How did you deal with the alienation that comes with having a BP child?

I surround myself with other people who have children with mental health symptoms (because they 'get' it).  I volunteer at NAMI (because it helps me to help others who are struggling).  I read A LOT about mental health concerns and strategies (because knowledge is power).  And I knit to keep my hands busy and my mind free (which relaxes and calms me).  Also I spend a good amount of time here to connect with other people who 'get it' and to vent when it gets real hard.

I think I would call the hospital back and see if they can expedite an appointment for your dd.  It is in their best interest since she will be back if she remains untreated.  The hospital my dd has been in (3 times this year) also has an outpatient child psych clinic that they referred us to.  They have been very responsive and helpful.  You can also call your insurance and see if they can help you find someone.  This is a bit of an emergency so I would play up the gravity of the situation.  Left untreated your dd will become a drain on the medical community.

And are there any tips/strategies that you have for coping with this until she is put on meds?

This is a tricky one since you are already living minute to minute.  Walk away when you need to.  Keep any other children away for a while if you can - at friends or family member's.  Don't be afraid to call for help if you feel your dd or your family is in danger.  And remember your dd is not well.  Lower your expectations for her.  Do what you can to reduce known triggers.  The same way  you wouldn't expect a child with a high fever to participate in regular activities you cannot expect you symptomatic dd to operate at a 'normal' level.

Most of all remember that your situation is difficult and painful.  The 'others' do not live in your shoes so they have no idea what your reality is.  Keep moving forward doing what you KNOW you need to.  They will all talk about you anyway and second guess your decisions.  As long as you are going what you need to at any given moment, you can rest well knowing that you did the best you could with a very bad situation.

Good luck and stay strong.  And remember to breathe.

--

Karenj

Self: as sane as I can be everyday
A - DD (17yo) well adjusted, high functioning, motivated, successful, waiting patiently to go away to college
M - DD (13yo) Bipolar I (dx 4/2011) ADHD (dx 2nd grade), dumb high IQ, mainstream education with IEP/BIP, Seroquel XR 200mg - morning: Seroquel 50mg evening; Lamictal 150mg - morning
BF - Live in boyfriend of 5 years, supportive and learning more every day
EX - Ex-husband, divorced since 2002, family history of bipolar, unpredictable and sometimes explosive

 I understand your pain and we have been there.  If I were in your shoes, immediately today I would eliminate all dairy, gluten, food coloring and food preservatives from the diet.  I might even cut out soy and corn.  Clean out the house of anything premade in a box,  stay out of the resturants and pack the school lunches.  This probably is not the whole answer, but I bet it will help a bit for now.   ---If you see drug withdrawal symptoms, that is because undigested wheat gluten and dairy products can act as an opiod on the brain--- keep it up and it will pass in a few days.

I would immediately get into a naturopath that knows something about bipolar and start supplementing with vitamins.  Go yourself if it is not possible to take your daughter.  Then, I would really read the archives of the CAM forum and buy some books suggested on the forum.  Then, I would go about finding a long term doctor that can work with integrative techniques. 

Your goal is to identify and treat the underlaying causes of the disease that you can effect.  Mostly nutritional and hormonal.  Don't wory, many docs and psychiatrists will scoff at you, but you will be smiling again in no time.   And please don't trust anybody who writes a prescription for anything without adressing the nutrition in a serious way.  Not just a screening level common tests, you really want to work hard with the diet and metabolic testing.

IF you start the meds today, it is a wicked cycle.  She will probably be an instantly wonderful girl with the new pill.  But, like many of us, it could likely be a temporary fix.  Next is it's not working, and up the dose.  Another month and up the dose again.  This time it only works for a week or two and up the dose again.  Now we can't up the dose again, and we try something new. The side effects start kicking in and you ignore it at first.   Maybe there is an immediate bad reaction and you are back in the ER room.  Maybe you add something else and it works for a few months.  Then you start upping the dose again.  Maybe one of the meds is causing a negative reaction and you don't know it, so you add yet another med.  The side effects  can catch up with you and have gained an inordinate amount of weight or have permnant movement disorders, or heart troubles.  In addition, they are as addictive as cigarettes and even though you may eventually treat the underlaying causes, then you still have the horrors of drug withdrawal.

This is just my 2 cents.  I wish somebody had told us this when we were starting out.  Now, we are still working at the nutrition, have reduced the meds to a fraction of where she was at the peak, and is nearly perfect for most of the time.  We still are having a few serious breakthroughs, but nothing at all like with the kitchen sink full of medications.  The side effects are a minor rage at bed-time.  Certainly not the all hands got to come home from work right now.

You may need to keep 2 adults with her at all times until this gets straightened out.  Do lots of coaching and let her make her own decisions.  No demands nor telling her what to do.  Let the consequences fall where they may.  She is probably not in a good enough space for punishment of any kind.  Also, if she breaks something, there is not much you can do to hold her responsible for it.  And, please lock up all the kitchen knives, sharp pointed sizzors and anything else dangerous.  To this day, my wife and I use a pocket knife in the kitchen.  Lock up any meds laying around the house.   Just make it a safe place for her.  Also other children may need to go to an understanding neighbor or grandma for a while.

And, remember the bar is dangerous to herself or others.  If she is at that bar, call the either the local crisis line or 911.  You want an ambulance, not a police officer.

Most of all, hold your head high and take care of yourself so that you can take care of your daughter.  She is counting on you.  You will find a way to pull through this for both you and her.  Best of luck however you chose to proceed. 

Brian

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Daughter 7 BP/violent rages. Unsuccessful with multiple meds. Now reasonably stable (with a few regressions) on Risperidone + Intuniv + Restrictive diet + EMPowerPlus + AminoPowerplus + NAC + Q10 + low dose lithium + melatonin.

Thank you so much for your responses, I'm glad there are people out there that understand what I'm going through.

As far as calling our insurance company, psychiatrists, hospital visits, etc are all covered by our government.. So free-ish. What we get for free here we make up for in taxes lol. So I'm afraid that calling and demanding help from our provincial government is going to be like arguing with a brick wall so to speak.

We have been restricting her diet since she was 6 (she's 11 now). All dairy, gluten, additives, preservitives, etc are gone from our house. The younger 2 have actually never had any of the above (with the exception of cheese and homo milk as toddlers). This helped only temporarily and we have since found that even with the elimination she is becoming worse as she gets older.

We have taken her to a naturopath and had her on thyroid drops as well as "sleeping" drops (she only sleeps 3-5 hrs). This hasn't helped either. 

All medications, vitamins, supplements, knives and other potentially harmful objects have been kept under lock and key since her first suicide attempt at 7. We have since had to remove her bedroom door and bathroom locks because she is becoming increasingly suicidal once the rage dies down.

As with all children's mental health services in this province, they have completely brushed her off by calling her "princess who isn't getting her way" for the past 8 years. It wasn't until the recent ER visit and calling 911 that someone actually took us seriously and referred her to the outpatient clinic. But again, our "fantastic" healthcare system demands that we wait a minimum of 6 months before being called for an assessment.

I'm starting to think that we should pack up and hop the border, pay out of pocket and get the help we need when we need it!

Since the government/health care community is being difficult, maybe you can get her into a university research study.  I am fortunate to live in a big city with lots of study options and I look through them frequently.  I know I have seen some in Canada as well.  (Yes, I know its a big country, but often they have satellite sites if they want a large enough cross section of the population).  It will take a bit of research on your end but often there is medical and therapeutic treatment available.  Sometimes there are medication trials, sometimes supplement trials, sometimes behavior monitoring and training.  The other benefit (besides to the community at large) is that you begin to have documentation on your dd's symptoms and concerns so the medical community is less likely to pat you on the head and tell you to stop overreacting and under disciplining.

If you let me know where you are in Canada I may have time to do a quick search for research studies later today.

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Karenj

Self: as sane as I can be everyday
A - DD (17yo) well adjusted, high functioning, motivated, successful, waiting patiently to go away to college
M - DD (13yo) Bipolar I (dx 4/2011) ADHD (dx 2nd grade), dumb high IQ, mainstream education with IEP/BIP, Seroquel XR 200mg - morning: Seroquel 50mg evening; Lamictal 150mg - morning
BF - Live in boyfriend of 5 years, supportive and learning more every day
EX - Ex-husband, divorced since 2002, family history of bipolar, unpredictable and sometimes explosive

Here is one I found without looking too hard:

http://www.camh.net/Research/Studies_and_recruitment/studiesrecruitment....

Are you the caregiver of a child aged 9 to 12 who has difficulties with aggressive or disruptive behaviour? If so, you may be eligible to participate in a study of different approaches to reduce disruptive behaviours in children. For more information, read the study brochure (PDF) or call 416-535-8501 ext. 3642.

I think its in Toronto. 

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Karenj

Self: as sane as I can be everyday
A - DD (17yo) well adjusted, high functioning, motivated, successful, waiting patiently to go away to college
M - DD (13yo) Bipolar I (dx 4/2011) ADHD (dx 2nd grade), dumb high IQ, mainstream education with IEP/BIP, Seroquel XR 200mg - morning: Seroquel 50mg evening; Lamictal 150mg - morning
BF - Live in boyfriend of 5 years, supportive and learning more every day
EX - Ex-husband, divorced since 2002, family history of bipolar, unpredictable and sometimes explosive

Thanks so much, Karen. I'm in southwestern Ontario so would be looking for something in the Kitchener-Waterloo-London areas.

Try this.  https://www.lawsonresearch.com/research_themes/Mental%20Health/HTML/rese... They seem to be focused on early intervention as a way to improve outcomes.  If you call and they cannot help you they may know someone else in the area who can.  Researchers are good at sharing like that :)

--

Karenj

Self: as sane as I can be everyday
A - DD (17yo) well adjusted, high functioning, motivated, successful, waiting patiently to go away to college
M - DD (13yo) Bipolar I (dx 4/2011) ADHD (dx 2nd grade), dumb high IQ, mainstream education with IEP/BIP, Seroquel XR 200mg - morning: Seroquel 50mg evening; Lamictal 150mg - morning
BF - Live in boyfriend of 5 years, supportive and learning more every day
EX - Ex-husband, divorced since 2002, family history of bipolar, unpredictable and sometimes explosive

Mashed,

Would your naturopath be willing to reach out to help?  Dr. Popper at Harvard advertises himself as available for Dr. to Dr. consultations.  He has quite a reputation although we have not sought out his help (yet). 

Here is a web site with his bio: http://www.mmhforum.org/speaker_charles.html

and here is his contact info:  https://www.directory.harvard.edu/phonebook/getDetails.do;jsessionid=mh9GT8qCs7681LzVhX26kLGy6Q1BGhJsyhJTX6M9BQh227xzTl7v!1838573703?key=POPPER43beb4cfc8009f4fb61622565762aa60

Brian

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Daughter 7 BP/violent rages. Unsuccessful with multiple meds. Now reasonably stable (with a few regressions) on Risperidone + Intuniv + Restrictive diet + EMPowerPlus + AminoPowerplus + NAC + Q10 + low dose lithium + melatonin.

Hi there, I have a 9 year old who we are ? BP or Severe mood disorder,just starting the whole process too, we are in Sarnia, where in southwestern Ontario are you?

We're in London. Have you done a referral for CPRI? If its something your dr or CSCN is recommending, I highly suggest you do it now. They have the mood disorder clinic and it takes next to forever to get into. We have been referred to a private child psychiatrist in the interim because it will be at least another 6 months before she's seen by the clinic.

You can self-refer to CPRI if you have documentation from other community services (here it's ony vanier, ER, CAS, children's hospital). It might seem a little far to drive, but I've been told the clinic is worth it.

--

-- D no history of mental health issues in immediate or extended family. Living minute by minute.

DH - a very patient stepdad. Just trying to deal with whats been handed to him
DD 11- diagnosed BP with comorbid Conduct Disorder. Waiting for meds. 6 month waiting lists are the norm here. History of mental illness on bio dads side.
DS 3 - hides in closets during rages, showing signs of anxiety.
DS 6 months - just your average run-of-the-mill baby.. Eat, sleep, poop, cry, repeat.

Hi Mashed Bananas

We have not been referred to CPRI yet, as we have chosen to go acrosss the border with our daughter, we see the counsellor here but the psychiatrist is in Michigan, we just pay to see her. It is convenient really and avoided the whole referral process. Our daughter is really just starting to get worse so we have been fortunate to not have had any Er trips etc... She has actually not seen an MD other than the psychiatrist for probably 5 years for anything. I am going to take her to one of the local peds and hope he'll do shared care with the US psychiatrist so I atleast have someone who knows her here.

The Canadian system is amazing as everyone is equal and services are acessible to everyone, unfortunately when it comes to mental health the resources are tight, and there is a wait... Because we live in a smaller community and I am a nurse, I work in the system and didn't think the choices here were a good fit for us, which is why I went across. CPRI loks great but when I contacted them they said I need to exhaust my community resources here first and get referred from a Canadian MD.

Ideally the ped will agree to share care and rewrite the scripts for Canada under her advice and direction... if not I will just order them on line. I find it is stressful enough without navigating the system.

I just read a book that I found very helpful called What works with Bipolar kids by Mani Pavuluri. Hope you are having a better week...

Do your kids go to school?  We had to pull out of public school, but it is a battle every day to do even a little school work at home. 

I homeschooled my ds17 for 4 years due to his inability to function in school.  Those were horrifically difficult years, and his ability to concentrate was limited to about 15 minutes at a time for the most part.  We worked in short increments, and I became very flexible with assignments and expectations.  On good days we did more, on bad days I let him do music or shoot baskets or walk the dog, whatever helped him to calm down.  Eventually you will get his meds better stabilized, and then he will be able to do more learning.

--

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.

Hi Mashedbannas! Your nickname and writing style denotes a sense of humor.. sometimes that is all we have. The alienation from "friends" and family is difficult and not always an easy fix. So many so called friends literally STILL walk the other way when they see my daughter and I. So who needs them? The people that understand and care will rise to the top.. the rest will show their true colors.  Thanks to my daughter's past behavior we alienated a whole school and almost a whole small town. I feel so alone. So I reach out to others with stories like mine. I join these support groups that are now available to me but not when I was in the worst of my nightname and had to wing it on my own. I  research a lot so i can one day help others in need. I do lots of yoga and eat lots of chocolate..diet be damned! And I thank my lucky stars that both my kids have stablized after many many years. But I AM still lonely...

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Lmmom 53 yrs BPII PTSD Lithium 300/mg Xanax as needed.
Hubby 54 yrs my rock of 30 years
22 yr old son/undiagnosed
18 yr old daughter/BPII 300 mg Lithium, Yaz, Zoloft