My Evolving Thought Process

This post is all about how I changed my notions. I share a few personal experiences of Peu, my daughter who is diagnosed with a rare genetic disorder (CDKL5). These simple experiences have helped me remove some of the misconceptions that had been with me for some time. Many parents will relate to the situations that I have described. However, you might have had a different approach or a different outcome of those real life events.

• Our repeated hospital and emergency room visits started just after two weeks of Peu’s birth. During the early days of our hospital visits, we were terrified and looked up to the doctor with a strong belief that he /she can cure everything. I thought, we just need to leave everything to him. This was a wrong notion. Doctors are highly qualified, skilled and have vast experience in their field. They always strive to provide us the best treatment option. However, what we forget is we know our child better that any body else. Doctors will  be able to support us better if we help them with our personal inputs & observations.
  During one of the hospital admissions, we were advised to go for a feeding tube for my daughter because seizure patients have a very high risk of aspiration pneumonia and it would be best to start with a NG tube and then move to G tube. I was dismayed with this advice. Peu has never had trouble to swallow, she loved her food and enjoyed her meal times. How could I rob her from the only thing that she enjoyed and make the whole process mechanical for her entire lifetime? I opted not to put a feeding tube for my daughter. It was huge risk on my part but I have no regrets. I was extra cautious during her meal times. Today she chews and uses her teeth and simply loves eating her food by mouth. During her recent swallow test, the speech therapist was amazed at her mouth skills despite the other issues. Trust your (mother) instinct, take charge and be the one to make decisions.

• We tend to rely on medicines for each and every issue that our child faces. Until and unless it is an emergency situation, could we work harder to help our child to cure naturally? Every human body has an innate capacity to heal herself or himself . Our body constantly works to identify and fix health issues but it takes some time to see the results visually.
  As a side effect of ketogenic diet, after two plus years of being in the diet, she faced acute acid reflux and GERD symptoms. I was advised to start with a medicine and if that did not work in 15 days, try another and also to get a few tests done. Since it was not a life threatening issue, I decided, first to allow her body to heal by itself and aided her in that process. I did a thorough research on acid reflux and educated myself with all details and available routes of prevention, treatment of symptoms and cure. I made some dietary changes, used a few natural products to aid digestion and stomach acid secretion, reduced her food intake for a few days and constantly observed the effects. After three months, Peu was free from acid reflux, naturally. I follow the same route to fix her constipation issue. Trust the natural healing power of your child’s body.

• We think seizure medications are our child’s rescue medicines and all our concerns are silenced by a single belief that the benefits of these medicines outweigh their side effects. How can we be so sure of this, when none of these medicines have been tested on children under four. Besides, where is the data to show the effect of these multiple drugs working together in a body? Our kids are having these from as early as one month!Here is a list of anti epileptic drugs that I gave my daughter and their effects:
  1>  Phenobarbital : Rashes after 10 days. Hence stopped after 10 days
  2> Valparin/Depakote: Started at 1 month and stopped abruptly at 3 years. Her platelet count had fallen to a dangerously low level.
  3> Keppra: Started at 1 month and weaned off at two years. Her eye balls used to tremble.
  4> Rivotril/Klonopin: Started at 6 months and weaned off at 3.5 years. I think her hypotonia worsened with this medication.
  5> Vigabatrin/Sabril: Started at 7 months and weaned off at 1.7 years. She was extremely drowsy always.
  6> Frisium: Started at 1.year and weaned off at 1.2 years. She was completely inactive and drowsy.
  7> ACTH: Gave her ACTH injections twice, once for a month and another for seven months. We had to suction her every few hours with a suction machine to remove the fluid accumulated in her throat, so as to maintain her oxygen level. Besides, there were numerous other effects of high blood pressure, repeated infections, sleeplessness, continuous screaming, constantly hungry.
  8> Prednisolone: I was told to use it as a weaning drug for ACTH. I am unaware of its benefits and effects.
  In the course of 3.5 years of giving Peu so many medicines, never did we see any prolonged period, free from seizures. On the other hand, she got into emergency situations because of the side effects, where we faced the risk of losing her. However, after stopping all medicines, we had two prolonged periods ( 1 month and eight months) of seizure free days and conspicuous development. During this time she was on ketogenic diet. We have also figured out that if she is in a relatively quieter environment, her seizure control is the best. Use a max of only two anti epileptic drugs at a time. Try the modified ketogenic diet and work hard to figure out a natural way to control the seizures.

These and several similar instances have been instrumental in changing my mindset/approach to handle the daily challenges and helped me to evolve into a sensitive care giver.

Before I finish my post, I want to bring forth a question that has been in my mind for some time. I do not claim that I am right but it is a food for thought for all parents. Do share your thoughts about this point.
Children born with CDKL5 genetic disorder, usually have no issues during and immediately after birth. The mother’s pregnancy is normal as well. This genetic disorder originally presents itself as early seizures, hypotonia, CVI, acute development & cognitive delay. However, we see several other issues cropping up as years pass by, such as scoliosis, feeding issues, sleeping issues, breathing issues, cardiac issues, motility issues, status epileptic-us, and immune compromise. My query is whether these additional issues are the consequences of adding so many drugs into the child’s body from as early as one month after birth?

I look forward to your inputs and comments.