I desperately need a referral for services for ds, but I'm not sure where to look.

[blessedwithboys]

My 8yo ds is in bad shape.  He's a sensory kid who also has extreme anxiety and severe rapidly swinging moods.  For several years now, I have felt he has bi-polar disorder.  My family tree has mental illness on every single branch, so it's not a stretch by any means.  And one year ago my exdh was dx with Schizophrenia.

Ds was seen by a phsychiatrist on his 5th birthday, but that was not at all helpful.  My son has never been "hyper", not even in the throes of mania.  He sat quietly in the doctor's office for over an hour, even saying "excuse me" when he needed to say something to me, while I went through behavior journals and showed examples of ds's disturbing artwork.  At the end, I was offered a rx for ritalin, for ds's "obvious" hyperactivity issues.  I declined and asked for a psychological eval.  Long story short, we had a change in insurance midway through and it was never really completed.

Fast forward 3 years, and ds has been in weekly counseling since early summer.  It's not helping, in fact, he's getting worse.  He has been seeing a new psychiatrist who is ordering more testing.  We had more testing done yesterday but I am really disappointed in the doctor.  Last visit, he asked me to keep a behavior log, but then didn't want to look at it.  I showed him handwriting samples from ds's school agenda that correlated to dark moods in the journal.  He shrugged.  Ds challenged me in the testing room, and all the guy had to say was "You seem to really butt heads with each other.  Why do you think it is that he only acts up around you and never in school?"  I am SO sick and tired of mother-blame, and BTW, he does do stuff at school, but it's subtle and his teachers so far have all been very young and inexperienced, childless 1st or 2nd year teachers.  They wouldn't have any idea to what to look for.

I can't take my own child anymore.  I can't take being yelled at, pushed, shoved, and even hit.  I can't take the constant accusations because he suffers from paranoid delusions.  I worry when he tells me about the "guys" he sees standing next to him all the time.  I'm beyond tired of never knowing who my child is going to be from one minute to the next because his moods dictate his personality.

Mostly, I am losing my patience with my small-town care providers.  I am seriously considering taking him to NYC to see Demitri Papolos.  I have requested info from a children's hospital in Miami.  Where else can I go?  Is there a university hospital specializing in pediatric mood disorders?  A famous clinic somewhere?  I've googled my brains out but I just can't find what I'm hoping to find.  I am able to travel anywhere in the country to get this child diagnosed so treatment can begin.

And I know how it sounds that I am saying I KNOW for sure he has an issue.  I know how much doctors just love parents like me who are well-read and prepared to advocate.  So I don't mean to sound like a know-it-all, but I am sure something is going on in his brain.  Last week, he threatened to jump out a 4th floor window, and ran toward it and only didn't get the window open because I moved faster than I have ever moved in my entire life.  Then he told me that he woldn't have gotten hurt because he would have trapezed his way down 4 floors worth of balcony railings.  This, from a kid with a fear of heights and low muscle tone.  So, yeah, he needs help, and fast.

Thanks so much if you  made it this far.  :)

[QueenOfTheMeadow]

I hope this doesn't come across as harsh, I am very very concerned for you both. So, I'm going to be completely blunt here. You are in danger. Your child is in danger. You need to get your child to a hospital ASAP. If that means driving him to an emergency room in NYC, do it now. Do not wait until you aren't quick enough or you get hurt. I'm so sorry you are going through this. And you are the mom. You know your child. And being an advocate for him is exactly what you need to be.

[VisionaryMom]

Originally Posted by blessedwithboys 
 Last week, he threatened to jump out a 4th floor window, and ran toward it and only didn't get the window open because I moved faster than I have ever moved in my entire life.  Then he told me that he woldn't have gotten hurt because he would have trapezed his way down 4 floors worth of balcony railings.  This, from a kid with a fear of heights and low muscle tone.  So, yeah, he needs help, and fast.

This behavior is a classic form of mania. I would talk about it with the next medical provider you see. 

We have been through similar things, though DS has been stable for about a year. We also got the same, tired responses from the medical professionals we saw, though I am bipolar and recognize many of my behaviors and feelings in things DS does and says. 

If you can find The Bipolar Child, it's sort of the bible of juvenile bipolar disorder. They have a listing in it of well-established children's psychiatric centers with bipolar divisions. The closest one to me is in Cincinnati, so it's the only one I can think of right now, but there were a dozen or so around the country. I don't know what it's like to get into one, though. DS was 4 when we were looking, and 6-7 was the youngest most would see patients.

Good luck. I hope that you find something that works. If it gets really bad again, I would consider an emergency room. At least you will get checked out by someone who is looking specifically at the current situation.

[QueenOfTheMeadow]

P.S. I wanted to let you know that I've been through something similar, but not quite as dramatic. It was heartbreaking to see my son so out of control and I could do nothing to help him on my own. We were able to get him in to see a pediatric psychiatrist immediately, and the medication he was put on has been a life saver for him and for the family as a whole.

[blessedwithboys]

QOTM, not harsh at all.  :)   I realize the implications.  But my child has a way of looking totally normal to the outside world.  He had this last episode in front of my sister and niece, and he acts up all the time in front of his teenage brother, but other than that, no one else ever sees the real him.  His step-mother recognizes signs of anxiety and sensory problems, but he doesn't have rages at their house.  Plus, his moods change so so rapidly, literally every 5-10 minutes.  So the next time he threatens harm, if I grabbed him and ran to the ER, by the time we got there he would be completely calm.  And then it would look even more like my "fault" than it does now.

VM, I have read that book.  That's what convinced me my ds has BPD.  I was led to it bc my exdh told me he had been dx with BPD.  I read up on it and it really explained alot.    He later retracted that, but I had already read the book about children bc my ds has been...not "normal" since infancy.  Since then, ds has only gotten worse, and his father was hospitalized for schizoprenia. 

I just found out that the children's hospital doesn't take Medicaid.  Ugh.  The search continues.

[waiting2bemommy]

Have you tried a university? They often have sliding scales. I get my counseling from someone who is doing her internship or whatever you call it. In my case, she is adequates to help me with my issues, but she has two highly trained professionals who supervise her and they regularly step in and even take over therapy whn it is warranted. It wouldn't necessairyl help you get meds, but it might help you get therapy and some sort of diagnosis that you could then take to a medicaid-approved doctor.

I know how hard it is when you have medicaid....I've been looking for paly therapy for my ds (his issues are much milder though so I haven't been as persistent) and all the good people don't take medicaid, or their slots are full for over a year. good luck!

[Emmeline II]

I googled "child psychiatric services" and "child psychiatric services miami".

 

Even if you have to travel for your initial evaluation, they may be able to get treatment closer.

Division of Child & Adolescent Psychiatry

Child Psychiatry and Psychological Services - Miami Children's ...

Spotlight on Patient Care Facilities

Targeted Child Psychiatric Services: A New Model of Pediatric ...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Child and Adolescent Psychiatry Services

Child and Adolescent Outpatient Psychiatric Services

 

Targeted Child Psychiatric Services: A New Model of Pediatric ...

[Delphiki]

I am going to recommend Dr. Vijaya Peddu in Somerset, NJ (75 Victoria Ave #202, Somerset NJ 732-729-1200.) She was recommended to me by Carrier Clinic and she is fantastic. My son has child onset schizophrenia and she is awesome at working with kids with psychosis.

She was able to see my son as a new patient within 14 days. That is unheard of for this area.

[SpottedFoxx]

If you are in the NJ/NY/PA area, I'm going to recommend Children's Hospital of Philadelphia.  My son sees his developmental pediatrician there and they are wonderful.  If you feel that, as the previous poster said, that you and your child are in danger, please go to their emergency room.  They are wonderful and are a truly caring organization.   My son as been there for normal childhood stuff where we weren't a priority and have been the #1 priority of the emergency room.  In all situations, we were treated (all of us, not just my son) in a caring, respectful and loving manner. 

You and your son will be in my prayers.  {{{hugs}}}

[blessedwithboys]

Thanks to all for the good info.  Miami Children's Hospital may actually take Medicaid for the psychiatric department.  Something got mixed up and they said they didn't take it but that was a mistake.  I just found out, so I am about to call them in a few.

The NY and PA hospitals aren't geographically close to me, but I have ties up that way and can easily get him there for eval and dx.

I should have the results of his psychological testing in a few weeks and when they are ready we see the psychiatrist again.  Between all my notes and journals, and family members who are able to corroborate, if she isn't prepared to start a med trial, I am going to Miami to the Dan Marino Center for comprehensive eval.

Thanks again!