Wednesday, April 20, 2011

More Appointments, More Ideas

Yesterday we saw Garrett's new pediatric neurologist and his first ever developmental pediatrician. We had an appointment in the same building with his GI nurse practitioner, but we didn't have time for that one.

Pediataric Neurologist:
Said he was glad he didn't have to make the diagnosis of Mito....what???? He just said he thinks it is very hard to have no gene identified and only muscle biopsies and labs to go on....but backed that up that apparently Dr. K in Houston knows her stuff. Hhhmmmm. So he asked a few questions and deferred most of my concerns to his teammate, the deveplomental pediatrician, who we were headed down the hall to see next. No new info. More of just establishing local care.

Developmental Pediatrician:
Now this appointment was very insightful, and I really like this doctor. He saw Garrett after lunch and without a nap and let's just say he was in true "Garrett" mode!! His short take on things is he believes that doctors have been throwing a little water on his mental fire but not gotten the bucket out after the fire yet. He feels that Garrett has extremely bad ADHD and that without that under control via medicine, there is no way to know what he is capable of. So we now have added Vyvanse, the same ADHD medicine his 8 year old sister Ainslee takes. We have seen very wonderful results with Ainslee on Vyvanse, and this doctor felt that was encouraging. So we started him on 5 mg per morning, and then can go up to 30 mg slowly over a few weeks. I didn't see change today, but it is such a low introductory dose that the doctor didn't think we would see any change. Vyvanse can cause some jerks and painful muscle movements in some people, so we want to add this med slowly. Then the doctor has us cutting his Risperidone dose into two doses instead of only at night. This doctor was very helpful in discussing Garrett's recently low IQ score. He thinks we need to throw out that information as Garrett isn't even really able to be tested appropriately yet because of his wacky brain workings. And he went on to say Garrett is certainly we go again...... He apologized for adding that label, but then I reminded him that the Autism has been on the table and slide back and forth, yes and no by so many doctors and therapists and teachers. Bottom line, he says Garrett has a really abnormal brain that is just plain weird and nothing can compare. He agreed that a repeat MRI might be interesting to see when I asked. We would have that done in Houston where they have super high-tech machines. He is very willing to step forward and offer detailed recommendations for Garrett's upcoming IEP 3 year review....preparing to try to enter kindergarten and have a full time one on one aide and get help with changing diapers and then there are the 6 doses of meds he will need if he can get into a full day situation which all of the doctors are recommending. Oh, he also said, when I asked, the same thing Dr. K in Houston says which is that Garrett likely has some ADHD and some issues mentally but that the lack of energy due to Mito make these things into huge monsters for him.

So I left thinking we have yet another plan, another set of ideas, and relieved there is more to try to help our boy. Addie and Ainslee were with me at the appointmens in the nice waiting area with television and computers. They were angels and a huge help with their brother.

So there's the latest. New drug. Autism again. Quirky kid with no real clear cut description!! That's my boy!!

Today when I put him in our bed for his "daytime nap," he kissed me on the lips so tenderly, looked me in the eye on the pillow and then said, "I miss Dad." Dad is in Louisiana working on a new business we are starting, and he is not gone long, but the fact Garrett can vocalize his emotion was so wonderful!!!!!!!!

Goodnight, and please pray for the Mito children seriously ill in hospitals across the country tonight.



  1. I am so glad you got some fresh ideas! I love the doctors who seem to really 'get it'. And what a sweet, touching moment...that Garrett really is such a cutie!!

    Still don't know what my conference plans are, but either way, I am DETERMINED to meet you in Chicago!

    Have a wonderful day!


  2. That sounds helpful and hopeful! :) I'm glad.

    I've got a quirky kid, too. Her middle name is "abnormal, but nonspecific" Okay, not REALLY, but sometimes I think it should have been!