§ UAB clinic helps adult Down syndrome patients make progress
Posted by Dave Parks -- Birmingham News June 25, 2009 5:45 AM
Categories: Health & Fitness
Dave Parks/Birmingham News
Heather Larkin and Cody Pope share a happy moment while taking a break recently from medical evaluations at UAB's Down syndrome clinic for adults. Larkin and Pope are both from Tuscaloosa. The clinic is one of a few in the U.S. for adults with Down syndrome. It has been open for about two years, and provides a wide variety of specialized care.
Cody Pope used to be an Auburn University football fan.
"Not any more," he smiles.
That's because his girlfriend, Heather Larkin, is a University of Alabama football fan, and Pope switched loyalties so they would have more in common.
"That's what happy couples are all about," he says. "We are officially a couple."
But Pope and Larkin, both 22 and from Tuscaloosa, have something else in common. They were both born with Down syndrome, a genetic condition that accounts for the largest group of intellectually deficient people in the United States -- more than 400,000 men, women and children.
Pope and Larkin came in recently for evaluation together, with family members, at the University of Alabama at Birmingham's Down syndrome clinic for adults, one of only a few such clinics in the country.
Medical breakthroughs, particularly open-heart surgery, have extended the average lives of people with Down syndrome from about 19 years old in 1969 to 60 years old today. But a longer life span has created another challenge -- providing special care for adults with Down syndrome.
Caused by an extra chromosome 21, Down syndrome is linked to a multitude of health problems such as hearing loss, heart malformations, high blood pressure, digestive problems and vision disorders. Those with the condition are also prone to early aging and dementia.
People with Down syndrome have distinctive facial features and often are short in stature. The syndrome is usually accompanied by mild to moderate intellectual disability; occasionally the disability is severe.
Dr. Edward Lose, director of the clinic at UAB, said it is important to get adults with Down syndrome into the medical system and connected to a primary care physician.
That can be tough because providing medical care for somebody with Down syndrome require patience, time and wide variety of tests and evaluations.
"It's a lengthy process," he explained. "These people are here for hours."
Also, many doctors are reluctant to accept them as patients because most are covered by Medicaid, a state-operated insurance plan that pays relatively low rates.
The UAB clinic opened two years ago, and so far has evaluated only 75 patients. The clinic has served mostly as a consultant for the patients' regular doctors and has found primary care doctors for some patients.
"There have got to be more than 75 people with Down syndrome in Jefferson County alone," Lose said. "My major concern so far is we really don't know who's out there."
Unfortunately, the history of caring for people with Down syndrome is riddled with neglect. In the past, babies with Down syndrome were often allowed to die, and doctors viewed medical treatment as futile, Lose said.
Even today, the vast majority of women who undergo genetic testing during pregnancy will undergo an abortion rather than have a baby with Down syndrome, according to studies.
Still, there has been a general movement toward acceptance of people with Down syndrome and appreciation of their value as human beings. Most recently, the life and death of John Mark Stallings, the son of former University of Alabama football coach Gene Stallings, touched the hearts of people in this state.
Lose said there is generally a correlation between age and how well a patient with Down syndrome is doing. He sees them falling into three groups:
• Patients older than 45. "They had very little medical care. They also had very little education. They're not doing very well. Some of them have had all their teeth pulled, things like that."
• Patients in their late 20s to 45. "They do better. Their medical treatment was better. Their education was better, although for some of them education was a blank piece of paper and a box of crayons."
• The youngest group of adults. "They are doing very well. They are active, loving members of their families."
Most patients he sees are employed, sometimes in unusual jobs. One patient worked as Chuck E. Cheese in a restaurant, entertaining children.
"They're excellent workers," Lose said. "Unlike all of the rest of us, they love to go to work every day."
The UAB clinic opened with the help of a two-year grant and support from Parent Advocates Down Syndrome. The grant, which provides about $55,000 a year, runs out next spring.
PADS has provided $25,000 in seed money to create an endowment fund named after John Mark Stallings, and contributions are needed, Lose said. The clinic operates two days a week, and Lose would like it to open five days a week.
"We need at least $5 million and probably $20 million in the endowment," he said. "We will do it. I have a feeling that things will come through for us. It may take awhile."
To contact the UAB clinic for adults with Down syndrome, call 205-335-9385.
We had a great weekend together. Saturday we went the the Farmers Market in Helena and then we worked in the yard a bit and then went out to the pool. The water was so warm but still felt so good! Edie and I were so excited to give Daddy his Father's Day gift we had to give it to him early at dinner Saturday night. Edie worked very hard on a coloring card (I will have to post a photo later). She colored in it, painted in it, put some pictures in it and even left a voice message for Daddy in it. I actually got lucky and recorded Edie saying "Da Da". It was a sweet card. Edie and I also got Daddy a few shirts and a pair of shorts. Edie picked out each of the shirts herself.
Sunday after church we met Stacey and Russell along with Carter and Ross at the Zoo. It was so HOT....miserably HOT....did I say HOT! Our intentions were to meet up and play in the water park area. However, once we got there and saw it-it was not at all what we were expecting. Apparently one side only was working and the other side was filled with big kids hogging all of the fun. There were just a few water spouts that shot out of the ground. And with all of the kids sitting on them, putting their mouths over them, etc. It left little water for Carter and Edie to play. So we went on to the petting zoo, the sea lion and the monkey's. We had a good time but we just could not take the heat any longer so we left and had a snow cone. Edie was a trooper. She had a few moments but I think it was due to the heat mainly and lack of napping. She had a 30 min nap on the way to the zoo. Needless to say after getting home, eating and having a bath she was fast asleep at 6:15!
Yesterday at The Bell Center we were singing Old McDonald and when the teacher held up the cow and asked what this was - Edie replied MOOOO! I was so proud of her! She even signed Dog when prompted during a book we read. She is slowly learning to take steps behind a baby grocery cart. She will take a few steps then sit on the floor and whimper. We know it is only because she does not want to do something that is hard and maybe scary for her - but she can do it. I know she can. We are still working hard on leaning to walk and cruise around tables and furniture. We are also still working hard on learning to not throw toys and to concentrate on one toy at a time. Edie is so active it is hard for her to play with one toy for longer than a few seconds. We have been advised to put away her toys and only pull out a few at at time or divide up her toys to morning, noon and night toys. It is just hard for me to take anything away from her that she enjoys - but I am going to have to be more self disciplined myself and follow the directions we have been given.
After a long day we ended up at the Birmingham Barrons game. Scott's company hosted a tent with food and drinks. This photo shows just how interested Edie was in watching the game. Maybe she takes after her mom?
Not the best quality photos in the world, but just wanted to share. This is Edie all dressed up in her ladybug dress for church last Sunday. The nursery workers said she looked like a mini Dorthy in her red sparkly shoes. She even kept her bow in for most of the morning!
So I had no idea we had to go back to the doc for a 15 month checkup. i thought after the 12 month we were free and clear! But after overhearing a friend talking about how much her baby weighed at her 15 month checkup I looked at Edie's paperwork and realized we had missed it. By about 2 months!! Edie was 2 days shy of her 17 month birthday when we finally went in.
Scott and I just knew chunky monkey had gained some weight and she weighed at least 20 lbs or more. But to our surprise she only weighed in at 19 lbs 12 oz. She does seem a lot heavier these days. She shows 50% in weight on the DS growth chart which is perfect and 90% in length which is really great. Hopefully she will have her daddy's height. She had two shots and did prefect, only a little cry. We are so proud of her and so thankful she is happy and healthy. What more could we ask for?
These are some photos from her big day. This is the norm at the office. As soon as she feels that paper under her she immediately tears it and trys to eat it. Everything is still going in her mouth these days.
We just returned from our First Family Vacation. We have made several "mini" vacations over the past year - but this was our first real, "real" family vacation. We stayed in a house in Old Florida Village in Santa Rosa Beach, FL on Hwy 30A. It was a beautiful home located a few blocks from the beach. The weather was perfect for the most part. It did rain one day and a few times during the night, but it never put a damper on things. We played at the beach, the pool, we shopped, visited a water park in Niceville, FL and ate lots of great seafood.
Each morning Scott would drive down to the beach and set up the tent. He would then run back for his morning exercise and we would pack up the stroller and walk together for a fun day in the sand and sun. We did this so we could make a quick getaway in case Edie got cranky. All we would have to do was pack up the car and drive. However, Edie never did get cranky. She loved the beach - actually a lot more than I anticipated. She would play, take a nap under the tent, eat lunch, and then play more. She loved the water (salt water and all) she also loved to eat sand (a little more than I would have liked for her to). I thought the first time she got a hand full of sand she would think "oh that was a bad idea", but apparently she thought it was a great idea and she would eat more and more.
We ate A LOT of raw oysters. One of mine and Scott's favorite foods next to craw fish. We also cooked at home a few nights. We had a seafood market near our house so we rode the bikes down a few nights and picked up some seafood to cook at home and eat in. One night we cooked shrimp and afterwards I beat Scott in a game of Scrabble. The other night we devoured some excellent crab legs and watched a movie. On the other nights we met Gigi and Giddo for dinner at Stinky's (they came to the beach to and stayed in a condo in Destin). They surprised Edie with a Bear they had made for her at The Bear Factory. She was complete with hair bows, a bathing suit and a birth certificate. We named her Sunshine Bear. Edie loves to pull off all of her colorful bows.
Edie was a great travel companion. She never fussed one single time. We bought her a DVD player before we left so she could watch Baby Einstein videos (her favorite past time). She thought it was the MOST exciting thing in the world! EVERY time it would come on she acted as if she had just opened the best gift in the world! She was so cute and made some of the funniest facial expressions while in the car. We also stopped off at the Peach Park in Clanton and met Nannie for some ice cream and fried apple pie on the way home on Saturday. We had a great time at the beach and made lots of great memories. I can not wait to do it again!
We do have a few 1000 other photos to post. I will get these loaded ASAP - but for now, back to work :(