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.