I have written a Letter to the Editor to (the journal) Obesity and it was accepted for publication (link): https://www.researchgate.net/publication/329187211_Hypothalamic_Obesity_Treatment_Demands_Thinking_Outside_the_Box. I wrote about the need to "think outside-the-box" when it comes to treating hypothalamic obesity. I am hopeful that it will change the minds of some providers to become more willing to prescribe an off-label intervention like oxytocin to their HO patients. Please keep in mind that oxytocin for HO is considered "experimental" because dosing trials have not been done yet and it does not have FDA approval. One could say that the providers who prescribe oxytocin for HO are practicing "out-of-the-box."
Since I have started this blog and published our case report, I have been learning of a few more providers who are willing to prescribe. It is still very much a tiny minority of endocrinologists who appear to be willing to use oxytocin in this off-label manner, but it is a start! Like my updated list of research papers in post #8, I will update this list as I learn about more prescribing providers.
If you know a physician who is willing to prescribe oxytocin, please share her/his name, speciality, whether s/he treats children or adults, and location and I will add them to this list. Please note that I am not including them on this list as an endorsement; I am merely sharing them as providers who have been willing to prescribe oxytocin to their patients. Additionally, it goes without saying (but I will say it anyway as a caveat) that physicians will use their own clinical discretion on a case-by-case basis as to how they decide to treat their patients and just because they are listed here as providers who have prescribed oxytocin to a patient, does not mean that they will necessarily prescribe it to other patients.
Here's what I have so far:
USA
1. Dr. Theodore Friedman; adult endocrinology, Los Angeles, CA
2. Dr. Lewis Blevins; adult endocrinology, San Francisco, CA
3. Dr. Kurt Midyett; pedi and adult endocrinology, Overland, KS
4. Dr. Emily Gutierrez; pedi and adult functional and integrative medicine, Austin TX
5. Dr. Scott Moreland; pedi and adult psychiatry, Sugarland, TX
6. Dr. Justin Saya, Defy Medical Group Practice; adult endocrinology, Tampa, FL
7. Dr. Jennifer Miller; pedi endocrinology, Gainesville, FL
8. Dr. Nelly Mauras; pedi endocrinology, Jacksonville, FL
9. Dr. Brian Childers; pedi general practice, Douglas, GA
10. Dr. Timothy Petersen; adult endocrinology, Virginia Beach, VA
11. Dr. Rebecca Ryder; adult gynecology, Chesapeake, VA
12. Dr. Jose Alvarado; pedi general practice, Salisbury, MD
13. Dr. Andrew Scrogin; adult endocrinology, Auburn Hills, MI
14. Dr. Jennifer Abuzzahab, pedi endocrinology, St. Paul, MN
15. Dr. Tayma Shayna, pedi and adult primary care, Sugarland, TX
16. Dr. Charles Upchurch, adult endocrinology, Charlotte, NC
17. Dr. Christian Roth, pedi endocrinology, Seattle, WA
18. Dr. Kathryn Weaver, adolescents and adults, endocrinology, Seattle, WA
19. Dr Bethany Peterson, adult gynecology, Katy, TX
Australia
1. Dr. John Hart; adult functional and integrative medicine, Sydney, NSW
2. Dr. Rory Clifton-Bligh; adult endocrinology, Sydney, NSW
3. Dr. David Torpy; adult endocrinology, Adelaide, SA
4. Dr. Andrew Oliver; adult general practice, Lake Cathie, NSW
5. Dr Nick Davies; adult general practice, Gorokan, NSW
Canada
1. Dr. Jill Hamilton, pedi endocrinology, Toronto, ON
2. Dr. Alexander Chesover, pedi endocrinology, Toronto, ON
3. Dr. Munish Khosla; adult endocrinology, Calgary, AB
New Zealand
1. Dr. Helen Smith; pedi and adult holistic practice, Auckland
Sunday, November 11, 2018
Wednesday, October 24, 2018
117) Progress continues with Sasha and the case report
It's now been over two years since Sasha has been on oxytocin (+ naltrexone) and he is continuing to do well. His former lower carb eating plan has become increasingly lax... it seems that having a slice of toast with his eggs in the morning or rice at a Chinese restaurant or a pizza dinner has not made any impact on his weight. Relaxing the carb restrictions has made for a more mellow lifestyle in our family.
The most impressive improvements of late in Sasha have been around his ability to manage his weight even with his own spending money. Before oxytocin (and for the first 18 months into the experiment), we never dared let him have any spending money for fear he would spend it all on junk food and gain excess weight on it. At the end of his freshman academic year (May-June, 2018), he was given the privilege to carry money to school to spend it how he pleased. We knew that he was going to have to learn how to handle money and all the sugary temptations out in the world so we decided it was important for him to learn about it sooner than later. Well, as we predicted, he took full advantage of this new privilege and bought cookies at school, perhaps even every day. Not surprisingly, he gained weight from all the cookies he was eating. He liked the cookies, but not the weight gain. During the summer being away from the cookies at school helped him level out his weight and he even lost a few kilos on our active summer trip to Europe in late June/early July and throughout the summer.
Sasha started his sophomore year in September and so far, he has been able to exercise better control and discipline around his cookie buying habit. Somehow he has made decisions to refrain from the cookie buying and when I asked him how or why he doesn't buy cookies, he says, "because I don't want to gain the extra weight." Sasha is now 184 cm (6'0.5") tall and 77.3 kg (170 pounds) heavy and his BMI is 22.8. After losing the extra cookie weight in the summer, he has kept his weight in this range since August. I know that he is (aren't we all?) always at risk of succumbing to the seduction of cookies so it will be something that I hope he can manage with moderation. So far, he seems to be doing a great job and I am impressed.
I am also pleased to report that so far, our JCEM case report has been cited five times in other peer reviewed journals: https://scholar.google.com/scholar?um=1&ie=UTF-8&lr&cites=3043971027459005670. The review articles all point to the lack of effective treatment for HO and I am now trying to get a Letter to the Editor published in one of these journals to address this problem. Although I have already been turned down by Endocrine Reviews (they have a policy of only publishing Letters to the Editor that point out major errors in previously published materials), the kind and supportive note from the Editor-in-Chief has left me feeling encouraged about continuing to try with other journals. It is my intention to piggyback on our report and to share that my son has continued to reap the benefits of oxytocin and naltrexone to enjoy a normal relationship with food and a normal weight. I hope to convey my belief that the dearth of effective treatment options and the poor quality of life of HO sufferers begs for an open-minded approach to treating this challenging condition and that I hope more endocrinologists become willing to try more cutting edge approaches (such as oxytocin) with their HO patients.
The most impressive improvements of late in Sasha have been around his ability to manage his weight even with his own spending money. Before oxytocin (and for the first 18 months into the experiment), we never dared let him have any spending money for fear he would spend it all on junk food and gain excess weight on it. At the end of his freshman academic year (May-June, 2018), he was given the privilege to carry money to school to spend it how he pleased. We knew that he was going to have to learn how to handle money and all the sugary temptations out in the world so we decided it was important for him to learn about it sooner than later. Well, as we predicted, he took full advantage of this new privilege and bought cookies at school, perhaps even every day. Not surprisingly, he gained weight from all the cookies he was eating. He liked the cookies, but not the weight gain. During the summer being away from the cookies at school helped him level out his weight and he even lost a few kilos on our active summer trip to Europe in late June/early July and throughout the summer.
 |
| Photo of Sasha taken yesterday: Age 15: 6 feet, 1/2 inch tall, 170 pounds |
Sasha started his sophomore year in September and so far, he has been able to exercise better control and discipline around his cookie buying habit. Somehow he has made decisions to refrain from the cookie buying and when I asked him how or why he doesn't buy cookies, he says, "because I don't want to gain the extra weight." Sasha is now 184 cm (6'0.5") tall and 77.3 kg (170 pounds) heavy and his BMI is 22.8. After losing the extra cookie weight in the summer, he has kept his weight in this range since August. I know that he is (aren't we all?) always at risk of succumbing to the seduction of cookies so it will be something that I hope he can manage with moderation. So far, he seems to be doing a great job and I am impressed.
I am also pleased to report that so far, our JCEM case report has been cited five times in other peer reviewed journals: https://scholar.google.com/scholar?um=1&ie=UTF-8&lr&cites=3043971027459005670. The review articles all point to the lack of effective treatment for HO and I am now trying to get a Letter to the Editor published in one of these journals to address this problem. Although I have already been turned down by Endocrine Reviews (they have a policy of only publishing Letters to the Editor that point out major errors in previously published materials), the kind and supportive note from the Editor-in-Chief has left me feeling encouraged about continuing to try with other journals. It is my intention to piggyback on our report and to share that my son has continued to reap the benefits of oxytocin and naltrexone to enjoy a normal relationship with food and a normal weight. I hope to convey my belief that the dearth of effective treatment options and the poor quality of life of HO sufferers begs for an open-minded approach to treating this challenging condition and that I hope more endocrinologists become willing to try more cutting edge approaches (such as oxytocin) with their HO patients.
Wednesday, September 5, 2018
116) ACT for anxiety- tips for managing worry
It's funny...I have been writing in this blog for over two years on HO, oxytocin, and sometimes on my role as a special needs parent but I have not written much at all about mental health care despite my professional role as a clinical psychologist. I guess it didn't occur to me because mental health treatment was always thought to be my career job while Hope for HO was thought of as a forum for my role as a parent. For some reason, I recently saw a Facebook post from a very worried individual that reminded me that I might have some helpful info to share with those who are struggling with anxiety and stress.
I specialize in treating people with anxiety disorders and I have always enjoyed working with those who are anxious because I conceptualize anxiety as an "excess of caring"- therefore, anxious people are often the most earnest and caring people in the world. Think about it: if you didn't care about something or someone, you wouldn't feel anxious, right? We worry about the welfare of our loved ones because we care about them. We make our way quickly across the street when we see a car coming because we care about and prefer to avoid getting squished by an oncoming car. In other words, anxiety is a very normal and healthy response that signifies that we care about something.
So why does it feel so bad to be anxious if it's normal and signifies caring? I think the problem with anxiety arises when the worry or anxiety is not channeled to a constructive end because (1) you are worrying and struggling about something that is not within your control and/or (2) you are avoiding taking constructive steps to do something that is within your control and/or (3) you are taking steps to do something that is within your control but it doesn't agree with your set of values or is not effective.
According to the Serenity Prayer (a mantra used in 12-Step meetings):
"God, grant me the serenity to accept the things I cannot change, the courage to change the things that I can, and the wisdom to know the difference."
It's definitely the "wisdom to know the difference" that is the tricky part! So much time and energy is wasted trying to control what we can't control and so much agency is lost when we do not act on what is within our control. On the list of common things we try to control and wish we could control but can't: other people's behaviors, thoughts and feelings; the past; the future. Sometimes we are not even in control of our OWN behaviors (e,g.:accidents) or our OWN thoughts and feelings (e.g.:worries, other unhelpful thoughts).
Worrying about and trying to control things we can't control will only cause us to feel impotent and more anxious. In addition, anxious people struggle to have certainty in an uncertain world and this is also very distressing; in fact, the very act of insisting on having certainty (in an uncertain, inconsistent and imperfect world) is also another recipe for more anxiety and stress. What's really ironic to me is that many anxious people tend to have such a high intolerance of uncertainty that they end up making up the "end of the story" just to have a conclusion even if the conclusion is a terrible one! We've probably all done this and later realized that the apprehension and prediction we had about something in the unknown future ended up being so much worse that the actual outcome. In this situation, we used our energy to conjure up a terrible end of the story when we could have used that same energy on something else and perhaps saved ourselves a lot of mental anguish.
On the flip side, if our problems have concrete steps that can be taken but we do not take the steps to do something to address the problem, our problems will only be prolonged and exacerbated through this denial/avoidance.
What to do? There are several helpful psychotherapeutic approaches for handling distressing emotions such as anxiety including Cognitive Behavioral Therapy (CBT), Dialectical Behavioral Therapy (DBT) and Acceptance and Commitment Therapy (ACT). My personal favorite is Acceptance and Commitment Therapy (ACT). ACT is a therapy approach that combines the serenity of mindful acceptance with the practicality of behavioral activation and the wisdom of acting/living in accordance to one's values. Sometimes we are fortunate to have worrisome problems that are within our control to address. To address the problems within our control, we apply our available resources and follow through with an action plan. The problems not within our control are much harder to handle; in these cases, it is best to radically accept this fact and refocus our thoughts, feelings, and behaviors on something else that is within our control (valued commitments). Simply put, ACT can be broken down into this acronym: A= Accept (reality for what it is), C= Choose (to focus and live in accordance to one's values), T= Take action (on those valued commitments to live a meaningful life).
As mentioned above, even our own thoughts and feelings cannot always be controlled. In our frustration of not having control over our own thoughts and feelings (worrisome thoughts are good examples here), we end up judging ourselves, telling ourselves,"why can't I stop feeling and thinking this way", "snap out of it!" etc. Instead of struggling with our undesirable thoughts and feelings, we can accept that they are there and make space for them. It is important to note that acceptance DOES NOT mean approval. Acceptance means simply that you recognize reality for what it is, period. I accept that my son has very serious chronic medical conditions that may require our lifelong management. I don't like or approve of this fact... but I fully accept it.
ACT is often described with metaphors: if you are swimming in a lake with a bunch of beach balls and the beach balls are symbols of your undesirable thoughts, you can choose to use your energy to banish the balls from your view by trying to hold them down underwater (which requires a lot of effort) OR you can just leave them alone and let the balls float around you. Instead of focusing on the balls, you can choose to focus on other aspects of your lake experience (the sunshine, the temperature of the water, the company of friends, etc.). We may not be able to control the uncontrollable, but we CAN learn to have a more accepting attitude towards what is not within our control. This letting go is liberating because it frees us from the struggle to change the unchangeable and allows us to refocus our energies on our valued commitments. Refocusing on our values helps us live a life by design and not by default or at the whim of our passing emotions.
Ok, now that I've explained the theory, how would the ACT approach work when applied to a challenging situation common to a brain tumor survivor, for example? Let's take the example of a parent who worries (for good reason) about the health and welfare of her child who suffers from chronic medical conditions, including adrenal insufficiency. Adrenal insufficiency (AI) is a medical condition that requires a good degree of vigilance to manage since stress or illness can cause a life threatening situation (adrenal crisis) and lead to death if not handled with prompt and proper treatment. My son has AI so I understand the gravity of this disorder and I recognize that it is easy to worry about a person with AI...
What if he gets sick, has an adrenal crisis and dies?
What if he gets into a car accident and has an adrenal crisis?
What if he is without his Solu Cortef injection when he needs it?
What if he's alone and loses consciousness and can't call for help?
These kinds of worries probably cross the minds of the caregivers and of those who suffer from this condition. If we use the ACT approach, we would first accept what we cannot control: the fact that the person has AI, when an illness/stressful situation may strike, whether or not the ill person/others will be able to respond in a timely way to their illness, etc. We can then choose how we want to handle these facts based on our values: if we value having a certain active lifestyle with many activities, we can make choices to provide a life that supports these activities, even with the condition of AI. We would need to take action by ensuring that the needed medicines are available, key people are trained to deliver the medicine in case of an adrenal crisis, the person with AI has a medical alert tag worn at all times, the person with AI and others get trained in knowing the circumstances that would require stress dosing, etc. Even if all the boxes are checked and everything that is controllable is done, anxiety may still persist because life is full of uncertainties!
Different people with AI may choose to live differently with their condition, depending on their values. Person A who values safety/caution as #1 may choose to live a much more conservative life and perhaps choose to avoid activities that he considers too high risk for himself; person B with AI values adventurousness and may make very different choices. Person B may choose to take those risks because adventure, for her, contributes greatly to living a meaningful life. Person B knows the risks and feels the anxiety associated with these risks but still chooses to go on the adventure; in fact, person B may need to take her anxiety along on her adventure! There is no right or wrong lifestyle with AI, per se (provided that the AI person knows how to manage it and to stay alive). According to ACT, life is optimally lived when it is guided by one's values and not by one's default emotional reaction (often anxiety). The only exception to this rule of thumb is if safety happens to be one of the values that is held in high esteem. In this case, the person (like person A) who values safety is also living by his values by design.
When you are feeling anxious... breathe...ask yourself what is within your control and do something about those items and then remind yourself that you've done what you can that is within your control, let go of what is not within your control and focus on something else that can give you meaning in the moment. Here is a handout of the Worry Decision Tree that can help guide you to be more constructive with your worrying: https://www.getselfhelp.co.uk/docs/worrytree.pdf
If you are intrigued by the ACT approach and want to learn more about it, here is the website: https://contextualscience.org/act. Under the left side menu of ACT for the Public, you can find self- help resources, free audio exercises and free videos.
I specialize in treating people with anxiety disorders and I have always enjoyed working with those who are anxious because I conceptualize anxiety as an "excess of caring"- therefore, anxious people are often the most earnest and caring people in the world. Think about it: if you didn't care about something or someone, you wouldn't feel anxious, right? We worry about the welfare of our loved ones because we care about them. We make our way quickly across the street when we see a car coming because we care about and prefer to avoid getting squished by an oncoming car. In other words, anxiety is a very normal and healthy response that signifies that we care about something.
So why does it feel so bad to be anxious if it's normal and signifies caring? I think the problem with anxiety arises when the worry or anxiety is not channeled to a constructive end because (1) you are worrying and struggling about something that is not within your control and/or (2) you are avoiding taking constructive steps to do something that is within your control and/or (3) you are taking steps to do something that is within your control but it doesn't agree with your set of values or is not effective.
According to the Serenity Prayer (a mantra used in 12-Step meetings):
"God, grant me the serenity to accept the things I cannot change, the courage to change the things that I can, and the wisdom to know the difference."
It's definitely the "wisdom to know the difference" that is the tricky part! So much time and energy is wasted trying to control what we can't control and so much agency is lost when we do not act on what is within our control. On the list of common things we try to control and wish we could control but can't: other people's behaviors, thoughts and feelings; the past; the future. Sometimes we are not even in control of our OWN behaviors (e,g.:accidents) or our OWN thoughts and feelings (e.g.:worries, other unhelpful thoughts).
Worrying about and trying to control things we can't control will only cause us to feel impotent and more anxious. In addition, anxious people struggle to have certainty in an uncertain world and this is also very distressing; in fact, the very act of insisting on having certainty (in an uncertain, inconsistent and imperfect world) is also another recipe for more anxiety and stress. What's really ironic to me is that many anxious people tend to have such a high intolerance of uncertainty that they end up making up the "end of the story" just to have a conclusion even if the conclusion is a terrible one! We've probably all done this and later realized that the apprehension and prediction we had about something in the unknown future ended up being so much worse that the actual outcome. In this situation, we used our energy to conjure up a terrible end of the story when we could have used that same energy on something else and perhaps saved ourselves a lot of mental anguish.
On the flip side, if our problems have concrete steps that can be taken but we do not take the steps to do something to address the problem, our problems will only be prolonged and exacerbated through this denial/avoidance.
What to do? There are several helpful psychotherapeutic approaches for handling distressing emotions such as anxiety including Cognitive Behavioral Therapy (CBT), Dialectical Behavioral Therapy (DBT) and Acceptance and Commitment Therapy (ACT). My personal favorite is Acceptance and Commitment Therapy (ACT). ACT is a therapy approach that combines the serenity of mindful acceptance with the practicality of behavioral activation and the wisdom of acting/living in accordance to one's values. Sometimes we are fortunate to have worrisome problems that are within our control to address. To address the problems within our control, we apply our available resources and follow through with an action plan. The problems not within our control are much harder to handle; in these cases, it is best to radically accept this fact and refocus our thoughts, feelings, and behaviors on something else that is within our control (valued commitments). Simply put, ACT can be broken down into this acronym: A= Accept (reality for what it is), C= Choose (to focus and live in accordance to one's values), T= Take action (on those valued commitments to live a meaningful life).
As mentioned above, even our own thoughts and feelings cannot always be controlled. In our frustration of not having control over our own thoughts and feelings (worrisome thoughts are good examples here), we end up judging ourselves, telling ourselves,"why can't I stop feeling and thinking this way", "snap out of it!" etc. Instead of struggling with our undesirable thoughts and feelings, we can accept that they are there and make space for them. It is important to note that acceptance DOES NOT mean approval. Acceptance means simply that you recognize reality for what it is, period. I accept that my son has very serious chronic medical conditions that may require our lifelong management. I don't like or approve of this fact... but I fully accept it.
ACT is often described with metaphors: if you are swimming in a lake with a bunch of beach balls and the beach balls are symbols of your undesirable thoughts, you can choose to use your energy to banish the balls from your view by trying to hold them down underwater (which requires a lot of effort) OR you can just leave them alone and let the balls float around you. Instead of focusing on the balls, you can choose to focus on other aspects of your lake experience (the sunshine, the temperature of the water, the company of friends, etc.). We may not be able to control the uncontrollable, but we CAN learn to have a more accepting attitude towards what is not within our control. This letting go is liberating because it frees us from the struggle to change the unchangeable and allows us to refocus our energies on our valued commitments. Refocusing on our values helps us live a life by design and not by default or at the whim of our passing emotions.
Ok, now that I've explained the theory, how would the ACT approach work when applied to a challenging situation common to a brain tumor survivor, for example? Let's take the example of a parent who worries (for good reason) about the health and welfare of her child who suffers from chronic medical conditions, including adrenal insufficiency. Adrenal insufficiency (AI) is a medical condition that requires a good degree of vigilance to manage since stress or illness can cause a life threatening situation (adrenal crisis) and lead to death if not handled with prompt and proper treatment. My son has AI so I understand the gravity of this disorder and I recognize that it is easy to worry about a person with AI...
What if he gets sick, has an adrenal crisis and dies?
What if he gets into a car accident and has an adrenal crisis?
What if he is without his Solu Cortef injection when he needs it?
What if he's alone and loses consciousness and can't call for help?
These kinds of worries probably cross the minds of the caregivers and of those who suffer from this condition. If we use the ACT approach, we would first accept what we cannot control: the fact that the person has AI, when an illness/stressful situation may strike, whether or not the ill person/others will be able to respond in a timely way to their illness, etc. We can then choose how we want to handle these facts based on our values: if we value having a certain active lifestyle with many activities, we can make choices to provide a life that supports these activities, even with the condition of AI. We would need to take action by ensuring that the needed medicines are available, key people are trained to deliver the medicine in case of an adrenal crisis, the person with AI has a medical alert tag worn at all times, the person with AI and others get trained in knowing the circumstances that would require stress dosing, etc. Even if all the boxes are checked and everything that is controllable is done, anxiety may still persist because life is full of uncertainties!
Different people with AI may choose to live differently with their condition, depending on their values. Person A who values safety/caution as #1 may choose to live a much more conservative life and perhaps choose to avoid activities that he considers too high risk for himself; person B with AI values adventurousness and may make very different choices. Person B may choose to take those risks because adventure, for her, contributes greatly to living a meaningful life. Person B knows the risks and feels the anxiety associated with these risks but still chooses to go on the adventure; in fact, person B may need to take her anxiety along on her adventure! There is no right or wrong lifestyle with AI, per se (provided that the AI person knows how to manage it and to stay alive). According to ACT, life is optimally lived when it is guided by one's values and not by one's default emotional reaction (often anxiety). The only exception to this rule of thumb is if safety happens to be one of the values that is held in high esteem. In this case, the person (like person A) who values safety is also living by his values by design.
When you are feeling anxious... breathe...ask yourself what is within your control and do something about those items and then remind yourself that you've done what you can that is within your control, let go of what is not within your control and focus on something else that can give you meaning in the moment. Here is a handout of the Worry Decision Tree that can help guide you to be more constructive with your worrying: https://www.getselfhelp.co.uk/docs/worrytree.pdf
If you are intrigued by the ACT approach and want to learn more about it, here is the website: https://contextualscience.org/act. Under the left side menu of ACT for the Public, you can find self- help resources, free audio exercises and free videos.
Saturday, August 25, 2018
115) Good nutrition and a healthy lifestyle: a must for living with HO
Since the publication of our JCEM case report a few months ago, a handful of HO patients have been able to convince their physicians to try them on it and I've heard some happy stories of good outcomes. However, it's become apparent to me that for most sufferers of HO, getting a prescription for oxytocin is not possible now, or at least not easy. Medical research moves at its cumbersome pace, alas, and it feels impossibly slow for those who are suffering from syndromes lacking treatment. I am still hopeful that oxytocin will become more readily available once larger studies can demonstrate its effectiveness.
Although oxytocin (plus naltrexone) were the agents of change for my son by reducing and normalizing his appetite, increasing his metabolism, and reducing his weight, I also know that his health has been substantially helped by our food plan, a lower carbohydrate lifestyle.
Some history: after Sasha's craniotomy surgery to resect his large craniopharyngioma in 2011, he had alarmingly high lipids including triglycerides (TGs) which were 7,300. After fasting for a couple of days, the TGs dropped to 1,400. He was gaining weight quickly and he had an obvious intense and constant appetite. Unfortunately (unbeknownst to us at the time), we were given (bad) nutritional advice by a team of nutritionists and physicians. They advised that Sasha should eat a low calorie, low fat, low sugar diet. For the fat restriction, they wanted him to eat LESS THAN 20 GRAMS of fat a day. They warned us that his lipid profile and obesity put him at risk for pancreatitis, fatty liver, etc. Well, for over three years, we kept his fats under 20 grams a day and it was awful. We called his diet the "low fun" diet. If you can't eat fat or sugar, what's left? Well, he was allowed to eat low fat proteins so he ate egg whites and a lot of turkey breast (so much so, he prefers to avoid turkey now, lol). Strangely, we weren't told he couldn't have other carbohydrates so we ended up giving him vegetables, of course, but we also fed him crackers, pretzels, pasta, rice, etc. Well, after eating in this manner, wouldn't you know it- we continued to struggle to keep his TGs under 500 even though he was eating almost no fat. He was still obese and he tended to fall asleep frequently during the day. Although we locked up the kitchen and did our best to supervise him closely at home and at school, he continued to steal food whenever he had the chance.
In 2015, I pushed our health plan to refer us to one the world's experts in hypothalamic obesity, Dr. Robert Lustig. Dr. Lustig was working at University of California in San Francisco (UCSF) hospital as a pediatric endocrinologist and had written extensively on HO. It was from Dr. Lustig that I learned about the term "hyperinsulin secreter" and was advised that Sasha radically change his diet to a low carbohydrate plan and that we could introduce fats back into his diet. I did as instructed and noticed improvements in Sasha- his lipid panel improved and he lost some weight for the first time. He continued to attempt to steal and stash food, however, and this prompted us to try oxytocin (and the rest is history, they say!)
Thanks to our lower carb lifestyle and after adding oxytocin, Sasha is at a healthy normal weight, his metabolic health is good (including his lipid panel), he no longer hypersecretes insulin (as evidenced by his last glucose tolerance -with insulin- test and his lack of sleepiness after eating), and we no longer live with a locked kitchen. Since returning from a holiday in Europe after we saw that he could tolerate more carbs and still lose weight, we are more liberal with him these days and allow some higher carb foods (e.g.: pasta) on occasion; however, we still stick to eating whole foods and eat as little processed foods as possible. We also still strive for healthy fats and high fiber in our foods and continue to be mindful of carbs. The entire family eats in this fashion so Sasha feels supported and so that there is uniformity in our family's lifestyle...unless you count the times I "cheat" when I go out to lunch with my friends : )
All of this is to say that I am excited to share some news about an upcoming book, Hungry for Solutions, by Marci Serota, Registered Dietician Nutritionist. In her book, Marci shares her story about her own son (also a craniopharyngioma survivor with HO) and how he successfully battled HO and hyperphagia with her nutritional and lifestyle plan. Although I learned about the lower carb lifestyle from Dr. Lustig, I have had the privilege to preview Marci's book and agree wholeheartedly with her nutritional guidance and the hopeful message it sends: even one of the most pernicious forms of childhood obesity can be tamed with healthy eating. Marci's book is coming out in November, 2018 and if you are interested, you may order it in advance and at a discount through her website: https://cranionutrition.com/. Check it out also for recipe ideas, foods to avoid, how to read a nutritional label, and other helpful topics!
Although oxytocin (plus naltrexone) were the agents of change for my son by reducing and normalizing his appetite, increasing his metabolism, and reducing his weight, I also know that his health has been substantially helped by our food plan, a lower carbohydrate lifestyle.
Some history: after Sasha's craniotomy surgery to resect his large craniopharyngioma in 2011, he had alarmingly high lipids including triglycerides (TGs) which were 7,300. After fasting for a couple of days, the TGs dropped to 1,400. He was gaining weight quickly and he had an obvious intense and constant appetite. Unfortunately (unbeknownst to us at the time), we were given (bad) nutritional advice by a team of nutritionists and physicians. They advised that Sasha should eat a low calorie, low fat, low sugar diet. For the fat restriction, they wanted him to eat LESS THAN 20 GRAMS of fat a day. They warned us that his lipid profile and obesity put him at risk for pancreatitis, fatty liver, etc. Well, for over three years, we kept his fats under 20 grams a day and it was awful. We called his diet the "low fun" diet. If you can't eat fat or sugar, what's left? Well, he was allowed to eat low fat proteins so he ate egg whites and a lot of turkey breast (so much so, he prefers to avoid turkey now, lol). Strangely, we weren't told he couldn't have other carbohydrates so we ended up giving him vegetables, of course, but we also fed him crackers, pretzels, pasta, rice, etc. Well, after eating in this manner, wouldn't you know it- we continued to struggle to keep his TGs under 500 even though he was eating almost no fat. He was still obese and he tended to fall asleep frequently during the day. Although we locked up the kitchen and did our best to supervise him closely at home and at school, he continued to steal food whenever he had the chance.
In 2015, I pushed our health plan to refer us to one the world's experts in hypothalamic obesity, Dr. Robert Lustig. Dr. Lustig was working at University of California in San Francisco (UCSF) hospital as a pediatric endocrinologist and had written extensively on HO. It was from Dr. Lustig that I learned about the term "hyperinsulin secreter" and was advised that Sasha radically change his diet to a low carbohydrate plan and that we could introduce fats back into his diet. I did as instructed and noticed improvements in Sasha- his lipid panel improved and he lost some weight for the first time. He continued to attempt to steal and stash food, however, and this prompted us to try oxytocin (and the rest is history, they say!)
 |
| Sasha is a fan of kale and isn't afraid to advertise it! |
Thanks to our lower carb lifestyle and after adding oxytocin, Sasha is at a healthy normal weight, his metabolic health is good (including his lipid panel), he no longer hypersecretes insulin (as evidenced by his last glucose tolerance -with insulin- test and his lack of sleepiness after eating), and we no longer live with a locked kitchen. Since returning from a holiday in Europe after we saw that he could tolerate more carbs and still lose weight, we are more liberal with him these days and allow some higher carb foods (e.g.: pasta) on occasion; however, we still stick to eating whole foods and eat as little processed foods as possible. We also still strive for healthy fats and high fiber in our foods and continue to be mindful of carbs. The entire family eats in this fashion so Sasha feels supported and so that there is uniformity in our family's lifestyle...unless you count the times I "cheat" when I go out to lunch with my friends : )
All of this is to say that I am excited to share some news about an upcoming book, Hungry for Solutions, by Marci Serota, Registered Dietician Nutritionist. In her book, Marci shares her story about her own son (also a craniopharyngioma survivor with HO) and how he successfully battled HO and hyperphagia with her nutritional and lifestyle plan. Although I learned about the lower carb lifestyle from Dr. Lustig, I have had the privilege to preview Marci's book and agree wholeheartedly with her nutritional guidance and the hopeful message it sends: even one of the most pernicious forms of childhood obesity can be tamed with healthy eating. Marci's book is coming out in November, 2018 and if you are interested, you may order it in advance and at a discount through her website: https://cranionutrition.com/. Check it out also for recipe ideas, foods to avoid, how to read a nutritional label, and other helpful topics!
Friday, August 10, 2018
114) Almost-end-of-summer update- holding steady and doing well
We have been back from our European holiday for over a month and in my last post, I wondered if returning back to our normal lifestyle would change anything about his weight. While there, although we ate foods higher in carbs and sugar, we were also walking 12 km a day on average. Lo and behold, his weight has wobbled up and down a little bit since returning from the trip but he is basically holding steady. His weight at the end of the trip (July 8) was as much as 4 kilos lighter than what he weighed at the end of the school year (mid-June). Today, his weight is about the same (80.8 kg) as what he weighed when I last posted on July 11, 2018.
His oxytocin regimen remains at 6 iu/day. When his weight was climbing up in May and June, I regret that I did not check his other lab values (especially thyroid) because I might have discovered that his T4 levels were low. Indeed, when I finally got his free T4 levels checked in early June, they were within range but on the lower end. We know that he functions better when the levels are on the higher end so we have since raised his T4 by an extra 25 mcg/day and now his levels are on the high end. Perhaps some of his weight loss and subsequent weight stabilization can be due in part to more optimal thyroid levels.
Another interesting fact is that since he seemed to tolerate eating foods higher in carbohydrates while in Europe and even lost weight, we have been more liberal with carbohydrates this summer. We've been enjoying an occasional pasta (using a higher fiber wheat pasta), sandwiches, and eating quite a bit of fresh summer fruit (we have a peach tree and blackberries in our backyard). Still, his weight has not been rising! His walking has greatly decreased from what we did in Europe but he still manages to walk at least a couple of km every day; on the weekends, we all go to the gym and for three days a week, he gets in about 5 km per day, thanks to our dear surrogate grandmother/friend and her dogs (thanks, Marla!!)
I suppose I am reporting good news overall...
1) his hormone levels appear to be optimal now;
2) he is enjoying a diet that is approaching a more "normal" lifestyle (less carb restriction);
3) he is getting some pretty decent walking exercise half the days of the week and going to the gym on the weekends;
4) his oxytocin dosing has remained the same as always;
5) his appetite is normal; he continues to get excited about getting the occasional sweets/desserts but (as far as we know), he hasn't engaged in any sneaking or stealing of these foods during the camps he has attended for the last 4 weeks;
6) he is earning money for his good behavior (no food related "disasters") and his handling of his money appears to be working since he is free to buy snacks from vending machines and stores (close proximity to his summer camps); and despite his access to money and junk food...
7) he is somehow keeping his weight at the same level it was when he returned from Europe.
Besides all this food/oxytocin/weight business, I am glad to share that he has been enjoying a great summer break- he has been enjoying two main summer camps- doing computer coding (robot programming) and performing in a rock band (vocals and guitar). In a digital recording rock band camp, he recorded this song (he sings in a duet with a female vocalist) and I'm proud of the beautiful music these kids made. The song is Stop This Train by John Mayer but the kids (all middle school and high school kids) arranged and played the music in this recording.
Listen to the very poignant lyrics, beautiful harmonies, and enjoy! Happy (rest-of-your) summer!
https://drive.google.com/file/d/1INcqwSrxa1Xvq7pPkBo4fihnyqfAJpR8/view?usp=sharing
His oxytocin regimen remains at 6 iu/day. When his weight was climbing up in May and June, I regret that I did not check his other lab values (especially thyroid) because I might have discovered that his T4 levels were low. Indeed, when I finally got his free T4 levels checked in early June, they were within range but on the lower end. We know that he functions better when the levels are on the higher end so we have since raised his T4 by an extra 25 mcg/day and now his levels are on the high end. Perhaps some of his weight loss and subsequent weight stabilization can be due in part to more optimal thyroid levels.
Another interesting fact is that since he seemed to tolerate eating foods higher in carbohydrates while in Europe and even lost weight, we have been more liberal with carbohydrates this summer. We've been enjoying an occasional pasta (using a higher fiber wheat pasta), sandwiches, and eating quite a bit of fresh summer fruit (we have a peach tree and blackberries in our backyard). Still, his weight has not been rising! His walking has greatly decreased from what we did in Europe but he still manages to walk at least a couple of km every day; on the weekends, we all go to the gym and for three days a week, he gets in about 5 km per day, thanks to our dear surrogate grandmother/friend and her dogs (thanks, Marla!!)
I suppose I am reporting good news overall...
1) his hormone levels appear to be optimal now;
2) he is enjoying a diet that is approaching a more "normal" lifestyle (less carb restriction);
3) he is getting some pretty decent walking exercise half the days of the week and going to the gym on the weekends;
4) his oxytocin dosing has remained the same as always;
5) his appetite is normal; he continues to get excited about getting the occasional sweets/desserts but (as far as we know), he hasn't engaged in any sneaking or stealing of these foods during the camps he has attended for the last 4 weeks;
6) he is earning money for his good behavior (no food related "disasters") and his handling of his money appears to be working since he is free to buy snacks from vending machines and stores (close proximity to his summer camps); and despite his access to money and junk food...
7) he is somehow keeping his weight at the same level it was when he returned from Europe.
Besides all this food/oxytocin/weight business, I am glad to share that he has been enjoying a great summer break- he has been enjoying two main summer camps- doing computer coding (robot programming) and performing in a rock band (vocals and guitar). In a digital recording rock band camp, he recorded this song (he sings in a duet with a female vocalist) and I'm proud of the beautiful music these kids made. The song is Stop This Train by John Mayer but the kids (all middle school and high school kids) arranged and played the music in this recording.
Listen to the very poignant lyrics, beautiful harmonies, and enjoy! Happy (rest-of-your) summer!
https://drive.google.com/file/d/1INcqwSrxa1Xvq7pPkBo4fihnyqfAJpR8/view?usp=sharing
Wednesday, July 11, 2018
113) The "vacation diet" does it again! What caused his weight loss?
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| Sasha and his personal pizza on our last day in Milano- it has a very thin crust but yes, it's big and yes, he ate the whole thing (minus one piece he gave to his dad)! How does someone with HO eat this much and still lose weight?? |
We just returned from a 2 week holiday in Italy and Switzerland. I could tell by the timing of the holiday that Sasha's oxytocin would expire in the middle of the trip and I didn't want to order more in advance of our trip. I decided that he would just either use expired oxytocin or he would stop using it and it would be a convenient time to do another week-long drug holiday from oxytocin (our second one; the first one occurred in April after he his weight started climbing rapidly). We ended up using expired oxytocin (expired on June 28) until about July 4 and then we just stopped it.
We also decided that we would be less restrictive about food during our trip- usually, we follow a low~ish carb lifestyle and avoid eating processed sugary foods and eat a minimal to modest amount of breads, pastas, starchy vegetables, rice, etc. We knew that we would be walking a lot and hoped that the extra exercise would help compensate for the high carb, fat, and calories that we knew we would be consuming.
When we started the trip on June 27, Sasha weighed 84.5 kg (184 cm tall). After two weeks on our trip, Sasha today (July 11) weighs 81.6 kg. This is not "water weight" because we calculate his weight based on Na level at 140 (the average WNL level for sodium). On our trip, we enjoyed three full meals a day and minimal snacking. We loved the delicious cuisine of Italy (for example, pizza, pasta, breads, gelato) and Switzerland (Rösti, sausages, cheese, chocolate). We didn't go crazy but we definitely ate foods that we would not have eaten at home. Our rule was to limit our dessert eating to only once a day (a chocolate or gelato a day keeps the doctor away!)
We also walked all day long, averaging 12 km (7 miles) per day. I was very pleased that Sasha was able to tolerate the heat (he wore a cooling vest and carried around a spray bottle) and was able to keep up with the vigorous pace of our tourist itinerary. Some families take vacations to rest and relax; we are definitely not that kind of family!
Losing nearly 3 kg (6.5 pounds) is a significant amount of weight to lose in a two week period of time in general and even more significant considering he was eating high carbohydrate, high fat, and high calorie foods through Italy and Switzerland. As far as the rest of us, I can't comment with any precision since I did not pay attention to my weight before or after the trip but I don't believe I lost or gained weight as my clothes are fitting me the same now as they did before the trip.
It's hard to say what exactly caused the weight loss but here are my speculations:
1. The amount of daily walking exercise helped Sasha burn the calories he was ingesting to help him lose weight.
2. In spite of eating higher carb foods, we did not snack much on the trip. At home, Sasha has free access to the snack cabinet and I believe he indulges in more regular snacking (usually nuts, cheese, salami).
3. Pausing the oxytocin may have also contributed to the weight loss. It's possible that chronic oxytocin treatment is optimized when there are drug holidays so that the receptors have a chance to "rest".
4. We increased his T4 just before leaving for vacation so that his T4 would be in a more optimal (top third) range since he was gaining weight and his T4 came in low at his last check up.
He just restarted a new batch of 6 iu oxytocin today so we will see what happens going forward. Of course, it will be difficult to know if any weight or appetite changes we detect now will be due to adding back oxytocin, exercising less than we did while on vacation, resuming his usual snacking, or some other factor that I have not yet considered. For now, we will resume our usual regimen (6 iu of oxytocin/day) and lowish carb food plan. We believe that Sasha is at a healthy weight and that weight loss is not the goal; rather, we would like to see him maintain his current weight by increasing his exercise and perhaps even be able to enjoy more pasta and pizza provided that he sticks to a healthy weight.
Sunday, June 3, 2018
112) Dear Family and Friends: This is how I do it.
I've written a few posts by now on the challenges of special needs parenting. Most of the time, I think, I write while keeping in mind that my readers (you) are "insiders" in the world of brain tumors, hypothalamic obesity, PWS, hypopituitarism, etc. In my last post, I wrote a letter addressed to doctor parents and today, I write a letter addressed to family and friends who are not "insiders."
Dear Family and Friends,
"I don't know how you do it" is a common expression I often hear from you regarding your incredulous admiration for what I do to keep my child optimally healthy and happy. Of course, you can't possibly know "how I do it" or what I even "do" because you haven't had to live through our particular life circumstances. However, I'm pretty certain that if you had to do it, you would; it's not heroism, it's just parenting under duress. Chronic duress.
Although on the face of it, "I don't know how you do it" is a sentiment that expresses your marvel of the feat of our parenting responsibilities, I find that it is also a way of putting emotional distance between your experience and mine; my problems require certain extraordinary parenting measures and yours do not. This comment about the unthinkability of our ordeal is probably because you'd rather keep the problem off your mind and thank GOD (you think), you can. I don't blame you at all. Before my child's diagnosis, I would have felt the same way. However, despite what I do, I don't feel like a superhero when I'm parenting...I don't want to be admired and I don't want to be pitied but it would be really helpful if you could please read this to try to understand "what I do and how I do it."
As you can probably guess, being a special needs parent is stressful and tiring- the tasks involved in keeping my child alive and out of the hospital, for example, require a great deal of time and energy. In our case, much of our time is spent trying to keep my child's body in homeostasis (thanks to a damaged hypothalamus). Having adipsic diabetes insipidus is probably the most stressful thing we've had to manage, besides the HO and hyperphagia. Weighing him frequently throughout the day, checking his blood for electrolyte balance, and nagging him to drink water while being mindful of his urine output is a task that requires constant vigilance, lest his electrolytes go out of whack (which they can and do many times a day). We have had this experience just last week as he had to go to the emergency room by ambulance and stay overnight at the PICU for rehydration and electrolyte rebalancing.
To illustrate the challenges of managing adipsic DI, the best metaphor I have for this experience is this:
Imagine your child's entire life is lived on a circus tightrope very high in the air without a net. Imagine your child has a condition that makes it difficult for him to stay awake and alert on his own (yes, even with his own alarm clocks). Imagine you are on the ground in the circus ring, constantly shouting up at your child to wake him from his slumber so he can keep his balance and not fall to his death. Your voice is hoarse and you are tired of shouting at him to stay awake but his tightrope is long and he has to walk it in his sleepy condition for the rest of his life. You wish you could go up there with him to keep him awake and safe but there is no room on the tightrope for you and you can't leave your post on the ground because you need to be there to catch him if he falls. Imagine the tightrope is in an outdoor arena and all of the above needs to be accomplished irrespective of the (foul) weather conditions that are bound to occur.
The high maintenance responsibilities seem never ending, and for us, adipsic DI management is but one of the many things we have to do. The list goes on and on but I won't belabor this point anymore. Trying to keep my kid awake on that tightrope is enough to explain "what I do."
Besides the obvious exhaustion and stress of doing this crazy tightrope act, being a special needs parent is also lonely. As the years pass, I notice his typical peers growing up and becoming more independent, able to do so because they are not living a life up on this tightrope with their chronic medical conditions. While I don't want to censor you from talking with me about your typically developing child, I must admit that it isn't always easy to hear from you. When you are complaining about your child's (normal) problems with his friends, I am envious because I wish I could say my kid had friends. When you express your worries about your child's sports injury and how it will affect his season, I am filled with longing because your child was able to play the sports to injure himself in the first place. Even reading the high school newsletter and seeing the announcements about job fairs, travel opportunities, and college applications pains me because I cannot help but think about what my child may never do because of his health conditions and disabilities. Don't get me wrong- I still have hopes and dreams for my child; it's just that the hopes and dreams for a full life are much, much harder to realize up there on that tightrope, you see. Even witnessing ordinary life for a typical teen can be anguishing. The other day, I attended a variety show that was put on by my kid's high school choir program. It was a bittersweet experience to watch the high school kids bonding over their music and friendship. While my kid was physically present and participating in the show, I could see that he was an outsider to this normal teenage experience. The joys of friendship and fun that I witnessed at the performance ended up making me feel that much more sadness for seeing what he was missing out on in life.
Again, I don't want you to censor yourself around me because I still want to have open and honest communications in our friendship. I guess I have to admit that I also need to uphold my end of the bargain because I've had to limit my communications with you somewhat in order to protect myself from the sad feelings that arise when I hear about or see your kid's normal life. While I am glad for you to hear (good) news about your child, sometimes it makes me sad for my child. For obvious reasons, I can't easily tell you that I feel sad when I see that your kid is healthy, happy and successful. As you can see, this dilemma can leave me feeling stuck and lonely.
To my inner circle of family and friends, you are there by my side and I greatly appreciate it. Thank you for being there for me, for listening, for spending time with our family and with my kid, and for giving me a break when I need it. Despite the problems we have, I do my best to rally and to most, I probably appear to be normal, perhaps even "high functioning." My apparent normalcy does come at a cost, however, as it is a struggle to keep up the energy to maintain it and I often feel like I am failing those of you if I haven't reciprocated a dinner invitation that I owe you, for example. Sometimes I don't call as often as I would like to because I am feeling down or anxious and I don't want to be a bummer or burden you with my never ending problems.
To those of you in the more outer circles of my community, please excuse my absenteeism. I so wish I had the energy and time and enthusiasm to join you for all the fun social outings I used to do with you. My retreat was necessitated because of my kid's high maintenance issues; after almost 7 years, they aren't letting up and I don't know if they ever will. If I seem unavailable or less friendly than I used to be, there's no need to take it personally. I don't mean to be so socially withdrawn and I hope what I've written here can help explain myself to you. I suppose this is why I have largely turned to a community of other special needs parents and others who are going through the same health challenges because I don't have to explain myself with them and it is just easier than pretending to live a normal life or explaining and having to hear "I don't know how you do it," over and over again.
If you are still engaged after reading this, you may be wondering if there is anything you can do to be supportive or helpful. It is my hope that reading this will help you better understand my feelings and experiences as a special needs parent. I don't expect you to understand as an insider understands but I hope that what I've written here will allow you to come a little closer to me and keep me company at ringside while I coach my kid across that tightrope of his life.
Dear Family and Friends,
"I don't know how you do it" is a common expression I often hear from you regarding your incredulous admiration for what I do to keep my child optimally healthy and happy. Of course, you can't possibly know "how I do it" or what I even "do" because you haven't had to live through our particular life circumstances. However, I'm pretty certain that if you had to do it, you would; it's not heroism, it's just parenting under duress. Chronic duress.
Although on the face of it, "I don't know how you do it" is a sentiment that expresses your marvel of the feat of our parenting responsibilities, I find that it is also a way of putting emotional distance between your experience and mine; my problems require certain extraordinary parenting measures and yours do not. This comment about the unthinkability of our ordeal is probably because you'd rather keep the problem off your mind and thank GOD (you think), you can. I don't blame you at all. Before my child's diagnosis, I would have felt the same way. However, despite what I do, I don't feel like a superhero when I'm parenting...I don't want to be admired and I don't want to be pitied but it would be really helpful if you could please read this to try to understand "what I do and how I do it."
As you can probably guess, being a special needs parent is stressful and tiring- the tasks involved in keeping my child alive and out of the hospital, for example, require a great deal of time and energy. In our case, much of our time is spent trying to keep my child's body in homeostasis (thanks to a damaged hypothalamus). Having adipsic diabetes insipidus is probably the most stressful thing we've had to manage, besides the HO and hyperphagia. Weighing him frequently throughout the day, checking his blood for electrolyte balance, and nagging him to drink water while being mindful of his urine output is a task that requires constant vigilance, lest his electrolytes go out of whack (which they can and do many times a day). We have had this experience just last week as he had to go to the emergency room by ambulance and stay overnight at the PICU for rehydration and electrolyte rebalancing.
To illustrate the challenges of managing adipsic DI, the best metaphor I have for this experience is this:
Imagine your child's entire life is lived on a circus tightrope very high in the air without a net. Imagine your child has a condition that makes it difficult for him to stay awake and alert on his own (yes, even with his own alarm clocks). Imagine you are on the ground in the circus ring, constantly shouting up at your child to wake him from his slumber so he can keep his balance and not fall to his death. Your voice is hoarse and you are tired of shouting at him to stay awake but his tightrope is long and he has to walk it in his sleepy condition for the rest of his life. You wish you could go up there with him to keep him awake and safe but there is no room on the tightrope for you and you can't leave your post on the ground because you need to be there to catch him if he falls. Imagine the tightrope is in an outdoor arena and all of the above needs to be accomplished irrespective of the (foul) weather conditions that are bound to occur.
The high maintenance responsibilities seem never ending, and for us, adipsic DI management is but one of the many things we have to do. The list goes on and on but I won't belabor this point anymore. Trying to keep my kid awake on that tightrope is enough to explain "what I do."
Besides the obvious exhaustion and stress of doing this crazy tightrope act, being a special needs parent is also lonely. As the years pass, I notice his typical peers growing up and becoming more independent, able to do so because they are not living a life up on this tightrope with their chronic medical conditions. While I don't want to censor you from talking with me about your typically developing child, I must admit that it isn't always easy to hear from you. When you are complaining about your child's (normal) problems with his friends, I am envious because I wish I could say my kid had friends. When you express your worries about your child's sports injury and how it will affect his season, I am filled with longing because your child was able to play the sports to injure himself in the first place. Even reading the high school newsletter and seeing the announcements about job fairs, travel opportunities, and college applications pains me because I cannot help but think about what my child may never do because of his health conditions and disabilities. Don't get me wrong- I still have hopes and dreams for my child; it's just that the hopes and dreams for a full life are much, much harder to realize up there on that tightrope, you see. Even witnessing ordinary life for a typical teen can be anguishing. The other day, I attended a variety show that was put on by my kid's high school choir program. It was a bittersweet experience to watch the high school kids bonding over their music and friendship. While my kid was physically present and participating in the show, I could see that he was an outsider to this normal teenage experience. The joys of friendship and fun that I witnessed at the performance ended up making me feel that much more sadness for seeing what he was missing out on in life.
Again, I don't want you to censor yourself around me because I still want to have open and honest communications in our friendship. I guess I have to admit that I also need to uphold my end of the bargain because I've had to limit my communications with you somewhat in order to protect myself from the sad feelings that arise when I hear about or see your kid's normal life. While I am glad for you to hear (good) news about your child, sometimes it makes me sad for my child. For obvious reasons, I can't easily tell you that I feel sad when I see that your kid is healthy, happy and successful. As you can see, this dilemma can leave me feeling stuck and lonely.
To my inner circle of family and friends, you are there by my side and I greatly appreciate it. Thank you for being there for me, for listening, for spending time with our family and with my kid, and for giving me a break when I need it. Despite the problems we have, I do my best to rally and to most, I probably appear to be normal, perhaps even "high functioning." My apparent normalcy does come at a cost, however, as it is a struggle to keep up the energy to maintain it and I often feel like I am failing those of you if I haven't reciprocated a dinner invitation that I owe you, for example. Sometimes I don't call as often as I would like to because I am feeling down or anxious and I don't want to be a bummer or burden you with my never ending problems.
To those of you in the more outer circles of my community, please excuse my absenteeism. I so wish I had the energy and time and enthusiasm to join you for all the fun social outings I used to do with you. My retreat was necessitated because of my kid's high maintenance issues; after almost 7 years, they aren't letting up and I don't know if they ever will. If I seem unavailable or less friendly than I used to be, there's no need to take it personally. I don't mean to be so socially withdrawn and I hope what I've written here can help explain myself to you. I suppose this is why I have largely turned to a community of other special needs parents and others who are going through the same health challenges because I don't have to explain myself with them and it is just easier than pretending to live a normal life or explaining and having to hear "I don't know how you do it," over and over again.
If you are still engaged after reading this, you may be wondering if there is anything you can do to be supportive or helpful. It is my hope that reading this will help you better understand my feelings and experiences as a special needs parent. I don't expect you to understand as an insider understands but I hope that what I've written here will allow you to come a little closer to me and keep me company at ringside while I coach my kid across that tightrope of his life.
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