Over the years I have taken Brandon to Texas Children's Hospital for various treatments, mainly because the services have not been available in Austin or the expertise is so much more in Houston. Brandon saw his first pulmonologist in Houston when there was no pulmonologist in Austin. I truly believe the pulmonologist in Houston saved Brandon's life after a series of life threatening pneumonia's and long hospital stays when he was very young. The Houston pulmonologist simply developed a plan for Brandon to begin to clear his scarred lungs and to begin to recover from several years of infections. The treatment and medication was simple once implemented and Brandon has not been hospitalized from pneumonia (except the H1N1) since around 5. I also took Brandon to Texas Children's to have them develop a plan to help Brandon eat foods through the mouth safely and to improve his swallow. I video taped the sessions, brought them back for the school, the therapists and the doctors that treat him here. At age 4-5 Brandon did not eat anything through his mouth and today Brandon takes 100% of food and medication though the mouth, except when he is ill. I also discussed having a surgery to reduce the amount of saliva, but ultimately decided the risks were too great. The surgeon in Houston does 100's a year and the surgeon in Austin did about 2 a year. It really makes a difference.
I have not been back with Brandon in a while to Texas Children's mainly because of all the visits to Scottish Rite. Originally, I had planned on having Brandon's surgery for his foot at Texas Children's but the doctor we were scheduled to see ended up taking a temporary position out of the country for 6 months and we decided to go with Scottish Rite.
Today I remembered why I love going there so much. Brandon went to the Genetic Clinic within their specialty care center. The physicians there are associated with the Baylor College of Medicine. I wanted to specifically see Dr. Bacino (http://www.bcm.edu/genetics/index.cfm?pmid=10580). Brandon had some tests done previously and they had all the tests from other clinics already at the office. The visit was to go over all the previous tests, discuss Brandon's condition and determine if we missed anything, needed to repeat anything and if there is nothing else at this time. Dr. Bacino agreed that Brandon's condition really does not appear to be cerebral palsy and that we have probably not found his diagnosis.
We decided to go to the next round of tests. He also videotapes each patient for physician discussions they have each day. All the physicians will review the tests, Brandon on video to see if they have any other tests they believe should be performed. He also told us to not give up on him (Dr Bacino) that this was the first series and he wants to run a few others. Really nice guy and great team with him. I really believe when we get done with all of the tests we will either find a diagnosis or I can at least feel like I tried my best.
Only one bad moment for the day. They wanted a urine sample and Brandon has never been able to give one at a facility. What I feared was, we would be there all day waiting. Sure enough we were. I finally asked if we could get the orders for the urine tests and take them back to Austin. They agreed. The appointment was at 9:30 and we left at 3:00. But I was so relieved that someone is really trying to help that I didn't care. Brandon was soo relieved we were not going to stay there any longer.
I really wanted to try to do this analysis before Brandon turns 18, because after 18 Brandon is considered an adult. The adult physician world is not as great as the pediatric world. I am not even sure who will be his primary physician and I will probably be traveling out of town more often because very few specialists in Austin take kids transitioning with special needs. A few of Brandon's physicians have agreed to continue to treat Brandon, but most will not longer treat him after 18. Even Dell Children's has an age limit of 16. However, if you show up at the ER they will not turn you away. Anyway, I just wanted to let everyone know how it went but to support physicians doing it the right way for kids. Tests should be back in a few weeks and then we go back to review and determine if more are needed. More later.
Leah
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