Tuesday, January 25, 2011

Houston Medical Summary

We woke at 5:30 this morning to drive 4 miles, which translates into 45 minutes in urban traffic, to begin the gastric emptying scan we agreed to as part of a research project Mitochondrial Disease and gastric emptying. I knew from a pervious study Garrett had when he was inpatient for almost a month in 2006, that the scan usually involved having the patient eat or drink something with Baruim in it, then lie very still for over an hour for a series of photos to be taken....like an x-ray. I mentioned to the physician in charge of the study WAAAAY back when he first approached us, that Garrett would NOT be able to lie still for a study. He assured me that the techinicians "deal with kids like this every day!" Humph....he had no idea what kid he signed up for this!! We arrived around 7:30, vallet parked, made it through registration and even did fine not using Garrett's name, but rather his assigned research number, and found the right area of the hospital. Garrett gladly ate about a cup of Barium-spiked scrambled eggs, a bite of bread and had some milk. He could not eat or drink after bedtime last night, so anything edible was good to him!! The tech asked me to have him lay on a table so he could watch cartoons while the tech would roll the table in between these panels on the machine that did the imaging. NO WAY, Garrett knew!!! Not happening!! So after I "rode the moving bed" and we all tried to convince him he coudl do it, the tech gave up and just took a series of 1 minute images, 5 sets with time between each one to leave the area or go to our appointment with Dr. Koenig. That all ended around 1:45, finally, and after talking to the research physician on the study, we do not think the data will be helpful because it was not done per protocol. Bummer.

The appointment and study were done across the street from each other, and we could take a skywalk where Garrett could watch the trains go up and down the streets in Houston. Here is Garrett enjoying the view:

First, a resident, Dr. D, she asked Garrett to call her, came in and asked all sorts of questions to update Garrett's chart. She was one of the most interesting, kind, caring physicians I have EVER had the chance to meet. Garrett LOVED her!! This photo was taken while I was talking with Dr. Koenig and Garrett was being a loud terror. Dr. D convinced him to come under the blanket with her and hide!!! This lady will make a child's day and will make parents feel their child is in the very, very best care someday when she is a pediatric neurologist. We pray she continues with this spirit!!
Dr. D asked questions in sections based on different aspects of Garrett's body such as eyes, ears, pulm., cardiology, neuro.....and I was holding it all together talking to her, answering questions about when was last appointment in each discipline, what were new doctors' names and contact info in Idaho, etc., and then we got to neurology. Uh-oh. I was fine telling her we were concerned about upcoming IEP re-do and I.Q. testing because he is getting older. I was even okay telling her how concerned we were about his future and how he will interact with the world. She was so kind to me!! But then I started looking at my list of questions as we talked and I saw the word circled on my paper "BEHAVIOR." I started trying to describe the challenges we have parenting him, traveling with him...just short drives some days, the insanity of some of the interactions and his own frustration. I felt myself welling up inside and was about to tell her I was sorry for the emotions being so on the surface when we met eyes and I LOST IT!!! Never let the tears fall out of the lower eye lid, but I was looking at her through a fish bowl of tears, no joke!! I shared some situations and our sadness over the division in our family like not taking Garrett many places with us, people's comments to us in public about his behavior, his own terrible frustration, etc. She lovingly listened and comforted me and luckily my mom had just taken Garrett for a walk, so we had a minute to talk alone. I shared all the discipline methods we had tried, books we have read, strategies we invented and how it was all crap. How nothing was working and how things were getting worse, not better, even though he is already on one med for psych stuff. It finally ended. I let the tears reabsorb, we had to leave for another scan for the study, and I returned and Dr. Koenig came in. I almost lost it then. I cannot describe the relief it brings me to sit face to face with an expert in this disease and a person I know takes my child's case to heart!! She brought up behavior right away, as I am sure Dr. D had briefed Dr. Koenig about everything......including my fall-apart about neuro concerns!! After trying to check his reflexes and him losing his mind screaming, trembling and crying, then hitting himself and frothing at the mouth before realizing it tickled and did not hurt, she told us she wanted to make him mad or upset to watch his reaction. She said much of what we see with him is an unnaturally high level of anxiety and OCD. She said she thinks I have some anxiety sometimes based on her getting to know me (my sweet mom defended me when she said that, and I said that yes, I certainly have anxiety now I have Garrett!!), and she said she has it too, but there are healthy levels and unhealthy ones. She said these things are around to be inherited and if any relative has any of these issues, they are quite easily passed along to other generations. When a child has even some traces of any inherited mental issues such as anxiety, OCD, etc., and then they have Mito, their body does not make enough energy for their brain to appropriately process and somewhat control things. She said he is the worse anxiety case she has ever seen in a child his age (5.5 yrs.). Said he feels miserable and has no way to pull himself together . It likely causes many of the behavioral issues we see daily. She recommended trying Zoloft to try to curb some of this. She also wants us to start seeing a doctor in the psych field to start counseling and work on these issues. She then said that Garrett is on the Autism spectrum, acknowledging his very social and talkative nature but reminding us that the spectrum is broad and while the Mito likely CAUSES the Autism, he is clearly Autistic. Now with the Autism, she said, comes the sensory problems and the ADHD. So it IS all related. She wants him to stay on his Risperidone for the hyperactivity he has, but add the Zoloft. It is being filled tonight. Other than that, she pointed out to the residents how his tone is low, he is weak, his upper body is weaker than lower, he has Gowers Sign when trying to get up from the floor and other physical traits we know about. She said his kyphosis (the upper back looking like he is slumping, much like an older female will do when back starts to hump over) may be more remarkable than last visit in June. She had blood drawn and urine collected for updated labs, and these will measure lactate, pyruvate, ammonia, liver and kidney function, and more. Should be back next week. She is leaving G.I issues up to our local G.I person in Boise whom we LOVE. That is, unless he quits working altogether in the G.I. department, in which case she wants to be contacted. She wants to see if he has elevated ammonia, which would explain the leg pain he has started to complain about.
And that was that. I spilled my guts more at the end of the appointment just blabbing about what we need to do, how we want to know what's in the future, etc. And of course, no answers.
Here are my mom and Garrett chatting in the exam room:
Then it was off to lunch, last scan, tape a urine bag to Garrett to get a sample, wait FOREVER for him to pee....who would have known taping plastic to a kid's scrotum would make him NOT EVER PEE??? HA! Then finally after a little pee, blood work and finally back to the hotel while Mom kept him while I got to go for dinner with two friends who live an hour from Houston and came in to visit. I came back, said good-byes and got ready for bed with Garrett begging us to turn off the lights. He was only in bed a few minutes, and then this:

I had the honor to once again get to visit with a very, very dear mom, Missy Knight, today. I met her in the spring of last year when she come out to the surgical waiting area while Garrett and another of Dr. Koenig's patients had muscle biopsies. I met Missy and her PRECIOUS son Samuel and really stood there in awe of this beautiful little boy, Samuel, who then and there STOLE MY HEART!!! Last year he lost his battle with Mito, and Missy, instead of stopping living like I estimate I would in her situation, decided to volunteer three full days per week working to help Dr. Koenig and her patients in the office. I hugged her neck and told her how amazed I am by her love and drive. This gal just lost her son and chooses to get back in the fight for the rest of the kiddos. THAT, my friends, is FAITH, HOPE, and LOVE. She gave us our checkout instructions, prescription, and will be sending us info on two studies going on now. One is for diagnosing using new genetics technology, and another is a drug trial. I look forward to reviewing all that info when Missy gets it to me. Missy, THANK YOU!!!!!!!! As if you are not already such an inspiration online through your blog and your message board interaction with all of us, you really have gone above and beyond and NOT given up. We all love and appreciate you!! I had to embarrassingly admit to her that I did not immediately place her when I saw her because I gawked over Samuel so much I barely remembered HER....embarrassing!!! But true. Samuel is a beautiful, perfect angel.
Please stop reading here if you do not want to read thoughts that may be disturbing or somewhat painful. I am about to get really, seriously honest and open.....

Garrett had a big day today. Considering that, he was pretty amazing. Yes, there were many outbursts, lots of screaming, and lots of pulling his new suitcase around with people staring!! I blog tonight in a weird place...mood-wise. I am thrilled we have some things we can do to try to help him more. I am completely discouraged that some of my worst fears are coming true: my child had mental illness issues, not just one, but several. Horrifies me. Before I had children, I shared with my mom that I wished I could adopt handicapped children and raise them. The handicaps I mentioned then were physical. If I had a child with no legs and no arms, by God if they told me they wanted to summit Everest, I could make it happen, and for those of you who know me as an only child, you know I MEANT IT!! I also told her on more than one occasion before and during the arrival of our three angels, that my worst fear, maybe worse than the fear of their having cancer or dying, was the fear one would have a mental illness or challenge. And by the way, I also told my mom and Grouchy that I knew something was not right with Garrett when he was still in my belly. I always felt so helpless when I thought of the challenge of raising a child like that. To date Garrett is OCD, Autistic, has anxiety issues, ADHD and sensory processing disorder. It has happened. I am still alive, but my very soul is crushed, smashed and very sad. I worry too much about the future, and sometimes is handicaps ME!! And more times than not, I am very happy, fulfilled, and sometimes even okay with things. However, I have to get over myself now. I have to give up the what-if's and be okay with the here-we-are's. It cannot be about me anymore, ever. I have to focus more on the here and now.....not the teen I am afraid will not take his meds and get into serious trouble or the adult with mental who cannot ever function in the real world, or worse yet, the mentally unstable adult in the world after I am dead and gone someday. Who will love him, what will his living conditions be? Will he and can he be happy? Independent? Loved? I must learn to push it aside and beg God for the mercy of sheltering me from my own thoughts. But most of all, ask God to heal Garrett in the ways he chooses and help him grow into the person only God can make him. That's a hard prayer because it means I have to be okay with things no matter what, right? Faith, right? Uuuuggghhh.
Thank you if you made it this far!! I appreciate your concern and prayers, and I hope you have been blessed in all you experienced today. Thank you for standing beside me.


  1. Sounds like a very productive appt! I'm glad things went pretty well. Other than getting that motility testing done.

    Praying that with this new information things will get better! We tried zoloft for Maggie but she had an opposite reaction. But then again she had an opposite reaction to the risperidone as well. She didn't use to be this way but now all meds we give her she goes nuts on. I will pray the zoloft works for you guys. I have heard that it is great for other mito kids!

  2. Clara-Leigh,
    You have a family who LOVES and ADORES Garrett and always will! We are here for you, Grouch, the girls, and MY little buddy!!! Remember how your mom took care of Chip, not out of obligation, but out of LOVE! That is what we do for each other and will all do for Garrett. I know it is hard- it is hard for all of us and I can only imagine how hard it is for you. We WILL figure it out and get through it......together! Don't be afraid to ask for help, vent, drink, take medication, or whatever you need to do. I wish I could take him and give you some relief and I will if we can figure out how to do it. I will continue to pray and work on this and do whatever you need/want me to do. I know your faith is tested and that is completely understandable - don't feel guilty. It's OK! WE LOVE YOU!!!

  3. Clara-Leigh.

    Thanks for sharing your visit and your heart. I identified with SO MUCH of what you said. I, too, cried the minute I met Dr. Kendall....I guess from the relief of finally not having to flounder anymore and being in the care of someone who could help. I, too, knew something was wrong from the time Clara was in the womb. I always prayed for my children from the moment I conceived, but I remember laying in the bed praying so hard for her it was physically exhausting. The day she was born, I looked at what seemed to be a perfect baby girl, but knew in my heart something was not right. I think it is fascinating that God supplies Moms with that insight to their children. I worry about the future of my second-born, Emilie, who has multiple mental illness that were passed to her from her mother's side of the family....although I can't say I totally know how you feel. We do not deal with everything you are dealing with. You are a remarkable woman.

    Oh, my sweet blogging friend, I wish I could give you a big hug. I am so glad you got some answers and are in the care of a wonderful doctor you trust, but I know those answers can be hard to deal with. Just know I am sending you a big hug from miles away and praying for an extra measure of grace for you and your sweet family.

    Today, you made ME cry. I guess it was my turn. :-)

    Much love,

  4. Hi CL,
    Oh how I hate that you have to go through this! I wish I could be there and help you with this, like we were there for each other so many years ago in college, for all the silly things that you deal with in college. I am so proud of you for your honesty and your continuing, ongoing, NONSTOP efforts trying to make Garrett's life better. I PRAY that you will find a place of peace with Garrett and things will get to a place of balance for your family. Love you girl!!

  5. A friend sent me the link to your blog... and said, reading this I thought of you... your little man and my little girl sound so much the same with the behaviors.. we've seen so many people who say, well we know she has SPD - maybe spectrum case, maybe ADHD, maybe ODD, maybe mood disorder... my anyway... we are on similar roads and finally getting some answers and hopefully to get her on the right meds soon. HUGS! One mito mommy with behaviors thrown in to another :)