Every parent knows watching your child in pain is one of the hardest, most heart breaking things we do. It is impossible to sit an watch helplessly as your child is in sick or hurting. Waiting and not having answers is like driving bamboo shards under one's nails... it truly is torture.
Well, while we have continued in this limbo of knowing there is likely a seizure disorder going on but not being able to get into the neurologist David's condition has progressively gotten worse. We started noticing that he was shaking more often, and was having increased incidents of more intense tremors. Earlier this week I took David in to see the pediatrician again and after examining him, his pediatrician gave me the bad and good information... He has clear neurological symptoms and needs to be seen by the neurologist as soon as possible.
Why is this bad and good? Well clearly the bad is there is something wrong with my child and that something is serious. The pediatrician noted that his neurological symptoms not only included his now constant shaking, but also an inability to control his tongue and some of the muscles around his mouth, changes in his gait, and changes in his speech. He referred us to another neurologist, as we still have been unable to change our January 22, 2013 appointment with David's current neurologist (Luckily we were able to get into the new neurologist today...more on that later). So what could possibly be good about this? At least we are beginning to get some answers.
Unfortunately, his condition is progressing rapidly. Since seeing the pediatrician on Tuesday, David's motor skills have decreased significantly, the shaking and tremors have increased, his speech quality has decreased and even his cognitive skills seem to have decreased. Yesterday he started complaining of pain in his eye, and by this morning he was unable to open his eye for periods of time. Luckily we saw the neurologist today.
After giving an initial history and exam we were told David was presenting with Parkinson's symptoms. His eye pain and inability to open or see from his eye was due to muscle spams that can occur in the eye muscles. The neurologist believes the severity of the symptoms are likely due to one of David's medications. Apparently, it is possible to be on this medication of a significant period of time and still end up having this reaction (David has been on this medication for a little over a year). So after the neurologist and the psychiatrist consulted we all agreed David would stop this medication immediately. This should decrease the symptoms completely, however both doctors are unsure of how long it will take until the symptoms extinguish. Unfortunately, David is unable to attend school or karate in his current condition. We are concerned because we know he is falling behind, but even while at home, he is unable to do work.
David had more blood work done today and will have both an EEG and a MRI next week too try to identify the seizures. In the meantime we are left watching helplessly as he cries in pain as his eye spasms; try to help him hold onto and take his medication because he is not only shaking and having tremors but also because he does not have full control over his mouth and tongue muscles; lead and/or carry him from place to place because he can't open his eyes; and watching as David spends the vast majority of his time sleeping because he doesn't have the energy to do anything else. Yup, this really sucks! Watching, knowing I am doing all the right things and still feeling helpless. Knowing I can't do any more than what am,what my gut tells me to do, what I have been told to do by multiple doctors... waiting for his body to adapt, for the medication to get out of his system; waiting to have more tests and waiting for results... waiting to get my fun loving, baby back.
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