Ever since Matthew was diagnosed with Alternating Hemiplegia of Childhood at the age of 18 months, Renee & I have immersed ourselves in information on special needs children, trying to find best ways to maximize Matthewâ€™s potential and to enhance his quality of life. But given the complexities of AHC and the lack of knowledge about the disease, we have often felt overwhelmed, confused, and even scared about what to do for Matthew.
Many of these feelings vanished on Wednesday, March 6, 2013, when aÂ Dream TeamÂ of doctors from Duke University, led by Dr. Mohamad Mikati (world renowned expert on AHC), came together to start the first ever Global Alternating Hemiplegia of Childhood Clinic. On that life changing day, Matthew was evaluated by five different specialists from various disciplines such as Behavior, Cognition & Learning, Motor Skill Development, Nutrition and Neurology.
Our first appointment was withÂ Dr. Richard Dâ€™Alli, Chief, Child Development and Behavioral HealthÂ atÂ Duke Childrenâ€™s Hospital. Â His office is slightly off the main hospital campus complex, but easy to find and a very inviting setting. We covered a number of behavioral situations with Dr. Dâ€™Alli. He helped to rule out Autism spectrum of behavior, although he indicated that some of the learning techniques for Autism might help. He did confirm ADHD in Matthew and suggested a different medication regimen. We were relieved to rule out any underlying anxiety, depression or other psychological issues.
Then we moved on to what would become longest session of the day lasting two and a half hours!Â Dr. Melanie Bonner, Assistant Clinical Professor of Psychiatry and Behavioral ScienceÂ performed extensive Cognitive and Social Development testing.Â While Matthew was interacting with Dr. Bonner & her team, another member of her staff interviewed us to gather additional information about Matthewâ€™s cognitive, behavioral, and social development. Â And during this intensive evaluation we sat down with Bob Collier & Pete Goswick who graciously provided videography services to capture Matthewâ€™s big adventure at the newÂ Duke AHC Clinic. We hope you find the videos which are currently in the production phase, to be helpful in seeing just how valuable this clinic will be for us as parents, and for accelerating the path to the cure.
Then it was time for lunch.Â There is a great variety of dining options in the Duke campus that houses Dr. Bonnerâ€™s office for AHC families to choose from when they visit. We enjoyed a leisurely lunch at TGI Fridays, which is one of Matthewâ€™s favorites.
Next up was the Main Childrenâ€™s Hospital to seeÂ Dr. Carboni, Pediatrics-Cardiology, who confidently assured us that Matthewâ€™s heart is just fine. TheÂ ATP1A3 geneÂ is expressed in the heart, so there is potential concern that issues could come up. Also, long term use of calcium channel blockers likeÂ FlunarizineÂ can also affect the heart (I know that was the biggest concern when doctors first tried Verapimil on Matthew).Â Dr. Carboni had Matthew wear a 24 hour heart monitor just to be sure.
Then it was one floor up as it was time for Matthewâ€™s favorite doctor,Â Dr. Mikati, Professor; Chief, Division of Pediatric Neurology. Dr. Mikati did a fantastic job of explaining the value of the multidisciplinary AHC Clinic. For example, as he evaluated Matthew, he asked a standardized set of questions that the European researchers are also using. This is a critical step forward in data collection for Alternating Hemiplegia of Childhood. Consistency is crucially important for acceptance of data for clinical trials. This alone is why every AHC family should visit the Duke clinic.Â WRAL TV,Â the Raleigh CBS affiliate, arrived to do a story on the newÂ Duke AHC ClinicÂ grand opening while we were with Dr. Mikati. We were honored to participate in the segment and Matthew sure lovesÂÂÂÂ the camera.Â See the video here.
But there are even more reasons why you will want to visit the Duke AHC Clinic. While Matthew was previously tested forÂ ATP1A3Â and has one of the two most common mutations, Duke sends samples to both their own research facilities and to aÂ CLIAÂ orÂ ISOÂ certified facility forÂ clinicalÂ testing, which is the protocol for providing findings to a clinician and then to the family.Â Also, the Duke Dream Team will compile aÂ customized care planÂ for your child that you & your local caregivers can implement. It will give you insights & strategies like you have never had before.Â Â Cure AHCÂ will also help facilitate feedback from the local caregivers with the Duke team, to further augment the customized plan and provide further valuable insights to the researchers that could create breakthroughs in our journey to the cure forÂ Alternating Hemiplegia of Childhood.
We are blessed that the team creating the plan for Matthew will be the same team that will implement it because we live near Duke. We realize that many people live far from Duke and that travel costs might prove prohibitive. To help our AHC families,Â Cure AHCÂ is actively raising funds to provide travel stipends so as many of you as possible can take advantage of this potentially life-changing clinic.
It is easy to sign up for theÂ Duke AHC Clinic (click hereÂ to learn more).Â If you would like to support Cure AHCâ€™s efforts to sponsor families to attend the clinic, pleaseÂ DONATE HERE. Together weâ€™ll be â€œsoaring on wings of hopeâ€ on our way to Cure AHC.