiq I would adamantly refuse to let a pdoc try another AD until his current sx are stable, and maybe not even then. Jeannie has not chimed in here, but I'm sure she will mention getting him checked for all possible physical causes of this brain dysfunction. Has he been tested for allergies and food sensitivities? Nutritional deficiencies? Thyroid or other hormone imbalance?
If you have a good RTC to send him to that may be a good choice at this point. RTC's will likely do a thorough eval and are usually willing to try many different meds. Honestly, I think this pdoc has not done a good job by sticking to one med all these years when his sx are so obviously not controlled. Everyone in your house has suffered, and whatever it takes to help him get better is not a last resort, it is just the next step.
We have a support group for parents of children with psychosis. If you are interested in joining, go to the "Support Groups" tab under "Connect" at the top of the page and ask to join.
Hang in there, you are doing an awesome job of advocating for your child. It is awful that there have been so many hindrances to getting him the treatment he needs. Do keep us informed as to how things are going.
--
Brenda,51, TBMF Parent to Parent Volunteer
Mom to A, 17, BP, Tourette's, OCD, ADHD: Eskalith CR, Lamictal, Cytomel, Allegra
E, 15 1/2, BP,AS: Seroquel, Eskalith CR, inositol, Buspar
B, 14 & H, 11
Married 18 years to DH, 50
FROM TBMF: Do not start, stop, or change medications or other treatments for yourself or your child based on what you read on this Website or elsewhere on the Internet. Information presented here should not replace the considered judgement of a doctor who knows you or your child.