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!