Hi Everyone - Mom of newly dx'd 14yo here

[jessmomof8]

I hope it's ok, but I'm going to copy and paste my introduction that I just posted on the New Member board.  :-)  I'm sure you can all relate to the exhaustion.

I have 5 kids, 20yo dd, 17yo dd, 14yo dd, 7yo dd, and 4yo ds.  My 14yo dd was just diagnosed with Borderline Personality Disorder a few weeks ago.  She was always a quiet passive kid, she was very sweet and playful when she was little.  She has been withdrawing over the last 2 years.  In early May, she cut her arms up in an attempt to kill herself and took a large handful of ibuprofen.  At the ER, she told the doc that she'd been cutting herself for at least a year - I had no idea.  They admitted her to a psych unit and started her on antidepressant meds and sleeping meds.  She and my 17yo both have POTS (Postural Orthostatic Tachycardia Syndrome) and joint hypermobility (I suspect Elher Danlos Syndrome, but having a hard time getting a confirmation of that).  We suspect the sleeping problems are due to her POTS, but it's impossible to tell.  her psychiatrist changed her diagnosis from depression to BPD after her second trip to the psych unit for suicidal ideation at the beginning of July.  Already into the second section of the Stop Walking on Eggshells book and just starting on the workbook.

I've been divorced from her father since she was a baby.  He does not have visitation right now, which is a good thing.  He is unlikely to make his house safe for her.  My biggest stress right now is that I have no other adult (other than my husband) that I could trust her with and that she is getting increasingly mean with the 2 younger kids.

Thanks for listening, so glad to have found this website!

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

[lever.]

Hello jessmomof8 

I am glad that you have found this forum-you will find a lot of support here. A good place to start is by reading the "lessons" at the top of the board.

Your daughter certainly has a lot to contend with with the BPD and also her physical problems.

With a large family to care for it is also hard work to look out for the effects on the younger children-this has been one of my biggest challenges.

In the tools section to the right there is a section on communicating boundaries and limits which may help with protecting the younger ones.

Another book that is very helpful and is aimed particularly at parents is "Overcoming Borderline Personality Disorder" by Valerie Porr.

Take your time to look through the information-I hope you find it helpful-and people are always available here if you would like ask    for support over any particular issue.

[tristesse]

Welcome jessmomof8,

[pessim-optimist]

Hello jessmomof8! 

Welcome to the Parenting board!

Wow, you certainly have your hands full with all the kiddos and even some medical conditions... .Supporting your 14yo and keeping the younger ones safe must be a big job! It's good your husband can help you with them... .

Is your daughter accepting her diagnosis? Is she currently in therapy?

Keep posting, we are here to support you on this journey, let us know how we can help, ok?

Also, with all the reading you are doing, when you feel up to it, feel free to check out the right hand panel ----> it has lots of great resources specifically for Parents.

Also the Workshops and Articles sections have lots of good info as well.

[jellibeans]

dear jessmom

I just found your post. I was out of town taking my older daughter to school. She has POTS and EDS. I am told that there is a new genetic testing for EDS. I have asked on this site before if any one saw a connection between these disorders. You are the first person I have found. My older daughter does not have any mental illness. My younger dd17 has BPD, ODD, Anxiety and mood disorders, depression. I wondered if there was a connection between my two daughters. I just find it so interesting that your two daughter have both POTS and BPD.

HOw are they both doing with the POTS? ARe they healthy? HOw long have they been ill and what kind of doctor dx them? My older daughter was sick for a long time before we found a docter that could tell us what was wrong. We had many doctor tell us it was all in her head. Thankfully she got a dx and has been able to go off to college and swims on the swim team there. She still has bad days but is doing pretty good.

My dd17 has been struggling for some time with BPD. I do think she is getting better. A year and a half ago she was finally admitted to a RTC because we could not keep her safe anymore. She had overdosed too many times.(also with ibuprofen).

I would also like to suggest you get the book by Valerie Porr... Overcoming BPD. It is very good. I just can't imagine both your kids have both of these two disorders. Are they able to go to school?

Both my girls struggle with sleep issues. I am not sure if it is the ADHD or the POTS that is causing that. My daughters doctor gave her a beta blocker for night time to help with sleep. My younger dd17 I give her an over the counter sleep aid when she asks. She has never slept good.

Welcome to the group. I am eager for your reply.

[theplotthickens]

Welcome!  My dd is 17 and has ADHD, bipolar, and  BPD.  Our University hospital usually does not diagnose BPD until 18, since their personality is still "emerging,"  but she is such a textbook case that she has been diagnosed since 15.   We have agreed with the doctors not to share that diagnosis with her, as they feel it will be one more excuse for misbehavior and illness.  I am curious as to how other professionals approach discussing diagnosis with teens, as the diagnosis is a moving target at this age. 

It sounds like you have been through a lot with physical and mental illnesses!  You will find a lot of support on this board.  It has been such a blessing to me to meet others who "get it." 

Had your daughter started DBT or has that been recommended?  I hope you are finding support for yourself and your daughter. 

Again, welcome, and I look forward to hearing from you!

[jessmomof8]

lever - Thanks!  I'm still in the very overwhelmed learning stage, but trying to catch on. I'm currently reading "Stop Walking on Eggshells" and working through the workbook.

pessim-optimist - She is currently in regular CBT therapy.  I've asked her therapist about DBT but he kind of brushed me off.  I looked it up online there are no DBT providers within 2 hours of our home.   

jellibeans - From the POTS groups that I've been in, depression is common in people with POTS or EDS but I've never seen anyone mention personality disorders.  :-/  I think my kids just got screwed genetically.  I am working on my first attempt at filing for disability for both of them.  My 17yo's POTS definitely affects her life negatively on a daily basis.  I am concerned that in a few years she may not be able to work enough hours in a week to maintain independence.  My 14yo was dx'd first.  She'd already been seeing a cardiologist due to a PFO (patent foramen ovale - supposed to close at birth, her's didn't), he must have noticed something off with her BPs because he asked about her eating a lot of salt and went from there.  I had no idea she was having trouble with that.  Then I started checking everyone else's BP and saw my 17yo's BPs doing weird things and took her in.  We have always home schooled, so school has never been an issue for us.  It's the POTS that is screwing with your kids sleep.  Mine don't sleep for ___ unless we give them something. 

theplotthickens - when they dx'd my daughter, we were at her psychiatrist's office.  She just started asking me questions, went through the list basically, then at the end said that she was dx'ing her with BPD.  My daughter was sitting right there, but the psychiatrist was talking directly to me and sort of ignoring her at that point.  Then she didn't even ask her how she felt about anything that we'd just said.  It was very strange, but then her psychiatrist is a little odd.

Have any of you done the Family Connections class through borderlinepersonalitydisorder.com?  My husband and I are scheduled to start a telecommunications session next Tuesday.

I really want to start looking at the residential treatment programs, but I have no idea if insurance pays, how much and all that.  Sort of afraid to, that whole "if you have to ask, you probably can't afford it" kind of thing.  :-(

[theplotthickens]

I just wanted to let you know that we are also crazy homeschoolers.   Honestly, I don't have the energy to deal with the school system; and my dd has an evening job.  I have gotten a lot of judgement and discrimination from mental health professionals for homeschooling... .not okay.  I hope your experiences with professionals reacting to homeschooling with mental illness are more positive than mine.

[jessmomof8]

I just wanted to let you know that we are also crazy homeschoolers.   Honestly, I don't have the energy to deal with the school system; and my dd has an evening job.  I have gotten a lot of judgement and discrimination from mental health professionals for homeschooling... .not okay.  I hope your experiences with professionals reacting to homeschooling with mental illness are more positive than mine.

Yay for crazy home schoolers!     My therapist home schooled her own kids so she is totally behind me and thinks it a good idea.  My 14yo's therapist... .     Oh brother.  Her psychiatrist hasn't said anything to me about it either way, she only suggested that I keep her going with school work over the summer to keep her busy.  No one else has said anything either.

[pessim-optimist]

Have any of you done the Family Connections class through borderlinepersonalitydisorder.com?  My husband and I are scheduled to start a telecommunications session next Tuesday.

I was going to say that I haven't and that they come highly recommended.

But looking at the date - you can probably tell us yourself by now: How is it, how do you like it?

I really want to start looking at the residential treatment programs, but I have no idea if insurance pays, how much and all that.  Sort of afraid to, that whole "if you have to ask, you probably can't afford it" kind of thing.  :-(

That is an area that deserves tons diligent research, and this question/topic comes up a lot. From what I've heard and read, it can be difficult to get insurance pay for the right program. And in your case since you homeschool (BTW - kudos to you for taking on such a big job) - it may not be possible to get the school system to pay for the educational part of RTC.

We have a sub-board dealing with these topics - you might find it helpful to do some researching there:

Archive: Hospitalization, RTCs, and IOPs and especially the topic at the very top Falcon Ridge Ranch might give you lots of helpful information.

In any case, here is a quote from one of the threads discussing this topic:

https://bpdfamily.com/message_board/index.php?topic=210635.msg12322087#msg12322087

Criteria for placement, quite frankly, depends on who is paying for it.

Self Pay. You choose when, where and how long.

Insurance. They give you a few choices of approved facilities, it must be "medically necessary", length of stay

              usually predetermined by your policy.  If not predetermined they determine based on the clinical

              reports from the rtc.

IEP.  School pays and uses a specialist to work with you to provide choices of facilities.

Combination... .IEP pays for educational aspect of the program. Insurance pays for treatment portion of the

            program. You pay for the rest. (or various combinations).

States sometimes have programs that will pay for residential care.  You just have to find the right loop to jump through.  For example, and this was a few years back, a parent could have a child declared medically dependant  due to a chronic illness (mental or physical) and the child would qualify for medicaid.  Medicaid will pay for rtc care in some instances.  There were very specific guidelines and criteria that must be met for this program to cover rtc... .like Child must not have been in any other state medical facility. And such.

Most of the kids who were in the RTC with my daughter were there on IEP's.  Full pay... .$250.00 per day.  I understand that it has become more difficult to get RTC through an IEP since the economy took a dive. President Bush signed into law the "No Child Left Behind Act" which legally forces the school district to provide alternate education for special needs children.  If the school district cannot provide the appropriate environment for educating a special needs child they are required to fund outside their district and sometimes their state.  Many parents use an Educational Attorney to enforce their rights to RTC through an IEP.  Many parents seek the advice of an Educational Consultant to help them get the school district to place their child in a certain facility vs a facility the school deems appropriate.

There are many avenues to getting RTC placement and funding.  None of them easy.

Hope this helps a bit to start... .

[jessmomof8]

Have any of you done the Family Connections class through borderlinepersonalitydisorder.com?  My husband and I are scheduled to start a telecommunications session next Tuesday.

I was going to say that I haven't and that they come highly recommended.

But looking at the date - you can probably tell us yourself by now: How is it, how do you like it?

We've only had one class so far, second one is tomorrow.  The people running the class seem very nice and knowledgeable.  I'll update in a few weeks.

That is an area that deserves tons diligent research, and this question/topic comes up a lot. From what I've heard and read, it can be difficult to get insurance pay for the right program. And in your case since you homeschool (BTW - kudos to you for taking on such a big job) - it may not be possible to get the school system to pay for the educational part of RTC.

Oh brother.  Well, I'm expecting some call backs this week.  We'll see what they say.

We have a sub-board dealing with these topics - you might find it helpful to do some researching there:

Archive: Hospitalization, RTCs, and IOPs and especially the topic at the very top Falcon Ridge Ranch might give you lots of helpful information.

I saw that but wasn't sure if anyone was actively posting there, since it's labeled Archive.

That's interesting about the Medicaid, from what I understand Ohio's medicaid won't pay for much in the way of RTCs.  :-/ My daughter is lucky enough to have 2 different insurances beside Medicaid - one through her dad's work and one through my husband's.  So, I'm hoping that they will work together to do something decent.  Something has to go right.

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

[theplotthickens]

Our insurance would pay for 2 sessions of individual DBT therapy a week.  I am cautious in recommending RTC's and day treatments, and all my dd did in those settings was pick up new ways to cause trouble and new negative behaviors.  

I would exhaust all outpatient options first, and be VERY hesitant to do group therapy.  

In adolescent group "therapy," my dd picked up new ways to self harm, a drug habit, an obsession with homelessness, hooking up with guys in the program, a strong sense of entitlement, acting like a thug, horrible and abusive language, more anti-parent attitude, contacts for pimps and other creeps, and many other things.  We found the negatives far outweighed any good.

1:1 DBT therapy was pretty amazing.  A therapist highly experienced in personality disorders is a must.  

[jessmomof8]

I would exhaust all outpatient options first, and be VERY hesitant to do group therapy.  

We only have one outpatient option here.  It's an hour away, so it's going to put a huge strain on our finances to do that much driving each week.  I'm still waiting for some calls about RTC. Her psychiatrist told me that she doesn't qualify for RTC because she doesn't have a dual diagnosis and all RTCs require a dual diagnosis.     I'm starting to wonder if anyone here knows what they are talking about.   

Her and the therapist gave her this diagnosis and now neither of them knows what to do with her.  I've already switched her therapist.  If the psychiatrist continues to fight me on getting her into an RTC then we'll be switching her too.

I did have a huge breakthrough with my daughter the day after she came home from the hospital last week.  She actually TALKED to me and then LISTENED when I talked.  She started to shut down when I said something that she didn't want to hear but then she stopped herself and kept listening.  Such a relief!  Now, to keep it going!

[Rapt Reader]

We only have one outpatient option here.  It's an hour away, so it's going to put a huge strain on our finances to do that much driving each week.  I'm still waiting for some calls about RTC. Her psychiatrist told me that she doesn't qualify for RTC because she doesn't have a dual diagnosis and all RTCs require a dual diagnosis.     I'm starting to wonder if anyone here knows what they are talking about.   

I'm sorry that the outpatient facility is so far away; for something that you have to travel to and from, in order to have the Therapy, an hour each way really is daunting... .About the "RTCs require a Dual Diagnosis", I have to say that I've never heard of that. Maybe that is the rule for the one her Psychiatrist is thinking about?

My son never went to an RTC, but did go to 2 "regular" Rehabs (his problems included a drug addiction) before the Dual Diagnosis Center admitted him. He had been diagnosed with ADD, Depression, Social Anxiety (mental health issues) and also Drug Addiction and Suicidal Ideations (the co-morbid issues that allowed for a Dual Diagnosis to be met). This was the Center where he finally received the BPD diagnosis. In my mind, your daughter should already be considered to qualify for a Dual Diagnosis requirement; BPD along with Suicidal Ideations and Self-Harming issues... .Does the Psychiatrist seem to think she needs to be drug addicted or an alcoholic for her to qualify? I would ask what constitutes a Dual Diagnosis in this case.

Her and the therapist gave her this diagnosis and now neither of them knows what to do with her.  I've already switched her therapist.  If the psychiatrist continues to fight me on getting her into an RTC then we'll be switching her too.

I did have a huge breakthrough with my daughter the day after she came home from the hospital last week.  She actually TALKED to me and then LISTENED when I talked.  She started to shut down when I said something that she didn't want to hear but then she stopped herself and kept listening.  Such a relief!  Now, to keep it going!

Good for you, jessmomof8! It took me literally 16 years of fighting for my son to get him finally admitted to that Dual Diagnosis Center that saved his life! For some crazy reason, he needed to have been through 2 regular Rehabs and failed each time, and hospitalized 2 times for Suicidal Ideations besides    Right after his 2nd hospitalization for S.I. he was discharged from the Hospital with the order to be admitted to the DDx Center--somewhere he'd always wanted to go! Since he'd already been in and out of the 2 different Rehabs (his first S.I. hospitalization had been many years before the 2nd) by this time, he finally qualified. Messed up system, for sure, but it was the only way his Insurance would pay for it, or the DDx Center would take him. Go figure.

But you are doing right by your daughter by researching her problems and taking an active role in getting her help; my son would never have gotten the Therapy he needed and be in recovery at this point had I not fought for his mental health and well-being all along... .And it sounds like she knows and appreciates what you are doing for her, too. This hospitalization may have helped her to see that she needs help, and if you can get her into that help while she is willing to take it, it should be a huge step forward for her. Godspeed, jessmomof8... .

[HealingSpirit]

Hi Jessmomof8,

My hat is off to you and everyone who does homeschooling! I had 2 T's recommend that we homeschool our DD, but I knew I could not handle that, so my DD had to muddle through until she took the proficiency exam and got her GED at 16. Chances are, your DD would be much worse off if you did not homeschool! I did look into it for our DD ( we actually have a large homeschool community where we live),  but I didn't think I could handle being around my DD 24/7. I don't know how you manage it, but I think it's great that you do.

Wow! I'm so sorry you are dealing with so much. While it is never good news to hear a dx of BPD, the fact that the T and the P both dx your DD at age 14 is very promising for her recovery. I just finished reading Dr. Blaise Agirre's book, "BPD and Adolescence". (He's featured on one of the videos on this site.). He developed a BPD unit at McLean Hospital and they have found that most teens who present with BPD symptoms in their early years are dx with BPD later. So they treat younger teens there with DBT and they have good success. Even so, it seems most of the mental health community are still reluctant to dx teens until they are 18. That is very sad because they don't get the right kind of treatment (DBT) until they are dx with BPD.

I'm so bummed to hear that you also have to drive so far to get therapy for your DD. We're in the same boat here in So. Calif.  We've been with our current T for almost 4 years. He dx our DD with BPD and he knows DBT, but he can't do it all by himself... .and he's a 1/2 hour away. I've been looking for other DBT therapists within a reasonable driving distance, and there aren't any. Our mental health resources in this country are sadly lacking. I hope one day the stigma of mental illness goes away and that there will be more appropriate treatment available on a larger scale for mental health problems.

I also wanted to share that my DD17 also has "loose joint syndrome." Has this provided extra challenges for you? It sure has for us... .having to take her for treatment for strange joint pains and injuries with no apparent cause. Our T first thought our DD has Histrionic personality disorder because she presents with so many weird illnesses and physical problems that have no apparent cause. I've lost track of how many doctors and specialists we've taken her to over her lifetime. -sigh-  My heart goes out to you about this.

Hang in there!