Drew Underwood

There are some similarities apparent in children with nemaline myopathy beginning at birth. Our Drew is now 9 years old. He was born on February 15, 1989. A c-section was scheduled due to breach presentation....apgar was 9 and we went home with a sweet little boy. There were some sucking difficulties, and low weight gain. At two weeks he was hospitalised overnight for observation....no answer yet as to why he was having difficulties. He was a floppy baby, very alert and was slightly delayed in gross motor skills. At five months, we began seeing a neurologist at Tulane Medical Center, and there were several tests given to Drew, but no diagnosis. Also, at that time we began O.T. with a great therapist. Drew walked at 15 months and was a very happy toddler. We moved to Mobile, Alabama when Drew was 18 months old. We travelled back to New Orleans for O.T. and for the muscle biopsy that gave us the diagnosis of nemaline myopathy, at that time Drew was 2 years old. There haven't been any surgeries as of yet.

"I Wish"

I wish: That I had grieved less when he was born and that I had seen the challenge rather than buy into the sense of failure.

I wish: That I had not always braced myself to be defensive every time we went out - always on edge to explain or justify his existence. Those who knew him understood. Those who didn't, wouldn't understand even with explanations.

I wish: I could say to all parents of a child with problems to sit down and consider what life would be like without that child - his/her laugh, the cute sense of humour that comes out at times, the special way they have of cheering you up when you're feeling sad.

I wish: I could take away your pain and show you how silly it is to always feel that slight touch of inferiority. Yours is the greater triumph when your child develops to his or her full potential.

I wish: I could take away the unkind words, the looks, the ridicule of the juvenile minds around you. But only you can do that by your brave lives.

I wish: I could say to each of you, "be happy".

Kathy Lefferson

Horseback Riding Aids Disabled Children

A disabled child and the movement of a horse make a perfect combination for personal success. Therapeutic horseback riding helps the disabled cild learn multi-tasks to achieve daily living skills. It offers relaxation, focus, academic learning, independence and belief in one's self. Horseback riding, used as a means of teaching vocabulary, spelling, reading and math, is an execellent tool to increase attention span and promote problem solving.
Therapeutic riding originated in Germany and is now catching on in the United States. The children who use this therapy are severely disabled, abused or neglected children. The results provide compelling evidence that therapeutic riding is one of the best therapies, not only for the body, but also for the mind and soul. Therapeutic riding is fun and safe. It's a strenuous sport rarely available to disabled individuals. However, this allows them to participate in a complex and therapeutic activity. It also teaches independence.
The instructors and therapists utilze the movements of the horse to aid in creating more normal movements in the children. These movements are a means of relaxing tight muscles while improving strength, coordination and motor skills. A horse's movements are exactly like a human. Some occupational therapists find horseback riding an ideal modality for therapy due to the fact it meets all the treatment criteria for sensory integrative disorders. Riding also activates the respitory system, aiding in stimulation of speech and normalizing muscle tone.
The children involved in such a program have fun and their progress is amazing. Lots of smiles on the kids faces and they love the feeling of freedom they experience while riding. Therapeutic horseback riding seems to be better than any medicine or tonic. There have been several children whose progress and success have not only surprised, but touched the hearts of all involved.
Contact the North American Riding for the Handicap Association or you local 4-H club for information in your area.

MERIDIA SWALLOWING CENTER

Swallowing is a function we take for granted until it becomes difficult or painfull. Yet, swallowing actually is a complete process, involving about thirty facial muscles and eight nerves. An estimated fifteen million people in the US experience swallowing disorders. Difficulty swallowing (dysphagia) is not a disease in itself, but a symptom of other problems, including gastrointestinal problems, stroke, neurological disease and rarely some cancers. Even prescribed medication can contribute to a swallowing problem. If left untreated more serious medical problems can occur. Symptoms may include heartburn, choking, a "lump in the throat", cough and pain with swallowing.

How you swallow:
Swallowing can be described as having four stages. The first stage is the oral preporatory stage in which the food is chewed before swallowing. Then the tongue propels the food or liquid to the back of the mouth which starts the swallowing response. The pharyngeal stage, which is the most complex and critical, starts next as the food passes through the pharynx. In the final stage, food passes through the esophagus into the stomach.

THE MERIDIA SWALLOWING CENTER:
The Meridia Swallowing Center combines a multidisciplinary approach and sophisticated diagnostic equipment to evaluate your swallowing or esophageal problems. At the Center, you have access to a diverse team of medical specialists - gastroenterologists, radiologists, otolaryngologists, neurologists and speech therapists. The entire Meridia hospital network is available to assist you in an integrated manner. Electrical-stimulation therapy is available.

For more information:
Request a physician referal to the Center; or call the Meridia Medline at (216) 449-4533, or call toll free at 1-800-621-0004.
MERIDIA HILLCREST HOSPITAL, 6780 Mayfield Road, Mayfield Heights, OH 44124.

In Response to the Letter by Dr. Carina Wallgren-Pettersson (issue 1)
by Dwight Kalita, PhD.

As I read the letter by Dr. Carina Wallgren-Pettersson concerning the successful treatment of myself and my son with the amino acid tryosine, I was reminded of the that that during my 50 year lifetime, the orthodox medical profession of which she is a part has failed to offer any successful treatment for NM. In short, the orthodox medical professions' batting average for the successful treatment of NM has been .000 for over 50 years. Then comes along 2 NM patients who have both experienced an astonishing reversal of many of the life threatening and debilitating effects of this terrile killer disease, and Dr Wallgren-Petterson responds by saying she would be "very cautious". Or more precisely, she flat out squelshes the treatment-idea by saying that she would "not recommend tyrosine treatment at the current stage of available knowledge".
If I had taken this doctor's advice over the past 50 years I'm sure that my son and I would be dead from respiratory failure. Indeed we both would be another death statistic which the Nemaline News could add to the growing list of NM fatalities it currently reports. fortunately, however, I have known other highly esteemed physicians outside the confines of orthodox medicine who are courageous and bold enough to enthusiastically experiment with various treatments for NM. For example, I have known physicians through the years who not only recommended the very safe amino acid tyrosine (which is found in many protein foods), but who have also recommended other nutritional substances like the B-vitamin: pantothenic acid (500mgs), as well as a complete and well balanced program of vitamins and minerals for additional sterngth, endurance, and resistance to infections. They have also recommended thyroid for additional strength and endurance as well as Cortef in very small doses of 2-4 mgs for the elmination of secretations so common in very young children with NM. they have also given massive doses of vitamin C when life-threatening viral respiratory infections occur. And they have even educated those who will listen with an open mind about how food and/or chemical allergies can further weaken many unsuspecting NM patients.
Obviously, these various treatment tool will not work for all NM patients. But they do effectively work for some! And guess what: after 50 years of living with the weakening and life-threatening realities of NM, being very successfully self-employed for 25 years, raising 2 wonderful boys with my beautiful wife of 21 years, and co-authorising 4 books on nutrition and medical treatment I, as well as my 18 year old son, who also has NM, are still alive and living life in the best shape we have ever been. And I credit my strength and success to those courageous physicians who have helped me hit treatment home runs for over 50 years. So I respectfully say to Dr Wallgren- Petterson: thank you for your research into NM gene therapy. And I sincerely hope that your efforts will someday be beneficial to those of us who have NM, but when it comes to current treatment modalities that NM patients have found successful, you should have a more enthusiastic and open mind. For the fact is, after a half century of listening to physicians and researchers, I am tired of hearing from "very cautious" M.D.'s - especially neurologists who offer little or no treatment to children and adults suffering daily and even dying because of unsuccessfully-treated NM.