Thursday, March 31, 2011

It's Not Mental: A New Book About a Mother's Journey to Save Her Daughter from a Diagnosis of Severe Mental Illness


Jeanie Wolfson's life was full of promise:  an engaging job as a computer software developer at IBM, and a happy marriage with her husband, Greg.  She had instantly fallen in love with Candace, her husband's daughter from a previous marriage, now adopted and living as Jeanie's own.  A happy girl, Jeanie's "sunshine", Candace was looking forward to a baby sister.  It was 1987, and at 30 years old, Jeanie had a full term beautiful baby girl named Keri.  What unfolded over the coming years wasn't what Jeanie expected.  

Her baby girl was sleepless, screaming and writhing in pain.  It's just colic, the doctors would say.  By the time she was 12 months old, her ears were riddled with repeated infections, she developed allergies and would fall flat on her face at unexpected times (the doctor would diagnose this as ataxia).  At two years old, she was diagnosed with migraines.  The next 17 years would be filled with pain, both for Keri and her mother, as Jeanie navigated through a mental health system that diagnosed Keri with tics, OCD, ADHD, depression, anxiety, bipolar disorder, and schizoaffective disorder.  By the time Keri was 16 years old, she was diagnosed with osteoporosis, along with chronic fatigue and fibromyalgia.  Keri was not absorbing nutrients from her food, but nobody knew why.

Keri adored her big sister, Candace, and they were constant companions.    At age five, Keri, a speed reader, was helping her sister with homework, keen on finding the answers with her quick mind.  They spent hours playing pretend together, but eventually Keri would need an assistance dog to help her figure out what sights and sounds were real, and which were imaginary.  When older sister Candace was 17 years old, her life took an unexpected turn into depression segueing into severe mood swings. These symptoms were eventually diagnosed as bipolar disorder.  

Candace would later be hospitalized in a different city where she went to college, and Jeanie would have the impossible task of caring for two daughters diagnosed with mental illness who lived an hour apart.

It's Not Mental is Jeanie's story of navigating a dis-integrated medical and mental health system that looks at medical problems in isolation, one body part at a time.  After years of perseverance and determination, Jeanie helped her daughters heal with diet, hormone balancing, nutritional supplements and integrative medicine.  Candace and Keri are now college kids living independently, studying in the fields of nutrition and social work.  I recently spoke with Jeanie about her new book.  


Q:  What was the first clue that something wasn't right with your daughter, Keri?

The first clue was her extremely fragmented sleep and screaming fits. Even when she did sleep, it was very disturbed with screaming and thrashing about for hours.  My parents recognized something was wrong a lot sooner. I really missed a lot of her early clues. 

Q:  You mentioned that Keri had a variety of mental health diagnoses when she was young.  Can you describe what Keri was like during the grade school years.  What was a typical day like for you at that time?

There was no real "typical day" for Keri, so there wasn't one for me. That is part of what we call the "roller-coaster" with a child like her.  It was hard to know what to expect. Keri had good days, bad days, and worse days. There was even a time when she spent 3 weeks sleeping. During that time I couldn't go in to work except when my husband stayed home to be with her. Sometimes my life was wonderful and "typical" - when we went for bike rides, and walks to the park. On Saturday mornings, we all pitched in and cleaned the house. Saturday evenings we had family time with board games, friends, dinner and sometimes watching some TV. Some days Keri spent hours just screaming and it frazzled our nerves. I liked going outside and gardening or something when she was spending hours screaming and crying. Things got worse gradually at first. I felt frustrated a lot of the time. She complained a lot about how she felt and I had to take her to doctors a lot but they didn't find anything wrong with her. Some days I'd take her to school, go to my office, work a few hours, then be called back to the school because Keri had a migraine.

When Keri was obsessive at night, she "had to" complete her rituals, and I worried when it delayed her getting to bed early when I knew she also had limited energy. 
Some mornings she'd have meltdowns, and I practiced relaxation techniques. I'd go wait in the car for her and she came out when she came out. She was naturally responsible and mature in many ways, so she was responsible for her own clothes, lunch, homework and getting herself out of the house. For the most part. I helped when requested. She was a fairly independent child up until she became acutely psychotic in middle school. After that, my life was constant stress with her school, her multitude of appointments, watching over her, and her either clinging to me or cussing at me. 

Q:  
How were you able to meet Keri's needs and still maintain your job at IBM?

The company, and my managers were exceptional. This was before home-offices were common, but they set me up with a home office, installing two extra telephone land-lines, and still kept my office in the building. That way, I could work from either location. I was able to do my job at nights and weekends - as long as I could get some core hours in during the workweek, which I did.

Q:  
What was the most difficult part of raising Keri?  

There were so many difficulties, and what was "most difficult" differed with different ages. When she was young, the lack of sleep was the hardest on me. And listening to her screaming and screaming and screaming for hours nearly drove ME "insane." When she was older, it was hard to have her lash out at me verbally and not respond. And we never knew how things would go. We never knew if anything we planned to do was going to happen because everything revolved around how she felt and what she was capable of coping with - which changed from hour to hour. I had gnawing fear about her future.  I was determined to have her life be better than my own biological mother's. Little Keri had the same symptoms as my mother.

Q:  
What were the first signs that things weren't right with your older daughter, Candace?  

I didn't know anything was wrong until she was severely depressed, but there were clues we did not recognize when she was younger. Looking back, she had allergies when she was young, frequent sinus infections, "allergic shiners" under her eyes, problems falling asleep, and although she was very thin, she had a bloated belly. I did know she was moody, but I didn't think it was unusual. 

Q:  
At what point did you find a doctor that helped you turn the corner with your daughter, Keri?

When Keri was 16, we found two new doctors for her, both via word-of-mouth.  A new GP recommended by friends acted as a conductor in what became a medical symphony.  The Internet brought us to an endocrinologist who ran many tests on her, undeterred and unprejudiced by the diagnoses of mental illnesses. Both were willing to take a fresh look at her myriad of symptoms.  

This at least got us looking in a medical direction to help her to feel better and enhance the quality of her life. We had no idea that by helping her 
feel better it would also help her "mental" illness.

Q:  What role did food play in helping your daughters recover, and how did you get this part of the puzzle diagnosed?

Food played a huge role in helping my daughters recover.  The puzzle pieces were being put together after Keri was found to have a rather severe intestinal malabsorption. Still, we did not know why and it actually, at first, fell through the cracks. After IgA and IgG food sensitivity tests, she modified her diet accordingly. By this time, she was interested in nutrition, dietetics, and gut health, and understood the connection between this and her asthma and environmental allergies that had plagued her her whole life.  She began to feel better in general and was even able to get off asthma and some allergy medications.

Once we knew this huge piece of the puzzle, Candace followed suit with testing, dietary changes, and healing her gut. The changes were remarkable. Only after getting off the foods causing issues and being reintroduced to them, was the severity of the symptoms they had caused truly appreciated. Soy causes bloating, intestinal disturbance, and brain fog (i.e. "cognitive symptoms"). Dairy causes severe mood swings (i.e "bipolar" symptoms) and gluten causes not just intestinal distress, but depressive symptoms.  In addition, antibiotics have a large negative effect on mood and cognition unless countered with an effort to keep up intestinal health and prevent candidal overgrowth.


Interestingly, Keri and her husband love to cook. Her husband follows your blog, printing off recipes from it!


Q:  One of your daughters was diagnosed with thyroid disease.  Can you talk about that, and what impact that had on her mental health?

Actually, both had a problem with thyroid hormones, although for Candace, it is her thyroid gland, and with Keri, it is the part of the brain (hypothalamus) regulating the pituitary and thyroid. For both, the change in their general health and well-being from increasing their thyroid levels were astounding.  Their GP wrote about his astonishment at the difference a small amount of thyroid hormone could make in a post on my blog.   I dedicated an appendix of my book to just this topic, and wrote up an in-depth discussion with extra resources, also on my blog.

Q:  
You mentioned Candace was on psychiatric drugs for a period of time, and was later able to be weaned off them.  What exactly was she taking, how did you wean her off, and does she have any lasting side effects?

Candace spent 13 years of her life on various cocktails of psychiatric medications -- mood stabilizers, antidepressants, anxiolytics, and antipsychotics -- for her intractable ultradian cycling bipolar symptoms. She does have lasting side-effects from the antipsychotics. She has a muscle tightness and movement disorder called tardive dyskinesia, and metabolic syndrome. She has the metabolic problem under control through diet and exercise. The tardive dyskinesia is slowly fading over the years. She was able to wean off them after her GP switched her thyroid hormone to a natural dessicated thyroid hormone having a broader range of hormones in it, and raised her level, she changed her diet and added nutritional supplements, addressed sleep issues, and addressed candidal overgrowth. I have been adding some entries on my blog about how she healed. She did wean safely off the medications under the care of both her psychiatrist and her GP. She had a lot of withdrawal symptoms. It wasn't easy.  It wasn't easy for either of them.

Q:  Why do you think that both of your daughters had similar health problems, even though your older daughter was adopted?  

They are half-sisters. Not only do they share their father's genes, but both my husband's family background, AND mine, are similar. BOTH of our mothers had these symptoms - both were diagnosed with schizophrenia. So Candace had one grandmother with "mental" symptoms, and Keri had both. But there is more to the story. In addition to genetics, there is the influence of what is called epigenetic factors. Keri wrote about that on my blog but it is more than just nutrition that can affect the functioning of our genes. There are many stressors, infections, and inflammatory processes that can affect us even before we are born. In both Candace's and Keri's case, their mothers were sick while pregnant with them. We both had inflammatory and immune problems while pregnant. 

Q:  Tell me about your daughters now, and are they totally independent?

Very few human beings are totally independent. I cannot say that I myself am. Keri and Candace are both responsible, functioning, working adult students living their lives in their own residences while going to school full-time, doing internships and practicums as required in their chosen fields. Keri is now married, and both hope to continue on with graduate studies. 

Q:  What is their diet like?

Keri eats a mostly whole foods, pesca-vegetarian diet.  Candace is conscientious about not over-doing the carbs. She eats frequent small meals so she does not become hypoglycemic. Both eat a diverse diet and love cooking.


Q:  You mentioned earlier your daughters couldn't eat gluten, dairy or soy.  Do they still have those restrictions and if so, do you expect they will be life-long?

My daughters still cannot eat gluten, dairy and soy.  I do suspect that it will be life-long.  I plan on soon posting about studies showing how casein (dairy) can affect the brain bringing on symptoms that can be mistaken for "mental" illness.

Q:  Do you have any dietary restrictions, and if so, why?

Actually, yes, I have more dietary restrictions than my kids. I did not find out some of my food problems until I started investigating them after my daughters got better. I did not have the psychiatric symptoms. Instead, I had chronic hives, inflammation, allergies and asthma. I'd had some bad allergic reactions to some foods and substances over the years. First it was honeydew and pineapple, then cantaloupe. The aspartame and saccharin were more difficult to discover since I avoided them until they became nearly ubiquitous in many products (saccharin in a medication landed me in the emergency room with a severe allergic reaction).  Then I got chronic urticaria (hives) for 8 years. Only after finding Keri's problem with gluten did I learn that this can sometimes be the only outward sign of Celiac or a gluten sensitivity. I underwent IgG food sensitivity testing and subsequently got off gluten, dairy, soy, eggs and some nuts. My hives disappeared and I was able to stop some of the allergy and asthma medications I was on. Some people ask me if not eating these foods is hard for me. My answer is NO!  They talk about "temptation" and "willpower" but it is nothing like that. They do not "tempt" me because I simply cannot eat them.  A piece of cake that is gluten, dairy, soy, egg free may tempt me, but not one that has any of those things in it - or one that I do not know what is in it.

Q:  Knowing what you do now, what advice would you give to new or prospective parents about warning signs or prevention of mental illness?

I'd tell them to read my book! And, pay attention to sleep hygiene, diet, gut health, play, activity, and stress. 

Q:  Why did you decide to write a book about your experience?

I wanted to share what I'd been through with other parents so they could learn from my mistakes as well as hard-won knowledge. I was also appalled that after so many years, the same things are happening to so many other children and families. I wanted to save others from having to "re-invent the wheel." Most of all, I wanted people to understand that although we may call illnesses affecting brain function, "mental illness" it doesn't necessarily mean the person's underlying problems causing those symptoms are "mental" - i.e. emotional or psychological. They are biological. It is just illness.  I want people to understand that medical resources and wrap-around care needs to be available to people exhibiting brain symptoms. The whole person needs to be treated.

I guess, what I want is nothing less than a paradigm shift in thinking and in treatment - by families, politicians, the medical community and all of society. Treat the whole person with meaningful collaborative, integrated care. 


Q:  What do you hope people will get from reading your book?

For those who already understand: Hope. Inspiration. Ideas. For those who don't understand - who are fortunate to not already know first-hand what "mental" illness, is:  Understanding of what severe "mental" illness is, what life is like for the families, how much families love their affected family members, and that this is not necessarily some emotional problem caused by abuse or trauma. We need to think outside the box and eliminate stigma about these illnesses.


I felt a special kinship with Jeanie during this interview.  Just like her daughter, my son spent years mired in a medical and mental health system that didn't connect the dots between body and brain.  Persistence eventually led us to a doctor who healed my son's anxiety by identifying and removing foods he was sensitive to, addressing thyroid and adrenal health, correcting nutrient deficiencies and balancing gut flora.  I agree with Jeanie that it's time to remove the stigma associated with mental illness and recognize that many kids would recover if the underlying physical causes of their illness were addressed.


This post has been shared with Fight Back Friday, Food on Fridays, and Monday Mania.

2 comments:

  1. That sounds like a really interesting book! It makes me really want to get off the drugs I'm on for my mental health issues and wonder how much of it was caused by diet? (I do know a large amount of it was due to emotional things, issues from the past, etc.) But even with my experiences with the health system, it does scare me how quickly some doctors assume that everything that happens in your body whether physical or mental is unrelated.

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  2. its a mooving story, and your strength to raise those two kids is amazing, i realy see your courage, let me tell you are a great mother.

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