Dr. Thompson's Blog

Resources for Children with Special Needs

I was watching a news program the other day and saw a segment where the mother of a tiny baby, who had a severe heart problem, was fighting with Medicaid to have heart surgery done for her baby  at Boston Children's hospital. She was trying to get Medicaid to pay for transportation there and to receive approval to have the surgery done outside her state. At no time, was there mention of the  state's program for childen with special needs. I was puzzled becasue this is where the mother should have been putting her energy, not Medicaid. Each state has a program for chidlren with special needs. I have listed these, state by state, in three of my books: 101 Ways To The Best Medical Care, Raising a Child with a Neuromuscular Disorder, and Grandparenting a Child with Special Needs.

Unfortunately, doctors these days do not always refer parents to these programs. This should be done right after a baby is born, so that hospital bills can be covered, if necessary, and arrangements made for the best possible care. Yes, parents often have to  be very assertive to get through the bureaucratic maze, but the involved doctors should guide the way. I have done this countless times for patients and made many calls to the directors of  state programs.

In the past,  both Southwest Airlines and American Airlines have been willing to provide transportation for medical reasons, if a letter was sent by a child's physician. I have also done this many times and it is possible that these programs still exist. At least this is worth investigating.

Hospital Care versus Home Care

Far too many patients these days develop an infection when they are in the hospital that was not present when they were admitted. An excellent article in the December 5, 2011 New York Times by Dr. Jack Resnick talks about how "hospitals are expensive and dangerous."  He tells about a patient of his who was a quadriplegic and after being shot in a robbery was admitted to the hospital. The  man developed a bedsore which became infected and he did not survive.  Now Dr. Resnick says he tries every way possible to keep his patients at home. He mentions the Veterans Affairs' Home Based Primary Care Program which has both doctors and nurses. Hospital days were reduced by sixty-two percent and total health care costs decreased by twenty-four percent. The new health care law created Independence at Home Organizations. If the Republicans don't defeat the bill, what a great gift that would be for patients and for the national deficit. With all the terrible statemate now in Congress this provision of the health care law has not yet been implemented. We all need to fight hard to keep the Republicans from destroying a very good bill. Yes, there are some things that need to be changed, but already Seniors, those with pre-exisiting conditions, and young people, who can stay until they are 26 on their parents' health insurance, are reaping the benefit.           .              

Kidney Stones in Children and Teens

When children and teenagers have abdominal or stomach pains, most  parents and many doctors don't think of kidney stones. An article in the last Pediatric News by John Foreman, M.D. states that the "incidence of kidney stones is increasing dramatically, especially in teenagers."  The author says  that there has been a three to five-fold increase of kidney stones in the last fifteen years, especially in teenage girls. This is interesting because in adults, men have more kidney stones than women. it is also important to note that African-American kids have few kidney stones, unless they have a syndrome such as Lesch-Nyhan Syndorme. I cared for a teenager with this syndrome and Dr. Nyhan, whom I know, was great about guiding my hand in caring for this nice youth.

Dr. Foreman said that no one is quite sure why this increase in kidney stones has occurred. It could be due to the increase in obesity that we are seeing and also to the fast food diet that many families and kids live on. Unfortunately, kidney stones in kids may be hard to diagnose because fifty-percent of kids don't have localized abdominal pain or they may not have blood in their urine like adults. If a child is under the age of six, the stones may be associated with a urinary tract infection. I find that doctors who see chidlren do not check urines as frequently as they should, nor do they get urine cultures. These are simple tests that are very frequently overlooked. A smart parent may have to demand that these be done. The cause of a kidney stone should always be explored once it is removed because there could be an underlying metabolic disorder.

Misdiagnosis or Lack of Diagnosis of Rare Diseases

How frustrating it must be to not feel well and yet be unable to find a physician who can help. Even when doctors order an enormous battery of tests, as many do these days, the cause of a chronic problem may go undetected. I remember when I was doing some additonal training in neuromuscular disorders and the head of the unit asked me to see a child with hip pain. The child had been referred to him for a possible disorder of the muscles. After taking the history and doing a complete examination, I had no doubt that the child had juvenile rheumatoid arthritis (JRA) and should see a pediatric rheumatologist. The head physician didn't believe me and multiple tests, including a muscle  biopsy, were done. A year later, I received a call from the doctor who said, "Do you remember the child you thought had juvenile rheumatoid arthritis?" "Yes, I said. " "Well, you were right.", he said. Yet it took a year for the diagnosis to be made and it was a year when the child should have been receiving treatment. With JRA, as with the other collagen disoders, the faster treatment is started the better the results. In an article by Mary Fischer in the AARP magazine, she notes that the most commonly misdiagnosed diseases are; Lupus (a collagen disorder), Lyme disease, multiple sclerosis, fibromyalgia, celiac disease, Parkinson's disease, and chronic fatigue sysndrome. She says the NIH has a Undiagnosed Disease program and twenty-five million Americans have a rare disease. The Mayo Clinic has noted that twenty percent go undiagnosed. An excellent organiztion to consult is NORD, the National Organization of Rare Diseases at 1-800-999-NORD.