Past Due Update

I cannot believe it has been 18 months since my last update.  I am so sorry we have not been active here!  Life has just been so, so busy.  In May 2015 we added baby #4 and it really threw me off, I have not been able to do much other than care for my kids and work my jobs.

In May 2015, soon after bringing new Baby Brother home, my mom found a lump in Kimber's neck that concerned her, I kept an eye on it for a few days and realized it was growing, and quite fast.  I took her to the Dr., who happened to be the on call Dr. rather than her regular pediatrician, he told us there was nothing he could do for 2 weeks!  I did not feel comfortable with this so a few days later I called her regular pediatrician for a visit, he wasn't overly concerned either but he sent us in for an ultrasound on it, she was diagnosed as having a Thyroglossal duct cyst.  This is not dangerous and is seen in a large percentage of children.  These cysts can be left and watched for a long while until painful or very large, and it can take a long while to hit this point.  We opted to have Kimber's removed as soon as we could because she was claiming to be in pain from it and was not eating well.

In July 2016 Kimber went in for her Thyroglossal Duct Cyst surgery.  Everything went well.  It was discovered to be a rather large cyst that went further back than the ultrasound showed and proved to be a very good thing we had it removed when we did.  Kimber's heart handled the surgery very well!  We happened to get a very knowledgeable Anesthesiologist who had dealt with SVT patients in surgery before, as well as had patients go into SVT under her watch so she knew what to watch for and knew how to handle the situation, but like I said, Kimber did great.  It was a quick recovery.

Kimber's Spontaneous Hypothermia Migraines have continued to plague her.  She has had another 2 episodes since the last one noted on this blog.  She complains her head hurts a few days of the week and is still taking the migraine suppressant.  There is still nothing more we can do except hope she outgrows it soon.
This is an example of Kimber's temperature reading while in Spontaneous Hypothermia, this is one of her higher readings.

In the Fall of 2015 Kimber gave us a bit of an SVT scare.  She woke in the night with a very, very high fever and her heart rate was in the 170's, but it was not in her PJRT rhythm so we just watched and waited for the Motrin to kick in and bring the fever down.  Once her fever was under control her heart rate slowed to the 150's for the rest of the night and early morning when her fever broke her heart rate dropped back to normal range.  She spent the day quite under the weather but no SVT.  We took her to visit the Dr. when other symptoms became apparent, she was a new to us Dr. and she panicked and gave us a good lecture for not taking Kimber to the ER the night before with that heart rate but we assured her we felt she was fine, she still insisted we were in the wrong and actually made me feel like maybe we'd done something wrong so I called our EP who laughed and reassured us that our judgement was trustworthy and he felt as long as the heart rate came down with the fever reducers then she was fine and a visit to the ER was unnecessary.  He still didn't wish to see her until March, YAY!

We made it an entire year between the last updated Cardiology visit and the next one!  We saw the EP for a yearly, yes that's right YEARLY!, visit in March 2016. 

At Kimber's March visit with the EP he explained that he didn't want to wean off of medications, he still could see the PJRT on her EKG, I tried to talk him into it but he wouldn't go for it at all.  Instead he said Kimber is ready for a catheter ablation, she finally hit the weight requirements and we are cleared to schedule it whenever we feel we can.  Talk about terrifying!  I've prayed for this day to come but I never thought it'd actually be here and now I'm scared to do it!  We want Kimber off the medications, so, so badly, especially since we are more likely lately to miss her afternoon dose than we ever have been, she misses the afternoon dose of Propranolol about 3-4 times a week because we're busy, we forgot to bring it with us, my alarm didn't go off or I didn't hear it, or my alarm did go off but I wasn't in a position to run and grab her and the Propranolol and I completely forget afterwards.  Her EP said it's not a very good thing that we miss doses but he said it is a sure sign it's time for an ablation, and he really laughed it off and said "let's get it scheduled so you don't need to worry about it anymore".
But here it is nearly September and I have not yet scheduled the surgery...
1.  Because I'm scared.  Yes that's the #1 reason and I know, it's ridiculous.  I just keep putting it off though.
2.  Because of the baby.  Some, maybe most, won't understand this.  Baby brother is 15 months old now, but he's still breastfeeding 5-6 times a day, I can't in good conscience leave him for an entire day without me, he's still not eating enough food or drinking enough from a cup to satisfy.  But I can't take him with me, a toddler in the OR waiting room, and then in recovery, would be disaster.
3.  Finances.  Enough said.

Kimber starts Kindergarten tomorrow!  *Sniff* I'm having a hard time with this.  We got a 504 plan for her (helps give exceptions for school, makes the teachers and staff aware that she has a health issue, etc.).  I have a detailed, written medical plan of action for the school nurse, front office/principal, teacher, district, and bus drivers, things like symptoms to watch for, how to care for her if she has an SVT or hypothermia episode, the fact that she cannot go long without food or drink because of her Propranolol, special instruction to try getting her into the lunchroom first thing for breakfast to stock up on some calories, allowing a snack and water bottle on the bus in the afternoon to get her home so she doesn't pass out from low blood sugar (breakfast at home will be at 7:00am, she won't get home for lunch until 12:00 or 12:30, that's 5+ hours between meals without these special allowances).  We saved up and bought a FitBit Charge HR for her after extensive research and finding an unbeatable deal on one, this will give me peace of mind knowing I can check her daily heart rate when she gets home and her teacher and aides can see her heart rate right there on her wrist all day, I'm working on getting it insured if possible in case it's lost or stolen.  Despite our constant worry about SVT my main concern is Kimber having a Hypothermia episode while at school.  It seems that is more likely than an SVT episode.  I keep having to tell myself I need to breath, everything's going to be OK.  I'm so happy she gets to go to school like she wants to but I'm really struggling with the thought of keeping her home with me.


6 Month Cardiology Checkup

I can't believe it's already been 6 months since our last visit with the EP Cardiologist.  Time is sure flying.

Can you believe it was 2 YEARS in December since Miss K's last known SVT?!?  We didn't celebrate it yet, it's been way too crazy the last few months and we completely forgot :(, hoping to have a cake for her soon though :).

First off the appointment went very well.  Miss K climbed right up on the scale without complaint, even stood perfectly for her height measurement.  And when it came to getting the EKG done she completely shocked me!  Just last appointment, 6 months ago, she screamed and cried about having the "stickers" put on her and I had to hold her while we did the whole EKG.  Today I asked her if we could put the "stickers" on her chest and she said "yes!", she let me put her on the exam table without any complaint and she laid right down and lifted her shirt up.  She was so good, she held perfectly still for the EKG, she complained that the blood pressure cuff hurt her, which is not normal, but I think the nurse had it on a bit too tight, and she didn't like having the stickers taken off by us, she insisted on doing it herself and that was just fine, she pulled all 13 of them off all on her own without tears.
I even got to take a quick picture of Miss K today, something not likely to happen in the past :)

The EP Cardiologist came in and said everything on her charts looks great.  He listened to her heart and said she sounded wonderful.  He was very happy with her today.

Having 3 kids in the office together makes talking very hard so I didn't get to really ask a lot of info about Miss K but I did get a few things clarified.  The first thing he said was that she hadn't gained enough weight to worry about medication dosing, I told him we were going on 2.5 years on the same doses and just over 2 years SVT free and we both agreed this is a great sign and that there is no reason to change her medications.  My only regret is that I didn't get to ask him why we couldn't try lowering them, or even try dropping the Digoxin, he didn't even go the direction of mentioning it himself which makes me think the PJRT must still be showing it's ugly self on her EKG, but I didn't get to ask him if this was the case with all the chaos of my 3 kiddos running around the room :(.  I did get to ask him my main question.  I have been wondering about the Catheter Ablation with Miss K nearing age 4.  In the past he has mentioned she'd likely have one around age 5, we're so very close to that age and I couldn't stand not asking him about it a little more in depth.  So we talked about when and why to do one.  He said he has done them on kiddo's Miss K's tiny size but only in dire circumstances where it was deemed quite necessary.  That's just fine with me, I am most definitely not asking him to do one now.  He said he really wants her to weigh 15 kilograms (about 40 pounds) and be age 5 or older.  He actually mentioned that height is more a factor to look at than weight, so say if a 5 year old is not 40 pounds but she is at average height or taller for a 5 year old then an ablation would be more than OK to consider.  But Miss K is so teeny tiny, she's most definitely not going to be 40 pounds around age 5, and going off her current height it's very unlikely she'll be "average" at that age either, she's very short compared to her older brother when he was her age (i.e. when Big Brother was 3.5 years old he had to have a 4T size pant to accommodate his length otherwise he'd have "floods" or "high water jeans"...Miss K is age 3.5 and she is still in a 2T pant because 3T are WAY too long).  Doing an ablation on a teeny tiny child presents risks, mostly a huge risk of not getting a vessel or two ablated because they were too small to see, thus guaranteeing a return of the SVT episodes sooner or later (likely sooner), but if we wait until she's quite a bit bigger he'll be much more likely to successfully get every little vessel that is causing the SVT's and thus preventing further SVT episodes at all in her future.

So, we keep up with the medications as they are.  No plans for an ablation in the immediate future, the EP Cardiologist says around age 7 may be a better estimate for Miss K.

And the best news?!  He officially said "I don't want to see you for a year!", the first time he's ever said those words :).  We don't have to go back in 6 months :).  This is a huge step for Miss K, we've been waiting for him to say "don't come back for a year" rather than "come back in 6 months, unless you think she's doing OK then you can wait a year".  We're so happy to hear this :).


Another Hypothermia Episode

Thanksgiving night, of course if Miss K is going to do something sporadic and crazy on the medical side it would be on a holiday.

Sometime around 8:00pm Miss K started acting extra sleepy.  I thought nothing of it since she had not had a nap at all through the day and it was bed time.  We were visiting my grandmother for Thanksgiving pie and Miss K suddenly climbed up on her Grandpa's lap and told him she was tired.  A few minutes later she went pale and limp and started sweating all over, my dad yelled for me to come quick, I entered the room and immediately felt her face, I'd seen her like this back in July, sure enough her face was ice cold, the house was over 80 degrees Fahrenheit.  The rest of her body was ice cold to the touch as well.  I had no real resources for keeping her comfortable and no ride back home because Daddy had just left in our car to meet someone at the house for a minute.   I could only think of one thing to get her to perk up and that was food, my grandmother offered Miss K a banana and she jumped on it, I knew she was hungry as well as tired because it had been a little bit since we'd eaten last, she devoured the banana in minutes.  After that she was awake and had more life in her but still white as snow and cold as ice, her heart was beating quite slowly, though I didn't have a stethoscope to check heart rate so I had to depend on how it felt under my hand.  Finally after a few minutes my parents decided we should head home and gave us a ride.  When we got home I quickly prepared a mini meal/snack for all the kids, Miss K didn't hardly touch it, I talked her into milk and a few bites but that was all.  It took her over an hour to get her heart rate back up and over 2 hours to get her temperature back up, she stayed pale as can be until bedtime.  And as soon as her head hit her pillow she was out cold and snoring.  We kept a close eye on her all night, she just slept like a log and barely stirred but heart rate and temperature stayed normal.

In the last 4 days since then she has had a few "off" moments, a bit pale, red around the eyes, she looks like she feels awful, but she acts completely fine, aside from some crazy mood swings that seem pretty typical for her migraine days.

So apparently Miss K may be one of the "lucky" ones who has the spontaneous hypothermia episodes every 6 months or so, considering it's been roughly 6 months since her last one.

I have not reported it to the neurologist, I'm not sure if she wants me to or not, we didn't discuss that as far as I remember.  I think I'm going to hunt down her business card and possibly shoot her an e-mail.


MRI Results...

I'm going to write about a lot of our experience only because I want it recorded for my own benefits, if you wish to skip to the results feel free, I won't be bothered by it, in fact I'll never even know lol.

Miss K woke up cranky today, she did not want to be up, she wanted to sleep.  I can't say that I blame her, I wanted to stay in bed as well ;).  She couldn't eat solid foods after 3:00am, we kept her up the night before until 10:30pm trying to get her to eat, eat, eat.  Truth is she's not a snacker, she prefers 3 meals and that's it, so getting her to eat until 10:30 was near impossible.  She was allowed clear fluids and Jell-O until 9:00am so her breakfast was Jell-O jigglers and apple juice...it didn't go over well at all, not that she was mad at what I was feeding her, just that she is not a breakfast kind of kid, she never eats more than a tiny bit each morning and getting that much in her is tough.  She had a few tiny bites of the Jell-O then played with it, can't blame her there either, Jell-O jigglers are fun to play with ;).

We arrived at Primary Children's Hospital right on time.  Miss K was just great with the pulse ox and the blood pressure cuff, she's used to these and didn't mind them at all.  The nurse wanted to use an under the arm thermometer, Miss K wasn't having that though!  The nurse suggested under the tongue instead and Miss K opened right up and allowed that for some odd reason.  Next comes the IV...Miss K knows exactly what those are, she knew immediately what we were doing the second we tried "assuming the position", so to speak.  A lot of violent kicking and screaming, it took 3 of us to hold her, I had her chest to chest with me, both of her arms tucked under each of mine with one nurse behind me finding the vein, one in front of me holding Miss K's arm, me squeezing as tight as I dared and Daddy holding her legs down because, darn, those little legs are strong!  She was using them to push away from us all and doing a pretty darn good job of it!  So much struggling commenced that it took almost 10 minutes just to get her hand properly prepped and the vein raised, then another 5 or more minutes getting the IV in, and because she was already worked up and ticked off at us all she kept screaming and struggling through the tape being placed as well.  Once we were done they brought a treasure chest and let her choose a prize, the only girl toddler friendly prize in there was a Cinderella puzzle, thank heavens she was thrilled with it...Note to self:  find some great little girl toys and donate them to PCH for their prize boxes...

IV in and ready and we're taken back for the MRI.  They had me snuggle Miss K while they pushed the sedation medication through her IV, they had to double check her charts and make sure to use a certain medication though because their usual medication interacts very badly with Digoxin.  Miss K fought the sedation hard, once we thought she was out she started thrashing around, we got her settled and assumed she would be fine and then I realized there was a safety pin in her pants (yes, she's tiny, every pair of pants she has that isn't adjustable waist must be safety pinned, or taken in with sewing, so they don't fall off of her non existent hips and bottom), I majorly disturbed her removing the pin from under her back :(, she wouldn't calm again after that so the nurse had to push another medication called Versed, this one knocked her out in seconds and she didn't even twitch.  The nurse assured us Miss K was completely fine, she would watch her 100% of the time, but the MRI was going to take 30 minutes or more and after that we would be stuck in recovery with Miss K for another 2 hours so she pretty much forced us out of there and commanded we go get some lunch so we'd be better ready for the long wait later.  I very reluctantly left my baby in their, hopefully, very capable hands and we ran down to the cafeteria for some food...wow, can I just say "flood of memories"?!  I almost couldn't handle that cafeteria and it's food today, every terrible memory from 3 years ago came back to haunt me down there.

We made it back into the MRI recovery room just as they had gotten Miss K settled in there.  They wanted her to sleep at least 2 hours straight to make coming out of the sedation a bit more pleasant.  Lucky for all of us it was Miss K's normal naptime at that point and she was more than happy to stay asleep, in fact she slept soundly without a stir while the little girl right next to us, her bed was touching my shoulder, was screaming at the top of her lungs and putting up a huge fuss about waking up from her sedation, it was so bad the nurse was practically begging the parents to take the little girl home, she was sure their child was just fine and would be better in familiar surroundings but the parents were not so sure and just stuck around, I know everyone in there was very relieved when they finally left after over an hour of listening to that sweet girl scream.

Miss K slept the full 2 hours just great, and amazingly she woke up quite easily and very happy, in fact she was quite goofy and out of her wits and it was a bit entertaining as well as unsettling, it's not fun for a mom to see her 3 year old act so out of sorts, even if she's happy doing it.  Miss K did great, she ate a whole popsicle on her own, this is not normal at all, she hates cold things and normally won't touch a popsicle.  She also ate cereal for the nurse and drank juice just great.  We were released quite quickly with our only instruction being never to leave her alone in the next 24 hours and never to leave her with any siblings or sitters for 24 hours.

Miss K started her screaming and thrashing as we got into the car, she did this for about 20 minutes, constant screaming and thrashing about in her carseat, we couldn't calm her no matter what we did.  But after 20 minutes she decided to eat more cereal and fell asleep while chewing (it's OK, I watched her close, she did not choke), she slept the rest of the way home.  Since getting home she has been very unbalanced, she can't walk straight no matter how hard she tries, and she's still acting quite loopy, doing silly things and acting very crazy.  She's also very visibly tired and should sleep easily tonight.  Otherwise she's doing fine, heart rate has stayed perfect from beginning to now.  We did have another bad parent moment today and completely forgot to give her her afternoon Propranolol :(, but I don't feel it's a bad thing with all the sedation medications in her that are slowing her heart rate.

Before results I will update a tiny bit about her past week.  Last Wednesday Miss K started taking Cyproheptadine for her migraines.  They had us start out at 1/2 dose for a week to get her body used to it then we went up to a full dose, in the very short week of just 1/2 a dose I already noticed a HUGE improvement in Miss K.  She only complained of her head hurting just 2 days and both times were first thing in the morning before even getting out of bed so I'm not sure it was even migraines but rather waking up making her feel a bit off, after breakfast each day she never complained of her head again.  Miss K's comprehension and speech has changed quite a bit in the past week as well, she's a lot more attentive and seems to understand more and she is a lot happier and a lot more active.  I feel terrible realizing that her headaches were more than I even could comprehend, from the way she acts they must have been pretty constant and pretty debilitating :(.  I'm still leery about the medication, I really don't like giving my baby girl medications and adding one more makes me nervous, but the outcome already has me thinking this is a really good thing.

Our Pediatric Neurologist is just as awesome as our Electro Physiologist!  She received the MRI scan within just a few hours of it happening and she called me barely an hour after we left the hospital...frustrating enough my phone decided not to ring at that moment and I missed her call, we were left stressing over results until after 5:00pm, 2 hours later, before she finally had another moment to call me back.  The MRI showed no reason for the migraines and no reason for seizures, also no seizure activity at all.  Both these things are GREAT news and really what we wanted to hear...but now we're left to wonder what in the world is causing Miss K's migraines?  Also the MRI revealed a very interesting find, not life threatening and not debilitating in any way present or future, just interesting, as the Neurologist says.  Miss K has an old Stroke in her brain, apparently it is very old, the Neurologist says it happened when Miss K was a tiny baby and that she very strongly feels it happened during Miss K's 48 hour long SVT episode that we were unable to break during her PICU stay.  It makes sense, I can't imagine that episode NOT causing some sort of damage in her little body.  This does bother me, a lot more than I've let on thus far, a Stroke is not something you want to hear your child has had for whatever reason.  But the Neurologist was very reassuring that it is not anything to worry about.

And there we have it.  Miss K is having migraines, it's apparent she really is, after seeing such great results from her migraine medication.  But there is no apparent cause for the migraines, we're just left to wonder and treat.

Thank you, everyone, for you love and support and prayers today, they were most definitely felt.  Somehow I was a lot more calm than I thought I ever could be today, I strongly feel it was all your prayers, thank you.


Neurology Report and Speech Therapy

We saw the Neurologist today.  I didn't recognize the name, and at first didn't know her face but then she said "Hi!  It's nice to see you guys again!", uuuummmmm, "again?" I said, I was so confused!  Apparently this Neurologist is the one who was on Miss K's case in Primary Children's during her long stay as an infant.  After talking for a while I started to recognize her face and remembered her just a tiny bit.

So, the news hasn't changed much.  Yes Miss K is likely having migraines.  At first it was a "no" we don't need to do any testing unless Mom wants it, and my answer was "no".  She was just as baffled about the episode in July as the rest of us are but had done her research in the last week knowing Miss K was coming in.

We got to talking and she asked more and more in depth questions about Miss K and her overall personality.

I talked about her eating issues...Miss K doesn't eat.  At meal times she constantly moves around until we give up and buckle her into her booster seat, she doesn't put any food into her mouth, we have to instruct her through the whole eating process and it takes an hour minimum to get a somewhat OK amount of food into her, what do I mean "instruct?", exactly that, every step:  "(Miss K) pick up some food, now put it in your mouth NOW", all said VERY slowly, VERY pronounced, each word said very clearly and separately.  If we don't instruct her she will sit there and never touch her food, no matter how hungry she is.  It's clearly not for attention as we've tried not doing it and she'll go days without more than a bite to eat each day, we've tried giving all 3 kids the same amount of positive attention at the table, keeping the negative out of the picture, so that she doesn't feel we're not paying attention to her enough, we've tried excusing everyone from the table and leaving her there longer without anyone to distract and she touches nothing on her plate for up to 30 minutes before we give up on her and let her get down as well.  She's not a snacker, she never has been, no matter how hungry she is she doesn't snack.

I talked about her slow thought process...Miss K doesn't understand most directions and the words "no" and "stop" when she's in trouble do absolutely nothing, no amount of loving guidance gets us anywhere with her, every love and logic thing we've tried has gone past her without even pausing, when we need to get the point across it takes 4-5 times of telling her "no" or "stop" until we get into her face and make her look us in the eye and VERY firmly, showing how upset we are with facial expression, telling her "NO!" or "STOP!" before we suddenly see a light bulb turn on in her eyes like "Ooooohhhh!  Mommy said no!" and then she quits.  Every instruction she is given has to be done very slowly with her looking us directly in the eye and even then she doesn't get half of it.  She's very slow to process things she's told.

I talked about her speech...Miss K is very hard to understand.  We understand her 21 month old brother clear as a bell but not Miss K at all.  Her Pediatrician said if 3/4 strangers can't understand her then she likely needs speech therapy.  Well, more than 3/4 FAMILY can't understand her let alone strangers.  Simple requests from her for some things are understandable to Mommy and Daddy but not clear at all.  When she tries to tell us a story, like what she did at Preschool, it's a jabbering mess that she repeats over and over like a broken record until she thinks she's told a great story, not one word understood by the listener, even if it's Mommy or Daddy.

The Neurologist changed her mind about the testing after this conversation.  She thinks we should do an MRI, she thinks it will help to know how Miss K's brain works.  She said after the MRI we might do some cognitive testing as well.

The plan of action after today is for the Neurologist to contact our EP Cardiologist and get his permission to do an MRI, because it must be sedated and that can be dangerous for Miss K's heart rate so we have to make sure her EP Cardiologist feels comfortable with us having it done, if he does not clear it then we will just skip it, it won't hurt anything it will only help to have an MRI.  Secondly we are putting Miss K on a daily anti migraine medication, it hasn't been prescribed yet only because, again, we have to clear it with her EP Cardiologist and the Pharmacist, make sure it will be OK to give with the Propranolol and Digoxin as well as be OK for her heart rate.

Also, while I'm updating, we have started the process for speech therapy.  Some think age 3 is way too young to even worry about it.  It's not too young, it's not too early, it's not pushing Miss K to learn faster than she needs to, blah, blah, blah, blah.  The Dr.'s say she's OK if she doesn't qualify for it, or if I prefer she not take it, it's not important so, no, it's not the Dr.'s or any teacher trying to push it on me because kids are being pushed too hard too soon.  I made the choice to see if she even qualifies for a number of reasons.

Number 1: I cannot understand her, half the time I cannot even guess what she's trying to say and it's frustrating for me to not be able to help her, it's frustrating for her to have nobody understand her.  When she asks me for something..."Mommy, I want a shiosay"...I ask her to repeat it, and apologize for not understanding her, about 5 minutes later she's repeated it over and over again and can't say it any other way and I absolutely cannot figure out what she's asking for so I end up saying "I'm so sorry baby, I can't understand what you're asking for, I'm going to have to say 'no'", I want to cry, she wants to cry, and we end in a heap of hugs :(, this is a daily occurrence. 

Number 2 I would rather her start speech therapy now while she's young and still learning, her way of speech is not ingrained in her brain, she's not quite used to it yet so it's not as hard to change it, and I'd much rather have her either done with speech therapy or already in it and getting help when she starts Kindergarten, I really don't want her to start Kindergarten having been only helped at home and be told that she needs speech therapy, which may or may not happen but I'd much rather avoid it however possible. 

Number 3 speech therapy through the school is free, so why not do it if she qualifies?  I won't pay for a private therapist, if she doesn't qualify we'll just keep working on it at home and try again next year if I feel she still needs it. 

As of right now we've started the process with the hearing and vision specialist, she passed the hearing and vision part with flying colors, even impressed the specialist.  The speech part she was right on the border, a score of 18 is allowable at age 3 and she got exactly 18, which doesn't always happen, as far as her understanding speech when being spoken to and following directions goes the specialist said she is behind developmentally and he said even though she scored an 18 she is really behind in her speech.  From that round of testing the verdict was it can go either way, she has two more people to see and test with and those tests can easily tip the scale either direction.  We see the next specialist for testing next week.

We have a lot going on.  As soon as Miss K's EP Cardiologist is contacted we will know what to do and when.  I'll keep updated as I can.


Migraine Follow Up

I can't believe it has taken so long to get somewhere with Miss K's migraine research!  I've patiently waited for her Pediatrician to get back to me but last week my patience ran out.  Since July's little episode Miss K has experienced at least one day a week complaining of a headache, and at least twice a month of a full day of being so very pale, listless and quick to tears.  Last week she had a headache every day, and one day of pure miserableness :(.  So I called the Pediatrician and told him what was going on, he called all the medical colleges he had been trying to get a hold of and told them he needed their journals right that minute, they all responded amazingly!  And he sent me all that they sent him then he read through them all and explained them to me in lamen's terms.  Apparently this Spontaneous Hypothermia condition has many causes and many outcomes.  So the kiddos with this that had MRI's and EEG's done were found to either be missing a core part of the brain that regulates temperature, having extra or missing electrical pathways in the part of the brain that controls temperature, having seizures that are causing a mix up in the brain, or have nothing wrong with the brain at all and are unexplained.  The ones with the first 3 findings had no symptoms between Hypothermia episodes and were having the episodes quite often, some weekly and some daily.  The ones with nothing wrong were having headaches and other symptoms between the Hypothermia episodes and the episodes were few and far between.  Our Pediatrician feels Miss K falls in the last group since she is having headaches and symptoms since her episode and it's been months since that episode without us catching another one.  This means we likely won't be doing any MRI's or EEG's on Miss K.  But it does mean that we may need to put her on a migraine preventative, preventative that is taken daily because she's too young for us to give her a medication that is only given at the first signs of a migraine.  He said it will be trial and error, we will have to try one medication at a time until one ends up seeming to work on keeping her migraines away.

Over the weekend I had a thought.  When this all began we were told by our Pediatrician that the medication Propranolol that Miss K takes daily for her PJRT is also used as a Migraine suppressant, he was curious as to why Miss K was suddenly having Migraines while taking this medication.  So I wondered if maybe she's in need of a higher dose of Propranolol OR maybe we need to go back to giving the Propranolol strictly every 8 hours rather than just 3 times a day (making sure to keep at least 6 hours between doses), I wonder if the long stretch at night and the short stretches during the day are confusing her brain with the Propranolol and maybe she needs it more consistently.  I called the Pharmacist and ask her about it, she said "It's a bit likely this could be the reason for her migraine breakthroughs, it's definitely worth a try and just might be a part of the problem", I then called our Electrophysiologist and asked his nurse about it and she said "it certainly won't hurt but I can't say it will help at all".  So starting tonight we will be giving Miss K her Propranolol every 8 hours, I'm not looking forward to the middle of the night doses but I'm more than willing to do it if it ends up helping!

This week we see a Pediatric Neurologist to talk about these migraines.  I will be asking her about the Propranolol, hoping that this next few days might be enough for me to see if it makes a difference.


Keeping The Kids Healthy

Hey all! I hope everyone is doing great! I can't believe it's already fall! With kids now in school and a raging, terrible virus going around, how is everyone doing keeping well?

Just thought I'd share my choices for keeping the kids healthy this year, so far so good ***knock on wood***!

2 Daily Kids Multivitamin
2 Daily Kids Omega 3 with DHA vitamin
2 Daily Kids Immunity Vitamin
1 Daily dose of Root Beer Belly Probiotic (you get it from my website www.laceeclayburn.my90forlife.com)
I run an Essential Oils diffuser 3 times a day for 30 minutes (first thing in the morning while getting kids fed and ready for school, as soon as the kids are home from school, and just before bed while we read), it contains To Be Well Essential Oil from my website (www.laceeclayburn.my90forlife.com)
I bought each of my school kids an Essential Oil diffuser necklace to wear out in public and at school, I put one drop of To Be Well inside it.
Every night I put a drop of Ravensara Essential Oil (also found on my website) on each of their feet.
I wash the kids school clothes with a few drops of Deep Cleanser Essential Oil (also found on my website) in the wash cycle.
And each of my kids has a bottle PureWorks Antibacterial Foam from my website in their backpacks and have been instructed to use it A LOT, we also have one of these bottles in each of our cars and we all use some as we get back into the car from any public place we've visited. I chose PureWorkes over handsanitizers you get in stores because PureWorks keeps your hands germ free LONGER and it is 100% natural so I'm not putting harmful, nasty chemicals on my kids hands for them to (very likely) lick off .


A Spontaneous Hypothermia Condition...

Episodic spontaneous hypothermia: a periodic childhood syndrome OR Spontaneous Periodic Hypothermia and Hyperhidrosis:  a Possibly novel cerebral neurotransmitter disorder.

As if Miss K really needs something else going on with her.  Seriously, why my little girl?!  It's not fair.  A few weeks back I posted about a crazy little episode (Find it Here) Miss K had, when she woke up cold as ice, body temperature of 94 degrees Fahrenheit, sweating profusely, heart rate in the low 50 BPM's, listless and pale, in a room that was at least 80 degrees Fahrenheit.  Since then we've been to her EP Cardiologist who did not agree that her symptoms could be heart related in any way (Read Here), I was concerned and put on my Mommy Advocate, Research Guru Pants and started combing the internet.  It took a few tries to find anything worth looking through, my first search of just symptoms brought up a whole list of websites to comb through, none of them making much sense to me, I changed the search to include her age and gender as well as all symptoms and just 3, that's right just THREE, websites came up, all 3 made more sense than I wanted them to.  I found a diagnosis.  But my diagnosis was, obviously, self diagnosed, as well as found on "Dr. Google", I'm not a fan of self diagnosing especially through Google searches so I printed everything I found  to take to our Pediatrician a few days later when we went in for Miss K's 3 year Well Child Exam.  I'm beginning to really like our new Pediatrician.  He compliments me constantly on what a great advocate I am for my daughter, and he is always thanking me for being so informative, knowing so much about my daughter's condition, and for giving him new stuff to research (not that our old Pediatrician wasn't the same, he really was great about that stuff, I'm just happy to have found another one who is of the same mind).  So when I brought the information about Spontaneous Hypothermia he did not reprimand or belittle me at all, he thanked me, he read what I gave him right then, and he decided we needed to research it further from a medical standpoint because it all made sense to him, he felt there was a strong likelihood that this was what Miss K had experienced.

Since that visit with our Pediatrician Miss K has complained of her head hurting a handful of times, and on those days she wakes up seemingly fine and full of energy but within an hour or so she goes downhill pretty quickly, telling me her head hurts and laying around on the couch all day, her naps on these days vary between unusually long and unusually short and miserable.  We've had these types of days many, many times in the past 2 years but until recently she's never complained of anything hurting her, I assume this is only because she couldn't tell me what was hurting because she was too young to understand.

Yesterday I had to take Miss K in to the Pediatrician yet again, this time for what I suspected to be a Urinary Tract Infection or something along those lines.  This is her second possible UTI :(.  I was pleasantly surprised when the Doctor came in and immediately wished to talk to me about my findings about Spontaneous Hypothermia.  He explained that this condition is Migraine related, it's a type of Migraine that typically affects children but can sometimes affect adults too.  He explained that he's almost positive Miss K has a rare Migraine condition that we've never caught symptoms of before because she's taking Propranolol, which is not only a heart Arrhythmia and Blood Pressure medication but also a Migraine suppressant, he feels the Propranolol has been suppressing any and most signs of Migraine.  When I told him about her past off days and her added complaint of her head hurting it only confirmed his suspicions.  He has requested some medical journals not available to the public and is going to research them when they arrive, he also has a friend who is a Pediatric Neurologist, supposedly one of the top PN's in Utah, he highly recommends her, once he has researched the journals he plans to contact this PN and ask her opinion, he says he's more than sure she will wish to consult with me and Kimber as soon as possible and he suggests we do so.  He talked about starting her on a Migraine medication immediately but I told him I'd rather not just yet, I want to be sure we're treating what we think we're treating before pushing yet another medication into her tiny little body.  Though his main concern is the future, when we do finally get to take Miss K off of all her heart medications and have a, hopefully, successful catheter ablation done, we will be taking her off of the Propranolol, which is likely suppressing any Migraines she may be experiencing, this could mean trouble for our little girl, she could end up slammed with major, unbearable, Migraines due to being without the Propranolol.  We all know this is not happening for at least 2 years but it will happen and we do not wish to put our daughter through such pain and discomfort :(.

To say I'm scared would be an understatement.  This isn't right.  It isn't fair.  We'll keep updating as we know more.

As far as the main reason for our visit yesterday goes...that's another thing of bad news :(.  Miss K had blood in her urine but all other in office tests came back negative so he's sending it in for a culture to see what is going on.  She's obviously struggling, she's using the bathroom at least 15 times in a 30 minute period and started complaining her back hurt the day before, she cringes when she tries to potty and she barely dribbles each time :(.  If the culture comes back with bacteria growth then we'll know we're treating a UTI or other infection, she is currently on an antibiotic to clear up whatever is bothering her.  But if the culture grows nothing we will have to go back in and do another urine test, if there's still blood then there's something else going on that we'll need to investigate.  And on top of all this she's constipated, which, if she does have a UTI, may be the cause of it, so she's been put back on a daily dose of Miralax, something we haven't had to do since she was just over a year old.

 We can use all the prayers we can get right now.  Our little girl is dealing with some tough issues :(.


A Cardiology Visit

We visited with Miss K's EP Cardiologist yesterday for her regular 6 month check up.  It actually went really well!  Miss K didn't cry, she was a bit cranky from a long day and not much of a nap to speak of, but otherwise fairly cooperative.  She let us do the EKG without a fuss and it read normal for her as always.  Our Cardiologist was impressed with her, he could still hear her murmur we found last year but still is not concerned about it.  He also said she has not gained enough weight for a medication adjustment, he's not surprised with her lack of gain and advised me that between now and age 5 she likely won't gain more than 4-5 pounds, if she even gains at all, for the most part this slow weight gain is normal for the age, Miss K is just unique in that she's so tiny to begin with.  She is barely tipping the scales at 23 pounds even, she's about 34 1/2 inches tall.  While I, and others, are hoping for a good weight gain from her in the next 6 months to a year her Cardiologist is content having her stay in this weight area to avid medication adjustments lol, it's kind of a "rock and a hard spot" sort of thing, we want her to grow and gain weight like she should but we don't want to have to give her more medications.

I asked about Miss K's little episode a few weeks ago, (here), he was concerned about the symptoms BUT he swears they are not cardiac related in any way.  He said from a Cardiology standpoint there is nothing related to the heart or it's function that would cause very slow heart rate, very low body temperature and profuse sweating all together like Miss K was that day.  He assured me without a doubt that her symptoms were not the result of an SVT episode, he's never known, read about, or heard of an SVT episode causing these symptoms all together, even the most severe episodes.  He speculated that a medication overdose of either of her medications could possibly cause this reaction BUT Daddy and I are 100%, without any doubt at all, sure that we did not overdose her medications the night before, nor did we issue them too early (to close to her last dose).  He said the only thing he knows of that causes these symptoms all together is the "D" word, a word he didn't want to even mention, I'm sure most anyone can figure out what word that is.  It scared me.  It has him worried.  But it's nothing he can diagnose, he can't even refer us to someone who can diagnose it because he's never heard of it happening except in the case of the "D" word.  We're back to square one figuring that day out.  I don't know if I want to just leave it be and wait for it to happen again or if I want to further investigate, I don't even know where to begin to look for information about it.

Otherwise, Miss K looks and sounds great for her "normal" from a Cardiology stand point.  We're to see if we can go a whole 6 months without needing a visit, if she doesn't gain weight in the next 6 months then we are to wait a year to see him, he doesn't see any reason to see her unless she gains or is having frequent SVT.  We continue to give her 3.2mL Propranolol 3 times a day and 1.2mL Digoxin twice a day.

Before our appointment we had the opportunity to meet and play with one of Miss K's heart sisters, Brielle!  It is such a blessing to know other kiddos with PJRT but an even bigger blessing to know one that lives close enough to meet and plan dates with!  This was our first time we both were available and I was driving up their direction anyway for our Cardiology appointment so we decided to take advantage.  We met up at Utah's Thanksgiving Pointe and explored the Dinosaur Museum together.  It was so much fun and so great to get the girls together.  Brielle is such an adorable little girl and her mama is a real sweetheart, I love how much we have in common.  I hope we get to see each other more often! 


Miss K is just keeping us on our toes

Today was officially the WORST Monday I have ever had in my life, well except for Miss K's birth day which was on a Monday and pretty bad for me, but today was close!

I had intended to call our new Pediatrician this morning to take baby brother in to check on his eyes, I wasn't overly concerned, it seemed like they were just sunburned but I wanted to make sure it wasn't something worse.  My morning was turned from slow going normal Monday to terrified rush when I got out of bed and went to check on my quiet children in their rooms, I checked Miss K first only to find her laying there awake but quite out of it.  I asked if she was OK and she replied "I'm cold mommy", I felt her forehead expecting a fever but instead found her cold as ice, I felt the rest of her body and limbs to find them ice cold as well, her bedroom was around 80 degrees, she was also sweating profusely, especially her face and nose which, when I wiped them dry, beaded with sweat again immediately.  I ran for the thermometer and stethoscope first checking her temperature, she was at a crazy low of 94 degrees, I checked and double checked only to get the same result.  When I checked her heart rate I immediately heard "lub-dub...pause...lub-dub...pause...dub dub...pause...lub-dub" (normal heart beat is steady "lub-dub, lub-dub, lub-dub"), I got the stop watch out and listened for a minute, her rate was about 55-60 beats per minute, her normal resting rate is around 110 bpm.  Of course I panicked, I wondered if Daddy had overdosed her the night before so I called to double check, he assured me he did it perfectly right.  I called our Cardiologist and left a message asking what I should do, though I know from experience it can sometimes take 24 hours for them to call me back so after a few minutes I decided we couldn't wait that long and called the Pediatrician's office to make an appointment for her and baby brother.  The receptionist didn't want me to wait to bring her in so she had me head over right then.  Picture this:  I hadn't been out of bed more than 15 minutes, I'm in my jammies and my hair and make-up are a complete mess (the one night I choose not to shower or wash my face before bed because I had just done so earlier that afternoon after camping), my kids are in jammies and none of us have eaten breakfast and because it's a Monday my mom was at work and couldn't leave and my little sister was at soccer practice so I had no sitter.  I had less than 10 minutes to somewhat dress all 3 kids, not even time to think about doing hair but I did insist on taking a moment to at least comb the knots from Miss K's hair, I threw whatever clothes I could easily find on and threw a hat on my head, also hastily washed the mascara off my face and re-applied to look a tiny bit presentable.  I scrambled around the house pouring the very last of the yogurt into to go pouches and making big brother a peanut butter sandwich and last minute remembering to grab sippy cups and filling with milk then rushing everyone out the door with whatever shoes we could find by the door.

Our Pediatrician did not like Miss K's symptoms.  He called the closest Pediatric Cardiologist, who happened to be the first one to treat Miss K before we found our EP Cardiologist, and asked for advice.  Together they determined we needed a full blood workup to check for heart failure and infections related to her symptoms, they also determined she needed a chest x-ray to check for heart enlargement and an EKG as well as a 24 hour holter monitor.  Oh and let's add in that baby brother needs to see an Opthalmologist for his eyes because it may not be sunburn but instead an infection of some type.  So our Pediatrician says "go eat lunch then go straight to the hospital to the lab for blood work, then to radiology for chest x-ray, then to cardiology for an EKG and Holter and then you'll be done just in time to go to the Opthalmologist in the next town over."  I have all 3 kids with me, baby brother is being his usual mischief monster self, getting into everything and driving me crazy while Miss K is miserable and crying about wanting to play on my phone and big brother is climbing all over the place vying for someone's attention because he's being ignored...**sigh**  I text my mom and asked if she could meet me when she got off work shortly after we left the Pediatrician's office, of course she said "yes", we left the office with a handful of papers and orders, rushed to McDonald's for lunches to go and rushed over to my grandma's house to meet my mom.  Because we live 15 minutes outside of town and the hospital we had to go to is 20 minutes from "town" and Bug's Opthalmoligist appointment was another 20-30 minutes (traffic depending) from the hospital baby brother had to go with me or we wouldn't get him to his appointment.  I humbly asked my mom to tag along and watch baby brother while we did Miss K's stuff, we left big brother with my little sister at my grandma's house, thankfully my grandma was OK to take the two of them home to our house so they wouldn't have to wait around her house all day for us, I can't wait til my sister has her license!

Up first was blood work at the lab.  Miss K screamed the whole time :(, they drew A LOT of blood for the very long list of tests the Pediatrician had ordered.  And then they sent us off to Radiology next door for her chest x-ray, thankfully Miss K handled it pretty well once I promised her the lady wasn't going to touch her she was just going to "take a picture" of her.  Afterwards we had to find a McDonald's for my mom to eat since she hadn't had time to do so before we had to leave (yeah, my crazy occupied mind didn't think to get my sister and mom lunch while I was getting the rest of us food).  Then it was off to Cardiology for her EKG and holter, we got an adorable kid technician, yes he was a kid, really he was barely 21 and somehow that seems so young to me now lol.  He did a great job convincing Miss K that the EKG stickers were cool and that they would "tickle" her.  She decided he was fun to flirt with while he hooked up her holter monitor and wrapped it all up on her chest.  We left there with barely enough time to get to baby brother's appointment.

While at the Opthalmologist baby brother decided he'd had enough of Dr.'s offices.  After getting the eye dilating drops and being sent out of the exam room to wait he went into one of his inconsolable fits in the waiting room.  I tried everything from getting him interested in the toys to bouncing him around, holding him, putting him down, sitting on the floor with him, giving him my phone to play with, finding an interesting app on my phone for him, digging through my diaper bag for a treat of some sort only to find it devoid of anything edible because today I was far from prepared for a full day trip away from home, I was only supposed to be out for an hour tops, I did not predict being gone all day, we were lucky I had emergency diapers tucked away where they wouldn't get used in any other situation!  Nothing was working, I finally had to put him on the floor and let him get it out of his system...this was interrupted by a very rude Dr. in that office who decided to confront me in a moment of weakness.  Suddenly, amidst the screaming and howling from baby brother, I hear "Can't you console your child?!", I seriously thought the guy was teasing me, I've had that happen many times in the past, so I stood up and asked "I'm sorry, what was that?", I'm sorry I even asked.  The Dr. had the nerve to very rudely tell me I needed to console my child, I told him I was trying and he told me it was obvious to him that I was not trying, I wasn't doing anything for him except neglect him and let him scream.  The desk assistants both spoke up on my behalf and told him we had had a very long day of Dr.'s and that my little guy was in pain having his eyes dilated, the Dr. replied that there was no excuse for being the bad mom that I was and that I should be turned in for the way I was treating my son.  I said I was sorry and that I really was doing all that I could, at this point I picked up my little guy who started to calm a bit which made the Dr. think he was completely correct in his assumption and he said "see, he just wanted your love and affection, all you needed to do was pay attention to him and pick him up", I replied that that was not the case, that I had been holding him and trying to cuddle him up to the moment that he (the Dr.) decided to come see what the commotion was, at which point I had barely set him on the floor as he had flopped down to further throw his tantrum unrestrained, the Dr. had the nerve to continue to tell me that I was a bad mom playing on her phone, ignoring her child in need.  I quit trying to explain myself at that point, I just gave up, because how was I supposed to make this ignorant man believe that I was not playing on my phone but rather trying to figure out why the heck it had no service, and panicking because Dr.'s and hospitals and labs were supposed to be calling me at any moment to give me test results and my phone wasn't going to receive the calls leaving me to panic and wonder.  And during that time of "playing" with my phone I was juggling and trying to console my upset child.  The desk assitants were awesome enough to offer me animal crackers to see if he would calm, I graciously accepted as I looked into the Dr.'s eyes and said "because I don't want to listen to him scream either!!!", the assistants filled a small cup for us and baby brother instantly quit screaming to shove his mouth full of cracker, I very graciously thanked the girls and glared at the Dr. then went back to our waiting.  I wish I had more backbone...in fact if I hadn't of been so stressed, so worried, so very tired, that Dr. would have wished he hadn't of ever met me, but instead my stress, worry and exhaustion softened me and instead I just wanted to melt into a puddle of tears.  I wish I at least knew his name so I could call and file a complaint...I don't know if it would do any good anyway though and I'm beat and fed up with that kind of stuff right now.

We finally left the Opthalmolotist to go fill a prescription for baby brother's eyes, turns out he has an infection in them both, though thankfully it's external and there's nothing wrong internally.  We had to pick up my mom's car from my grandma's house so my mom offered me her keys so I could fill the prescription without kids and she drove my car home so the kids could sleep a bit longer.  Not so great was the fact that my phone battery was on it's last leg for the day and I had no phone charger in my mom's car.  I got to the pharmacy to wait 15 minutes and then be told that the Opthalmoloigist had written the prescription wrong and they had put a call in to him.  Then my phone decided to die and I still hadn't heard from any medical personnel!  Very embarrassed I asked the pharmacy techs if one of them had a charger that would fit my phone and if I could please charge it behind the counter, I am so grateful for their kindness, no questions asked they just plugged it in for me then tried to turn it on, when it wouldn't work we waited a few minutes and tried again, luckily it worked, and my prescription was not ready yet so they suggested I leave my phone plugged in until they were done, less than a minute later my phone was ringing with the Pediatrician calling me, I'm so grateful for the pharmacy technicians help or I would have missed that call!  As soon as I was off the phone with the Dr. the prescription was done and my phone died again.

The verdict is:  We have no idea what is going on with Miss K.  Her symptoms this morning have everyone worried, it's definitely a sign that her heart is/was in distress for some reason.  But her x-ray came back normal, her EKG came back normal for her, all her blood results came back normal.  And now we wait for her holter to finish recording and then see what it shows.

The Pediatrician thinks Miss K had an SVT episode through a lot of, or most of, the night and that I found her shortly after coming out of it, he thinks her symptoms were from her heart being tired after SVT.  I'm praying that's all it is because finding out she has something else wrong with her heart is a nightmare of mine.  I'm also hating hearing it could be that, this means she's having SVT again and we need to adjust medications, a sure sign she's not going to kick her PJRT, even though 4 months ago we were told she wasn't going to outgrow it, being completely SVT free is always a great thing, having ANY SVT is never good.

First thing in the morning I'm calling our EP Cardiologist and telling him about Miss K's symptoms, I'm going to get her in to see him in a week or two instead of the end of August when she's supposed to go in for her 6 month check up.  We've got to figure this out.