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.

 

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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.