Because everything has been so muddled in the past few months, and because I have new readers, I'm going to try and do a lovely little summary of KayTar's medical issues and the current theories surrounding them.
KayTar has frequent (although we are currently on the second longest break since last July) neurological attacks, so to speak. The current theory is that they are a type of migraine syndrome, either paroxysmal torticollis or hemiplegic migraine. She experiences various combinations of the following symptoms during any given episode:
*Head tilt. This is the ONLY consistent symptom with every episode.
*Extreme light sensitivity
*Strange eye behavior, looks like they are flickering or rolling backwards at times.
*loss of conscious awareness
*drunk and silly behavior
*inability to use her legs
I think I might be forgetting a few things, but these are the major players. They last roughly 8 hours, although at the beginning they were only about 30 minutes in duration.
2.Lesions on her frontal and parietal lobes.
KayTar has 5-6 (I can't remember the exact number) of very small lesions sprinkled in these areas of the brain. Previously, we were concerned about the big scaries like leukodystrophy, that end in...well...the OPPOSITE of LIVING. But with this last MRI, no growth was shown and we feel safe in saying it is not progressive and the damage has been done previously. It doesn't sound wonderful when I write it that way, but it really is a HUGE relief. Children's brains are amazing and we've already seen such great strides with KayTar. The current theory is that her brain was damaged in the third trimester of my pregnancy, likely by a virus, the major suspect at this time is CMV, especially with the hearing issue coming to light. The worrisome thing about the theory of congenital CMV is the possibility that her hearing loss will continue to deteriorate and her vision might follow, I think it is a small possibility, though. Tomorrow I am scheduling a follow up with her ophthalmologist to make sure her eyes are still working well.
This is brand new from today! KayTar has moderate to severe hearing loss in her left ear. She was fitted for a hearing aid and we will need to see and ENT in the next few weeks before she receives her aid. The current theory for this is that is was also caused by a virus logically the same that caused the lesions, likely our friend CMV.
Oooh boy! I could spend hours on this, but I will spare you. She is extremely sensitive to certain textures, odors, flavors, feelings on her skin. The following things make her gag/vomit by touch alone:
And other things alone these lines.
When she is sick, her sensory sensitivities are kicked into overdrive, causing a complete refusal of all food and liquid. It gets so bad that we cannot even open food packages for ourselves in front of her, much less let her see us eat. It landed us in the hospital pretty quickly in January. I believe the theory is that this is also tied in to the lesions, due to the placement, though I'm not 100% on this one.
5.Eating...or lack thereof.
Again, I could go on all day. KayTar is in feeding therapy currently. She sees a dietitian. Because of her sensory issues, she is on a largely pureed baby food diet. She can eat some stage 3's if she's having a good day, but they are hit and miss. She can eat bites of things like crackers and french fries, but not enough to glean any nutritional value from them. She won't try any food that offend her texture preferences or things that are in small pieces, like Cheerios. A new facet of this is that she isn't really getting as much fluid as she need on a daily basis. She had fallen way off her growth chart when we switch pediatricians in July, and we've only been able to get her weight back up with a healthy regimen of Pediasure. About 75% of her calories currently come from Pediasure. As I said, this is largely tied to her sensory issues.
Ah, the art of Fecal Midwifery. We have manually delivered way too many twosies in our time as parents. KayTar takes two doses of Miralax a day, which makes things run much smoother. We will see the GI doctor in April.
We are actually beginning to close this gap a bit...it is nowhere near closed, but smaller than it once was. She is still quite delayed, especially with her gross motors skills, seeing as she just began walking at 24 months. She largely uses sign to communicate, but prior to that she had zero words. She has developmental, occupational, feeding, physical, and speech therapies on a regular basis. These are also linked to our buddies the lesions. Even though she is quite delayed in some areas, in many areas is is actually advanced. Her therapists are often wowed by her sign language acquisition or her attention to detail, correcting them when they say "Chicken" when it is really a "Rooster", little things like that. She is also a letter-whiz. She knows the alphabet, really knows it, not just by the song. She will see a letter on a sign and start reciting the alphabet from there. "P." "P Q R S T U V W X Y X." One of her favorite things to do is hand me the color to write random letters for her to name. The girl loves her letters. I won't take up too much space here bragging, because its not the purpose, but the girl hangs at both ends of the developmental spectrum.
8.Eye jerking. (for lack of a better term)
KayTar's eyes randomly and involuntarily, roll/jerk over to the far left. Sometimes it happens once every few hours, sometimes it can happen 30 times in 30 minutes. We have ruled out seizures and any big baddies hanging out in her lovely little brain, so this isn't all that worrisome, but being that it is quite odd, I'd like to get to the bottom of it. There really is no theory right now.
There is also the matter of her bendy little feet, but I don't think that needs its own bullet quite yet. I don't think its a big deal, but of course I didn't think she had hearing loss either! I'll keep you posted if that one makes the list.
I think that about covers it, if I remember something else I'll add it as it comes to mind. If you have any questions, leave them in the comments and I'll do my best to make things clear for ya! I'm off to have a stiff drink now, because seeing it all lined up like that makes me feel a little THIRSTY.
KayTar says "Thank you." for your time ladies and gent(s?).