No Conflict Zone

homeThe title of this post is probably something that citizens globally are seeking today either due to geo-political reasons, economic reasons, or religious reasons. However in my post I deal with our attempt to make our home a no conflict zone. I do not claim to be fully successful but our strive continues. I will share my experience and wish to receive your feedback.

Most special needs parents will agree that we argue with our spouse much much more than in natural circumstances and we know how our lives transformed emotionally as we moved into a role of  a special needs parent. A conflict between us seems inevitable and arguments happening at the drop of a hat is an understatement. Reasons are galore and could be very minor, for example you gave her meds at 8:15 AM but your spouse wanted them to given at 8:00 AM and comments that you are careless. The next time, you see your spouse busy on a phone call ( might be very crucial for him) instead of attending to your child, you do not miss the opportunity to taunt him as you had been nurturing the hurt feeling for hours. The end result is totally unnecessary. A war of words ensues. The environment of the house is opposite of a no-conflict zone. All said and done your child suffers unknowingly. One obvious effect is when you are working with your child immediately after a conflict, you realize the quality of your work drops, your awareness and your concentration is impacted. This is definitely not what we want.

Though the objective are the same for both of us : helping her, ensuring her well being and activating her brain then why do we argue, get hyper, get stressed, retaliate and yell. We probably conclude that the stressful situation due to her health condition takes a toll on both. But we cannot play the blame game here, the solution is in our own hands. We need to do a favor to our self.

There is a simple solution. Modify your tone. Whenever you are conversing, whether you justify a particular task or you provide your point of view, or introduce a  controversial topic or give a contradicting reply etc, do it in a relatively softer tone than you have been doing. It works wonders. After you start applying it in your daily conversation, the awakening will happen on the other side too. You will  be amazed by the results. Initially you will have to do it with awareness and consciousness. Gradually it will become a part of your conversation style and then your habit. Consequences are awesome,  you will always have healthy conversations and will look forward to work as a team in the no-conflict zone of your home. Not to forget, the ultimate beneficiary is your child.

There is another tip shared by Sudip, Peu’s father; difference in opinion are natural and due to various reasons we might get into arguments with each other. But retaining the unhappy/bitter mood for hours is damaging. Instead, in a few minutes, trash the bitterness, forget and move on. This too is a gradual process and will not happen overnight but put in a conscious effort to get over with the situation and thoughts.

Every situation has a silver lining; during one of our heated discussions we discovered Peu’s (diagnosed with CDKL5 disorder) cognitive maturity. As we argued, Peu swayed her head side to side looking at us one at a time whenever it was our turn to reply during the conversation. It was an eye opener. She seemed to understand everything and probably was laughing at our silliness.

Your thoughts are welcome!.

 

 

 

Balance

life-6
Image from cellularwisdom.com

The term balance has its own connotation among all age groups be it a toddler, a teenager or a new joiner at work. A lot is said and written about the work life balance of a working mother.

In this post I highlight the importance of balance in the life of a special needs mom and share my experience on how it has helped me transform from a full time caregiver to an effective caregiver.

In one of my earlier posts, I had shared my transformation to a dedicated coach for my daughter Peu who has been diagnosed with CDKL5, a rare genetic disorder. In an year’s time, things changed.

A friendly gesture by Anjana, my friend and colleague triggered the change in my life. She informed me and suggested to apply for an open position in the organization I was employed earlier.

It was after much trepidation and several convincing sessions by Sudip, Peu’s father did I apply for the job. Today I am grateful to all who enabled me to join back to my profession.

Initial days were filled with confusion and a deep sense of guilt. On the other hand joining back to my profession and doing the stuff that I enjoyed  was thrilling for me. Sudip ensured that I could completely focus at my work when I was away at office. The set up is working fine for us. He applies various optimizing techniques so that we can achieve balance in all our daily routine tasks enabling us to focus on Peu’s care and development.

Gradually in a month’s time, I  realized:

  •  The fact that I could focus on two different (completely diverse) things was rewarding.
  • My interactions and sessions with Peu got more effective and result oriented. I hope she too appreciates the variation.
  • It was during this time that I was assured about my findings, could nail down the cause of her seizures and solve it to a major extent.
  • I could establish a balance between my two roles with more than willing support from everyone concerned.
  • Felt confident about my work and abilities.
  • My brain looks out to learn new things, had shunned the depressive thoughts, and gets creative to help Peu activate her brain.

Therefore, my message to all the special needs parents who are also full time caregivers is to diversify yourself. Get deeply involved into a cause, hobby, initiative or profession and during this involvement completely switch yourself off from your child’s environment. Do this everyday if possible. I am certain that you will come back home to your child with double the energy and positivism. I believe the balance is essential for us. I attribute this new found balance to be a consequence of allowing my brain to reorganize its thoughts, processes and ideas about Peu’s  care and development while I get engrossed in my professional work. And when I am back with Peu in her environment, there is an element of newness in my interactions. The diversion is like an engine oil that lubricates the brain and facilitates better performance in my primary role.

Your thoughts, inputs and feedback are always welcome.

I end this post with a short note of how Peu recognizes the importance of balance in her life.When she sits on a chair or in our lap and establishes an erect position balancing her head on her spine, her expression reflects awareness, concentration and intention. It is endearing for us but she probably experiences a sense of achievement during those moments. We hope that she realizes the importance of balance in her physical body and then her brain will gradually acquire sitting balance too.

Progress

In India, it is considered a taboo, specifically among special needs parents to openly discuss about their child’s latest progress lest it regresses. We too were scared to utter about her seizures stopping during the honeymoon periods. I look back now and realize the reason. It is because parents have an intense fear of losing whatever progress has been achieved. They are in a state of confusion about the cause or reason behind the progress.

Currently, we are no longer in that bandwagon anymore. I firmly confirm that our findings hold good till date. Applying our discoveries are working for our daughter Peu who is diagnosed with CDKL5, a rare genetic disorder. We continue to see progress in her. I wrote my findings in my previous post. Nailing down our discoveries was a time consuming process and can be termed as a memorable journey of discovery. The journey still continues.

How I wish I could dedicate this post to make tall claims about Peu’s progress. I do aspire that one day I will write how Peu learns to crawl, sit, stand, walk, and talk. In this post, I just wish to mention that we continue see subtle cognitive progress in Peu. It is touching to see her give responsive smiles to specific toys, vocalize in different tones at different situations, share smiling glances with dolls of her choice and engage in a playful conversation in her own way with her stuffed toys. Each morning, her wake up time is no more marred by a seizure episode.snap2

Through this post I wish to convey a message to parents: arise and awake!! Take charge of the situation, gear up your sensitivity, and trust your instincts.You and only you have the power to identify and troubleshoot issues that your child faces. Each child is different and it is not wise to apply the same methodology for all. Your child’s body is constantly giving cues and signals of what is not working well. Though a human body has immense power to repair on its own, we can support that immaculate engineering. Instead we give medicines for each symptom, be it seizures, acid reflux, breathing issues, digestive problems, sleep issues, bone issues, the list is endless. These issues are mere signals and we are capping them off, inviting more pain and suffering. Finally we land up in emergency situations.

Ask yourself, “Have any (or which) of the numerous medicines that you give your child several times a day helped to eliminate the issues altogether?”. If yes then you should have been able to stop the medicines after some time. Instead you seem to increase the dose over a period of time and then add another because the earlier one lost its efficacy  or did not work altogether. The consequence is that the body gradually looses its ability to heal itself due to this external interference with haphazard chemical overload. Then you fall into a loop of aiding the body and brain with external devices and instruments. And all along your child suffers and only suffers silently. You blame the underlying disease for all the pain and suffering. It is us, our ignorance, our fears and our lack of faith in our parental instinct. I gently repeat , arise and awake!!

I conclude this post with a humble request to try initiating a different approach in your mind and that approach should solely be based on your child’s reaction, response and body signals because you being a parent is empowered to sense those. Let us work with our children not in a standardized way but in an exclusively customized maybe non-standardized way. Ultimately it is a win win situation for your child and you.charge2

Feedback, questions, and thoughts are always welcome.

 

Ketogenic Diet and After – Part 3

puzzle1It took me longer than expected to write the third and final post of the series. In this post, I share our learning of how we controlled Peu’s seizures naturally. Nature is far far more powerful than a puny (trying to be logical and analytical) brain of a special needs mom. It was not easy. The journey was long and painful for Peu and us but having found conclusive evidence, I am eager to share my learning. Hopefully nature continues to support our methods to handle Peu’s challenges.

The journey of weaning Peu ( who has a CDKL5 disorder) off ketogenic diet was instrumental in realizing three things:

  1. The reasons for her intense tonic, clonic, myoclonic seizures and how to keep them under control.
  2. The secret behind the honeymoon periods which is largely mysterious for most parents. This is the time when seizures stop.
  3. Seizures were not the reason for her developmental delay but only temporary regression.

Every finding that I share is very specific to Peu and might not be applicable for all. However, the trick to nail a solution is to focus on your baby and her reactions instead of using and depending on external means. Your child’s body will throw light to the solution. You being the closest to your child,  have the power to solve her challenges.

After an year of ketogenic diet, we faced issues like acute constipation and acid reflux. For constipation, glycerine suppository and Miralax were our external aids but now after the wean, we are free of them.

After around two years of Ketogenic diet, her acid reflux was so serious that she puked slimy matter every hour. I was reluctant to start an antacid which would only curb the symptoms not solve the root cause.We  tried to control by natural means like using Apple Cider Vinegar. It helped to an extent but could not stop the issue. Since the root cause was the diet,  we decided to wean her off Ketogenic diet gradually over a few months. Both constipation and acid reflux vanished after the wean. Her digestive system was back at to its normal functioning.

During the weaning process, I committed a mistake of stopping her supplements. Her fairly controlled seizures came back with vengeance, she suffered a leg fracture out of nothing. her sound sensitivity increased manifold and she had a  constant subtle fever in her body. Since her blood test reports showed nothing, we remained clueless. After her fracture we restarted all her supplements. Three months of having stopped the mineral and vitamin supplements had made her system extremely fragile and sensitive. Her seizures were as terrible as ever in terms of intensity, frequency, duration and after effects. I wanted to give up and thought her genetic condition was ruling her body. But if you do the right things, you see the desired results too. One year after we restarted the supplements, her tonic clonic seizures stopped.

Recollecting my previous experiences, I realized that each time her body or brain  achieves a perfect balance of minerals, her tonic clonic stops. This was a fact and I had data points as evidence. Here is a list of my findings that I feel is proven with my experiments and experiences with Peu.

  1. Calcium deficiency leads to sound sensitivity. Though blood level calcium is always fine, Peu’s brain was always calcium starved and she was born with this acute sensitivity.Adding Calcium( 1000 mg) daily, solved her sensitivity to the extent that exposure to loud sound did not result in tonic clonic episodes. She still has her startles and  head drops when exposed to loud noise.
  2. Magnesium deficiency can cause swallowing problems which explained her failure to swallow food and water though all ENT tests revealed nothing. She is back to her usual state of swallowing mashed or finely chopped food.
  3. There were three instances of honeymoon period. Each time, the seizures were back due to modifying or stopping her mineral supplements.
  4. At the start of the ketogenic diet we were educated to start supplements because of the restricted diet.She never took any mineral or vitamin supplements before the diet. Her body & brain never had the desired balance of minerals . Therefore we never ever achieved seizure control in her early years.
  5. Seizures cause temporary regression but is not the root cause of delay.Despite all odds, her brain continuously tries to learn and seeks opportunity to thrive.
  6. Sugar in any from even in fruits is not accepted by her body and always results in increase of seizures.She does have a sugar bug ( a blue vein on the bridge of her nose), a thing which I was skeptical about earlier..
  7. Our decision to avoid gluten, casein,soy, and corn in her food is correct.
  8. Be aware when we give her the night shade vegetables (eggplant, peppers, potatoes and tomatoes).
  9. Completely avoid food rich in glutamate and aspartate.

I have made several mistakes and consequently her health suffered. The good news is that because of these mistakes, we chanced upon the discovery of the importance of the right balance of minerals for her brain.
However mother nature is supreme and I do not know what changes might come up in her body and all of my current findings might just melt away due to physiological changes or genetic factors.But at this current state we believe in our theory.

In conclusion, I write that we dream big for Peu.We incessantly work to
see some progress daily in tandem with her genetic condition.  Progress is a relative term for us. Some days it could only mean to keep her happy and content.
Let us all dream big for our CDKL5 kids. You need not share it but have it running in your mind. It gives you strength during your difficult times. The difficult times seem eternal and sometimes you ridicule yourself on how you could dare to even dream for your little girl, given her condition. However, positive energy will show you the right path always.

Your inputs, queries and thoughts are welcome.

 

Ketogenic Diet and After – Part 2

ketodIn this part, I describe our experience with doing the Ketogenic diet on Peu, who has a rare genetic disorder known as CDKL5 disorder. Our experience might be informative/beneficial to parents who are planning to start the diet for their child.

In India, a neurologist, Dr Janak Nathan, from Mumbai pioneered ketogenic diet as an alternative treatment for epilepsy in India. The best part of his treatment plan is that he does not need hospitalization to start the diet. Instead he conducts a four day out-patient consultation. He also provides a recipe book that he has himself written keeping in mind the ingredients of Indian meals. He and his dietician team provides orientation and hands on training to all parents and caregivers. After the first consultation, he performs a monthly review for three months and thereafter tri- monthly reviews. His team is always available over email or phone.

Ideally ketogenic diet treatment requires a ratio of 4:1 for fat: (carbohydrate + protein) content in a meal. Dr Nathan has modified that and he starts with 2:1 ratio and then gradually increases if there is a need based on each child’s response. Several blood tests were done to ensure she is eligible to get started with this diet. The first step is called carbohydrate washout where all trace of carbohydrate is removed from the child’s body completely.

dietWe as parents had to get familiar with a weighing scale, measuring utensils and best practices to stick to the accurate measurements provided by the dieticians. The idea was to have a fixed calorie intake in a day based on her weight, and then divide the calorie equally between 4 meals in a day. Each recipe would have metrics like total energy in calories divided further into energy from fat and energy from carbohydrate + protein. While preparing a meal, we needed to measure each ingredient as per the recipe provided to us by the dietician. For an example, in a meal of 250 kCal, to acheive a ratio of 2.7:1, we gave 44 gms of a specific type of vegetable (carbohydrate), 24 gms of fish (protein) and 20 gms of oil (fat). We gradually developed a routine to prepare 4 meals a day based on the measurements provided in each recipe.

In our case, we started with 2:1, then went to 2.5:1, 3:1, 3.5:1 and then finally settled with 2.7:1 as anything above 3:1 was causing her to vomit incessantly. This fine tuning was done probably in a month’s time. Within a month we also discovered that Peu had egg allergy, could not tolerate cheese and considering the food ratio, we could give very minimal amount of fruits. We had also restricted intake of Gluten (wheat), Casein (milk), Soy and Corn because of their relatively high glutamate and asparatate content known to cause neuro-excitement. However this restriction was never a part of the ketogenic diet rules but we applied it based on some studies that we had read. Besides the diet, we started multivitamins, multi-minerals and calcium supplements as recommended by the neurologist.

Snap3One very important aspect of maintaining ketogenic diet was ensuring her ketone levels were high through out the day. We did this through keto-stix, which is measured from urine sample (a few drops). Our attempt was to obtain the highest level (4++) at each of the four times we measured through out the day. Now besides the seizure log, we maintained urine ketone levels log on a daily basis. After several fine tuning measures, we attained 4++ level all times a day but missed the early morning reading as there was a gap of 9 hrs between dinner and breakfast. We even tried to feed her at 2:00 AM, in order to achieve the ideal ketone levels. We tried very hard to be accurate as much as possible. As per doctor’s advice we altered the last meal ( dinner) to be at 3:1 ratio but due to her intolerance, we had to discontinue. However, in a span of a few months with observation and experience we could nearly attain 4++ all four times of a day.

All this and more had to be done on a daily basis and there were no holidays or gaps during a trip or festival. All meals had to be accurately measured and last bit had to be fed ensuring no spillage or wastage.

We put in so much effort with just one objective of getting her seizures under control. We read several stories of parents, for some seizures stopped after the second day, for some in 15 days  and for some in a month. Our doctor said it might take 1-3 months for the effect to get started. We were ready to wait. The first effect we saw was increase in seizures. We self consoled, maybe since the metabolism of her body is changing from glucose as a source of energy to ketones as a source of energy, her body might be reacting with seizures. Well we were not wrong. Any small little change that occurs in her body or her environment her body reacts with seizures. This is true till date.

We waited for 6 months, following the diet diligently with precision but saw no sign of seizures stopping. Her blood work during our monthly visits to the doctor, turned out to be fine. As per the doctor, the EEG showed improvements. We remained hopeful. The effort we put in were:

  1. Ensure there was never a break in her measured meals.
  2. Ensure we prepared each meal that was palatable and tasty.
  3. Travel with a special needs child who is very sensitive to noise to meet the doctor on a regular basis.
  4. Discipline ourselves and curb our urge to feed her when we were having a dessert or any normal food.
  5. Create a customized recipe book.

Nevertheless we continued and decided to continue as we had run out of all options. There was no other method to try to contain her seizures. All we thought was maintain 4++ ketone levels though out and we will reach our target.

The best part of the diet was that we gradually tapered her off all the two medicines. For Valparin, we had stop it abruptly as her platelet count had dropped drastically. We also got freedom from the deadly Rivotril (Klonopin). We continued with her multivitamin and multi-mineral and calcium supplements. After stopping all medicines and with the diet on, we definitely could see some alertness and vocalization in Peu. This was enough to keep us going on with the diet.

Approximately in an year’s time, September 2013, her seizures stopped. We were overjoyed. But this period lasted for around 2 months. I had started a protocol to kill germs and worms in her body but it probably disturbed some form of balance in her body resulting in her seizures to be back in a terrible way. Another probable mistake I had done was to stop her supplements briefly, I thought her meals were good enough and the ocean water that I gave her was sufficient for supplementing her with all minerals. If I look back I realize that we learn through mistakes. This experience was needed to discover the hidden piece of her uncontrollable seizures. Her diagnosis of a genetic disorder did solve the puzzle partially but we had yet more to discover. One of the lessons learnt is never to stop her supplements. With numerous years of taking anti eplileptic drugs and high ACTH steroids for 7 months, she definitely needs the multi-mineral supplements.

In my next post, I describe how Peu’s health was impacted by this strict diet and how we finally weaned her off ketogenic diet. During this process, we  discovered some vital clues to keep her seizures under control.

In three years of using ketogenic diet, I have gained knowledge about nutrition, natural food, calories, and several other aspects of healthy nutrition and food habits.
I perceived that we should consume fat as less as possible, the reality is that healthy fat is needed by your body and brain. Healthy fats are more essential than carbohydrates. Reduce carbohydrate (grains) but have adequate quantity of healthy fats. This useful information is valid for all of us.

Feedback and inputs are welcome from all.

 

Ketogenic Diet and After – Part 1

ketod

The Ketogenic diet is high in fat with standard protein and low in carbohydrates. This combination allows the body to generate ketones which becomes the primary energy source for a body unlike glucose in an usual case.
Due to high ketone bodies in blood a body reaches a ketosis state and that leads to reduction of seizures. One of the very useful resources is the Charlie Foundation web site. I also found the Ketogenic Diet India.org site useful. This is an accurately calculated diet supervised by a team of doctors and dieticians.

In this series, I share our experience with Ketogenic diet as an anti epileptic treatment for my daughter, Peu who has a rare genetic disorder named CDKL5. Based on what I have read and heard so far, our experience seems different. In fact, after weaning Peu off the diet, we discovered causes for a few of her underlying health issues, the hard way. Several of the unexplained issues just fell in place. During this span of last 3 years, I have made several observations and discoveries about Peu’s health condition. However I am yet to nail down the core reasons for her health condition but hope will reach that milestone soon. The lesson learnt from this experience is that there is no short cut for positive results. One has to learn from experiences through trial and error.

I wish to reiterate that what I share here is specific to Peu and might not be applicable to any other child. Nonetheless your thoughts, feedback and experience are valuable to me.

We started the ketogenic diet in October 2012. Peu was two and a half years old. After trying multiple anti epileptic drugs and two courses of ACTH, which failed to stop her seizures,  I was keen to start the diet. I educated myself with lot of information about the diet. There are numerous resources available on the internet. I felt we would finally attain success to control her seizures. During those days, unaware of her diagnosis, we thought once we control the seizures, all problems ( developmental delay with hypotonia and CVI) will get solved and things will bounce back. Today we realize, it was a futile attempt. Her genetic condition is the underlying reason for all the delays and not the seizures. Her body uses seizures to show in a brutal way that her brain has a serious issue. I also read somewhere that due to the short seizures, a more severe damage of the brain is avoided but am not sure of its authenticity.

Before our first visit to the neurologist who prescribed ketogenic diet, we had already started low glycemix index (LGI) diet at home. We did see a reduction of seizures both  in intensity and frequency  which just strengthened our hope that Ketogenic diet is THE solution for her seizures.

These days some doctors prescribe Ketogenic diet as one of the mainline treatments for refractory seizures. However we chose it as the last treatment option after having tried majority of the drugs. We realized one route was exhausted and now needed to start another route to treat her seizures.

I agree that starting and maintaining the diet is a time taking process but eventually you develop a routine around it thus making it manageable. However there are three genuine challenges for starting and maintaining the diet with your kid:

  1. if you have siblings of your child who are on normal diet. it leads to extra work for you.
  2. If your kid is cognitively aware of what he/she is not allowed to eat and she gets access to the barred stuff at home or at parties, at school etc., it  might be difficult to maintain the ketone levels and might lead to other consequences.
  3. If you travel outside of your home along with your kid, it requires a lot of planning to ensue that you can stick to the diet round the clock. But extra planning and preparation is always needed when you travel with a special needs child with or without diet.

In my next post I will share our experience with starting and maintaining ketogenic diet for my daughter and its effect on her seizures.

Your input and feedback are welcome.

 

 

 

Gratitude

This blog is about my daughter, Aditi whom we lovingly call Peu (pronounced as Pew). It means “sweetheart”. She has been diagnosed with a very rare disorder ,’CDKL5 genetic disorder‘. She bravely fights to overcome her challenges and teaches me numerous lessons each day. She personifies the statement ‘Never Give Up’.

Peu
Peu@4 years

In my posts, I will share my perspective of Peu’s various challenging experiences and my learning from each of them. Each post will have a key takeaway for parents who might face or are facing a similar situation. Your feedback, comments, advice and queries will be appreciated.

In India, usually, before you start a new work, you offer prayers to God and remember your ancestors, seek blessings from the elders in your family and invite good wishes from friends and dear ones. On a similar note, in my first post, I wish to express gratefulness to my family, friends and well wishers who have supported me and helped me during our troubled times.

A special mention of Gouri, Peu’s nanny from her birth to four years. She was my pillar of strength during the early years of struggle. Her love and care is priceless.

Gouri with Peu@3months
Gouri with Peu@3months

I express my sincerest gratitude to two of the most important people in my daughter’s life, Cyndy Manes and Michelle Turner. They have been crucial in establishing hope in us as we raise Peu. Their love, compassion, time and energy for Peu is beyond compare. More about them in the upcoming posts.

Cyndy Manes is an ABM (Anat Baniel Method) therapist from San Antonio, Texas.

Ciyndy with Peu and me
Cindy with Peu and me

Michelle Turner is a movement integration specialist and educator from Phoenix, Arizona.

Michelle_Turner
Michelle Turner

We are grateful to all the doctors, dietitians, therapists and hospital staff of the umpteen hospitals and clinics that we have visited so far, worldwide. Their support have enriched my experience.

My sister-in-law, Rahel Mathews, urged me to start a blog and share my unique experiences as a special needs parent.

Rahel with my daughter Peu
Rahel with my daughter Peu

We express our gratitude to one and all and seek your best wishes.

family
Peu with her Dad and Mom

Here I end my first post with a hope that my upcoming posts will be beneficial for parents.

A quick update in my first post: My brother, Dipangkar, who amidst his very busy schedule, edits all my draft posts meticulously before I publish them.