I first started seeing Helen three years ago when she was nine. She had a terrible memory problem, could not understand the simplest math concepts (especially when it came to using money), was socially immature and melted down a lot at home. Of course, she was the epitome of sweetness at school which made her mother, Debbie wonder what was going on with her little Dr. Jekyll and Mr. Hyde.
The diagnosis, as expected, was learning disabilities but her adoption from the former Soviet Union made me uncertain. This pattern of learning disability connected to a Russian adoption always makes me wonder about Fetal Alcohol Syndrome (FAS). It’s true that children with full blown FAS are rarely released for adoption anymore. They have physical characteristics that mark the condition and I shutter to contemplate where they all end up. But Fetal Alcohol Syndrome Effect (FASE) has no physical markings. It is FAS light and all the damage is inside. In my experience it is horrifyingly common in adoptions from that particular area of the world and looks just like this.
FASE was not mentioned so I asked if the possibility had been explored. “We consulted an expert,” Debbie replied defensively, “ and she doesn’t have it. She is beautiful and has none of the traits,” she concluded, case closed.
Uh oh. Either this “expert” was not the sharpest stiletto at the shoe store or more likely did not want to open up an uncomfortable or unproductive conversation. Some people believe there is nothing that can be done about FAS(E) anyway, so why make parents feel bad?
I don’t like having these conversations any more than the next person. They are hard and don’t always go well. But who am I to decide what is or is not possible? I am committed to being honest but I don’t want to be cruel. I grew up in a culture where you could walk around with a worm coming out of your head and nobody over the age of 16 would be “rude” enough to mention it. They might call you worm ear behind your back- but would politely avert their eyes and pretend not to notice.
Today, you would get your own reality show, “Keeping up with the Worm” or Dr. Phil would boom at you to “ lose the worm”. None of these extremes helps people or involves conversation.
So, I took a breathe and explained to Helen’s mother how you could not see FASE but that there might be some strategies we could try if we know what we were dealing with. There is some theory, for example, that high doses of folic acid might help brain development in FASE. She asked questions but objected to everything I suggested.
I mentioned specific bonding therapies and supplements that might improve cognitive function. “I am not comfortable with all of these supplements, “ she asserted but continued to talk with me. During the whole conversation I neither got defensive nor offensive but just hung in there with her.
A few months later Debbie returned. Surprisingly, she had purchased and had started giving Helen the nutritional supplements. “But, I don’t see any difference,” she insisted.
I again explained how the brain injury from prenatal alcohol exposure is persistent and pernicious. “This is a long haul operation,” I told her. “Looking back we hope she will have made more progress than expected or be functioning better than she might have otherwise.”
Debbie remained dubious.
Over two years passed and I did not hear from Helen’s mom. Last week she reappeared. “Remember, Helen?” she asked. “She is a 12 year old girl with FAS.”
Clearly something had changed. Debbie and Helen had been busy the last two years. Debbie had enrolled her in a special therapy program for children with FAS(E). She had been evaluated by one of the world’s experts on the condition who opined that Helen was progressing unusually well to therapy and supplements. Finally, Debbie had started a blog about raising a child with FAS to help other families.
“I don’t think the supplements are helping,” Debbie reported though Helen was actually doing better in many ways. The meltdowns were mostly gone, her memory was better and she was doing well at school, though still behind her peers. Math remained her big area of academic weakness and she was still significantly immature for her age.
I decided to change the cognitive program away from motor planning and memory. Helen had been taking everything for 2 years and had probably gotten all the benefit she was going to get from the old compounds. We kept the folic acid and fish oil but decided to try something new I had discovered. It is a unique supplement that helps regenerate the proteins used to send signals in the brain. I was not sure it would work because nobody knows exactly what will work in FAS(E) and said so.
Debbie was not enthusiastic but is considering the suggestion. She also mentioned that Helen had gone through puberty and now had the body of a lovely young woman, “with the emotional development of a 7 year old”.
I froze. That is a bigger gap than I had expected given our conversation so far. “How social is she?”
“Oh, she is so friendly and is very eager to please these days,” was the response.
I asked several more questions about Helen’s life, took a deep breath and started the new difficult conversation. “So, what are you going to do about birth control?” I ventured.
Helen’s mother sighed.
Tuesday, September 28, 2010
Sunday, September 19, 2010
Blog #11 The Subtle Bouquet of Pear Juice
“Dear Mrs. Dorfman,” the ordinary sounding e-mail started. I knew immediately it was from a stranger as nobody that knows me calls me, Mrs. Dorfman because I don’t like being called Mrs. Dorfman. Maybe if I had a cool last name like Starfish or Ravenhurst: but it was not to be. I digress. The e-mail continued.
The writer went on to compliment me on my work with children, etc. etc. and as a result of my interest in the well being of children, she thought I would want to know about her new very yummy organic pear juice. Perhaps, she continued, I would even be willing to taste and comment on it.
It was a request for a product endorsement! This will be so much fun, I thought. The product is certified organic, which is particularly important for products utilizing pears and apples. Both are on the dirty dozen list of produce with the most pesticides (See: www.ewg.org.) Pears are also low in salicylates, which makes this juice a better choice for children with hyperactivity. Finally, pears juice is less sweet than apple juice. Apple juice has about 28 grams of sugar per 8 oz. serving while pear juice has 20 grams. The only problem is that I am not much of a juice fan unless it is green or purple and comes out of my Vitamixer. Still, I recognize the need for healthier drinks for kids and in small amounts, it could be a good choice.
“Absolutely, send some,” I enthusiastically replied.
A few weeks later, the juice arrived. It was in a plastic bottle which is not optimal but is admittedly more practical when small children are involved. I opened it up and took a sip. It tasted just like…..pear juice. It was good, as promised, and sufficiently, peary. I detected no subtle undercurrent of wildflowers or hints of honeybee pollen, not that I could if they were present.
What is there to say about pear juice? “Not too sweet,” would not fly as an endorsement. Maybe, “If you like pears, this is just like them.” Or, “For busy moms who do not have time to juice their own pears….”
Maybe the lady will not get back to me, I hoped fervently. Within days she did and wanted to know if I could comment on her product for her website.
“What am I going to say?” I asked my ever helpful assistant, Tania.
“Maybe if you mixed it with tequila, that would spruce it up,” she offered. “You could call it a Peargarita.”
It probably would make a good Peargarita and would still be low in salicylates. However, the target audience is a different age group.
I was determined to come up with something useful. I like the idea of helping a small independent food entrepreneur. Producing high quality food is a lot of work and there is not enough of it. My husband is the juice drinker in the house, so I asked him to taste it.
“This is really tasty,” he remarked taking a large swig. I leaned forward excitedly.
“What’s so good about it?” I asked nonchalantly.
“Well, it is not too sweet,” he said drinking some more, “and it is very flavorful. I like it.”
I ran back to my computer and started typing. “GoGo Juice is a good choice if you are looking for a pure, flavorful lower sugar juice,” I wrote. It is short, to the point and true. I think it is a GoGo.
The writer went on to compliment me on my work with children, etc. etc. and as a result of my interest in the well being of children, she thought I would want to know about her new very yummy organic pear juice. Perhaps, she continued, I would even be willing to taste and comment on it.
It was a request for a product endorsement! This will be so much fun, I thought. The product is certified organic, which is particularly important for products utilizing pears and apples. Both are on the dirty dozen list of produce with the most pesticides (See: www.ewg.org.) Pears are also low in salicylates, which makes this juice a better choice for children with hyperactivity. Finally, pears juice is less sweet than apple juice. Apple juice has about 28 grams of sugar per 8 oz. serving while pear juice has 20 grams. The only problem is that I am not much of a juice fan unless it is green or purple and comes out of my Vitamixer. Still, I recognize the need for healthier drinks for kids and in small amounts, it could be a good choice.
“Absolutely, send some,” I enthusiastically replied.
A few weeks later, the juice arrived. It was in a plastic bottle which is not optimal but is admittedly more practical when small children are involved. I opened it up and took a sip. It tasted just like…..pear juice. It was good, as promised, and sufficiently, peary. I detected no subtle undercurrent of wildflowers or hints of honeybee pollen, not that I could if they were present.
What is there to say about pear juice? “Not too sweet,” would not fly as an endorsement. Maybe, “If you like pears, this is just like them.” Or, “For busy moms who do not have time to juice their own pears….”
Maybe the lady will not get back to me, I hoped fervently. Within days she did and wanted to know if I could comment on her product for her website.
“What am I going to say?” I asked my ever helpful assistant, Tania.
“Maybe if you mixed it with tequila, that would spruce it up,” she offered. “You could call it a Peargarita.”
It probably would make a good Peargarita and would still be low in salicylates. However, the target audience is a different age group.
I was determined to come up with something useful. I like the idea of helping a small independent food entrepreneur. Producing high quality food is a lot of work and there is not enough of it. My husband is the juice drinker in the house, so I asked him to taste it.
“This is really tasty,” he remarked taking a large swig. I leaned forward excitedly.
“What’s so good about it?” I asked nonchalantly.
“Well, it is not too sweet,” he said drinking some more, “and it is very flavorful. I like it.”
I ran back to my computer and started typing. “GoGo Juice is a good choice if you are looking for a pure, flavorful lower sugar juice,” I wrote. It is short, to the point and true. I think it is a GoGo.
Monday, September 13, 2010
Blog #10 I want to thank Jim Carrey.....
I spent an enormous amount of time last year writing a book. It is about how many common childhood ailments can be caused by nutritional problems and how to fix them. Anyway, we are in the edit phase, an extremely painful process. It is akin to walking to your car after running a marathon: necessary but agonizing. As I am reading the comments to “clarify this” and “take out” that, I feel a little like a three year old. I don’t want to take out that and I think this is clear enough! But when it comes to editing a book, I am a three year old. Consequently, the editor is usually right.
To calm myself down, I have to remind myself how lucky I am to be writing a book at all. For this privilege, I have to thank the actor, Jim Carrey. Really. It is all because of him that I am in the editing process now even though I have never met him.
My unlikely story started with a con man named, Steven Russell. He was a swindler, imposter and multiple prison escapee who was born in the mid-west but now resides permanently in a Texas Prison. With nothing else to do in solitary confinement, he decides to write his memoirs. His escapades are so outlandish that nobody would believe him if he had not gotten a 25 years to life sentence to prove it.
The memoirs landed on the desk of a book agent working for a large literary agency. Russell is clearly crazy but many of his more outrageous antics such as escaping from prison numerous times, he does for love: specifically the love of another inmate named Phillip Morris. Phillip Morris has the misfortune of being named after a controversial cigarette company but that is small potatoes compared to the misfortune of falling in love with Steven Russell.
Peter, the agent, loved the manuscript and options it under the title, “I Love You, Phillip Morris”. He figures, it will be one of those little gem, specialty audience quirky books. And it is. What he does not predict is that one of the specialty audience members will be Jim Carrey. Carrey sees himself playing Russell and buys the movie rights to the book.
Peter’s talent for spotting a great story pays and he makes enough money from the movie rights to start his own literary agency. About that time I was giving a talk in New York City, which is attended by Peter’s wife. She identifies me as a potentially interesting project for her newly minted independent literary agent husband. Peter has the time and inclination to help me along and voila′, a book is born.
You are probably wondering what happened to Jim Carrey’s movie. Carrey got Ewan McGregor to play Phillip Morris and the love story is released in 2009…..in Europe. Even fans of Brokeback Mountain might find the movie a bit racy. I know this because my daughter’s convenient computer nerd boyfriend located a copy of the DVD. I didn’t ask questions; just watched it. It will be interesting to see what happens to Carrey’s career when it is released here in November. He is perfectly cast but perhaps he should not plan a trip to the mid-west anytime soon. Or, maybe they will edit it for American audiences.
So, that is how I came to be rewriting chapter 6 for the third time and daydreaming about who might star in the highly unlikely event that a nutrition detective book would be turned into a movie. Maybe they could call it, “Nutrition, CSI Unit” or “I Love You, Peas and Carrots.” I had better get back to work.
To calm myself down, I have to remind myself how lucky I am to be writing a book at all. For this privilege, I have to thank the actor, Jim Carrey. Really. It is all because of him that I am in the editing process now even though I have never met him.
My unlikely story started with a con man named, Steven Russell. He was a swindler, imposter and multiple prison escapee who was born in the mid-west but now resides permanently in a Texas Prison. With nothing else to do in solitary confinement, he decides to write his memoirs. His escapades are so outlandish that nobody would believe him if he had not gotten a 25 years to life sentence to prove it.
The memoirs landed on the desk of a book agent working for a large literary agency. Russell is clearly crazy but many of his more outrageous antics such as escaping from prison numerous times, he does for love: specifically the love of another inmate named Phillip Morris. Phillip Morris has the misfortune of being named after a controversial cigarette company but that is small potatoes compared to the misfortune of falling in love with Steven Russell.
Peter, the agent, loved the manuscript and options it under the title, “I Love You, Phillip Morris”. He figures, it will be one of those little gem, specialty audience quirky books. And it is. What he does not predict is that one of the specialty audience members will be Jim Carrey. Carrey sees himself playing Russell and buys the movie rights to the book.
Peter’s talent for spotting a great story pays and he makes enough money from the movie rights to start his own literary agency. About that time I was giving a talk in New York City, which is attended by Peter’s wife. She identifies me as a potentially interesting project for her newly minted independent literary agent husband. Peter has the time and inclination to help me along and voila′, a book is born.
You are probably wondering what happened to Jim Carrey’s movie. Carrey got Ewan McGregor to play Phillip Morris and the love story is released in 2009…..in Europe. Even fans of Brokeback Mountain might find the movie a bit racy. I know this because my daughter’s convenient computer nerd boyfriend located a copy of the DVD. I didn’t ask questions; just watched it. It will be interesting to see what happens to Carrey’s career when it is released here in November. He is perfectly cast but perhaps he should not plan a trip to the mid-west anytime soon. Or, maybe they will edit it for American audiences.
So, that is how I came to be rewriting chapter 6 for the third time and daydreaming about who might star in the highly unlikely event that a nutrition detective book would be turned into a movie. Maybe they could call it, “Nutrition, CSI Unit” or “I Love You, Peas and Carrots.” I had better get back to work.
Wednesday, September 8, 2010
Blog #9 Me and the GI Continued......(Blog #5 follow-up)
Remember my neighbor who was throwing up every time she went to visit her apartment in New York? After several weeks, she returned. The doorbell rang and there she was. “Some of your mail ended up at our house,” she said by way of greeting.
She handed me the errant envelop but underneath it I spied a lab report. “So, you got back the mold test results?” I ventured.
“Yes, and they were very bad,” she frowned handing me them to me. “Apparently, the counts are high enough to make the occupants sick. That would be me.”
Glancing over the results, l saw the level of aspergillus was moderately high in the kitchen but off the charts in the bedroom. Aspergillus is the genus name for a group of 200 some species of mold. Most of them are harmless or even useful. For example, one species is used to turn soybeans into soy sauce. Others can decompose plastic. I can think of a few landfills that might be able to benefit from an Aspergillus invasion rather than waiting 10,000 years for the mountains of plastic bottles to breakdown on their own.
Around 20 or so of Aspergillus species cause illness. The most common symptoms of exposure are chest pain, fever, cough and trouble breathing but vomiting is also a less frequent but known symptom. My neighbor had the sudden vomiting episodes whenever she visited the apartment.
“So, what are you going to do?” I asked tentatively. Correcting mold in apartment buildings can be tricky. Often the problem extends beyond one unit and getting a condominium association involved can get messy. In addition, once discovered, mold issues may have to be disclosed before selling a house or remediation proof provided.
“Well, it turns out there is a problem with the air conditioning system and they are replacing all of the units. They have not gotten to ours yet.” She explained. “ I am hoping that will take care of it.”
An old air conditioning unit could be the problem. Aspergillus mold can be found literally wherever there is water or dampness. An old, malfunctioning air conditioning system would certainly qualify as a mold breeder. I would have been tempted to avoid the apartment until the work was done and then retest. My neighbor seemed content just knowing the source of the problem and addressing it over time. She was tied up with other family issues and her husband was unaffected by the problem.
This is a common and fascinating phenomena; several people living in an infected home but only some of them getting sick. I always wonder if the injury being done to the person without symptoms is just attributed to something else later and/or they are truly unaffected. Maybe they have a super mold resistant gene. Since the most adaptive people survive best, in the future, the ability to withstand mold will be the gene to have.
People always think of cockroaches as being the ultimate survival organism but molds are far more resilient. I remarked to Tania, my assistant, that if molds were competing with cockroaches for adaptability, the molds would win hands down. They have already adapted to global temperature shifts and as a result are more virulent and toxic to people. “I think the cockroaches would win,” Tania remarked, “unless aliens were involved. Then they would win, “ she snickered. Sometimes, I don’t think she takes my work very seriously.
She handed me the errant envelop but underneath it I spied a lab report. “So, you got back the mold test results?” I ventured.
“Yes, and they were very bad,” she frowned handing me them to me. “Apparently, the counts are high enough to make the occupants sick. That would be me.”
Glancing over the results, l saw the level of aspergillus was moderately high in the kitchen but off the charts in the bedroom. Aspergillus is the genus name for a group of 200 some species of mold. Most of them are harmless or even useful. For example, one species is used to turn soybeans into soy sauce. Others can decompose plastic. I can think of a few landfills that might be able to benefit from an Aspergillus invasion rather than waiting 10,000 years for the mountains of plastic bottles to breakdown on their own.
Around 20 or so of Aspergillus species cause illness. The most common symptoms of exposure are chest pain, fever, cough and trouble breathing but vomiting is also a less frequent but known symptom. My neighbor had the sudden vomiting episodes whenever she visited the apartment.
“So, what are you going to do?” I asked tentatively. Correcting mold in apartment buildings can be tricky. Often the problem extends beyond one unit and getting a condominium association involved can get messy. In addition, once discovered, mold issues may have to be disclosed before selling a house or remediation proof provided.
“Well, it turns out there is a problem with the air conditioning system and they are replacing all of the units. They have not gotten to ours yet.” She explained. “ I am hoping that will take care of it.”
An old air conditioning unit could be the problem. Aspergillus mold can be found literally wherever there is water or dampness. An old, malfunctioning air conditioning system would certainly qualify as a mold breeder. I would have been tempted to avoid the apartment until the work was done and then retest. My neighbor seemed content just knowing the source of the problem and addressing it over time. She was tied up with other family issues and her husband was unaffected by the problem.
This is a common and fascinating phenomena; several people living in an infected home but only some of them getting sick. I always wonder if the injury being done to the person without symptoms is just attributed to something else later and/or they are truly unaffected. Maybe they have a super mold resistant gene. Since the most adaptive people survive best, in the future, the ability to withstand mold will be the gene to have.
People always think of cockroaches as being the ultimate survival organism but molds are far more resilient. I remarked to Tania, my assistant, that if molds were competing with cockroaches for adaptability, the molds would win hands down. They have already adapted to global temperature shifts and as a result are more virulent and toxic to people. “I think the cockroaches would win,” Tania remarked, “unless aliens were involved. Then they would win, “ she snickered. Sometimes, I don’t think she takes my work very seriously.
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