Well Miss Makayla is officially 4 years old. Where does the time go? I remember when she first got diagnosed and I said everything in terms of ' oh by the time she's 5.....' well now that's only a year away! Wow! I suppose all my hopes and ideas for how far along Mak would be by the time she turned 5 may not be met but my how far we have come. Her therapist ( one of many) said to me the other day, Makayla is one complex little girl! Boy I thought now there is an understatement! This same therapist told me the other day that she felt Makayla had a couple of seizures that morning, she described this behaviour as Mak being very happy in an activity when suddenly she shrieked and her arms trembled leaving her irritated and unable to focus. Hmmm I thought, this sounds very similar to what I had been experiencing during the last few nights, I had taken some video just to show the unbelievable pitch of screaming that came out of a sleeping child. I had presumed pain, perhaps some sort of muscle cramping, I also had seen her do it a few mornings earlier to the point of me taking her to the walk in clinic to have her ears and throat checked, ( she was pulling on her ears as if she hoped to pull them right off, cycled with biting her own wrists in what I can only guess as a behaviour to numb the pain!) Not much phases me after all I have experienced but to truly think about this, a pain must be pretty unbearable that biting your self repeatedly feels comforting,( this very thought saddens me beyond words that no amount of nurturing and love I have can soothe the pain).
After being instructed to send the neurologist a videoed episode of the torment this poor peanut experiences on an increasingly regular basis I finally caught what I needed. Today the Doctor replied that he felt strongly that these episodes were not seizure activity but rather a very rare form of spontaneous pain more particularly esophageal spasm that occurs in rare cases of infants and children with neurological disorders. The pain is sudden for unexplained reasons and is similar to that of the pain of someone having a heart attack. So his nurse sends me an article to read entitled infants and children with mental retardation suffering from paradoxyl blah blah blah. WORST TITLE EVER!!!! What parent would ever want to read something titled anything like that about their kid? Well I read it intently, and boy did the case study ever embody Makayla. Ugh!
Well the good news is no new anti seizure meds, ( thank the Lord!) There is medication that seems to slow the spasming down so starting on Monday we embark on a hopeful mission to end what most likely has been a 4 year mystery journey of pain for our monster. May there be peace at the end of the new medication rainbow!!!!!!
Thank goodness for the hope of relief!!!! Good job mama bear for persisting :)
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