Tuesday, August 19, 2008

In Case You Missed It: KayTar's Medical Hoopla, V 2.0

I recently discovered a little something on the Internet. An answer to my organizational prayers, as it were. The Google Health Beta. I was able to convert all of KayTar's medical information into a handy online format. Her conditions, her medications, her doctors, her tests and results, even her immunizations, all of it right there online. I was even able to input the details and dates of each and every one of her neurological episodes. Now that her records are organized and arranged, I thought this would be a good time to post a little medical update. That one over there on the sidebar is a little outdated, although, most of the information is still mostly accurate. So if you're a newish reader, this might give you a little insight into our confusing little KayTar.

1. Pesky little brain lesions

KayTar has a sprinkling of small lesions in her frontal, temporal, and parietal lobes. To quote the magazine article,
"MRIs have revealed lesions in her brain, which are thought to affect everything, including her hearing (she is partially deaf in one ear) and her ability to eat and digest food (KayTar survives on a mostly liquid diet)."
To quote the official MRI report,
"There are somewhat patchy appearing foci of increased T2 weighted signal in the subcortical white matter of the parietal lobes as well as a couple of foci in the frontal lobes. There is also a greater than expected T2 weighted signal in the subcortical white matter of the temporal regions and subinsular regions. This pattern of signal abnormality is non-specific and could be the sequela of a previous insult as might be seen with a congenital infection including CMV (although no parenchymal calcification on remote CT)...prior infection, demyelination, ischemia...less typical for a metabolic disease."
I prefer the short magazine quote myself, but I know we have some of you medical types out here that might like the technical description.

2. Developmental Delays

At one point, her delays were global and severe, but as we've worked with her in therapy and at home, she's quickly closed her gaps. She would probably look like any other child if you met her these days, as long as it wasn't on the playground. She struggles a bit there. She is starting the special education preschool program next week and will be receiving speech and occupational therapies while in school, and she will be in private PT and OT as well. Although her motor delays are now the most striking, she did not qualify for PT through the district. Her orthopedist prescribed 2-3 session per week for her, so we are taking care of it privately. The private OT is meant to assist with her sensory aversions and feeding difficulties.

3. Feeding Disorder


KayTar gets the majority of her nutrition through her bottle of Pediasure. Yes, she is three. Yes, she drinks a bottle. Yes, we are okay with this. At this point, taking the bottle would likely result in a g-button, so we're just fine with the bottle. KayTar has very strong sensory aversions, especially where food is concerned. She also doesn't appear to feel hunger, either. You know how they say, "Kids won't starve themselves."? Well, she is one of the exceptions. She will starve herself and she won't even realize it. She also has a long history of vomiting. So we're left with a child who doesn't LIKE food, doesn't FEEL hungry, and strongly believes that FOOD=VOMIT...it really isn't too surprising that she doesn't eat. She snacks and picks at her safe foods, today she had a small bowl of her "Lay's Classics", but we can't even depend on her eating her safe foods reliably. Food is optional to her, there is no internal need for it, and her intake is perpetually unpredictable. On a good day, we can get her to eat a couple of stage 2 baby food jars. Thank God for Vanilla Pediasure with Fiber (which is the ONLY kind she will take), without it, she'd be in bad shape. This gets us into trouble when she is sick, because she will often stop eating and drinking completely, leaving us teetering on the edge of dehydration and at times, landing her in the hospital with an "Ivy" as she calls it.

4. Hearing Loss


KayTar has sensorineural hearing loss in her left ear. She wears a cute little purple hearing aid. The loss is moderate to severe, she can hear things like jet planes and lawn mowers, I think. Lately she has been mishearing me a lot, so I'm anxiously looking forward to her next ABR to make sure it isn't deteriorating further. The type of loss she has, coupled with the lesions, makes them think her hearing could deteriorate further, so she has bi-annual hearing tests to keep an eye on things. While we were without insurance, we had to skip her appointment and she hasn't been tested since November 2007.

5. Asthma


This one is pretty minor really, but before starting her on the controller medication, she was vomiting nearly every night from the coughing fits. We always thought, "Oh, that's just KayTar." but once the medications took effect, we realized it wasn't just a quirky KayTar thing, it was asthma! Fancy that! The pediatrician noted some wheezing and a prolonged expiratory phase on exam, too. It took a bit to get it under control, but we haven't had to give her rescue inhaler in a while, and the last time she vomited in her bed was from an episode, I think it is working pretty well. When she comes down with something, we end up having to give her the rescue inhaler, but when she is healthy, we've got it under control.

6. Chronic Constipation

It is well-controlled with a twice daily dose of Miralax, but there was time when it was a pretty grizzly scene. It caused me to coin the term fecal midwifery, if they helps you visualize what was happening. There was one time I thought I was going to have to pack her into the car mid-delivery and rush her to the ER. Thankfully, I was able to fix it...but that was one of those lovely parenting moments I won't forget.

7. Neurological Episodes

This is the difficult one, both to explain and to live through. We believe her first one was about at 6 months of age, but she didn't have another until 14 months. Then at 17 months, they started coming quickly. 2 weeks, 2 weeks, 2 weeks. The pattern has loosened some with time. She's had 34 of them in her little life. The predominate thinking is that they are manifestations of some sort of an atypical migraine syndrome, and the way we describe them to people is "migraine-induced seizure activity". The term migraine doesn't quite convey what happens to our sweet girl. People tend to think it is a headache, but that is far from the reality of it. The presentation used to include an intractable head tilt, but is now a varying combination of pain, light sensitivity, vertigo, involuntary eye movements (rolling, jerking, appearing to be stuck in odd positions), vomiting, and always, always she has an altered level of consciousness. This is the part that rips my little heart out and stomps on it, seeing my bright and beautiful girl suddenly slip away from me, the part of her that make her HER ripped right out of her. She stops responding to us, stops moving, stops opening her eyes. That is the part that always makes my heart stop...my little baby suddenly nowhere to be found, even though I'm holding her tight in my arms.

****

There are other little quirks that make life interesting, but those listed above are the major players. She has a genetic mutation on her 19p13 chromosome that is thought to be inactive. Her glucose levels tank when she gets sick, but she looks just fine. She has an ataxic gait. Her joints are hypermobile. She doesn't react appropriately to cold. She has been reading for over a year. She still has those spontaneous eye movements that look like small seizures. She is wobbly. She gets sick easily and seems to have an affinity for strep. She needs to wear glasses. She's quirky. She's had MRIs, CTs, LPs, EEGs, and ABRs. She's had chromosome analysis and metabolic work-ups and labs out the wazoo. She sees a pediatrician, neurologist, geneticist, gastroenterologist, ophthalmologist, feeding disorders specialist, audiologist, ENT, and an orthopedist. We have to get her medications at a compounding pharmacy because we can't give her oral medications. She has a huge medical file that weighs as much as she does, full of questions that mostly don't have answers. In the end, though, she is just KayTar. Not too long ago she was a silent mystery, mostly shut off from the world, and we desperately grasped for answers so we might know something about her, anything at all. But as time has passed, whatever it is has loosened its grip on her and we've gotten to know her, her laughter and tears, her silliness and love for the stage, her favorite things, her little habits and quirks. We know the things all the things that really matter, so suddenly, the things we don't know don't seem to be quite as important anymore.



****
Quick update: It is probably time for another version of this, but as we're waiting on a couple of sets of test results, I'll just add a quick and dirty update to this post.

In November '08, KayTar had a g-tube placed to improve her nutrition and intake and is doing really wonderfully with it! She's up to 32 pounds as of her last check! She also had a muscle biopsy to test for myopathies, specifically mitochondrial disease. We are still waiting on these results to come back. She had her tonsils and adenoids out to cut down on her rate of infection. She also had an ABR that showed her hearing loss in the left ear has progressed to the profound levels, her hearing aid is no longer able to help her hear.

In December of '08, she had a fairly dramatic allergic reaction and we are currently awaiting results of her allergy tests. We now carry an epi-pen for her, just in case!

I think that is the latest!

31 comments:

InTheFastLane said...

And that last part is the most important. She is not a collection of medical mysteries and procedures. She is your little girl and she fills your heart. How wonderful her verbal skills have been to allow you into her world, a little bit at a time.

flutter said...

she is just such a beautiful little puzzle

amanda said...

All these quirks and yet, still a funny, beautiful child that brings tears to all of our eyes when she sings Twinkle, Twinkle. Thank you for sharing her with us.

Gwen said...

I missed this the on your way through the beginning of it, and honestly, I'm kind of glad I get to see the picture from the beginning of the other side. Because I like hope. Hope and faith and deep, abiding love: all good.

jen said...

pesky brain lesions? holy shit. grace? triumphiant. every single time.

Anonymous said...

Ahhh Flutter said it perfectly.
Love Cori

Kristin said...

Even though I feel like I "know" KayTar pretty well...and I have actually met her...I still appreciate these explanations.

And the last part is perfect. I love getting to know KayTar even more as she grows and develops.

Magpie said...

You're astounding.

Thanks for the summary...she is a conundrum. And a charmer.

Junie's Blog said...

She certainly is a one of a kind. So much for one tiny little girl. wow.

KC said...

Further evidence that Google is awesome.

I wish I could meet her in person now. She is beautiful.

Hetha said...

Wow, I just cannot believe the striking similarities between Kaytar and Ethan. It's remarkable! And thanks for the google health tid-bit, I'll be checking that out here pronto.

Loralee Choate said...

I am SO glad I found you! And she is a wonderful kid that IS more than her medical issues.

HUGS.

AJsMom said...

She is an amazing little miracle blessed with an amazing family.

Don Mills Diva said...

Wow.

I'm with Flutter - a beautiful little puzzle indeed.

~aj~ said...

I think I knew almost all of that already and yet reading it still left me speechless. All I can think is "wow".

Such a special little girl.

Jenny, the Bloggess said...

I just went and bought the Self magazine and made everyone in the convenience store look at it. Then everyone in the office and elevator.

Schmutzie said...

I am so glad for your family that whatever was keeping her locked away has let her out so that you can know your beautiful little girl.

I grew up with an older brother who has multiple issues - scar tissue on the brain from in utero strokes, cerebral palsy, autism, epilepsy, etc. - and he was the light of my life growing up.

Kaytar is blessed to have you.

Bon said...

what a pile of medical hoopla...a lot to deal with.

and what a lovely girl...so much more.

Bennie said...

Wow. It's amazing how much Kaytar & Ben are alike. I sure would like to be able to dump that G-tube though. Living with a family for a week whose PKS child gets nutrition via a bottle is far better than carrying around a feeding pump everywhere you go.

Janet said...

Your last sentence under Neurological Episodes made my heart stop. She is your little girl and she's awesome.

Lisa b said...

great update Kyla
I do like zip of the article summary but a little medical jargon always makes my day. Julia's MRI kind of makes more sense to me now.
oh metabolic disorders and CMV they get all the blame.....

I did really like the article. All of the stories just stop me cold. How could this happen in American? How can it be allowed to go on?

PJ said...

You write so beautifully, Kyla. I do hope you'll put this all in a book someday! And what a blessing to find an online resource...next time there's a new Dr., etc. it's all right there!

kittenpie said...

Sigh. I"m so glad she has someone like you, who sees her for her, who loves her person more than her mysteries.

womaninawindow said...

You almost need a computer program to keep track of it all. You react in your gut though in the briefest of moments. You know it all in your bones.

Gorgeous child.

NotSoSage said...

Sniff.

I am just so pleased every single day that you two found each other in this great mess that is the universe.

Kelly O said...

I'm so, so, so glad things are getting sorted out, bit by bit. She and her brother are jewels. You've made some beautiful babies.

Karen Putz said...

She's quite the cutie!

Have you heard of Hands & Voices? www.handsandvoices.org. We have a couple of families with kids with unilateral hearing loss. :)

Deb said...

"But as time has passed, whatever it is has loosened its grip on her and we've gotten to know her, her laughter and tears, her silliness and love for the stage, her favorite things, her little habits and quirks. We know the things all the things that really matter, so suddenly, the things we don't know don't seem to be quite as important anymore."

It's funny how that happens. One day you realize that it just doesn't matter, that she is who she is. I'm glad she has you for a mom.

kia (good enough mama) said...

I do believe that you and Kaytar are my new heroines. YOu've both been through so much together. I admire your strength and her resilience.

Jaden Paige said...

After seeing your WW post today, I got curious and clicked the linkies on the side to read more about Kaytar.

What a heavy load for one little girl to carry and live with throughout her life. I don't think I can say it better than flutter did- she is just that, a beautiful little puzzle.

You are an amazing Mom. Thank you for sharing your life with us! *hugs*

therextras said...

I cannot say I have ever seen a child with the particulars you list. However, I may have - but there were less sophisticated diagnostic tests - leading to more general naming - like CP.

Thank you for leaving a comment on my site, and I will bookmark yours for regular reading. Barbara