Rx For Parenting Today

Raising a Child with Tourette's Syndrome

Margaret Harmon, an author and parent of a child with Tourette's Syndrome, recently shared with me the account of what she and her husband did to raise a now successful adult, who  has essentially no neurological problems. Their first problem, she said was to find an M.D. who could tell them why their little boy at age four suddenly started "Losing control over his own body". He developed constant tic-like movements, made strange and unpleasant noises, and completely disrupted the family's life.

Once a diagnosis of Tourette's Syndrome was made, Margaret started a hotline and began interviewing other parents who had a child with the syndrome. Then she began to look for ways to "channel his excess energy" into sports, such as soccer, bicycling,  and swimming. Food became another focus and Margaret found that the Feingold diet worked wonders. She had a shelf in their refrigerator just for her son's special foods. She also made a lot of their own foods and grew fruits and vegetables. She kept her boy from anything that was artificially colored, flavored, or preserved. As all these measures began to help, the boy  gradually developed fewer tics and his bad language decreased. The whole family worked to help and Margaret was fortunate to have a very supportive husband. With all the research she did she made a great contribution to the understanding of this disorder. How lucky her son was to have her as a mother and a very supportive father.

I think all parents with or without a child with Tourette's can learn a lot from how Margaret Harmon changed her child's life. I don't ever remember this syndrome being mentioned when I was in medical school or during my pediatric training. There is a Tourette Association at 1-888-486-8738 and the staff will send information when it is requested. Finding a doctor to make a diagnosis can be a problem, but hopefully now more doctors know about the disease. 

Why a Happy, Fun-Filled Childhood is So Important

I was talking with a very successful professional woman the other day and was surprised about what she told me about her childhood. She said she did not really know how to have fun because during her childhood, she always felt she had to be in charge. Her parents loved her, she said, but much of their time, money, and energy went into trying to find an answer to why her brother never felt well and was always irritable. He also picked on his sister and made her life pretty miserable. The boy was never asked to do any chores and became quite spoiled, assuming the world owed him a living. Finally, an older woman doctor found a tumor and the boy immediately was sent to an expensive surgeon in a distant, big city. While the mother and boy were gone, the woman said, as a 13-year-old, she was expected to shop, cook, and take care of her father and much older brother. She said she was delighted to leave for college and though she kept in touch with her parents and saw them several times a year, work because her refuge. Yes, She is extremely successful, but knowing how to play is just not something she does not know how to do. She loves what she does and has many friends, but always works hard to be sure her children and other children have as happy and fun-filled a childhood as possible. 

Being raising with a child with a disability or a family member with one can put a real burden on a child. Fun and play are so very important for kids, so I hope all parents find a way for their children to be kids, not miniature adults.

Children Acting as Family Caretakers

Growing up as a child in a family with little money and an inadequate support system affects far too many children when a parent or other family member becomes ill, is an alcoholic, or has other major problems. In the 5/24/16 New York Times, an excellent article by Jane Brody discusses this problem. She notes that "well over a million American families" have children as young as eight caring for the adults or their siblings. I have had several teenage patients who were the caretakers usually for an alcoholic parent or one who just could not cope. It places a terrible burden on a child or teenager to have to shop, cook, clean, do the laundry and take care of a  family member. It is difficult to keep up with school work when there is such a burden. Jane Brody quotes a statistic I had not heard before. She says that 22% of school drop-outs are because a child has to take care of a family member. I don't understand where are the teachers, the school counselors, and the principal when this happens. We certainly need a social worker or nurse in each school.   The statistic is also given that "As many as 1.4 million American children from ages 8 to 18 care for a parent, grandparent or sibling with a disability or illness." I know many of the siblings of children I cared for with disabilities felt they had to do much more than their share of caring for their sibling with a disability. In the sibling groups I held quite frequently, this was a common topic. 

So if you are a parent or member of a family where you see a child or teen having too many family responsibilities, I hope you can look for ways to help or reach out to others to get help. A live-in college student or senior is often the answer. I have seen this work many times.

What Was This Mother Thinking?

I was in a coffee shop this morning in another town and saw an expensively dressed, tall, pretty blond woman come in with a small child in her arms. The little girl was probably about 18 months old. I looked at her with horror because her hair was dirty and matted, she had on no shoes or socks, and I suspected she probably had not had a recent bath. I kept thinking about the little girl after I left and wondered what was going on. If the woman had come to my office, I would have wanted to find out if the mother was angry the little girl had been born and so wasn't interested in taking good care of her. I could not think of another explanation. If the woman had looked homeless, I could have understood why the child was so dirty, but this was a woman who obviously spent a lot of time and money on herself.

Children can get dirty very easily and need a daily bath. Most kids love to play in a bathtub, unless they have problems with water or sensitivity, as do some autistic children. Washing a little girl's hair can be fun for the child. I always gave my daughter a mirror and she loved watching me put her hair into two bunny ears. Bath toys can also make bath time fun. 

If a child is allowed to get really dirty for several days, they can develop a skin infection or impetigo. They can also get head lice. Neither are fun to manage. It is true that even children who are kept clean can develop these, so no parent should ever feel guilty if they do give their children daily baths and impetigo or head lice are discovered because of contact with an infected child. 

Hypotonia in Children-Inadequate Information on the Internet

When parents, who have a child with muscle weakness, look for information on the Internet they may not realize that even highly thought of places like the National Institute of Health may not provide the best information. I try to periodically check to see what parents might find on the Internet and was disappointed to see what the NIH said on hypotonia. They suggested an enormous medical workup for hypotonia that included even an MRI of the brain, an EMG and on and on. I did not see any place that they suggested a muscle biopsy, which is often the most crucial diagnostic test. They also said muscular dystrophy was one of the causes of hypotonia. Most people when they hear that term think of Duchenne dystrophy which does not produce muscle weakness overall until late in the disease. The boys at birth seem perfectly normal, although if the blood test, CPK, is done, it can be very high. Congenital muscular dystrophy is entirely different and can show hypotonia early on. The site also added cerebral palsy as a cause of hypotonia. Yes, there can be apparent weakness, but the weakness is due to neurological damage, not muscle weakness. Gradually the infants usually begin to show signs of spasticity or increased muscle tension and abnormal neurological signs. 

Sadly, I have seen this kind of misinformation even in textbooks. The National Organization of Rare Diseases (NORD) had at one time considerable misinformation about hypotonia on their website, which they allowed me to change. They do an excellent job of providing information to parents. 

When a infant or small child has true muscle weakness or hypotonia, a muscle biopsy can be done under local. I have even helped surgeons do them them in the hospital nursery. The next problem is that few hospitals, including medical schools, do adequate staining and preparations of muscle, which is why I send children now to Dr.Selcen at the Mayo Clinic. I have seen muscle biopsies from hospitals from across the country that were unreadable, but were signed out with a specific diagnosis. So a word to the wise is to be sure a child is seen in a neuromuscular center, not just by a pediatric neurologist.

Gluten-Free Diets can Be Harmful if a Child Does Not Have Celiac Disease

A good friend,Dr. Ruth Leyse-Wallace, who is an expert in nutrition and worked in major clinics, just sent me an article about the harm a gluten-free diet can do to children if the diagnosis of Celiac disease has not been made and the child does not actually have Celiac disease. In the article it is stated that only about one percent of Americans have  Celiac disease and yet the sell of gluten-free products is enormous. The problem with putting a child on a gluten-free diet, is that the food they are given can be lacking in needed vitamins and minerals. They also may have increased fat and calories and lack in iron and fiber.

 If a child shows signs of either diarrhea or constipation, which both can be signs of Celiac disease, a specific diagnosis needs to be made. There are now pediatric gastroenterologists who should be able to make an accurate diagnosis. Some other signs of Celiac disease are poor growth, irritability and a child who just seems unhappy. Many pediatricians seem to be unaware that constipation can be a sign of Celiac disease and thus a child may go for a long time without a diagnosis being made. I know an adult who was having frequent pains in her stomach and was finally diagnosed with having Celiac disease. 

There are two Celiac agencies who will send information to parents if it is requested. One is the Celiac Disease Foundation at www.celiac.org and the other is the American Celiac Society at 1-973-325-8837.

So if as a parent, you have a question about Celiac disease and gluten-free foods, please talk this over with your child's doctor.

Who's In Charge: The Parents or The Children?

When I see a child acing out, I always wonder if he or she has a mental or emotional problem or does the child know that by acting out whatever is wanted can be obtained?  Children know instinctively, I think, if an adult likes or loves them and they also know which adults can be manipulated. I certainly remember teachers who were loved and respected, but no child ever dared misbehave in their classrooms. Many former patients of mine still stay in touch, even after many years. They know I cared about them and did whatever I could for them, particularly those with disabilities. However, they knew it was a two way street and that I expected them to do whatever they could to help themselves.

I do worry these days that the word "No" seems to be missing from many parents' vocabulary. Instead, they want their children to be their friends and thus they give them choices. Little children do not have the maturity to make most choices. They want and need rules and guidelines and they expect their parents to stand by those rules. It is far too late to start making rules for kids when they get into their teens. The "horse is already out of the barn", as the saying goes. If teenagers are out of control, some family counseling can make a real difference. Sometimes it helps to have a written contract that everyone signs. This will make the teens feel loved and secure, which is what all children want. They want their parents to be in charge. It is too big a responsibility for a child to be in charge of a family.

My Wish for All Mothers on Mother's Day

I hope all of you who are mothers, step-mothers, or foster mothers will be surrounded by people you love and you will take some time for yourself just to enjoy the day. Far too many mothers theses days work long hours, drive their children to many activities and games, and take little time for themselves. Often they have allowed their partner or husbands and children to take it for granted that they are there to  wait on them. Many children these days simply assume life revolves around them and do little to help around the house or have any sensitivity about the needs of their parents or others. 

I realize that Mother's Day is hard for those who have or have had emotionally withdrawn mothers, abusive mothers, or have lost their mothers to death, divorce, or absence. I remember hearing a minister friend give a sermon on Mother's day that was flat and lacking in emotion. Afterwards he told me that he had a hard time on Mother's Day because his mother had mistreated him and then left when he was young. I suggested that if he had told the congregation the true story about his mother  there would probably have been many in his congregation who related to what he said. All mothers are not hugs, kisses and cookie makers. For mothers who have lost a child, as I have, I think we have to remember the wonderful times we spent with that child and that he or she would want us to remember the special moments, not the sad ones.

Little Children Killing and Being Killed by Guns

 Last week four little children shot and killed themselves with guns they found in the house. Another child, a two-year-old, found a gun loose in the car and pulled the trigger. Her mother was killed. I don't understand how any parent could have a gun where a little child or even an older child or teenager can find it. All guns should be locked up and the key kept some place where a child can not find it. May father was raised on a farm and was a hunter. He taught my brother to shoot and they hunted together. Guns were always put away and as a child, it would never have occurred to me to touch one. I think parents have a great responsibility when there are guns in the house or car. Having a gun under a pillow as did the one father, whose little child shot herself is totally irresponsible. Perhaps if we had a law making parents pay the price for a little child's death it would begin to make parents more responsible. I wonder if that would help? Unless we do something more and more children will be  killed or do the killing. Something must be done.

In the U.S., we have 30,000 gun deaths a year. No other civilized country has statistics like this. These are not just statistics, but people's lives. We are having "Shootings by preschoolers at a pace of two a week" according to an article in today's New York Times. This is an article chilling to read. Some children think a real gun is just a toy and pick it up. They have no idea it is real and it can kill. President Obama is trying to get manufacturers to make smart guns that can only be fired by the individual to whom they are licensed. However, with the powerful NRA and the Republican Congress, I don't see that as happening. As parents and grandparents, we do have power and we need to use our power to stop all these killings by little children and others.

Helping Children Learn the Steps of Independence

Most parents hope their children will grow up to be happy, independent adults. Yes, there are some parents who want to keep their children dependent and close by, but I hope they are few in number. I think the greatest gift you can give children is for them to become self-sufficient, happy adults. On raising my own children, helping to raise my two grandchildren, and advising countless parents about raising their children, I think there are some tried and true rules. Children who are indulged and never made to take responsibility for their actions usually have a hard time becoming happy, well-adjusted adults. They assume that society will spoil them, as have their parents and they don't react well when this does not happen. Even one person can make a difference in a child's life and many adults have told me how important a firm loving grandparent, other relative or teacher have made in their lives. Giving small children small tasks, so they can start learning how to take care of themselves is important. Then gradually making the tasks more difficult as the children grow older is the best. Also, praise should not be given all the time, but just when it is warranted.

Little children love to mimic their parents in working in the yard, cooking, washing etc. Having daily chores suited to their age is a good way to start giving more and more responsibility. I firmly believe that both girls and boys need to learn how to clean, cook, iron, and even sew. Many famous designers learned to sew and create things starting when they were small. It gives a child a feeling of great accomplishment to know  he or she can start taking care of things as they grow up. One word of caution is that an older child should not be made to feel responsible and care for younger siblings.i think that this puts too great a burden on a child. With Mother and Father's days approaching, this is a good time for parents to re-evaluate if their children are truly learning the steps of independence, so they can become happy, self-sufficient adults.