Lactose intolerance is the inability to digest significant amounts of lactose, the predominant sugar of milk. This inability results from a shortage of the enzyme lactase, which is normally produced by the cells that line the small intestine. Lactase breaks down milk sugar into simpler forms that can then be absorbed into the bloodstream. When there is not enough lactase to digest the amount of lactose consumed, the results, although not usually dangerous, may be very distressing. While not all persons deficient in lactase have symptoms, those who do are considered to be lactose intolerant.

Common symptoms include nausea, cramps, bloating, gas, and diarrhea, which begin about 30 minutes to 2 hours after eating or drinking foods containing lactose. The severity of symptoms varies depending on the amount of lactose each individual can tolerate. [Many people diagnosed with irritable bowel syndrome are later found to be lactose intolerant. People with Down’s syndrome have an increased incidence of lactose intolerance. The incidence in CLS is not known. —MCH]

Some causes of lactose intolerance are well known. For instance, certain digestive diseases and injuries to the small intestine can reduce the amount of enzymes produced. In rare cases, children are born without the ability to produce lactase. For most people, though, lactase deficiency is a condition that develops naturally over time. After about the age of 2 years, the body begins to produce less lactase. However, many people may not experience symptoms until they are much older.

Between 30 and 50 million Americans are lactose intolerant. As many as 75 percent of all African Americans and American Indians and 90 percent of Asian Americans are lactose intolerant. The condition is least common among persons of northern European descent.

Fortunately, lactose intolerance is relatively easy to treat. No treatment exists to improve the body's ability to produce lactase, but symptoms can be controlled through diet.

Young children with lactase deficiency should not eat any foods containing lactose. Most older children and adults need not avoid lactose completely, but individuals differ in the amounts and types of foods they can handle. For example, one person may suffer symptoms after drinking a small glass of milk, while another can drink one glass but not two. Others may be able to manage ice cream and aged cheeses, such as cheddar and Swiss, but not other dairy products.

For those who react to very small amounts of lactose or have trouble limiting their intake of foods that contain lactose, lactase enzymes are available without a prescription. Lactase enzyme tablets are available to help people digest foods that contain lactose. The tablets are taken with the first bite of dairy food. Lactase enzyme is also available as a liquid. Adding a few drops of the enzyme will convert the lactose in milk or cream, making it more digestible for people with lactose intolerance.

Lactose-reduced milk and other products are available at most supermarkets. The milk contains all of the nutrients found in regular milk and remains fresh for about the same length of time, or longer if it is super-pasteurized.

International Foundation for Functional Gastrointestinal Disorders (IFFGD)
P.O. Box 170864
Milwaukee, WI 53217
Phone: 1-888-964-2001 or (414) 964-1799
Fax: (414) 964-7176
Email: iffgd@iffgd.org
Internet: www.iffgd.org 

At bottom every man knows well enough that he is a unique being, only once on this earth; and by no extraordinary chance will such a marvelously picturesque piece of diversity in unity as he is, ever be put together a second time.

Circle of Friends

Barb Ackeret

Saukville, WI

Mary,

Thanks for keeping us on your list even though I have not completed the profile. I am still learning so much about Kevin & CLS everyday. I am certain that he has sleep apnea & we are going for a sleep study on the 15th & 16th at Children's Hosp. in Milwaukee, WI. Luckily his pediatric neurologist recently returned to WI & agreed to see Kevin again even though he is 21 now. Dr. Zupanc will be doing some testing & hopefully refer us to an adult doctor who will help us.

I am grateful for the articles etc. that you have on this site. Gives me some wonderful information to help my son. Kevin graduated from high school in June and is working full time at a sheltered workshop about 1 mile from our house. He is picked up daily by a van from this workshop and returns home in the afternoon again by van. He absolutely loves it and enjoys getting his paycheck too. Due to the wonderful job our school district & esp. the staff did in preparing him for this new time in his life, he was able to transition from high school student to "working man" with NO problems whatsoever. He had been working part time at this workshop over the past four years as part of his transition plan & it worked! He has friends and a life outside of our home. He went through the graduation ceremony - wore a cap & gown just like the rest of the class of 2002. What a bittersweet experience. Just a little update on us for now.

Thanks,

Barb Ackeret

Carol Garrett-Blais

Merced, CA

Hi Mary -

Hope this finds you and Davis doing okay. Well, we are scheduled for Charlie's spinal fusion on October 21st at Shriner's Hospital in Sacramento. I am feeling very nervous, anxious, scared, etc. about everything. I have been wondering quite often how Davis (and you) are doing since his surgery? I am also looking for any last minute advise you may have since going through Davis' two surgeries? We have had our appts. with the doctors about what to expect and also I have shared with them the information you had given me previously about using the smallest tube, etc. I feel very comfortable with the doctors but am still apprehensive about the whole procedure. I know whatever God has planned for us will happen, but I'm still going through all the emotional feelings and I am really scared, worried about everything. If I may ask, what did you go through and how did you deal with it? One thing I am very worried about is the drop/startle attacks after surgery. Did Davis have many after surgery and were you worried about the rods breaking, etc. while he was healing? I hope I'm not asking too personal questions of you, I'm really feeling scared and alone in this and know that you went through it recently and am looking for some words of wisdom/advice. Will close for now and look forward to hearing from you.

Carol Garrett

Davis appears to be doing fine, although we will never know for sure if his fusion was successful since that can't be verified on x-ray. He has one more month to go to wear his TLSO brace. Davis hasn't walked unassisted since his first spinal fusion. Yes, be very careful about drop attacks while Charlie is healing, if for no other reason than Charlie's comfort. The rods aren't going to break if he has one, but it will hurt. The drop attacks that Davis had immediately after surgery were quite severe by comparison to his usual, no doubt due to his increased anxiety level. They would last up to 30 seconds where his head would be thrown back and he was rigid. Conscious, but unable to unwind the tension. This happened when he was in particularly scary circumstances, like getting bathed. After the first couple of weeks these subsided back to normal. How do I get through it? Sometimes I steal some of Davis's Prozac. <grin> Seriously, all I can say is put on your own oxygen mask first - in other words, take care of yourself or you won't be any good to anyone. Do some stress management, get exercise, soak in a hot tub or a hot bath. Talk to friends. Pray if it helps you. It's easy to put aside your own needs in the heat of taking care of your loved ones, but you have to be a little selfish sometimes if you're going to be a good caregiver. Don't feel guilty about it.—MCH

Jacqueline Blyth

Bedford, GREAT BRITAIN

Dear Mary,

   Well I’m on the move again. This time we are moving to be nearer to Mark’s school. His speech seems to have come on really well all of a sudden you can understand more of what he is saying now.

   He also seems to have shot up and is getting taller. He reaches into places that I didn’t think that he could. I really have to keep an eye on him now, he’s getting really cheeky.

   I was reading your newsletter about the sleep apnea and the one before that about the cardiomyopathy and by the time I’d finished, I was crying and I was thinking what if it happened to Mark. What would I do. I said I’ve got to watch him more, it   makes me really want to protect him.

   I don’t know how CLS is going to affect him in the future, what is going to happen. I just take one day at a time and hope that nothing bad is going to happen to him. His brother and sister are really good with him.

   I must admit though I do find him hard work when he’s not well, as he tends to get frustrated. I’m trying to find ways of stimulating him. I never know what to get him for Christmas as I don’t know what his brain can take or what sort of toy he can cope with, so if anyone can please give me some idea, I would be very grateful. My new boyfriend is very good with him. He has come on such a lot since I have been with him. He treats all the kids as if they are his own. I really didn’t think that I would find anyone else when I got divorced from Mark’s dad.

   I’m so lucky to have found my boyfriend, He’s so good like I said. I thought that having three kids and one that is disabled that no one would want me. I’ve been with him now for just over 2 years and they are the best 2 years of my life.

Jacqueline.

Davis seems to enjoy anything musical, or that has buttons he can push that make noise, or any toy that has some kind of an immediate cause-and-effect. I bought him an electronic piano/drumpad for Christmas—only $16.99. He also loves any of the stuffed animals or characters that talk when you squeeze their hand. There are some simple record and playback toys out there that Davis also really likes. —MCH

You need only two tools. WD-40 and duct tape. If it doesn't move and it should, use WD-40. If it moves and shouldn't, use the tape.

Gene Karst & Rylla Alden Resler

Judith Fried & Robert Scowcroft

The Play of the Year

By Rick Reilly, Sports Illustrated, Posted: Wednesday November 13, 2002 9:35 AM

Jake Porter is 17, but he can't read, can barely scrawl his first name and often mixes up the letters at that. So how come we're all learning something from him?

In three years on the Northwest High football team, in McDermott, Ohio, Jake had never run with the ball. Or made a tackle. He'd barely ever stepped on the field. That's about right for a kid with chromosomal fragile X syndrome, a disorder that is a common cause of mental retardation.

But every day after school Jake, who attends special-ed classes, races to Northwest team practices: football, basketball, track. Never plays, but seldom misses one.

That's why it seemed crazy when, with five seconds left in a recent game that Northwest was losing 42-0, Jake trotted out to the huddle. The plan was for him to get the handoff and take a knee.

Northwest's coach and Jake's best friend, Dave Frantz, called a timeout to talk about it with the opposing coach, Waverly's Derek Dewitt. Fans could see there was a disagreement. Dewitt was shaking his head and waving his arms.

After a ref stepped in, play resumed and Jake got the ball. He started to genuflect, as he'd practiced all week. Teammates stopped him and told him to run, but Jake started going in the wrong direction. The back judge rerouted him toward the line of scrimmage.

Suddenly, the Waverly defense parted like peasants for the king and urged him to go on his grinning sprint to the end zone. Imagine having 21 teammates on the field. In the stands mothers cried and fathers roared. Players on both sidelines held their helmets to the sky and whooped.

In the red-cheeked glee afterward, Jake's mom, Liz, a single parent and a waitress at a coffee shop, ran up to the 295-pound Dewitt to thank him. But she was so emotional, no words would come.

Turns out that before the play Dewitt had called his defense over and said, "They're going to give the ball to number 45. Do not touch him! Open up a hole and let him score! Understand?"

It's not the kind of thing you expect to come out of a football coach's mouth, but then Derek Dewitt is not your typical coach. Originally from the Los Angeles area, he's the first black coach in the 57-year history of a conference made up of schools along the Ohio-Kentucky border. He'd already heard the n word at two road games this season, once through the windows of a locker room. Yet he was willing to give up his first shutout for a white kid he'd met only two hours earlier.

"I told Derek before the play, 'This is the young man we talked about on the phone,'" Frantz recalled. "'He's just going to get the ball and take a knee.' But Derek kept saying, 'No, I want him to score.' I couldn't talk him out of it!"

"I met Jake before the game, and I was so impressed," Dewitt said. "All my players knew him from track. So, when the time came, touching the ball just didn't seem good enough." (By the way, Dewitt and his team got their shutout the next week, 7-0 against Cincinnati Mariemont.)

Into every parade a few stink bombs must fall. Mark Madden of the Pittsburgh Post-Gazette grumbled that if the mentally challenged want to participate in sports, "let them do it at the Special Olympics. Leave high school football alone, and for heaven's sake, don't put the fix in." A few overtestosteroned Neanderthals on an Internet site complained, "That isn't football."

No, it became bigger than football. Since it happened, people in the two towns just seem to be treating one another better. Kids in the two schools walk around beaming. "I have this bully in one of my [phys-ed] classes," says Dewitt. "He's a rough, out-for-himself type kid. The other day I saw him helping a couple of special-needs kids play basketball. I about fell over."

Jake is no different, though. Still happy as a frog in a bog. Still signs the teachers' register in the principal's office every morning, ready to "work." Still gets sent on errands, forgets where he's going and ends up in Frantz's office. Still talks all the time, only now it's to NBC, ESPN and affiliates from CBS and Fox about his touchdown that won the game.

Yeah, Jake Porter thinks his 49-yard run made for a comeback victory. He thinks he was the hero. He thinks that's why there were so many grins and streaks down people's faces.

Smart kid.

Issue date: November 18, 2002

NICHCY Announces New Web Site

NICHCY is pleased to let you know about the launch of a great new web site by the National Collaborative on Workforce and Disability for Youth (NCWD/Youth): http://www.ncwd-youth.info

NCWD/Youth is one of two technical assistance centers funded by the US Department of Labor to assist the workforce development community in addressing issues affecting the employment of people with disabilities.

The site contains useful information and resources for youth with

disabilities and their families, service providers and other front line workers, administrators, policy makers, and employers. The content is developed by NCWD/Youth partners, who have expertise in disability, education, employment, and workforce development issues. You'll be able to access

materials such as the Information Brief entitled "How Young People Can Benefit from One-Stop Centers," links, resources, answers to your questions, and much more.

For those of you who are interested in employment issues for young people with disabilities, this is a site you'll find very helpful!