Mermaids, Migraines, and the Doctor she Likes

Yesterday I watched as one of the specialists that Maggie sees walked into the children's waiting room and said hello to us.  She jumped up, put down the book and toy she'd been playing with and raced out the door.

I was ready to chase after her, but she knew where she was going.  She skipped ahead of him to his office, and ran giggling over to the sink where an empty cup was waiting for her.  Her tiny mermaid doll was going for a swim.

In the moment, while I was relating to him the huge changes since she began her new migraine medication, I didn't fully appreciate how extraordinary that appointment was, from beginning to end.

Maggie hates doctor's appointments.  She can identify a new waiting room as a doctor's office's waiting room immediately and will become inconsolable.  Usually exam rooms are slightly better (waiting rooms are the worst), but the hours we've spent in these spaces are the longest in any day or month or year.

It doesn't matter if there's a huge fish tank or twenty different toys to play with.  She will not be convinced that these places have anything redeeming about them whatsoever.

So the fact that she stayed and played in the little waiting room until it was our turn and then led the way to the doctor's office, was nothing short of miraculous in my mind.

During the exam portion of the appointment she sat on my lap while he listened to her heart and she said "bu- bump, bu- bump, bu- bump" with a smile while the stethoscope was on her chest, and while she was wiggly during the rest of the exam, she wasn't upset in the least.

This is especially exceptional, however, because this was the doctor that I'd initially feared meeting.

When we were first referred to him and I mentioned it in other appointments, a general silence would follow.  From therapists to social workers to other doctors, it seemed no one didn't know of his reputation.  But the time I met him I'd heard stories of terrified interns and terrified parents. And everyone wanted to warn me to be ready when we went in for the appointment about his bedside manner (or lack there of).

He was brilliant, everyone told me, but... not good with patients.  Or just people in general.

I was ready for anything at that first appointment.  And I was stunned when he was amazing with her and completely kind to me.

We've seen him more than a half dozen times now and he is one of two doctors that Maggie is enthusiastic about seeing.

She dances and prances and makes her mermaid doll swim around his office while he sits at his computer and types out the changes since our last appointment and they are without a doubt the least stressful doctor's appointments that we go to.

And I'm incredibly thankful that she's been lucky enough to see him.  Since getting her migraines under control she's so much happier and more playful.  I hadn't realized how much they were affecting her until she began this new medication and the instances of headaches went way, way down.

Less headaches have meant more words and more talking at home, and it's meant being happier to play with friends, and spending more time playing with her siblings instead of going upstairs and hiding under the covers because her head hurts!  Sounds don't seem to hurt her anymore.

I'm praying that the medicine continues to work and keep the headaches at bay!  I can't believe how much they'd affected life every single day before we figured out what was going on.

Updates: Pregnancy, Puppy, Migraine Meds, and Maggie's Words

25 weeks arrives tomorrow (which basically means it took me three days to write this since as I hit publish I'm at 25+1) and I have been meaning to add another update for all of week 24, which ends in all of two hours (if I manage to finish this post tonight). 

I went to my doctor's appointment last week and discovered that my doctor learned about my repeated calls the entire week between the hospitalizations, after he readmitted me to the hospital the second time.  You see, after I came in sobbing and was re-hospitalized with a kidney infection, he went back and looked in my chart and was surprised to see I'd been calling all week long complaining of being in terrible pain.  

So when I brought up my concerns about being afraid of not being listened to if I called in, as had happened all week, he explained that it had been discussed and that the people involved knew that I had ended up back in the hospital as a result of what had happened.  

And then I explained a little more about how the conversations had... unfolded... (like when I said I was in terrible pain and I was told "well you sound better, so that's what I'll be telling the doctor." except apparently no one was telling my doctor anything at all.).  

However at the moment it seems that both the flu and the kidney infection are behind us (I hope!  I really, really hope!).  

The kidney pain is slowly getting better and better, but it's flared up a couple times (like this morning!  Stairs are harder on kidneys than one would imagine when they're healthy) with enough intensity that I was willing to agree to the every day antibiotics for the rest of the pregnancy to prevent it from coming back again.  

About a week into the four times a day antibiotics the pain came back pretty sharply, and we narrowly missed having to head back to the hospital, and so I'm pretty set on avoiding that happening again if it's at all possible.  

Still at 0 lbs weight gain from all the sickness...
hopefully with the medicine I finally asked for to take care of the morning sickness
that will change.

Patch is talking up a storm.  I'm pretty sure that at the end of the year he won't need an IEP anymore, or speech.  He tells us exactly what is on his mind all day long.  

His goals in life right now, include carrying Puppy (who he finally told us is actually named Bubble Puppy) absolutely everywhere, no matter what he's doing, and moving into a farm.  Preferably a farm with a big red barn like this one:

Every time he sees a farm he starts yelling "Home!  Home!" out the car window.

In other news, a certain someone is thriving since starting a daily migraine medicine.  

After trying a few other things (magnesium...) and tracking Maggie's migraines since fall, I agreed with her neurologist when he suggested that something preventative was in order.  

During the whole of January and the first half of February she was having about 15 instances a month of her pupils being dramatically different sizes, and besides that she seemed to be having obvious headache symptoms at least once a week, so I went to the pharmacy and picked up the bottle of tiny pills.  

After two days I asked Paul if he was seeing what I was seeing, but he wasn't quite sure.  By the end of the first week there was no doubt, and he was seeing it too.  

She was calmer and more social at home.  Instead of going upstairs and laying down in her bed and pulling the covers up over her head (a definite clue on headache days) she would stay downstairs and play.  She's less likely to cry if her sister coughs.  And she's just all around happier.  

We seem to have found something that's working and I'm hoping that as I continue to track the differences in her pupils we see a dramatic reduction there as well (I've been watching and I think it is less, although it still happens occasionally... three times this month so far, instead of around fifteen).  

We did have one major meltdown this week.  

It involved going on a shopping trip.  Everything was going well but the boys were fussy, so in between stores we decided to swing by a park that was nearby.

The park happens to be at the converted school/autism center where Maggie goes for speech therapy once a week.  We've gone here before just to play and it's been fine, but this time I didn't talk about how we were just going to play before hand.  Big, big mistake.  

We arrived and Maggie got out of the car and bolted towards the front doors (which were locked because it was the weekend).  

I realized my mistake.  I took her hand and led her towards the playground, explaining that there was no school today, we were just there to play at one of their three awesome play grounds.  

She could not be convinced.  She kept telling me "Homework! Homework!" (I'm not even sure how she knows that word) and trying to go back to the doors.  Tears followed.  

Finally, after a very long five minutes, she found a pile of leaves near one of the doors on the playground side and decided to play with Baby Mermaid over in it.  Her siblings all joined her, ignoring the play structure.  

Happiness was restored.

She was especially thrilled when James crawled all the way over to play with her:

And she finally got to go to speech yesterday, where she spent a great deal of energy trying to sneak over and move the items on her visual schedule from the To Do column to the Finished column, even though they were among her favorite activities.  Like swinging:

On a final note we had a major victory yesterday.  It took the form of a tiny conversation.

As we were walking to the car for speech, with Maggie's little hand clasped in mine, I heard her tiny voice say "My tummy hurts me!"

I stopped and stared at her.  A sentence?  With two pronouns that were actually correct?  And that were telling me something?

"Did you just say 'my tummy hurts me'?"  I asked.

"Yeah." She said and then climbed into her car seat and waited for me to buckle her up.

And suddenly I had information that I could use to help her, information that with our tough little girl, I never would have been able to figure out on my own.

I may get a few dozen fragments about mermaids a day, but that sentence is a huge deal around here!
And that is the latest as we embark upon these last days until Easter!  This Lent has been a unique challenge this year, but we're in the home stretch!

Uneven

I finally got the picture that I've been hoping to get for months.  

I've described what Maggie's eyes look like over and over again to doctor after doctor.  I'd been told it would be helpful if I could get a picture, but getting a picture when she's having a migraine isn't the easiest task.

Last week she came home after a rough day at occupational therapy.  Usually we hear about how great OT has gone and she's always incredibly impatient to go, so I was surprised when Paul brought her home and said that it hadn't been great and they were wondering if OT should be stopped.

While I tried to keep my head from exploding, and hoped that maybe something had been lost in translation when Paul brought that particular gem (because I find it hard to believe that the child who cries hysterically in pain every time her sister coughs doesn't need sensory focused OT), I took Maggie up to our room and noticed that she definitely seemed a little under the weather.  She lay on the bed while I hung Christmas lights on the windows and set up a line of little fake candles on the window sill.  

She was quiet, but happy to watch the lights and look out the window.  

After a while I lay down next to her and let her look at herself in the camera on my phone.  She loves to do that:

It wasn't until the next day, when I was looking at the pictures, that I realized what I'd captured in the pictures:

Here's an example of a moment when, after being in a bright room for about fifteen minutes, her eyes weren't dilated to the same size.  This is what all the doctors' appointments have been about.

It's a relief to finally have a picture to show the doctors what so many family members and therapists have seen over the last eight months.

I think it's very likely migraines, as the doctors have suggested.  I'm so thankful the MRI was normal.  She does have some moments that seem like they might be absence seizures, so we're keeping an eye on those, although I can't imagine that we'll be able to perform the test the neurologist would want to do to confirm those (Maggie, holding still for half an hour with sensors attached to her head?  I don't think so).

Now hopefully, after a rough week last week, we'll have a migraine free week this week!

A Neurology Appointment and a Diagnosis

This morning Maggie and I had to be over at the University by 7:30 and so we were driving across campus as the sun was coming up, blinding us with its bright orange light as we made our way east.

One of her therapists met us in front of the neurology building and after completing a huge amount of paper work that I never would have managed without her help (which is to say, with Maggie on my own), we sat down to wait, while Maggie told us the names of different types of fruit and pretended to feed them to her doll.

We were called back and spent about forty five minutes giving two residents a complete rundown of her medical history.  I brought up anything that might possibly be relevant, and the phrase "I don't know if this has anything to do with it but..." must have come out of my mouth a half dozen times.

We talked about how her pupils are different sizes sometimes, and that more and more often this seems to be connected to her meltdowns.  We talked about how sometimes her pupils are giant and don't react to light at all.  And we talked about that one time, when they were enormous, and she came up to me with a blanket over her head, and I asked her if her head hurt and she fell down on the floor sobbing.

At some point I told them that a little over a year ago she'd started pointing at lights and saying "no rainbow, no rainbow" in the most surprised of voices, so I suspected that sometimes she saw rainbows around lights and how she's only recently been willing to look directly at any sort of screen instead of always viewing them from the side.

I explained how sometimes, lately, this most coordinated child of mine has been exceptionally clumsy, and how my champion sleeper, who needs 12 hours every night, is suddenly exhausted and now sleeping.

After we went over everything and he examined her, he announced a diagnosis, and it was a very, very long name that I instantly forgot.

But it basically means that he thinks she's having lots of migraines, and her pupils are different sizes during them, and that the effects of those migraines, the auras (the "rainbows") are there even when she isn't actively having a headache.

Around this time I realized that it was around a year ago that I'd stopped giving her magnesium (which she'd been taking to help with her gut issues, which seriously improved around that time) and I also mentioned the fact that she seems to feel much, much better on those rare occasions when I let her have a little glass of Coke as a treat.

It's the only caffeinated drink I've been able to convince her to take and after more discussion and questions about his effects he suggested I let her have a small glass each morning, since it seems to have a major calming effect on her and she seems to feel much, much better after having it.  And he suggested I start giving her the magnesium like I was before, while waiting to get in to see the regular neurologist who she'll be seeing to help manage the migraines.

It was kind of funny because while I could clearly see that drinking Coke helps her I was still hesitant to give it to her regularly because, well, it's Coke.  But after answering a series of questions I had to admit that she doesn't seem to have any negative side effects when she has it and it seems to make her feel significantly better and calmer, so it likely is a good tool to use in small amounts while we figure out what's going to help these headaches go away.

This is good news, because we have an idea of what's going on that answers all the concerns I had and we can help her now.  But it also makes me feel kind of terrible because it seems like it's likely she's been in pain for quite a while now, and I had no idea what was going on.  The more frequent meltdowns all summer were likely migraines and she had no words to communicate how she was feeling to us.

I keep remembering the day a few weeks ago when both her pupils were totally dilated and she came over to me with a blanket over her head and I asked her if she had a headache and she burst into tears and I had the sudden feeling that it was because I understood her and she was relieved.  It breaks my heart that it took so long to understand what was going on, but it's such a relief too, because hopefully we can get these under control now.

Thank you to everyone for the prayers and answers to the questions I've asked and suggestions!  We'll be going back in two and a half weeks to see the other pediatric neurologist and hopefully begin to get this out of control.