Information for my daughter
My daughter is 13 years old. She has selective mutism and was diagnosed as being under the autism spectrum when she was 5 years old. Many doctors since then disagree with that diagnosis and some do agree. I do not know if she is on the spectrum or not. She does struggle socially and has suffered from selective mutism since she was 3 years old.
I've been a single parent since she was 2 1/2 years old and stayed home with her for the first 2 1/2 years.
From the time she was 2 she had horrible melt downs. She tried to commit suicide when she was 4 years old by running into on going traffic. She would talk about wanting to die as early as 4 years old. She's never been abused. She would hit, kick, and bite me and herself. She'd take objects and hit herself in the head or she'd bang her head on furniture or walls. This is just a brief summary of her life since she was around 2 or 3 years old. Even as an infant I knew something wasn't right, but doctors would dismiss me.
I've taken her to counselors, psychiatrists, psychologists, neuro-psychologists, neurologists etc for many years. She's been hospitilized in psychiatric units and day treatment programs. Some doctors blamed me and some tried meds that didn't work etc.
I took her to a new psychiatrist in November of 2011. He put her on Seroquel XR and Pristique. For the first time in 13 years my daughter is happy, calm, and appears to be a normal child. She used to have these episodes of lauging and bouncing around and then of course the major melt down episodes. She'd also have times where she would appear very withdrawn etc.
Her psychiatrist didn't give me a diagnosis. However, after meeting with my daughter he believes she is on the Autism Spectrum. He thinks its most likely Aspergers, but he didn't test her it's just his personal opinion.
My daughter still shows symptoms of selective mutism. However, this is the longest period of time she's gone without talking of suicide or harming herself and others. She's really the perfect child. I'm still in shock! There were a couple of times she ran out of Seroquel and went a few days without it and she had some major melt downs just like before. I quickly got the med refilled. The medication is expensive and my insurance will not cover it so it's difficult. Her dad wont pay for it or help with it as he has always blamed me for her behaviors.
Also, my daughter never showed the anger or melt downs to other people including her father. It only happened with me, close friends of mine that she knows well, and my parents.
Do you think it sounds like she has bipolar? Will she have to be on medication for the rest of her life to be stable? For the first time I feel like I can form a realtionship with my daughter. I see so many good things about her now that I didn't see before. I feel guilty that many times I didn't want her near me becasue I was so exhausted from her behaviors and moods etc. I never felt close to her. NOw she and I sit and talk and do things together. She helped me paint and she helps me cut coupons etc. It's been so wounderful! I'm worried this wont last. I am frustrated that it has taken this long for her to get help after all the years I tried to help her. She couldn't sleep and would be up all night...it was awful!
I never knew what a great person my daughter was until she started Seroquel. She's kind, intelligent, and eager to help etc. She has formed an interest in history and reads history books all the time and discusses what she learns with me etc. I've received e-mails from her teachers saying how smart she is and knows all the answers in her Alegbra class and her History class etc. Although, my daughter doesn't offer the information when the teachers call on her she always knows the answers. She now talks about wanting to be an attorney someday.
I don't want her to ever go back to the way she was before!
I also feel like I'm not crazy and I'm not to blame like so many people tried to say for so many years! Inside all that turmoil there was a sweet, kind, intelligent child that no one could see.
In my experince, antispycotics are effective with bipolar. My daughter has been on abilify for 3.5 years. Her p-doc is clisng her practice next month and we are in porcess of seeing another p-doc. Cara has many traits on the sutism spectrum but her former p-doc did not think she was autistic. ABA has and continues to be more effective for her than talk therapy. She cycles alot and the SA issues are huge withher. I love seeing my daughter, she is stil there , the one that is creative, loves animals and is so energetic and joyful.Thanks for mentioning pristique, have never heard of that, will look that up.
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Sallie, mom to Cara, age 18 BP1, BPD traits, substance abuser ,does not live at home;
Abilify,30, topamax 100, Lexapro 10
Good for you and your daughter. It sounds like that is working good for her. From my experience most of these kids have some autistic tendencies as in the DSM IV. As a parent I have attended a lot of these conferences on autism and I do always laugh and say that we all have some autistic characteristics but not to the extreme as some of these kiddos. As a parent I want to say to you DO NOT BLAME YOURSELF! I think we as Moms always find fault with ourselves and ask what did we do wrong or what could we have done differently. I knew when my son was first born something wasn't right. I have been blamed by the schools, family, friends and even aquaintances that I have spoiled him and this is why he is the way he is. But guess what? They are wrong. As I read all about these kiddo's it isn't us as parents. Now I am saying that we probably aren't perfect parents as I am a realist, but they are wired differently. I am sooooo happy you have found the right meds for her. Take each day as a gift with her.
Sharon
mom of 15 yo bp son
currently on depakote, adderall, intunive, lexapro
Thanks for the replies. That is interesting that a lot of the kids are on the spectrum. I did not know that. I too was blamed by the schools. Her teachers would tell me that she is a sad child at school, but never a behavior problem. They would recommend parenting classes to me as if I were the problem. My daughter was sad at school because the other girls bullied her, but the teachers would deny this. My daughter doesn't know how to fit in socially with the other kids. She doesn't know what to say or how to act. Social skills do not come natural to her.
I thought she may have bipolar since she was around 5 years old, but no one would diagnose it. She had terrible night terrors for several years that started when she was 4 years old. She would say such crazy things for such a young child. She'd threaten to jump from the second story window in our house and as I said before she tried to run into traffic etc. She would sit under my dining room table and take a basket ball and hit herself in the head over and over and wouldn't stop. I'd have to restrain her. From the time she could write I'd find papers in her room that would say "I want to die' or "I hate myself" etc. This continued all the way up until she was recently medicated on the right stuff.
I have a younger daughter that I had to protect from her all those years. My younger daughter is about 2 years younger...she's 11 now. My older daughter pushed her down the stairs when she was 3 years. It was horrible! I felt so alone as a single parent and everyone blamed me.
I became untrusting of professionals because of the years I spent trying to get help from them to only be blamed. My ex threatened to get custody of her if I medicated her so I took her off her medication when she was in 1st grade. I had the melt away risperdol that I'd put in her mouth when she'd have a melt down.
I just feel like I can breathe and relax for the first time in so many years. In November when I went to this pdoc I was ready to give my daughter to my ex. I couldn't take it anymore. I know this is terrible of me, but I told my daughter that I didn't want her to live with me anymore. I then decided to give it one last chance if she'd take medication. My daughter does not want to live with her dad so she was hysterical. I told her that the only way she could continue to live with me was if she'd take medication and go to a counselor. My daughter never spoke to any of her counselors before so it never did any good. I can't afford ABA therapy and our insurance will not cover it.
This pdoc referred us to a counselor with a lot of experience dealing with kids under the spectrum and selective mutism. This counselor has therapy dogs and makes jewlery with my daughter. It seems to be a good fit so far.
Now that things are so peaceful I look back at all the years of misery and wish I would have ignored my ex and medicated her anyway. I also think of how miserable my daughter must have been too. I know I shouldn't feel guilty but it's hard not to.
Also, my mother was diagnosed with bipolar once. I am sure that was an accurate dx for my mom. She's an active alcoholic and takes a lot of pain pills. She also takes pills to go to sleep and pills to wake up. She also has rages and some mean streaks as well as severe depression episodes. She has a lot of medical issues, but ignores them and just continues to drink.
I guess with my family history I thought my daughter must have it too. Occasionally, my daughter will try to not take her medication. As horrible as it sounds I tell her that if she's not going to take her meds then she's going to her dads house. Most of the time it's not an issue. She just feels so good that she sometimes thinks she doesn't need her meds anymore. She tells me that she's fine now and doesn't think she needs them.
Many of the professionals would tell me that they think my daughter's issues are emotional and not mental illness because she doesn't show her extreme behavior to others. The professionals said if it was mental illness her behavior would show up in all areas of her life with anyone because she wouldn't be able to control it.
Is this true? My daughter doesn't cry or have rages in front of strangers, her father, or at school. I take that back she has had anger outbursts in public and there are complete strangers around. She's lost control in stores many times. There have also been countless times where she stood next to my car and banged her head on my car over and over in public parking lots with people around.
However, if she was in a confined place like a strangers home, car, or a classroom she's really quiet and doesn't talk...the selective mutism. If something upsets her while she's there in those moments then she will hold the anger and come home and unleash on me. I usually never know what upset her or caused the rage. However, I'd get bits and pieces over the next few days to a week that lead me to believe something happened. Also, sometimes she will tell me a story of something that upset her a year ago...but I never knew that happened at the time.
My daughtr is a rule strickler and will not break a standard rule. When's she's in a rage and has lost all control she will break rules. She will not smoke or drink or cheat at school. She wont even say a bad word. I think this is the autsim part of her. She takes things so literally and is not flexible at all. This also hinders her ability to make friends. Most 13 year olds say bad words and bend rules as much as they can. My daughter will not be around another child who says bad words because it upsets her so much to hear them.
She has 1 friend who has Aspergers and Bipoloar. Her friend is about to turn 15. She is just as innocent as my daughter and doesn't say bad words etc. According to her parents her history is similar to my daughters in regards to behaviors etc. However, her friend talks a lot and will talk to anyone where my daughter doesn't.
My daughter was dx'd with PDD NOS by a neuro-psychologist when she was 5. Her psychiatrist thinks it might be Aspergers though. He knows the neuro-psych who tested her and he thinks she is excellent in what she does.
Can Bipolar kids control their behavior enough to only show the rages at home?
Hi Clare,
My daughter had selective mutism and displayed most of the symptoms you've described and didn't have any comorbity like PDD, autism, Asperger's or bipolar. The only difference I've seen in what you've written so far is that my daughter wasn't suicidal although she certainly has had periods of depression.
It really can go either way- either a severe anxiety disorder like SM with other mood and behavior issues stemming from that, or something else like bipolar or autism spectrum with the anxiety that goes along with those.
If you haven't already done so, I'd highly recommend joining SMG (www.selectivemutism.org) to connect with other parents of kids with SM ( full disclosure- I was Executive Director of that organization for a few years but I'm not currently involved the group). It is a great source of information and support though, just as this organization is for bipolar kids. Reading the stories of kids with both disorders may help you sort it all out.
By the way, my daughter's now about to graduate from high school and doing great. No more SM, just social anxiety which she's managing well. Also, as much as possible, try to let go of the past and focus on the now. You've clearly had a lot to handle and have managed to deal with all of that and keep your daughters safe.And now you've been able to get her on a treatment plan that is truly helping, so pat yourself on the back- you're doing a great job!
Chris Stanley- DS 11 ADHD ( ?) ODD, Bipolar NOS
currently taking Lithium, Risperidone, Trileptal (weaning off), Melatonin
Oh and yes, a lot of kids with bipolar can control the behaviors while they are at school or other settingsdons the same is true for SM and many other disorders.
--
Chris Stanley- DS 11,ADHD ( ?) ODD, Bipolar NOS
currently taking Lithium, Risperidone, Trileptal (weaning off), Melatonint
The manufacturers of Seroquel have a card that will pay for the medication (or will pay your deductible) for one year. When my dd was on Seroquel we used that. We got it from her pdoc, but I think you can also get one from the manufacturer itself. Sorry, but I don't remember if the card is for regular Seroquel or the extended release version.
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Joyce (50) in TX; PTSD (but who here doesn't have it?), Hypertension
Rx: Lupin; EMPower+, Amino Acids & Inositol
Married 26 years to my best friend Greg (52); STRONG family history of BP
Mom to:
E (dd-19), Schizoaffective Bipolar Disorder, Borderline Personality Disorder, Anxiety, ADHD, PTSD, PMS, Hypothyroidism, Polycystic Ovarian Syndrome, Tachycardia, Meniere's Disease, Metabolic Syndrome, Asthma, Allergies, Anemia, Dyslexia;
Rx: Synthroid, Seasonique, Coreg CR, Metformin, Nasonex, Claritin, Albuterol (PRN), Aerobid (PRN);
CAM: EMPower Plus, Amino Acids, Inositol, Choline Bitartrate, Quercitin, Mega-Red (Omega-3), Probiotics, Melatonin (PRN);
OFF Trileptal, OFF Topamax, OFF Exelon, OFF Zyprexa Zydis, OFF Fanapt, OFF Cogentin, OFF Ativan, OFF Restoril, OFF Nexium!
Also tried: Seroquel, Depakote, Geodon, Abilify, Restoril, Lamictal, Wellbutrin, Lexapro, Invega, Haldol, Lunesta;
12th grade, homeschooled since Kinder; Declared "disabled" by SSI; Living at home.
A (ds-16), "regular guy"; Boy Scout; 10th grade, homeschooled since Kinder; tired of walking on eggshells...
3 adopted cats, various issues ranging from Bipolar Disorder, Schizophrenia & Narcissism - no meds at this time. Self-medicating with catnip!
There is a lot of overlap between childhood-onset bipolar, schizophrenia and austistic spectrum.
I wanted to comment about when she runs out of medication. Many people on psychiatric medications go through withdrawal symptoms just like a person does with an addictive drug. Suddenly not having it can cause symptoms - sometimes more and worse than what they are taking the medications for. It is very uncomfortable (sometimes that's an understatement) to the person experiencing the withdrawal symptoms.
--Jeanie"Naomi"
It's Not Mental
Older dd: formerly(?) teen-onset bipolar (morphed into ultradian cycling): "Recovered" after over 13 years - stable off psych meds almost two years. Now fine on just diet changes and higher thyroid levels (after healing - addressing gut issues/Candidal overgrowth while using EMPowerPlus and other supplements). She added a little EMpowerPlus back on as a multivitamin simply because she feels better on it - gets sick less often.
Younger dd: formerly(?) Childhood-onset schizoaffective, TS, OCD, anxiety, PTSD, migraines. After over 15 years, is now "recovered" for almost 5 years after treating endocrine issues, food sensitivities, gut issues, sleep issues, nutritional/mitochondrial needs.
Her pdoc gave me a card for to get a discount on the Seroquel, but the pharmacy wouldn't let me use it because my daughter is not 18 and the drug is not approved for kids under 18.
I would recommend contacting AstraZeneca directly. I don't see what difference it makes to the pharmacy. Or you could try a different pharmacy. Pharmacies all over the country sell Seroquel to parents for their minor children.
And yes, kids with BP definitely can hold it together for certain periods of time, but it is extremely draining for them.
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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.