Peu is 13 years old and around 9 years back we received her CDKL5 diagnosis.
You’ll agree, a decade means, countless experiences, lots of learning, and transformed lives. In this post, I’ll summarize and highlight some major lessons that we’ve learned over the last ten years or so. She is primarily med free in all respects.
The most promising part of this period is the progress in the research of gene therapy as a cure for CDKL5 disorder. There are multiple organizations, dedicated parents, scientists, and institutes engaged in research and trials. The progress can be attributed to the relentless efforts and contribution of CDKl5 parents some of whom have become scientists to accelerate the progress. We envision that in a matter of few years, every baby in the womb, if screened positive, can be treated. Consequently children will be born free of this disorder and parents will never have to witness terrible seizures in a week or two after the birth of their little one.
Prior to diagnosis: Until her diagnosis, we experimented with numerous drugs and therapies to control her seizures. In retrospection, we feel we were insensitive to her pain as we were solely focused on containing the seizures. She broke her limbs, and had to undergo health issues such as fall in platelet count, severe acidosis, repeated lung infections, trembling of eye balls, and high BP. Eventually, we discovered and accepted that seizures would be a part of her life. If parents accept this early on, it will reduce a lot of suffering for both CDKL5 children and parents.
After the diagnosis, we focused on the other health aspects to make her life comfortable and pain free. Our new goal post the diagnosis.
Patience, observation, and awareness are the primary tools to overcome the health challenges that Peu has faced.
Peu has had seizures from birth. For her a trigger is a loud sound, an infection, gas and indigestion, deficiencies, If i can manage these, seizures are milder and shorter. As she has grown up, the intensity and frequency of clinical seizures have reduced. You can read all about our seizures experience here. As she sets into her teenage years, her seizure patterns seems to be changing. We’ll need to observe and understand.
Therapy and development: Because of frequent seizures and her genetic mutation, therapy has not been effective. Nonetheless we’ve tried several without any substantial results. However, we do follow the core principles of Feldenkrais method and Anat Baniel Method when we pick her up, make her sit or work with her vision. Amazingly her body manages to set in some development every year. She cannot sit, stand, or walk on her own, but her cognition improves. This progress could also be due to all other digestive issues that have vanished. We tried numerous therapies which are summarized here.
Food and diet: She has overcome all the digestion related issues such as constipation, acid re-flux, gas, bloating and consequently sleep disorder and mineral deficiencies. These are all interrelated and are reversible. One simple solution is work on her food/diet which led to her overall well-being. We had tried the Ketogenic Diet too but it didn’t help. Read our three years of experience with the Ketogenic diet.
It has been a decade of experiments to finally nail down the most conducive diet for her. This is unfortunate because had we adhered to Ayurveda guidelines, she could have recovered much earlier. Nonetheless we have found our way.
For Peu vegan and satvic (no onion, no garlic) diet works best with, no gluten, no milk, no soy, no corn, and definitely no processed food. This means she has freshly cooked veggies, rice and pulses using indian spices (cumin, coriander, turmeric, and ginger). Fruits (one sweet/ripe fruit at a time) are a snack meal of its own. Puffed rice, millets (occasionally in less quantity), nuts (soaked overnight) and dates are also part of her diet. And that’s all. All her digestive issues have resolved on its own. No gas, no bloating, no indigestion, which results in a good night’s sleep each and every day, no seizures at night, and a seamless bowel movement in the morning. We seemed to have achieved our goal.
Concern about protein: Where is the protein? Typical question isn’t. We discovered that when we consume non vegetarian food, body assimilates and extracts amino acids from them. Factually most of these amino acids are present in fruits as well. One caution about consuming fruits is that we give her only one fruit at a time and make its as an independent meal of its own and not club it with some other food item.This helps to avoid any bloating particularly when he has ripe papaya or musk melon.
Natural remedies: There are days when some overeating or indigestion may happen, then aamla (gooseberry) and ajwain (carrom seeds) are effective remedies. Besides, we skip a meal or we delay it until her bloating subsides. She loves to eat and occasionally we do treat her with junk food such as chips or desserts to please her taste buds, but moderately. She had been having dietary supplements such as Nano VM which we are gradually weaning off.
Viral infections: She does get sick with the usual viral infections that happen to all kids during season changes. However, it lasts for 3 to 4 days and fever last for a day which proves her immune system is fine. During these infections, seizures are relatively more intense than usual. Such a seizure indicates an infection. During infections, we apply natural remedies to aid her recovery from within.
Food during travel: During travel, we prefer to drive rather than taking flights. One arrangement that is essential part of our travel is keeping her food items handy, light, and easily available. Fruit such as Banana, Apples, Grapes. Dry fruits such as almonds, walnuts, and dates and grains such as puffed rice are her travel snacks. In restaurants and hotels, satvik food usually known as Jain food is easily available. Hence we can travel peacefully with no worries about her food requirements.
We seemed to have found a way to ease her from unnecessary pain and discomfort.
In conclusion, simple, easy to digest, and fresh food has helped Peu recover.
We look forward to receive your feedback and suggestions. and will be happy to answer any queries.