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Author Topic: New to this site - In desperate need of advice  (Read 463 times)
FlashPlanet

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« on: July 19, 2019, 10:04:27 PM »

Apologies for the long note but feel it is the best way to set the stage

Our daughter is now 21 and we have been struggling since she was 6.  A new counselor suggested we read Walking On Eggshells.  Every page seems a mirror reflection of our daughter.  We have tried counselors and psychiatrists and drug after drug to no avail.  As she turned 21 last December, she started getting progressively worse.  We hoped the summer break from school and no stress would help - again, to no avail.  Now, she is refusing to see any doctor and wants to take herself of meds, convinced nothing will help.  She even threatened to leave.  Needless to say, we are desperate for help.  At this point, we believe in patient care may be the next option - but how is that possible since she is an adult?

Now the back story.  At 3rd grade, she began with emotional outbursts and difficulty controlling her behavior.  It often seemed very irrational and without reason (I am an engineer with a tilt towards the OCD if you haven't figured it out).  She has always been very sensitive to smells and textures as well.  We went through several counselors as we mentioned.  10 years ago, she was diagnosed with Benign Occiptal Epilepsy.  4 years ago she was retested and no evidence was found.  In the meantime, she has tried Depakote, Seroquel, Prozac, and Celexa with poor results, rapid weight gain (not good for teenage girl), and terrible withdrawal side effects.  She is currently on Lamictal, Ritalin, and Klonopin (taking as needed).  When her anxiety overwhelms her, she ends up curled up, shaking uncontrollably and often pinching or hitting herself - even now at 21.  She has a weighted blanket, lavender oils, and music to help but it will last for 30-40 minutes and she is exhausted.  The Klonopin helps in these cases and she will take it if she knows her day will be essentially stressful.  It is clear to us, this drug recipe no longer works and with her body rapidly changing from a teen to a young adult the evidence seems to prove it.

At school, she has always been a straight A student.  This is evidence of her obsession with not failing.  She pushes herself to exhaustion to get A's - something we have never pushed and even tried to dissuade her from.  She has a small circle of friends but few she confides in.  She avoids social situations, large crowds, and absolutely avoids engaging anyone in a position of authority.  If a friend is not available to eat, she just won't eat.  She will walk the long way to classes just to avoid crowds.  Her fear of failure is only surpassed by her sense that she is already a failure and no one can fix her.  She is very intuitive but often misinterprets others - especially us.  She will tell people what she thinks they want to hear to avoid being judged in any way.  I could go on, but essentially 90% of the book describes her.

We moved to SE Michigan a couple years ago when she headed off to college.  We tried a psychatrist a year ago near her college and it was a disaster.  We finally found a psychiatrist up here and met last week.  He immediately prescribed Paxil - which may be a great med.  However,  it is another SSRI and will definitely cause weight gain.  She just won't take it.  Between her experiences and Gene Testing results, SSRI's are not a good fit.  We have a follow up Monday to talk alternatives - but she is refusing to see any more doctors.  she basically wants to give up becuase she believes nothing and no one can help her.

So here we are, we know she has had thoughts of suicide but not sure how often or serious.  She says she may leave - but there is no where to go.  I find myself hiding the keys to her car at night and considering a tracking device on her car.  Taking herself off meds without a doctor supervision seems destined for more suffering.  We certainly don't feel comfortable sending her back to school in a month but here she has no friends since she did not grow up here.  Bottom line - we need help and someone to share their light at the end of the tunnel.  Right now, all we see is black.  This takes a tremendous toll on us, especially my wife.
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Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders
FaithHopeLove
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« Reply #1 on: July 20, 2019, 12:14:01 AM »

Hello
I am glad to meet you and so sorry for what brings you here. You really have been through the ringer with your dear daughter. It can be hard to find hope when you are in the middle of this thing. Eggshells as we call it really is a great book. If you were asked to read it that means her counselor suspects your daughter has BPD. I take it you and your wife suspect the same. In that case there is good news. BPD while serious is a very treatable disorder typically not so much by drugs (although they may be needed for other reasons) but by Dialectical Behavior Therapy and other "talk' therapies. There HAVE been many success stories with this illness so don't lose hope. You took a big step in coming here for help and advice. This is a good place for you to be. We get it. We are all going through this together and, yes, there is light at the end of the proverbial tunnel so please take a deep breath and know you will get through this. The first step may seem counterintuitive but it is self care. You and your wife need to be strong if you are going to help your daughter. Things like posting here (Don't worry how long your posts are. Get it all out. That's what support group is for.) maybe seeing your own therapist to help you cope, time out for hobbies, nurturing your marriage, really anything that makes you strong will help your family. Do you think you can put a self care plan in place? We are here for you any time. We are glad you came.
Hugs
Faith
« Last Edit: July 22, 2019, 02:50:53 PM by Harri » Logged
MomSA
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Relationship status: Married 28yrs
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« Reply #2 on: July 20, 2019, 10:27:35 AM »

Welcome, I am sorry you are here as we all know the pain and worry you are carrying with a possible BPD child but I am glad you did find the boards.

There are some common traits I see in your writing with one of my children who have Autistic Spectrum Disorder with what you are describing. I don't deny there are also the BPD traits, you live with her. I do know that ASD and BPD overlap in someways.

My BPD has been in DBT skills training for 10 weeks and it has helped her hugely. Your struggle is that your daughter is tired of doctors and pills that don't help. Is she still open to learning? If so she can become her own greatest ally as she learns about her disorder once she has a formal diagnoses. The more she understands why life is so hard for her, the more skills she can learn and the better she will do. As a dedicated straight A student she would probably throw herself into the study of BPD as she would other studies. This is what my straight A ASD student did.

The other thing you can do right now is validate her feelings of being so so so tired of doctors and pills and find ways to help her not give up. Would she watch some videos of people who have made their way back from the edge? If so, I could recommend a few.
« Last Edit: July 22, 2019, 02:51:14 PM by Harri » Logged
livednlearned
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« Reply #3 on: July 20, 2019, 05:09:19 PM »

Like MomSA, I wondered if anyone has evaluated your daughter for ASD?

My H and I both have family trees with autism and BPD and some of what you describe sounds like the same combination.

Have you heard about somatic experiencing: https://traumahealing.org/

My ASD son felt traumatized not only by sensory triggers, but also by the sensation of his own emotions. He's healing from medical issues but when he's mobile I'm hoping he will participate in either somatic experiencing or neurofeedback to help him move out of defense mode.

I think he has a sensitive genotype that make sensations feel overwhelming. I can see how BPD symptoms would develop if everyday experiences were too loud, too bright, too fast, too intense.

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FlashPlanet

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« Reply #4 on: July 20, 2019, 06:34:25 PM »

Thank you all for your responses, your kind words, suggestions.   We have considered the autistic spectrum when she was young but nothing really came of it.  We can certainly talk with the psychiatrist.  We have an apt on Monday to talk alternatives to SSRIs.  I totally agree that therapy is the long term answer, especially with her desire quit them all.  Finding the right therapist and/or group is the magic we just have not found.  Hopefully she will go with us on Monday and we can start something she can buy in to.  On another note, my wife is seeing a counselor beginning this week to help her deal with the stress. 
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FlashPlanet

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« Reply #5 on: July 22, 2019, 09:04:56 PM »

Had a good meeting with the psychiatrist today.  Daughter did not go but we talked beforehand about what she wanted.  Dr listened well and I like him despite the 3 hr wait.  We have a plan she is buying into - at least today.  Fingers crossed...
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PeaceMom
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« Reply #6 on: July 22, 2019, 11:06:07 PM »

That’s encouraging Flash!  Do you feel like sharing the plan here? Your description of your DD reminded me of several things about my son who has Bipolar disorder.

He hated loud noises like fireworks. Clothes were and still are bothersome -itchy tags, socks, etc. He has always been a fairly picky eater and is very sensitive to smells.

Years ago, a doctor suggested he do this odd therapy with body brushing, swinging, jumping... I wonder if that is still advised? (This was many yrs ago and I can’t recall much). He only did that weekly therapy for about 6 months as he was very concerned about being labeled as different and it was expensive. Seems like the idea was regulating his proprioceptive system (probably misspelled that).  I’m curious about how you help your DD regulate when her sensory system is dysregulated.

Peacemom
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MomSA
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« Reply #7 on: July 23, 2019, 09:22:54 AM »

I’m curious about how you help your DD regulate when her sensory system is dysregulated.

Peacemom

I am not sure how old your son is now PeaceMom, but my 17yr old son and my 24yr old daughter who have ASD were also "tactile defensive" when little and as they grew and were able to voice their discomfort we could do somethings to help, others not.

Avoid those things that are hard. My son still doesn't like certain food textures, sleeps under weighted blankets, wears socks inside out, doesn't like seams, cant handle certain noises and battles with crowds. My daughter has her own set of things.

Desensitise to things you can get away from. Because they are willing (read: not BPD) they worked with me with certain things and alone on others to get used to things they will not be able to avoid. We are currently working on new environments and crowds with my son as he heads to college next year, for example.
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PeaceMom
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« Reply #8 on: July 23, 2019, 11:22:30 AM »

I assume my son 24 learned to self cope with these things. Thankfully it’s not at the top of the list anymore. I can see why tactile issues and BPD would be complicated.
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FlashPlanet

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« Reply #9 on: July 24, 2019, 07:15:07 PM »

Our DD primary issue is anxiety.  SSRI do not work well for her - weight gain and bad withdrawals. She refuses to ever try again. The high anxiety drives the bpd behavior so not sure which is the root cause.  All I know is she was ready to walk out 5 days ago and now she is buying into the med plan. I’m talking up the new Psych Doc cause he is willing to listen to her and not just push another drug she doesn’t want.  Whether this plan works is yet to be seen.  Time will tell.  But I’ll take a victory no matter how small or short lived.  If she feels she has some control over the solution, I feel we have the best shot to moving forward.
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livednlearned
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« Reply #10 on: August 01, 2019, 05:20:20 PM »

How does her anxiety manifest? What happens when she's anxious?
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Breathe.
Our objective is to better understand the struggles our child faces and to learn the skills to improve our relationship and provide a supportive environment and also improve on our own emotional responses, attitudes and effectiveness as a family leaders
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