Wednesday, March 28, 2007

In Case You Missed It: KayTar Medical Edition

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.

1. Episodes.
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
*altered awareness
*extreme dizziness
*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.

3.Hearing Loss.
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.

4.Sensory Stuff.
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:
Shaving cream
Cake frosting
Play Doh
Fruit Snacks
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.

6.Chronic Constipation.
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.

7.Developmental Delays.
We are actually beginning to close this gap a 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?).


Em said...

I was pregnant and had G in Belgium and every single month that I was pregnant they did a blood test for CMV and when she was born then tested the placenta... they were paranoid about it over there but I guess with good reason (I was never tested in the US or Australia where I had my other two).

I'm glad things are going so well for Kaytar - she really is amazing (all that alphabet stuff blows me away!)

natalie said...

M has to take Miralax, too. I'm sure glad they make that stuff!

Thanks for the concise representation of KayTar's med. needs. It was helpful to see it all at once.


Anonymous said...

I'm so glad the last several test results have been good. And the video of her walking was inspiring!

My husband and youngest son both go through times when their skin is extremely sensitive. Many times this past winter my son came home from school and took his shirt off- our house is drafty and cold, but he had to get as much off his skin as possible. They also get overheated pretty quickly (thus going shirtless doesn't bother them). My son has several food and chemical allergies and often has hives and behavior changes from them, so while not to KayTar's levels, I do understand some of what you go through.

So my questions- do any of KayTar's symptoms come and go? And how does she handle hot weather, or getting hot when she is active? Is she sensitive to temperatures? Thanks, Jill

Kyla said...

Jill: I haven't noticed any of her senstivities being tied to the weather or temperature. We've been through all of the seasons since finding out things weren't quite right and things have stayed the same. She does however, LOOOOOVE the wind. She loves to drive with the windows down or go out on windy days. She shreiks and laughs and flaps her arms around...its full body joy when its windy out. Other than that, we haven't noticed any responses to weather really.

cinnamon gurl said...

As one of your new readers, thanks for the summary.

You sound like you're taking all this in stride, but I can imagine that her episodes must be very overwhelming. It must have been awful, the symptoms and struggles she and you and your family must have had before the diagnoses... sometime I will delve into your archive for the answers.

Kristin said...

As a new reader I appreciate the official recap even though I kept pretty up-to-date with BBC.

She is amazing, BRAG AWAY about all her abilities--like the letters. Wow!

Easton LOVES the wind too. He thinks I make it ha ha!

Girlplustwo said...

honey. i am standing up and cheering for you right now. you are both amazing. so.

i am sorry about the hearing loss news - i was thinking of you all and wondering how it went.

motherbumper said...

Okay this caught me up because I'm a new reader and I had gleaned bits and pieces but now I have most of the picture. K is an amazing girl and the leaps and bounds she has made in this short period of time are mind blowing. She has great of strength (or all varieties it seems ;) and she must get that from her wonderful family.

I've fallen in love with the little lady and her handsome bro.

Mad said...

I just can't help but think of how hard each day must be knowing all the symptoms but not having any real concrete answers for the wherefores and whys.

KayTar and the alphabet? That is definitley bragging material.

OhTheJoys said...

That sounds so hard, friend.

jo(e) said...

Every time I come here, I am just overwhelmed by how much you have to cope with -- and how well you seem to handle it.

Run ANC said...

Every venue is the right venue to brag! I'd like to hear more about her letters and signing, actually.

I probably should know, but what is CMV?

Kyla said...

NoMo: CMV is cytomegalovirus. That link has pretty good information.

Julie Pippert said...

Kyla, thanks for the rundown. She is lucky to have such a bright, caring, on top of it mom (parents)

I know with special are lucky to have her too.

But what a list, Kyla. What a list. It made me a little thirsty, too.

Can I be nosey rosey?

Could any of the OT things for sensitivities help? I only know about the ones for PDD. I know the source might be different but the symptoms seems similar so I wondered.

Her signs and love of letters---with alphabet!---are awesome. Brag. :)

We had to use Miralax for a long time. I see it's OTC now! TG for Miralax.

Now that mine is 5 we can do better about eating, thank goodness. We weaned off Miralax onto daily Benefiber, then cut that back to "as needed."

Sometimes I get tired of thinking about poop, but then I remember how much better it is now. I just shuddered remembering the days of constipation. Oh the agony. I wish I'd had Fecal Midwifery in my vocabulary then. It would have at least given me a moment of absurdity to lighten up with! :)

And "You're welcome" to the lovely little Kaytar who let us borrow her mommy for some time. :)

Kyla said...

Julie: She's in OT...but I don't know how much she's getting from it. She such an odd sensory kid that I think the OT doesn't quite know what to do with her. She already loves things like toothbrushes and vibrating and other typical desensitizing things. If you have any suggestions, I'd love to hear them.

thethinker said...

What an adorable little girl. It must be a lot to handle, but it seems as if you're dealing with it very well.

Amanda said...

Arrived via Slouching Mom, stayed for KayTar. I wish I had somethinig to contribute otherthan oyu are incredible, as is she.

AJsMom said...

New reader here...that's why I had to follow the link to your medical journey. I am the mother to a 26-week preemie who weighed only 18 ounces at birth. We were bombarded by all of the things that could be wrong with him...amazingly, he is doing very well. KayTar's (and your) story is really inspirational. She sounds like a very lovely little girl who has a lot of promise and a great family.

Anonymous said...


Thanks for this post, I've been very curious about Kaytar's history and current issues.

Now I know why I felt so in tune with all the stuff you are describing, being a fellow CMV mom myself.

Ethan also has intracranial calcifications, which we assume is the reason for his motor delays across the board. Our latest news is apraxia, so thank God for sign. He loves the Siging Time videos, does Kaytar watch those?

I'm so very sorry to read about the hearing loss, but having been through that I can tell you that modern digital hearing aids are truly amazing, and if she ends up with a profound loss you could always go the bionic route that we took. Such big things to consider when your plate is already full.

We've also got the sensory stuff in a big way, as well as the developmental delays and problematic vision. And we've had the EEG and have seen some weird jerky behaviors with unexplained eye movements. And he doesn't like to sleep, I can't remember the last evening that my husband and I had time alone together.

So friend, I just wanted to let you know that you're not alone! I think one of the biggest keys to success is staying on top of everything and just dealing with it as it comes, and you are obviously doing all that and then some.

Please email me any time you want to talk, or share resources. If you're like me you've got a stack of books that you're waiting to wade through. If you'd like to see my reading list or borrow any books from me I'd be happy to send them to you.

Keep your chin up, Kaytar is a smart little cookie who will get through this rough time.


joker the lurcher said...

its really interesting to read all this - i have been following your blog for a while now and its really inspiring.

i have a 12 year old son who is autistic - many of the sensory issues you talk about have echoes in autism. my son wasn't diagnosed until he was 6 so we had many puzzles about his sensory issues and bendy feet and other joints. i know a lot of autistic kids also have the gastro stuff as part of their condition.

is autism something that has been considered as part of all this?

keep writing your wonderful stuff! love to all of you.

Family Adventure said...

Thank you for the synopsis. Your little girl is truly special! And so are you, for sharing your journey with the world.

I hope they find some answers from the latest spinal tap, but I am SO RELIEVED to read that the current theory is that this is not a progressive condition.

Thanks again and I will be checking in with you soon.

- Heidi

Nora said...

I have learned a lot reading this, just found you. Go you! Go KayTar!

Anonymous said...

WOW! My hat is off you and the beautiful Kaytar.

Allow me (a complete and total stranger no less!) to be an armchair doctor for a moment. On the eye movements. Has the optho ruled out Nystamus?

I can't imagine how stressful this is for you and your husband. Please Please Please make sure to avail yourselves of respite services and take care of yourselves and your marriage it is vital to the long term success of Kaytar.

Stacy said...

Wow, that is quite the list, but glad that things seem to be going better. I hope she continues to get better, and the therapies help her development. It is amazing what they can do these days, its so much better than when we were born many moons ago. There is definitely room for hope these days. :)

BB said...

OK Just checked this out to inform myself a little better. You sure have been (are going through?) the ringer. My Dash tested us out as new parents too. When something is wrong with your kids, it's a tough journey. By the same token, I think I get the most exquisite joy from my kids - in part, because of what we have been through. I know the alternative - stared it in the eye. You too, it seems.

Good luck with the therapies and the insurance. We're "rooting" for you (another Americanism I don't quite get!).


The Sanchez Family said...

New reader here. What a beautiful family you have. I don't know if you have any spare time to read but the book..."What to do about your brain injured child" by Glenn Doman might be an interesting read for you. It won't help diagnose your daughter but will give you hope and practical suggestions for helping her "grow" her brain and reach her full potential. Good luck and I look forward to following your journey.