Brandon's previous Psychiatrist makes the news!

http://www.manateesheriff.com/Public%20Interest/BookingInfo.aspx?ID=10156012

Check this out!  We called him Dr Kevorkian!

The pieces come together.....well kinda (written some time between April and July?)

Well I think I left off with Dr Doolittle, doing little. He may have finally come to the realization that the Daytrana patch and stimulant medications are not working and have never been a good fit for him. He finally gave up on the thought of this Daytrana patch being the silver bullet. He said Brandon may be the 1 in 10,000 kids that react the way he did to the stimulant medication. This is good, this is bad. This really just puts us back to the drawing board. He is now going to concentrate on managing his bipolar symptoms. He increased his lamictal to 150 mg and will slowly go up on the dosage to see if we can see some relief. We have to watch extremely closely for a serious, dangerous rash associated with this medication which is called Steven Johnson syndrome. Rick's sister, Maureen came with us. I think she thought that by being there we would get answers. It's sad to see someone’s face when they realize how broken our system is. She asked him what he was going to do to ensure that he won't be on the news. He told her he has 500 patients that are in the same boat of symptom/diagnostic severity that could be on the news. How scary is that? 500 kids that have the potential to be the next Adam Lanza or other mentally ill gunman. Multiply that by all the mental health professionals. That's a lot of unbalanced kids and depleted parents.




We had an IEP meeting last Friday and that went well. The school added summer school to his IEP so that he will be eligible to enroll in the summer camp program with Oak Park. We sent his enrollment, scholarship, and deposit out on Friday. I hope to hear something soon. This will alleviate the stress on Kaylin having Brandon home, it will also help Brandon work on his school skills he has been losing, and keep me working without worry of him getting kicked out.

The Head Banger's Ball, or just banging my head on a wall

We followed up with the neurologist yesterday in Fort Myers.  He wanted to see Brandon and go over his test results and examine him for signs of neurofibromatosis.  According to the doctor he spoke with Brandon's pediatrician who told him that Brandon has lisch nodules in his eyes.  Lisch nodules are one of the symptoms of neurofibromatosis.  I already knew this.  He saw a genetics specialist when he was six or seven because he had multiple café aulaits on his body.  They told me he needed to have another symptom to be diagnosed.  We are looking for these lisch nodules or freckling in his groin or/and armpits.  He sees an eye specialist once a year to look for the nodules in his eyes.  He has had neither.  I explained to the neurologist that Brandon has iris cysts, not lisch nodules.  I wanted to scream at him!  We have been down this road and back again.  He let me know that he wanted to see Brandon in one year and recommended that he have a physical therapy evaluation to see if they can help with is balance and gait.  More appointments!  I sure hope he doesn't expect me to drive to Fort Myers once a week for physical therapy.  Knowing our luck his insurance won't cover it anyway. 

My evening closed with a visit for Brandon's med management with the psych group we take him to.  He asked Brandon some monotone questions.  I asked him about better managing his ADHD and he gave a slip for labwork and said see you in twelve weeks. 

Overall I have had a throughout run around which is completely normal I suppose. 

No answers, more questions.

Why does it take so long to get no answer?  What are we missing, what are they missing?  Is this why my mind is missing? 

He is eating again, which is AWESOME!  Gained a few pounds.

Two steps forward, three miles back

Now it is October and we've been here there and everywhere.  Last October Brandon was Baker Acted for audio and visual hallucinations.  This year at this time he is mostly stable.  Since March he has lost 48 pounds.  We've been to the pediatrician who's sent us for lab work, and an MRI of his brain.  She's send us to a neurologist who's sent us for lab work, and EEG, and an MRI of his spine.  He's send us to a neurosurgeon who then sent us back to the neurologist.  And round and round.  He has gained almost 2 pounds since his MRI of the spine which is a good thing.  He needs to have eye surgery still but we were waiting to see what all these tests were going to tell us.  Which was NOTHING!  His bipolar seems somewhat under control, he's not violent now, just mouthy and inappropriate.  He needs his ADHD meds adjusted but he can't have stimulant medications and his insurance doesn't cover any other the non stimulant options because of cost.  I've been putting this off as well until the weight loss issue was addressed.  The neurologist felt his weight loss was a major concern, but couldn't explain why he was losing so quickly.  While examining him he became greatly concerned with his gait and balance and gave him a generic "gait disorder", and "movement disorder".  We go back on Monday for who knows what.  Possibly another round of tests, or a referral to yet another specialist.  I'm getting frustrated, this same thing happened when he was 7 and the pediatrician was concerned he had neurofibromatosis.  Cat Scans, lab work, eye specialist,  and a trip to All Children's to see the genetics specialist and no further answers then.  I think after awhile I just get frustrated and stop all the nonsense.  Maybe there is no explanation for the mystery called Brandon.  This is just how he is?  No reason?  Progression of his bipolar disorder (neurologist mentioned this) whatever that may mean?  What does that even look like? 

Another concern I've had is with Noah, my little guy.  He's been having some wicked tantrums and it scares me that I'll have two Brandon's.  Of course that's not a realistic statement, but after what I've been through with Brandon it scares the shit out of me.  Having Brandon in my life has changed me forever.  It's changed my view on the world, and changed me into a parent that I'd never thought I'd be and never wanted to be.  When I had Kaylin I made sure she ate enough vegetables, did craft projects, flash cards, homework, etc...  Since Brandon came, everything I ever envisioned when becoming a parent flew out the window.  I have become that insane woman in Wal-Mart that you see with the three wild kids.  Having a Brandon, if you've never had one, makes you realize that what you think things should look like from the outside don't matter.  It doesn't matter what people say about you, your parenting, your housekeeping, or anything.  If you don't live it, you can't possibly even understand or even try to.  It has taught me to be less judgmental, more caring, more tolerant, more patient, more humble, and more dependent on anti anxiety medication.  It has taught me that my "normal" is different that your "normal" and that's okay.  It's okay, right?

I had a talk with my dad a few weeks back which really made me think.  He always has a way of saying things that make me think in a different way, which is awesome!  I was talking about those moms that work full time, go to college, have joined all the committees, and super involved with everything.  I was venting about how I can't get that work/life balance I so desperately thought I craved.  He told me that balance is a myth, and he is right!   I've decided that thinking there has to be a balance has set me up to fail, and to always fall short of my unrealistic expectations.  Expectations that society has placed on me to "do it all".  This is why I'm okay with serving only mashed potatoes for dinner, why I let me son go to school looking like he is in his pajamas, why my 4 year old plays too much on the iphone, why my daughter mopes in her room like I've ruined her life.  In the big picture, the big scheme of things, none of that shit matters.  It matters that I'm giving my kids love, acceptance, setting a good example by working hard, encouraging their individuality, teaching what's right and what's wrong and hoping that they turn out to be semi productive humans.  Or just humans. 

I hope that my kids make better choices that I did growing up so that they can be productive and not struggle financially.  It's frustrating day to day and check to check.  I work hard and hope to reap the benefits financially someday.  This month is Kaylin's birthday and I'm scrambling to pay the late bills from last month, have a party for her, would love to get her an awesome gift, and still have to buy Halloween costumes on top of this months bills.  Next month and the month after, and the month after will be the same song over and over and I hate it.  I'd like to get my van fixed and pay off my debt and do some home repairs or move into a bigger home.  I'm happy with what I have and am not being ungrateful for what I don't have.  I guess I'm just frustrated and don't want my kids to make the same mistakes buy not going to college, or having kids at a young age.  I'm done whining, sorry! 

The Dark Side of the Moon...part 2

Well things have been super hectic. I've finally found my way out of the funk I was in and am moving in a forward positive direction.  It's hard to come out of such a dark hole when it's so much easier to not do anything about anything.  But the show must go on. 

I think we left off with Brandon seeing a new ARNP and a different practice.  Rick and I really liked this man.  He felt like Brandon's ADHD symptoms have not been properly addressed.  He recommended a ADHD stimulant patch call Daytrana.  The trouble was we couldn't find it and when we finally found a pharmacy to order it, it wasn't covered under insurance.  We discovered that his insurance only covered 3 ADHD type medications.  He prescribed generic Concerta which turned into another visit at the doctors office because Brandon couldn't stop moving, even when he wasn't moving.  The universe rewarded us with my father offering to pay for the patch and we soon felt a renewed sense of hope.  We started the patch April 4th and things have gone down hill rapidly since then.  Last week he had FCAT testing and his point sheets were coming home with 80's and 90's.  We were so elated!  Maybe the rapid decline was just his body adjusting the meds.  Woot Woot!  I expressed my excitement in an email to his teacher letting her know how proud I was of him for pulling it together for FCAT testing and how I hoped he kept up the good work.  I then I got shot down, she popped my balloon.  She replied to my email stated they were taking it easier on him because they knew it was a medication issue and he's been horrible in school.  This prompted me to make yet another appointment with the new ARNP for help once again.  Wasn't I surprised when this man I thought cared and was here to help ended up being dismissing and almost belittling in a way.  We were rushed though the appointment.  I brought all the documentation from the school, emails, referrals, hand writing samples to show his decline.  Mr ARNP informed me that there was no pill for handwriting, increase the dosage of the patch to 20mg and told me not to come back for 4 weeks.  I left there fighting tears.

We gave him the increased dose of his patch yesterday.  The school called that afternoon because he got in multiple physical and verbal altercations on several different occasions.  He was moved to the timeout wrong where he got physical with the school staff.  They called the school resource officer to assist in restraining him and keeping him safe.  His violence escalated and the school resource office almost had him arrested for Battery on a school board member. 

I called the doctors office yet again (I didn't want to) and left a message with the nurse.  I'm still waiting for her to call me back. 

He's lost 19 lbs since we've started with the stimulant medications and he's hungry but when he goes to eat finds that the food smells bad.  He's hyper, doesn't stop talking, doesn't sleep well, explosive, and so on and so forth.  I think the use of stimulants has triggered in some way his mania, but what the fuck do I know. 

Not sure what to do.  Rick's mom said I should call Dr. Phil, my step dad wants me to file a complaint against the doctor and write a letter to congress, my mom wants him to see an actual doctor in the Punta Gorda office.  I just want help.  I'm not some crazy mom that wants attention from their kids psych doctor because I'm bored.  He's not okay and he needs help.  If I get in my happy little car and drive him to the crisis stabilization unit and he's not bat shit crazy, they send me home. 

I wish people had some real answers for me instead of all the wacky stuff they think I should do.

Some assembly required. (written 3/16/13)

My home life is quite a mess.  My house is a mess, my son is a mess, my daughter is angry, I'm depressed and get through my day with Xanax.  We are all broken pieces in our own little world of disfunction.  But it's my family and it's my life.  And we know it.  We know how we look to others, we just don't care.  We laugh about it, we crack silly inappropriate jokes about mental health and crisis stabalization units, and meds.  And we keep trying to get through the day so we can recharge for what the next day will bring.  Whomever is stronger that day deals with the current crisis while the other adult deals their own way.  Rick and I are good like that.  I'm strong, I deal, he's strong, he deals. It works for us.  So what happens when we are both deflated and beaten down?  We got a little taste last week.  I decided I needed some pharmacutical assistance with my depression in which I had a severe allergic reaction.  I was useless for about a week.  Rick had to pick up my slack and had to deal with it all.  It was rough.  Things are getting back to their messed up normal and I'm stepping back in with crisis intervention or what ever title you want to label Brandon's whatever you want to call it.

Reflections of the way life used to be....

Or reflections of the way I wish life were or life could be.  What would it be like if things were different?  If Brandon wasn't bipolar and his other variety pack of ever changing diagnoses.  What would I be struggling with, I imagine it would be something. But I wouldn't have my understanding of things in this world without him.  I would have continued on into oblivion about mental illness. 

I'm not a loud voice in the world of advocacy.  I don't have facebook pages, or a blog that is actually read, or walk for the cause and what have you.  I am Brandon's voice though, the only one he has.  The more I read, the more scared I get.  I read on other's blogs about how the system has failed them and there mentally ill child, now adult is in jail and not received meds or services.  Is that him later down the road?  Too much uncertainty keeps me unsettled.

Brandon and I met with a new group on Monday.  We met for a mental health assessment for services and to get a new doctor, hopefully one that will listen and help.  I didn't hate the therapist, but I didn't get a warm fuzzy feeling either.  He will meet with the Nurse Practitioner on March 11th.  I don't even get a doctor.  My thought process on this is as follows;  if I'm going to get a shitty doctor it might as well be closer to home.  This group seems more organized than Family Preservation.  Hopefully they can help.  I'm definitely guarded.