Eczema and its connection with books, music and meditation

It has now been almost three years that I have been writing about our family’s experiences of dealing with eczema. These are experiences that have shaped our life and changed it irrevocably as most chronic conditions inevitably do. Most of the times we do not have a choice about these changes and we can only let events unfold themselves as they occur. But we do have a choice as far as our responses are concerned. We can choose to accept these changes and deal with them or we can choose to rail at them and complain about them. While it is far easier to do the latter we chose the former path and we are only now seeing the positive outcomes associated with them. But dealing with any kind of lifestyle change is not easy, especially ones which are associated with health conditions.

Stress, anxiety and self confidence

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Since I am my daughter’s primary caregiver, I spend a lot of time focusing on her bathing and moisturizing routines, two crucial aspects of managing eczema. But I also spend an equal amount of time or even more on something that we don’t get to see. The emotional scars that are left behind in a child struggling to cope with a severe health condition day after day, month after month with no end in sight. The emotional pain of living with eczema, the erosion in self confidence linked to the constant scratching and physical rashes on the body, the frustrations which can build up due to the restrictions in terms of activities and diet to name just a few. The stress and and anxiety that a child experiences if not managed properly with due care and attention, can lead to many more complex issues once the child becomes an adult. And even though we do not realise it always, a child has his or her own share of stressors which may seem trivial to us but are actually very real and important to them. This is not something we can take lightly or ignore, this is something akin to a garden where the flowers and the trees have to be tended to and given a great deal of attention while they are still growing.

I had written a post earlier about how you can help your child cope with eczema and you can read about it at https://eczema-anindianperspective.com/2013/11/19/beauty-is-not-just-skin-deep-helping-your-child-cope-with-eczema/

This post takes that topic even further based on our own experiences since then and expands on that topic.  For us this aspect of managing eczema became even more important after our daughter’s catastrophic reaction to her medication’s side effect in 2013. She battled a life threatening infection and was hospitalized for a month. I have written about it in my post https://eczema-anindianperspective.com/2013/10/27/the-tough-get-going-part-2/

She also lost all her hair in a few days and had a tough time in school once she resumed a couple of months later. Her school discussed with and sensitised her classmates about her condition and sudden change in appearance including lack of hair.  But there were a few children who would tease her about her lack of hair and her appearance. Even outside school she became the subject of many stares and comments due to her physical appearance. It became painfully obvious that there would always be some people who were not sensitive enough to other’s sufferings and I would not be able to protect my daughter from such people the way I would have liked to. I decided then and there that I would ensure that I would teach my daughter to find the strength that was already within her and teach her ways to cope with such people. I would try and make sure that she would not lose her self confidence and self respect and that she would know that she had a choice. A choice as to how she would react to such people, a choice as to how to deal with difficult situations and a choice to be happy.

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It is really empowering to learn that while we cannot control what other people think and say we have a choice as far as our response is concerned. The stress associated with living with any chronic condition like eczema is usually very high and very real and I knew I had to figure out ways to manage it. Books, music and meditation became my tools to achieve this. Of course, all this did not happen overnight. It has taken a lot of research, time and effort to figure out what worked for us and we are still a work in progress. But what pleases me the most is that I can see the difference all this effort has made in our lives. In this post I would like to share in some details all that has helped us.

Books are the quietest and most constant of friends; they are the most accessible and wisest of counsellors, and the most patient of teachers.

Boy, standing on a pile of book reaching for a star

First I would like to mention some of the books that have provided not only my daughter but all of us with a lot of inspiration and encouragement. These are books which have simple story lines covering various topics like gratitude, happiness, strength, acceptance, compassion to name a few. I have been researching and buying such books for the past few years but a few have won a big place in our hearts. These are books I read to both my children again and again and they love to hear it every time. They are available on Amazon India (amongst others) and are easiest and most convenient to just order online. There are of course many many such books available if only one looks for them. The ones mentioned below are some of our family favourites.

  • Freckleface Strawberry by Julianne Moore- it is about a 7 year old red haired girl who has a face filled with freckles. She has to put up with all her friends calling her Freckleface Strawberry. It is a beautiful story about a girl who finds the strength to accept something that really makes her life difficult but ultimately she accepts it and then goes on to lead a happy life inspite of it. This book is the one that really helped my daughter accept her skin condition since it dealt with a similar problem.
  • Stand Tall, Molly Lou Melon by Patty Lovell- this is another book about a very short and feisty girl who has buck teeth, has a voice like a bull frog. She is worried about moving to a new school but her grandmother encourages her to be brave by just being herself, smile and sing loud and clear. She does just that and stands up to a bully in her school and wins a lot of friends eventually. It is a beautiful book about being yourself and real courage.
  • What Does It Mean To Be Present? (What Does It Mean To Be…?) by Rana Do Orio- this book is about the meaning of being present, paying attention to each and every moment. In a simple but profound way it teaches the importance of enjoying each and every moment as it comes and some key values like compassion, kindness
  • How Full Is Your Bucket? For Kids by Tom Rath and Maurie J Manning- This book is about a boy and a fictitious bucket which hovers above his head just as he was told by his grandfather. He feels happy when the bucket is full and feels sad and miserable when it is empty. He soon realizes that everyone around him has a bucket just like his and that during the day either the bucket is fills up or it is becomes empty. He also learns that by helping to fill another person’s bucket he also fills up his own. This book teaches us in a very simple way the importance of self esteem, helping others and taking responsibility for one’s happiness.
  • Zen Shorts (Caldecott Honor Book) by Jon J Muth- This is a gem of a book which has three short and simple stories each teaching us a different life lesson. One story teaches us about happiness by living in the present moment, another is about letting go of the past and the third one is about accepting change and uncertainty as being an intrinsic part of life. These are supported by beautiful illustrations and is a superb addition to one’s list of books to read to children

“What lies before us and what lies behind us are small matters compared to what lies within us”

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Meditation, being a very ancient art is also one which is synonymous to our culture. Sadly, many of us seem to have lost touch with it and all that it has to offer us. The good thing is that it is once again gaining prominence not only in our country but around the world. There are different types of meditation practices that one can follow but the one that I will be discussing here is called “mindfulness meditation”. I find this type of practice to be very child friendly and flexible both of which were major requirements for me. Mindfulness is that art of paying attention to the present moment in a non judgmental and friendly manner. Over time the practice of mindfulness can help us look within to find the strength in times of trouble, lower our stress levels, tap into our inherent compassion and also show us how being grateful is the key to real happiness.

I use a mix of simple formal meditation practices and informal practices which I try and weave into our daily routine. Of course, when one slips up, you have to simply start off from where you left off without judging yourself or any one else for the same. This is one of the key things that meditation teaches us over a period of time, the practice of paying attention which by nature should be non judgemental. It enables us to accept ourselves as we are warts and all and is the first step towards self awareness.

I use some music CDs with guided meditation practices and a few books to incorporate some elements of mindfulness into our daily lives.

  • The CDs that I use are
    Sitting Still Like a Frog: Mindfulness Exercises for Kids (and Their Parents) by Eline Snel – it is a book and CD combination which works very well for us. The book is for the parents/adults to get a sense of the meditation practices and serves as a guide to the guided mediation. The guided meditations are simple and easy to follow and should ideally be done together as a family. There are meditation practices for different moods and problems and are very easy to follow by children on their own as well. You can also buy the one that is available for teens.
  • Planting Seeds: Practicing Mindfulness with Children by Thich Naht Hanh- This is from the practice run by one of the most well known Minfulness teachers in the world called Thich Naht Hanh. It has a combination of music and guided meditations along with a book to support it. This book discusses in details the impact of mindfulness in different aspects of life and how to bring more compassion and peace to the world. The practices that we love the most are Pebble Meditation and the Deep relaxation.
  • Planting Seeds: Practicing Mindfulness with Children by Amy Saltzman- these are a set of guided meditations through short stories which will appeal to all children. Again, these deal with various feelings and emotions with the help of simple breathing exercises. This is available in book form and on streaming apps like Spotify (not available in India at the moment).
  • CALM for kids- this is one of my favourite mobile phone (and desktop) apps for meditation. They have now launched a section for kids where they have guided meditation practices through lovely stories.
  • Insight timer for kids–  a new app that I have started using recently has a huge variety of guided meditations by different people and is quite useful in its variety.

A couple of books that I must mention here are on mindful parenting. They have been a valuable tool in giving me practical advice and ideas about incorporating mindfulness into our daily lives in simple ways. It has a tremendous impact on our lives both in terms of health and happiness and this has been confirmed in various scientific studies. The two books that have struck a chord with me are

There are many more such books on parenting and mindfulness, these are two that have really made a difference to our lives. These books not only cover the basic concept of mindfulness, they also offer practical ideas about how to incorporate into our own lives including our parenting practices. There are beautiful formal and informal practices in the books which are very child friendly and can be enjoyed by the whole family.

Music is the rhythm; art is the passion and life is the subject

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Music can play a therapeutic role in addressing various physical, social, emotional needs of a person. It can play an important role in managing chronic eczema as well by lowering stress levels and providing solace in times of emotional turmoil due to this condition. Any kind which can help one relax will do. Music is used by many as a form of therapy but we do not need to be trained as one to use is in our daily lives. The right kind of music can inspire us, lower stress and generally contribute to our overall wellbeing whether it is listening to music, playing it in some form or singing songs. The music CDs for meditation that have been mentioned earlier work very well in this aspect.

Girl paints a coloring book for adults with crayons

Art is another form of therapy which is widely used to deal with stress and anxiety. And it is one of the best suited for children as it can enhance creativity at the same time. Research also shows that certain shapes and patterns like mandalas are more helpful in reducing stress than others. There are now a lot of Mindful colouring books available which are meant for this purpose. You can use them to spend some quality time with your child and at the same time switch off from daily stresses and focus on a simple but pleasurable activity.

A conversation is so much more than words: a conversation is eyes, smiles and the silence between the words

Close-up of family discussing on sofa

The simple art of conversation and dialogue is an amazing way of helping your child cope with the stresses of living with eczema. Conversation was something which was pretty mainstream in our earlier generations but is now being overshadowed at times with our hectic, busy schedules and digital domination. Switching off from the digital world from time to time for the family as a whole is one of best ways to enable this. I am yet to implement a digital curfew but I intend to from time to time starting with a few hours on weekends.

I struggle myself to find a balance at times and make sure that we have regular chats from time to time as a completely family or even one on one when required. Many a times during our heart to heart chats before bedtimes my daughter and my son have shared their worries, problems and even their triumphant moments. We have come to know each other’s way of thinking, shared some of our worries and our conversations have often helped my children calm down with the simple act of listening.

Yoga  and others

There are many more such ways in which you can help your child and yoga is the one which comes foremost to my mind. This is something that I have not really been able to explore much till date with my children but I wanted to mention anyway. I plan to integrate this practice as a part of the bedtime routine in the near future. You can find out about some child friendly yoga classes in your neighbourhood plus there are a lot of online options as well nowadays. These include websites like gaia.com with streaming videos as well as those offering digital downloads for those unable to join a class for any reason.

There are also some lovely books which offer simple exercises which can be done anytime or before bedtime to promote restorative sleep. There are of course many other books that are available for children.

When the mind, body and spirit work as one, anything is possible

mind, body, spirit, soul and you

You may have been wondering why I have chosen to write so much about mindfulness, meditation, yoga, emotional counselling with regards to eczema when most of us are used to dealing with the medications and the treatments. Medications and treatments of course play a large role in dealing with eczema and we are familiar with most of them.

What I have learned over the past few years of dealing with my daughter’s eczema is that true healing is a combination of treating the body along with mind and spirit. My daughter would not be where she is today in terms of her positive attitude towards life and a cheery disposition inspite of struggling with severe eczema had I not placed equal importance on all three aspects. I have learned and I am still learning from many others who have done just that and much more and inspire me to carry on.

As you would have also realized after reading my post, I am very passionate about books and they have been of immense support for us. They play a very important role in our lives in managing eczema and I wanted to share it with you. I have also had the privilege of writing a book with my daughter’s dermatologist Dr Amrita Talwar this year called I Have Eczema… So What? – Inspirational story book for children. I have mentioned it earlier as well but wanted to mention it in this context. The book is a beautifully illustrated children’s book about a 9 year old girl with eczema, who faces all kinds of emotional and physical problems. She eventually learns to manage her eczema and cope with it in a very positive manner with the help of her family’s love and support.

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The book is available at some Crossword Stores and online at amazon (physical and ebook format) and flipkart (physical format). You can buy it at

 

 

I hope that some of the things that I have mentioned in this post will be useful for you and your family in managing your child’s eczema.

May we all find the “strength to endure the pain, the wisdom to think things through and the courage to face our fears” …

It’s finally here! My first book “I have eczema….so what?”

Invitation - eczema Book launch

I had mentioned in my last post that I was writing a book for children suffering from eczema. This is in conjunction with my daughter’s dermatologist, Dr Amrita Talwar who is a coauthor of  this book. Both Dr Talwar and I realised the need for a book which is meant for children who have eczema since there are hardly any resources for them even though there are many for adults.

It gives me great pleasure to introduce you to Maya, the 9 year old protagonist of my book “I have eczema…so what?”

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9 year old Maya from “I have eczema…so what?”

The book  is written through the eyes of a 9 year old girl called Maya who suffers from eczema. She has to deal with various issues like the physical discomfort and pain of living with eczema, social and schooling problems like isolation and teasing, emotional upheavals and even stress. This book would first and foremost help children to understand and learn about eczema in a child appropriate manner. Maya’s family rallies around her and ultimately as a team they manage to help her cope with eczema. Maya and her family are thus able to make eczema a part of their lives so that it does not completely overshadow everything else. It is a book for families as much as it is for children suffering from eczema.

I have eczema…so what?” is ultimately a story of courage, love, teamwork and the strength that comes from within by being a part of a loving and supportive family. It is based on our experiences of dealing with our daughter’s severe eczema, her trials and tribulations and the strategies that we developed over the years to deal with it.

Book launch details

Date: 21st of April, Thursday

Venue: Crosswords, Kemp Corner in South Mumbai

Time: 6 pm onwards

Individually we are one drop, but together we are an ocean 

For those of you who have been following my blog will know how far we have come since I first started writing. It all started right here, with this very blog. This is where I honed my skills and which has now culminated into my first book. However, the book is a result of teamwork as is usually the case.

I am blessed to have Dr Amrita Talwar as my coauthor and mentor for this book, Ms Preeti Vyas (Fun Ok Please) as my publisher and Ms Shraddha (Happy Fish) as my illustrator. Amrita has also played a key role as the person who encouraged me to write about our experiences in the first place starting with this blog. Thank you Amrita for always encouraging and believing in me! 

Family, a group experience of love and support

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My inspiration is of course my 9 year old daughter who faces her situation every day with a smile on her face, manages to get up every time she falls and shows us the what true courage and grit is all about. My husband, my 5 year old son, my mother and our immediate family have all played their critical and immensely supportive roles in enabling us to deal with eczema as a team. This book is a result of this support as I have drawn my own strength from my family and friends. In fact, I have not only been able to act as a primary caregiver to my daughter but I have also found the courage to share our experiences through my blog posts, articles and now this book. Words are really not enough to express my gratitude…but I need to say them anyway, so a big THANK YOU!    

Incase you are interested in this book and/or joining us for the book launch, please get in touch with me via-

email at eczemaanindianperspective@gmail.com,

twitter at @eczemainindia 

facebook at https://www.facebook.com/eczemaanindianperspective/.

 

 

 

 

 

 

 

 

 

 

 

Our first “Walk for Eczema” in Mumbai on the 17th of May, Sunday

social awareness - isolated text in letterpress wood type

I am really happy to announce the first “Walk for Eczema” which has been organised in Mumbai on the 17th of May, Sunday. This has been organised in collaboration with IADVL SIG Pediatric Dermatology(an Indian body for Dermatologists and other skin conditions). This is the first such event of its kind in our city and a part of my ongoing endeavour to increase awareness about this condition in my country.

The complete details are as follows-

Event details

Where :   Equal Streets, HP Junction on Linking Road, Bandra(W)

When:     17th May, Sunday

Starts:     730 am

Ends :     9 am

Organized by: IADVL SIG Pediatric Dermatology and Eczema Support Group for Parents (Mumbai chapter)

Contact: Anindita Rungta/ Comprehensive Skin Care Clinique

Email:    walkforeczema@gmail.com

Contact no. +91 7738533913/ +91 22 23810304

There will be a brief Q&A session at the end of this walk with a senior pediatric dermatologist based in South Mumbai.

Please let us know incase you are interesting in joining us or know anyone who would benefit from this event.

Eczema Support Group meeting for parents

Support Diverse Diversity Ethnic Ethnicity Variation Concept

 

 

I am having the 4th Eczema Support Group meeting on the 21st of February, Saturday from 10 am till 11 am.

This is a meeting for the parents of children who are suffering from moderate to severe eczema. The objective is to provide a platform for parents to share their experiences and learnings with each other. In this meeting we will discuss various treatment options, personal experiences, skin care routine and other related topics as discussed by the members in advance. Infact parents often come up with various suggestions, information in terms of what has worked in managing and improving their child’s eczema which can benefit another child in the support group.
Also, sometimes it helps just to talk to another primary caregiver /parent who is going through a similar struggle of dealing with their child’s eczema.

Topics

  • Diet and its role in eczema/autoimmune disorders
  •  Skin care and bathing routine
  • Phototherapy treatment

Venue- Planet Godrej, Mahalaxmi, Mumbai

For further details and registration please get in touch with me via email at eczemaanindianperspective@gmail.com latest by the 18th of Wednesday.

Our journey continues….( a look at our ancient way of healing- Ayurveda and mindfulness meditation)

I am back! I am back with more stories to tell, experiences to share and hopefully some tidbits of information which might help another parent to cope with their child’s eczema along the way. Only a parent who is a first hand witness to their child’ s suffering due to this skin condition ( and any other such chronic medical conditions)  will be able to empathise with another family’s pain, exhaustion and some times negative thoughts that can arise out of dealing with sleeplessness, social and psychological impact that eczema can have on on a child. And that is what keeps me going to share what works for us ( most of the time) and what products, methods etc help in dealing with my daughter’s eczema.

Our introduction to Ayurveda

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I had recently taken my daughter, Aiyana to an ayurvedic hospital ( IAIM Healthcare centre – an Institute of Ayurveda or Integrative Medicine) in the outskirts of Bangalore (the capital city in the southern state of Karnataka). I was not looking for a quick fix solution or a cure to her eczema, but just exploring other traditional methods of Indian medicine which go back a very long way and seeks to heal from within. My hope is to see if our traditional medicine has something to offer to help my daughter to control her eczema in the long run without the help of other powerful medications like she is on currently.

A rigorous process

At IAIM Healthcare Centre, she was first put on an increasing dose of medicated ghee ( it is a type of clarified butter made by simmering the butter made from the milk so that it gets caramelised which gives it the unique taste and aroma) along with a severely restricted diet. This was done to remove all the toxins from her body prior to starting medications, since Ayurveda considers ghee to be satvik ( in the mode of goodness)  and is the main ingredient in many traditional Ayurvedic medicines. She was given this for 4 days till her body was saturated with ghee (as they could make out from her stools). All this while she was ONLY allowed a diet of fruits (non citrus) and plain khichdi (which is a preparation made from rice and pulses); she was also not allowed to go out anywhere but stay in one place in a warm environment to facilitate this process. The 5th day was the day of purging and she was given a laxative in order to prepare her for the medicines to follow from the next day. All this while she was given a daily medicinal ghee massage and a warm bath mixed with herbs.

An interesting change

One very interesting change that took place during this time was that her skin condition was the softest and the smoothest I had seen in some time. While Aiyana’s immunosuppressive medication continued at the same level with no change, her skin condition improved dramatically with all the diet restrictions (and no other medicines). However, once the medicines started the next day and her diet restrictions eased up, her skin condition slowly came back to normal in the next few weeks. I guess her extremely restrictive diet played a key role in improving her skin condition during the first week at the ayurvedic hsopital (even though it is simply not possible to continue with this kind of diet for more than a few days).

However, Ayurvedic medication demands that one follows a restricted diet since certain food types do not go well with the ayurvedic medicines. Hence, Aiyana has been asked to stay away from fermented products (inc yeast based bakery items) like yogurt, dosa, idli etc; all citrus fruits and vegetables like oranges, lemons, tomatoes; root vegetables like cauliflower, potatoes; other processed and refined foods like white rice and refined sugar; leafy green vegetables. She has also been advised to have everything cooked in ghee. As you can make out it IS a difficult way of life to follow since it does not involve only medication but also a whole lot of changes in one’s diet. In any case, she has been very cooperative and we have been able to follow most of the food restrictions so far.

Our goal

The goal of Ayurvedic medicines according to Dr Gangadharan (who is the Head of the Dept. and treating my daughter) was to strengthen her immune system from within so that over time her body was naturally able to bring the severity of her eczema within a manageable level. I will keep you posted on her progress and any changes as far as Ayurveda is concerned. We have been back in Mumbai for 3 weeks now and her skin condition has come back to normal. I will however have to continue with her Ayurvedic medication for some more time if I want to give it a chance to work. I will also be taking her for a follow-up to IAIM Healthcare Centre next month in order to assess her progress, change in medication etc.

The good, the bad and the ugly

It is always a case of a mix of good days and bad days for her even with her medications. And since there are various triggers to her flare ups, it is nearly impossible to pin point and avoid the the same completely. This leads to a  yoyo like swing in her moods making it difficult for her and all of us especially on those bad (and ugly) days and nights with her itching and inability to sleep. I have already touched upon this psychological impact (which can lead to lack of self-confidence and social skills) and I have described how I have been dealing with it in my daughter’s case in my post Beauty is not just “skin” deep- helping your child cope with eczema.

Let them sleep, for when they wake…they will move mountains

We have been grappling with sleepless nights ever since she was 1-year-old (even though her condition was mild at that time) and when you add to that the mild eczema that my 4-year-old son has as well, you can see that it leads to a lot of sleepless nights and fatigue for the entire family. It is an aspect of eczema ( and Atopic Dermatitis in particular since it affects children) that severely impacts a child’s well-being leading to lack of concentration in school and a lack of self-confidence amongst other problems. It also one issue the entire family (which has children suffering from Atopic Dermatitis) will have faced some time or the other. As a result I have been searching for a way to improve our quality of sleep (without further use of medicines) by reducing stress levels and learning relaxation techniques.

Mindfulness Meditation

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To this end I have been reading about a form of stress reduction technique called ” Mindfulness Based Stress Reduction”  (MBSR) program developed by Dr. Jon Kabat-Zinn at the University of Massachusetts Medical Center. It is meant to work by making one more “grounded” or “aware” of the present moment and simply means paying attention in a particular way: “on purpose, in the present moment, and nonjudgmentally” as described by Dr Kabat- Zinn. In this post, I will be just touching upon this topic since we have just started following the same ourselves.

My goal in trying to incorporate it in our daily life is very simple – to help my daughter reduce her stress and frustration levels and hopefully cope with her medical condition better with time and practice. The good thing is that one does not have to be a Buddhist to practice this though it has its roots in Buddhism, Taoism and yoga. Mindfulness is the art of conscious living so that you live a life being who you are already and not try and be someone that you are not. Hence, one’s religious beliefs does not interfere with this practice.

Meditation and coping

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I am using the book and CD combination- “Planting Seeds: Practicing Mindfulness with Children which is based on Thich Nhat Hanh’s (a Zen Buddhist monk) thirty years of teaching mindfulness and compassion. They are designed to help relieve stress, increase concentration, nourish gratitude and confidence, deal with difficult emotions and improve communication.

While we have just started practising this, Aiyana has been enjoying our daily sessions of “deep relaxation” before bedtime since it is helping to calm her (and me) down quite a bit and relax. While it is too early to comment on the results of practising this, I can say that it has made a slight improvement in her sleep quality. And anytime that she wakes up feeling itchy, the music is soothing enough to lull her back to sleep most of the times. I am also planning to use another well-known book for practising mindfulness meditation with children – “Peaceful Piggy Meditation” by Kerry Lee Maclean for the same purpose.

Be happy for this moment, this moment is your life

And in the end, this is what matters. How well we lived our life, how well we loved, how we counted our blessings along the way; how we learned to accept the things we simply cannot change and faced our most difficult moments. This is the lesson I strive to teach my children, one lesson that I am myself learning every day of my life.

 

 

The only journey …is the journey within

I have been juggling a lot of balls in the air lately and in the midst of doing that I have fallen behind in my blogging lately. But I am happy to say that there have been some developments at my end with regards to my daughter. Her schooling is one of the things we have been dealing with and thinking about for the past six months or so. As I have mentioned earlier, Aiyana is currently on a low dose of immunosuppressive medication to control her eczema. I am sharing our experiences in the hope that it might help other children who are in a similar situation in some way.

Education and eczema

Inspite of the immunosuppressive medication, her eczema becomes worse when she sweats since her itching increases considerably. Aiyana’s school, Bombay Scottish in Mumbai, has been very supportive. She is excused from any outdoor activities including the school assembly, helped with her moisturisation and medications as and when required and generally taken care of as a whole. We make sure that she is picked up from school in the afternoon by car and does not have to travel in the hot sun while coming back home. But even that is not enough to help with her to cope with the sweating and itching and scratching at school.

As you would be aware, Mumbai has a tropical climate and is humid almost the throughout the year being close to the sea. She started missing school on a regular basis due to heat rashes and eczema flare up ( in India, only schools following an international curriculum are air conditioned). She would itch all over and therefore scratch in the class with a constant fear of being seen by her classmates. After consulting her doctors we finally decided to move her to a school with an air conditioned environment which we hope which would be more comfortable for her. To this end we did a 2 week trial in a school (based on international curriculum) with an air conditioned environment. This was possible entirely due to her dermatologist who helped to arrange this for her. At the end of 2 weeks it looked like it did seem to make a difference and she was quite comfortable in this environment. However, it still took us a while to decide on and finalise a school for her and our son (who starts school this summer).  This process is finally over and just last week we secured admission in an international school closer to home. Both my children start school in July and I am hoping that my daughter will be able to attend school regularly without the discomfort of constant itching due to sweat and subsequent scratching and pain.

A medical condition like this does not end with medications and visits to the doctor. Life is a constant struggle to carry on with routine activities on a daily basis under the onslaught of an unbearable itch (especially when there is a flare up). My 7 year old daughter used to be in constant fear of being seen by classmates while feeling the unbearable urge to scratch in odd places.  As I read somewhere recently, “eczema can be compared to a bully who sometimes keeps going for days on end, then leaves, only to reappear“.

Sleep deprivation is an added burden to bear for such small shoulders due to the itching and scratching at night at times. Even though Aiyana’s medications keeps  her eczema under control most of the times, there are frequent phases when it becomes worse due to stress, illness or other triggers. Antihistamines do not seem to help much in her case at night time and it is a difficult time for us as a family. It in fact happened very recently due to her illness and seems to get aggravated during times of ill health due to any reason whatsoever. While those nights (and days) seem to be a never ending cycle of itching and scratching, it is very important to provide constant support and keep your child’ spirits high. I try to make sure that I do not portray a defeatist or negative attitude and distract her as much as possible and find ways to make her itching more bearable (like rubbing instead of scratching).

Ayurveda- an ancient Indian way of life and healing

I am taking Aiyana for 2 weeks to I-AIM Health Care Centre near Bangalore (in the southern state of Karnataka) for an Ayurvedic check up and treatment. It is founded and run by Padmasrhi Darshan Shankar, known for his outstanding contributions in the field of revitalization of traditional systems of health-care in India. Ayurveda is not simply a healthcare system, but a form of lifestyle adopted to maintain perfect balance and harmony with nature thus making it a wholistic system of medicine. I am hoping that our traditional and alternative form of healthcare is able to complement and control my daughter’s eczema and help her in the long run. I will write more about it later once we are back from our trip. 

 

 

 

 

 

 

Nutritional supplements- worth a try

Through interaction with other parents whose children have eczema, I have come to know that in some cases  nutritional supplements like Omega 3 oils, probiotic ( probiotics are organisms such as bacteria or yeast that are believed to improve health and are available in supplements and foods) and multi vitamin supplements have helped to lower the incidence of flare ups in childhood eczema and bring some under control. There is no concrete scientific evidence as of now to prove this conclusively and studies are going in some of these areas. Due to this, doctors rarely prescribe these as part of the normal course of medications for Atopic Dermatitis. But after reading up on these and consulting Aiyana’s doctors about the same I decided to try the Omega 3 and the probiotic supplements for some time for my daughter.

Probiotic

Omega 3 oilI did a lot of research on a suitable and safe product (and brand) for Aiyana ( there are many brands and types of Omega 3 oils and probiotic supplements worldwide) and based on the reviews, some literature etc I shortlisted the 2 products as given below-

 Nordic Naturals Omega 3-6-9 Junior and Rainbow Light Probilicious  Gummies  for children.

Aiyana has been taking these supplements for a few months now. I will be able to share our experience only after a reasonable period of time as these kind of steps usually work in the long run and the impact might not be immediately visible.

 

Its time to turn life’s stumbling blocks into stepping stones

A cnikihronic medical condition like eczema is rarely only a physical struggle, a lot has to do with an immense amount of inner strength that is required to cope with this on a daily basis. My daughter has to deal with the obvious consequences like physical discomfort, sleeplessness, fatigue as well as the social, emotional consequences of dealing with this condition everyday. It is as much my responsibility to make sure she is as comfortable as possible at a physical level as it is to ensure that she is equipped to deal with this condition at an emotional level keeping her self-confidence intact. She has grown stronger emotionally as a person since her traumatic month long ordeal in the hospital last summer due to an unforseen reaction to a medication given to control her eczema. (I have written about our experience in the post- “…the tough get going- part 2”)

I know that I have succeeded to a large extent in my endeavour when friends, families and even complete strangers praise my 7 year old’s cheerful smiles, her sweet and caring manners and her emotional strength.

You can only fill the glass of another….if your pitcher is full ( a note to the parents of children with eczema)

Seasons greetings for the new year!!  A new beginning…a new year filled with HOPE

It has been a while since I last put up a post. I have been traveling a bit and have also been a bit tied up with my younger brother’s upcoming wedding later this month. Having said that, I have missed penning down my thoughts since I have come to realise that there is a certain therapeutic value in sharing one’s joys and sorrows with other like minded people. It definitely makes the load one carries a lot lighter.

There are a lot of parents out there like me who are struggling to take care of their child and who are sometimes overwhelmed mentally and physically. And irrespective of whatever the medical problem is, I know only too well how helpless one feels to see your child suffering. But oh what a feeling it is to see one’s child get better and see the innocent smile on her face once again! I was lucky to have been given a second chance with my daughter last year and I do appreciate this gift, a lot of other parents are not as lucky.

So far so good- an update

The good news is that my daughter’s eczema (Atopic Dermatitis in her case, there are different kinds as I have discussed in my earlier posts) has been kept well under control for the past couple of months under the immunosuppressive drug, Cyclosporin. So the influence of oral steroids (prednisolone) has been waning and the sudden spike in her cholesterol levels last month (one of its side effects) has now receded. However, these kind of powerful drugs can usually only be given for a limited period of time and that also under strict monitoring via regular blood tests. Blood tests are thus a regular feature in our house and I have managed to have a gentle mannered phlebotomist who makes the process as painless as possible.

We will have a medical review coming up in a few months time when it will be seen whether the medication can slowly be phased out or another drug has to be introduced, but that’s a worry for another day. Till then I intend to keep trying to figure out if there is another way to help get Aiyana’s eczema under control.

Taking care of oneself

A lot of times, we as parents get so busy taking care of our children, we forget to take care of ourselves. This is especially true for those whose children have chronic health issues. But it is really important that you as a parent (parents are usually the primary caregivers in the case of their children) take care of your own physical and mental health at the same time. This is of course easier said than done and close to impossible in times of crises, but should be definitely taken seriously at most other times. If we have to be our child’s source of constant strength and love during difficult times, it is all the more important not to neglect ourselves.

It doesn’t get easier, you just get better

And I know exactly what I am talking about. My 6 year old daughter was in the ICU for 3 weeks last June out of which the first 2 weeks were critical. There was only one place I wanted to be and that was by her side everyday. My husband was partly in the hospital and partly taking care of our 3 year old son at home and our family and friends were our source of strength and support during that difficult phase. However, I was the one keeping vigil by her bedside every night since I needed to do it for her as well as for myself. I was extremely stressed and upset and hardly got more than a few hours of undisturbed sleep at a time amidst all the flickering lights and constant beeping of the monitors in the ICU. But somehow I kept going night after night with just a few hours of rest the next morning.

I now realise that my regular schedule of exercise in the past few years played a major role in enabling me to continue to be there for my daughter for those 3 weeks without any break. Regular exercise in any form is  a must to build stamina and ensure you are in good health to provide the best care for your loved ones.

The time to relax is when you don’t have time for it

This is true especially in times of crises when there is not even enough time to breathe properly. However, that is precisely the time when you have to remain as calm as humanly possible to make the best possible decisions in the interest of your child and provide the best support possible. The time when our children need us the most is usually the time when a parent is under tremendous stress and reels under the responsibility that comes with being a parent.

When I used to see the small form of my daughter lying in the ICU bed, the weight of the responsibilities of being her mother were the heaviest. I did not have the luxury of breaking down at any point in time. It was only my passion for reading which helped me relax and destress myself for a few minutes at a time each day. I used to read sitting next to her at night just to take my mind of all our problems and uncertainties even if just for a short while. There were of course times when my mind used to be crowded with all the negative possibilities and a feeling of helplessness, but relaxing even for a short while at night helped me prepare myself for the next day. It helped me to cope with the same problems just a wee bit better, but sometimes that itself makes a lot of difference.

Find your own way of relaxing, it is not only worth it but also essential for a caregiver.

I cant promise

 I can’t promise to solve all your problems, but I can promise you won’t have to face them alone

This is my promise to Aiyana and one I know that I will always strive to keep. A lot of times it is not possible for a parent to make our child’s suffering go away, but we can make sure that our children are not alone in their fight against eczema. Eczema differs from a lot of other medical problems in the way it affects a child’s physical appearance, nutrition, lifestyle, sleep and can be triggered by a host of factors like humidity, external irritants like house dust, perfumes, detergents, stress amongst others. This makes it difficult to control this condition in many cases and hence needs much more than just the medicine prescribed by the doctor unlike in other childhood diseases like chicken pox, measles etc.

The process of controlling and improving eczema can be quite labour intensive apart from being disruptive to one’s normal way of life but needs to be done nonetheless. A lot of long term lifestyle changes (including food related ones) may be required apart from a time-consuming skin and bath care routine for the child on a daily basis ( I have discussed both in my earlier posts- “Eczema- a change in lifestyle” and “Bath time! ( And skin care routine for eczema)”). Of course, the hardest part of being a parent is watching a child go through something like this and not being able to fix it for them…and just like me I know you are doing all you can.

“I may not be perfect, but when I look at my children I know that I got something in my life perfectly right” 

How true! Sometimes, in chronic and severe medical conditions like Atopic Dermatitis the condition makes itself blatantly visible. It manifests itself in the form of rashes, thickened and dark skin and in severe cases, weepy patches and lesions. It is easy for a child to become a target of ridicule and taunt like my daughter has been subjected to and it can have a negative effect on a parent as well. But to each of us blessed with a child, we know that our child is perfect in our eyes and will be loved no matter what their physical appearance (on which our society places such an importance).

So I hold my head up high and I am teaching my daughter do the same every day, for the rest of her life. I encourage my daughter to lead a normal life and hold her hands on those days her self-confidence falters.

At the end of the day, love is learning how to take excellent care of yourself so that you can take phenomenal care of the ones you love.