Rx For Parenting Today

Children and the Pandemic

Children are becoming ill and far too many (450) are dying from the virus. Are they being exposed by family members, friends or teachers? Now 29% of the Covid cases are children. I do not understand how any adult could be so SELFISH as to say they will not get the vaccine. Tucker Carlson and his counterparts are certainly responsible for much misinformation. It is hard to believe that Tucker Carlson grew up in the same  small community where I now live and went to Country Day where my children went. Does he just care about the money he makes and the power he has? That is selfish and completely wrong. Of course, he and his family have had the vaccine. 

I am so very glad that I don't have school-age children. No, I would not send a child to school unless I could be assured that every adult and all the children age 12 and up had been vaccinated. If I were a school board member or a Principal or in charge of several schools I would mandate that everyone be vaccinated. That should not be a choice. I wish pediatricians and family doctors would be more out-spoken about the need for everyone to be vaccinated. I have not seen that. Nor have I seen anything from the AMA or other large medical groups about the importance of vaccinations.  

 

Finding an Answer for a Child, Teenager, or Adult with Muscle Weakness

It makes me sad that so many parents and adults have to go through a great deal to find the answer for muscle weakness. I have parents in Africa and India looking for answers for their children. Both children have had countless tests, but and no diagnosis has been made. Hopefully, once the travel restrictions are loosen I can help get them to doctors who are neuromuscular specialists. Sadly, we have few real neuromuscular experts  in most countries.  Four of the most brilliant have died within the last few years. With the great increase in the number of genetic test that can be done, many doctors now order countless genetic tests which may not help. About 50% of diagnoses of muscle disorders are incorrect. This is particularly tragic now that there are medicines that will help spinal atrophy patients, Duchenne dystrophy boys and others. Neurologists usually get excellent training in their specialty, but unless they train in a neuromuscular center, their knowledge of neuromuscular disorders can be minimal or none at all. I think some of my happiest days have been when I saw a child or (adult) who was diagnosed with muscular dystrophy, but their muscle biopsies and lab work showed they had myositis which is very treatable. I still hear from several patients who are doing well after treatment for polymyositis.  Even children and adults who are seen in prestigious medical centers can be given an incorrect diagnosis. I now send patients to Dr. Selcen at Mayo Clinic In Minneapolis if they can come to the U.S. London also has an excellent neuromuscular center. The NIH in the US also has an outstanding program. The popular specialties in the U.S. are those where the doctors can make a lot of money. Sadly, neuromuscular disorders are not a specialty where a lot of money can be made, but what a difference you can make in a child or adult's life.

Thoughts about Charter Schools and the Pros and Cons

Our educational system in the United States leaves a lot to be desired, particularly in low income areas. There was an interesting  article recently in the New York Times by Eve Ewing. She is a former teacher and has interviewed and researched charter schools. I like one paragraph  where she notes that  "Although  charter schools  have  improved, they are "less effective than their non-charter peers". However, she says they are "more effective for low-income students and students of color than for white and affluent students."

I was raised in a college town that should  have had good public schools. However, when I went to Stanford the professors would said, "Oh you would  have had that in high school." They were not talking about the high  school I attended!

One of the smartest things I did when my two children were growing up was insist they go to private school. Our San Diego public schools were not good and certainly do not seem to have improved. Both children received wonderful educations for which I am very grateful. We did not have the money to send them to private school and were living in a small rented house , as we were both just  starting to practice medicine. 

I worry greatly about the education many students are receiving. I think we can see that in many kids need for constant entertainment, social media, and the lack of inner resources so evident during this pandemic. Kids knowledge of other countries, other cultures, and even the history of this country seems to be greatly lacking. 

I hope the Biden administration will push our schools to do a better job and all  children will get a good education, as kids seem to in Europe.

 

Children Diagnosed with the Virus and What Needs to Be Done

Several sources today have noted that a half million children have been diagnosed with the corona virus. I could not find the ages involved and if these were children who had gone back to school. Yes, school is important but a child's health is more important. Unless a school is checking temperatures each day on entry, has a nurse on site, and has followed the strict requirements to reopen safely, I would be very hesitant about sending a child to school at this time. Sadly, only 40% of schools have a nurse on site and 35% of schools have a part-time nurse.

Nicholas Kristof had an excellent article on the editorial page of the New York Times about what is happening in low-income areas where children are being told that classes will be on-line. Yes, the children will perhaps be safer at home, but the problem is that the majority of these low-income children will not have computers and will lose a lot of teaching. Mr. Kristof noted that if these children miss just 10% of class days, this is associated with a seven-fold increase risk of dropping out. Special needs children must have the services law required by law in their IEPs but how these will be provided at this time is a problem. Creative ways must be found, so the children can receive what is needed outside of their schools. Schools need more federal aid, low income children must have computers if their schools will be online, and masks, social distancing, out-door classes when possible, and checking the ventilation systems must all be done or we will have more infected kids.

Geneticists and Neuromuscular Disorders

I am finding more and more medical reports and patients' case histories listing muscular dystrophy as a possible diagnosis because of a moderately elevated CPK. This can cause terrible anguish to parents. Geneticists now are faced with an ever expanding field of genes and disorders, but sadly most of them  have had little or no contact with patients who have muscle disorders. I wish all geneticists had to spend some time in a clinic or program that treats patients with muscle diseases. It certainly would save parents and those of us who have had many years years of experience treating patients with muscle disorders a great deal of grief. 

My advice to parents, if a geneticist or neurologist makes the diagnosis of muscular dystrophy or a muscle disorder, is to seek a second opinion in a well recognized center that treats patients, both children and adults, with neuromuscular disorders. Because I am no longer seeing patients, I refer parents and patients only to Dr. Selcen at the Mayo Clinic.  She was trained by Dr. Andrew Engel who is one of the greats in the muscle world. 

An elevated CPK can occur for many reasons. If blood is taken from a screaming child or an adult has had some recent strenuous exercise, the CPK can be elevated. There are other reasons also. A lab test must go along with a good physical examination, a family history and personal history.  A complete workup would save a great deal of grief for parents and patients.     

Having Fun with Your Children

I see far too many stressed parents these days who don't seem to be enjoying their children or having any fun with them. The parents' focus seems to be getting the children to excel in school, sports and several outside activities. Yes, their children may get into prestigious Eastern colleges, but at what cost?  Will the children remember their childhood as a time of fun or just stress? Will some of these college kids find ways to end their lives by suicide or get into drugs or alcohol? This is happening far too often. I remember the girlfriend of one of my grandson's friends. She was beautiful, smart and wanted to be a doctor.  I was told she  came from a dysfunctional family  and ended her life when she was still in college. What a terrible tragedy and waste. 

Even though I worked full-time, I loved spending time with my two children and their friends. There were always soft drinks and food for them in our refrigerator and over the years we had two different, wonderful housekeepers. One had been a teacher and the other a business owner. Because I was divorced and often at the hospital in the evening, the women took over when I could not be home. I  have special  memories of picking the children  up at noon on Friday, a half school day, and taking them ice skating. At noon on Saturdays, they came by my office and we went to a favorite place for lunch. I didn't  have a lot of money, but we found ways to do things that didn't cost a lot. (Pediatricians are the bottom of  incomes for doctors.) I visited both when they were in college and later we had some special trips. Yes, there were days when I was exhausted, but I feel very fortunate that I was able to enjoy my children and remember many, many good times together. I hope other parents will think about the memories their children will have about childhood and their later lives.

 

The Challenge of Parenting Gifted Children

Bright, creative children offer unusual challenges. It is wonderful to watch a child with unusual abilities grow into a happy, capable adult. However, far too many bright, creative children are programmed by parents, schools, and societies to fail. The Terman study of geniuses that was done by a Stanford professor many years ago provided some interesting answers. Some of the children Dr.Terman studied did exceptionally well. One was Dr. Victor Richards who was our professor of surgery at Stanford. He was a wonderful physician, teacher, and individual. One of the other males in the study became a mail carrier. His brilliant mind was too big a burden for him. 

It would  have been interesting to know how Dr. Richards' parents raised him to be such a caring, normal individual. I  have seen brilliant children  pushed so hard by their parents and schools that they either dropped out of school or life or committed suicide. 

All children want to be loved and accepted. If parents constantly tell children how exceptional  they are, trouble looms. Children need to learn to get along with all their peers and develop good self-esteem.  Some may be brilliant but not great in sports. Finding activities they enjoy is important. They do NOT  have to be good at everything. They need to have fun and learn  there is more to life than book learning. The elite Eastern colleges would  have fewer students commit suicide if this could be done.

Grandparents can help if they, too, understand that the children just want to be loved and valued, Grades are not the measure of a child's success. How they get along with their peers and their ability to learn the steps of independence are far more important. 

Holidays and Grieving

Thanksgiving, especially, should be a time to be with family and friends and to be grateful for all we  have. If you have lost a child, a partner, a parent or a special friend, this may be a hard day for you. I  know it is for me. My daughter, Jennifer, always called first thing on Thanksgiving morning with her special funny Thanksgiving song. I wish I had recorded "Gobble, Gobble Turkey." Jennifer had a wonderful  sense of humor and we always laughed after she sang it for me. It has been a long six years since she died of breast cancer. I grieve with all those who have also lost someone special. They say it gets easier as the days and years pass. I  have not found that to be true. I do try to do, as a wonderful psychologist taught me, to grieve for short times during a day and then move on to something else.

I think as Americans we are spoiled. We do  have terrible violence from guns in this country, but hopefully some day Congress will have enough courage to defy the NRA and do something about it. For  now the terrible effects of climate change in the U.S.have not becoming  all encompassing, as they  have in Puerto Rico, Texas, and the fires in Northern California. I am sure Thanksgiving must be a particularly hard day for those in areas where climate change has been so devastating.  How the people who are trying to roll back all of the environmental regulations can live with themselves is beyond me. We are all going to pay a very high price for what they are doing. Perhaps as the ocean rises around Mar-a-Lago, Trump will see the light. 

I hope Thanksgiving brings  a few moments of joy to all of those who have had terrible problems and pain this year.

Protecting Children in Hot Weather

Now that the days are getting hotter and hotter with the Trump administration denying global warming, parents have to be particularly careful with their small children. I now live in a small beach town where tourists are beginning to come in droves. I am amazed at how even small babies are exposed to the hot sun. I see few hats or covering of any kind on most of the children. It is not yet summer, but some days are almost in the 90s. 

Sun screen is not advised by the American Academy of Pediatrics for children under six months of age. Older children should have on hats and sun screen. Some parents even have their children wear sun glasses which is a good idea but difficult for small children to keep on.

Adequate fluids are important for kids in hot weather, but it should be water, not soft drinks. Light clothing is needed and a fussy baby or small child may just be too warm. Some kind of protection for the feet is important because pieces of glass, nails and other sharp objects can cause a visit to the doctor or ER. Playgrounds covered with sand and beaches can contain all kinds of sharp objects, so parents need to be careful where they let their small children play when they are barefoot. Summer can be a relaxing fun time if adequate precautions are taken, but crowded beaches and playgrounds can be a source of trouble unless you are careful. 

Diagnosing a Muscle Disorder with Just Genetic Tests is Totally Inadequate

I have had two parents contact me recently about the diagnosis of muscular dystrophy given their children when only genetic tests were done. Both of the physicians who made the diagnosis were geneticists, who apparently had not had neuromuscular training. When the doctors were asked about doing muscle biopsies they said "No". My guess is that they did not have the training to do these and also did not have a lab were the muscle tissue could be processed.

No diagnosis of a potentially fatal disorder or any other disorder should ever be made just in a genetics lab. A great deal can go wrong, including human error or lab equipment problems. Fortunately, one of the mothers agreed to take her child to Mayo Clinic, the only place I will send neuromuscular patients. I have not heard from the other parent, but am afraid they are not willing to challenge the doctor, even though it is not because of the expense involved in making the trip to Mayo Clinic.  Yes, we have many more genetic tests than we did in the past, but a complete physical examination, the blood test, CPK, and a muscle biopsy are still necessary before a specific diagnosis should ever be made when there is muscle weakness.What if a child or teenager has a treatable muscle disorder and only genetic tests are done? I have diagnosed many cases of myositis on the basis of the history, physical examination, and muscle biopsy. I do not understand why even major medical schools do not have doctors trained in neuromuscular disorders see patients with muscle weakness.Other countries are far ahead of the U.S. in diagnosing and treating patients with muscle weakness.