Friday, June 10, 2016

Medical Madness

Now that I've gotten caught up on all of my phone pictures, I thought it would be a good idea to do an update on everyone's medical status.  I still plan to blog pictures from our camera.  I know there are some big events on their like John's wedding, the kids birthday parties, and Christmas morning.  I know the medical stuff is boring to some, but it is so important for me because it helps me keep track.  I'm mad at myself for not doing a better job, but I have to give myself some grace.

So as I mentioned in the "My Reality" post, I have three sick family members I am caring for and it is taking it's toll on me. A lot has been going on.

Brian ~
  • Right now, Brian's official diagnosis are 1. Unspecified Attention Deficit/Hyperactivity Disorder 2. Bipolar I Disorder
  • Unfortunately, things got a lot worse before we saw any improvement.  He's been to multiple doctors and facilities trying to find the right treatment plan.
  • We are finally with a doctor and therapist who we feel are a good fit for him.  The negative part is that they are located in Madisonville.  He is currently seeing them every other week and that will go on for at least 6 months.
  • We also feel like we have found some good medicines.  Now, the doctor is trying to get him on therapeutic levels safely and that takes time. 
  • Overall, we see improvement, but there are many bad days.  We are praying that with time, the medicines will level out and he will be able to have the best quality of life possible.
  • Part of this process is coming to full acceptance that this is our life now and that we have to do everything in our power to make it the best life we can.

Macie ~
  • Macie is currently only on an ADHD medicine and that is not enough.  We have a referral to see Dr. Kaplan (psychiatrist) and she will go to him in August.
  • Her anxiety is really bad right now and she struggles when I am alone in public with them.  She is constantly afraid that someone will take her or her siblings.
  • This week she started therapy with her psychologist, Dr. Below.  She was very excited about this and so was I.  Starting next week, she will start in an intensive 14 week PCIT (Parent Child Interactive Therapy) program where I will be involved in her sessions.  We will go once a week for an hour.  After that, she will start having therapy 2 times a month.  This is a lot, but it is so important. 
  • Dr. Below also thought that Bipolar Disorder may be a better diagnosis for her due to her reaction to a stimulant (she went into mania), but is going to leave that to Dr. Kaplan.  She agrees that the sooner we get the diagnosis, the better long term care we can provide for her.
  • Her goal is to make her more self aware and better able to understand, accept, and deal with her disorder so that when she is an adult and on her own, she has a better chance of a higher quality of life.
Gavin ~
  • Gavin had pysch testing and when I got the results he was diagnosed with ADHD (without the hyper part), and "Unspecified Disruptive, Impulsive-Control, and Conduct Disorder".  Basically, he is really aggressive towards me and his sisters and it justifies the anger management therapy that Dr. Bowersox is doing. He is going to continue therapy with her 2 times a month.
  • We met with Dr. Voyles and he put Gavin on the same ADHD medicine Macie is on because it is not a stimulant.  Given our family history, it is best.  It makes him really drowsy in the beginning, but I can already see an improvement in his focus and attention.
  • During the testing, Dr. Bowersox suggested an OT evaluation for handwriting.  We had the evaluation and he did qualify for handwriting and a few other small tasks.  He now goes to Easter Sills on Wednesdays for PT and OT back to back.  We are hoping to just give him a boost in both over the summer.
  • When we met with the geneticist, he indicated that Gavin diagnosis may need to be changed from KTS to CLOVES.  However, when I met with a group of his doctors, they weren't ready to make that change.  I will just keep it in the back of my mind and see.  It doesn't change his treatment plan at this time.
  • Gavin had an ultrasound of his kidneys and they checked out fine.  We will repeat this in a few months to be sure.
  • He recently had an appointment with Dr. Neely and his eyesight is getting worse.  The swelling is going down, but his vision seems to be worse.  They changed the prescription and we should be getting the new glasses soon.  He also prescribed transition lenses because his eyes are extra sensitive to the sun.
  • Gavin has been having a lot of pain down by his ankle on his right leg.  I mentioned it to Dr. Marshalleck and he looked at it with an ultrasound. He didn't find any gaps to put any coils in, but he found a blood clot.  The clot is trapped by the coils so it shouldn't go anywhere.  However, it is causing Gavin a lot of pain.  So much that he isn't walking or doing much.  The problem is, Gavin can't be on blood thinners because he is already bleeding too much.  It makes treating the clot tricky.  At first they said it would just take care of itself, but now we are worried there may be an infection.  They've prescribed antibiotics and high doses of pain meds and we are making him take it easy right now.  If it doesn't get better by Monday, we will be making a trip to Riley.
  • Gavin's GI bleeding is back with a vengeance!  He went 5 months without bleeding.  That is not long at all. Right now, he is bleeding almost daily.  He has another upper and lower scope scheduled for June 27th.  They will most likely do more schlerotherapy (injections) at that time.
  • We are adding a new doctor to Gavin's team.  Dr. Hegge is an oncologist.  She is going to do a bunch of lab work on the 27th (when he is already under) and then we are going to meet with her on July 1st.  She is offering to start a new type of medicine (basically chemo) to help with the bleeding and take away so many procedures.  I am a nervous wreck about it and haven't fully decided if this is the way to go.  I am going to do more research and pray that we make the right decision.  Dr. Haggstrom feels like we should give it a 6 month trial and see how he does.

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