All CDKL5 parents eventually realize that seizures are a part and parcel of their child’s lives and it is indeed a fact. However, we parents spend majority of our time trying out various medical ways and means to control the seizures. In reality, we need to rethink this strategy.
I was also in the same band-wagon for the first four years. But we (Peu’s dad and I) took a decision of not using any medicines for seizure control and have stood by it since then. Our strategy is unconventional and many parents might not like it. Nevertheless, I will share our learning experience from Peu’s seizures and how we reached to the above decision.
I do not intend to explain what a seizure is and what are the different types of seizures. We parents have seen it all, tonic, clonic, partial, complex, absence, infantile spasm and so on and for Peu it was from the second week of her life and still goes on. Many of us have maintained 5-6 log books with gory details, captured videos, discussed the episodes with our doctors but now if you look back, was that needed at all?
Imagine the plight of the mother, see her child seize and then log all the details in a notebook: the timing, the type, the focus, the movements breathing patterns, after effects and so on and not just once in a day, each and every time. Are those log books ever revisited by any one? a big NO!!! The videos are all there in YouTube. Enter the child ‘s name and you will see all the types of seizures at different times. But usually if I revisit those videos, it is painful to watch them. Believe me it is torturous!!
How happy a mother is when she sees her child smile.
But could you imagine our misfortune, this smile is a precursor to a seizure.If we observe her eyes closely, we can identify mild jerks. So every-time Peu flashes a smile, we get alert and saddened!
I can describe more about her seizures, but I need to get back to the reason behind our decision.
My experience says, there are three types of seizures:
- Controlled by medicines
- Controlled by surgery
- Not controlled by medicine also known as refractory seizures.
Peu’s seizures fall in the third category. Mostly all doctors say, if a child does not respond to two anti epileptic drugs, it is most likely, the child will not respond to any other. However, they also ask if we want to try a few more. We parents, still hopeful, keep on trying different meds. For Peu we tried eight anti epileptic drugs including ACTH steroid, twice. At one point of time, we pumped her with 5 meds at a time besides injecting high dose ACTH. This is what you get when you inject ACTH to your child and there are more deadly issues related to it.
We finally had to wean off ACTH as her BP had shot up too high. We still had not tried two other meds, Zonegram and Topomax. I plan to write another post on her medicines and their effects. Hence will not write any more about it here and will focus on seizures only.
While on ketogenic diet to control her seizures, we took a decision based on a single valid point: If she gets seizures despite having medicines then she might as well have them without the meds and without the dangerous side effects of the meds. Henceforth, after 3.5 years of continuous medication, with support from her neurologist, we could finally wean her off all medicines. That is the best decision we have taken and still stick to it. No more anti epileptic drugs for Peu.
We also do not intend to try Cannabidiol (CBD) or Charlotte’s Web (cannabis) or Hemp oil. We have not come across a single CDKL5 parent who claims that his or her child is 100% seizure free from CBD. Hence we do not want to go into another try, wait and watch activity, because we have accepted the harsh reality that seizures are a part of her life.
Meanwhile, we constantly thought about how we could minimize the seizures naturally. All doctors say that stress acts as a trigger for seizures. No one other than mom & dad can understand their child, the best. We discovered, that for Peu, loud voice and loud noise was the stress factor. Nothing more, nothing less unless if there is an infection in her body. A striking fact: While she was in NICU at one month of age, for seizure observation, not a single odd movement, tick, jerk or spasm was observed. The primary reason, she was kept in a completely silent room with no noise or loud voice at all. Back at home after discharge from NICU, her tonics started, because there was noise everywhere and always. We have seen this behavior multiple times at multiple occasions. We are confident of our discovery.
Currently, our strategy to control her seizures is to keep her in a silent environment as much as possible. There were times, when we used to literally whisper among ourselves. Is it feasible always? No, I agree but that has worked as a 100% solution for us. Besides we also have been working on her auditory sensitivity and auditory processing issues.If we keep Peu in a soundproof room, she will be seizure free. But this is ideal not practical.
We saw some development in her, only after reducing the noises and stopping all meds.
To reiterate my point, we as parents need to identify the stress factor for our child. It could be different for each child. Once identified, nullify it, you will be surprised with the results.
I am sure, parents will have lots of different opinion, questions and apprehensions about this post. This is completely my perspective and might not be appropriate for another child. However, I look forward to some advice, queries, recommendations and comments from parents.
Note: For detecting, if your child’s seizures can be controlled via surgery, as per my experience, Dr Harry Chugani from Detroit, Michigan would be the best to consult with. He is very responsive to emails as well.
Look forward to comments and feedback from parents.