Thursday, September 10, 2015

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.


  1. Oh I'm so glad you have an answer! And that it's "only" migraines. I know that sounds terrible but I'm so glad it's not anything else. Praying for Maggie: I know the feeling all too well!!

  2. So thankful that you have a diagnosis. Prayers for healing for sweet Maggie.

  3. Hugs! My brother started having migraines when he was little. His were a little more obvious and it helps that he isn't autistic so he was able to say it was his head hurting. He'd get real ashen looking and vomit. Hot baths helped him. Back in the day they didn't really have any treatment suggestions for children and this was before they had many drugs on the market for adults even. So my mom just put him in the bathtub and then tucked him into bed when he felt bad. Hopefully Maggie will be feeling better soon. Now I think everyone in my family besides dad who doesn't suffer from them has some sort of way to manage their migraines, which is great.

  4. I've been hoping you would have a chance to tell us how things went - what a relief to get a diagnosis! With a family history of migraines, it isn't all that shocking, although I didn't realize that such a young child could get them like that. Keep us updated!

  5. I am so happy there is a diagnosis. I am so sorry she has been having migraines (I have the myself) but at least there is help for them. I will keep up the prayers.

  6. If the Coke works, then its medicine! Maybe though she would take a flavoured black or green tea iced? Just to cut down on the sugar. But if she won't drink that, then Coke it is.

  7. I understand why you'd hesitate to use a cola on a regular basis -- the way people suck that stuff down, as if it's oxygen! -- I really believe our overuse of soda pop, with corn syrup or artificial sweeteners, is about half of our dietary problem in the U.S. I believe it's contributing to everything from osteoporosis to behavior issues to various organ failures, and of course to obesity and Type 2 diabetes.

    However -- God made caffeine. God made the various acids in soft drinks. God even made sugar! If you find it helps the child, use it! It will be a medicine to her. It's not as if you give her gallons at a time.

  8. Poor thing but so glad you're getting answers and a plan to help manage. You all have been through so much this year. Continued prayers. You're motherhood and fiat is such a gift to your beautiful Maggie!

  9. I almost never comment, but as a fellow mom of a special needs child, I just want to commend you on what a good job you do taking care of Maggie. It can be so hard to find the right specialist for every issue, to realize when there is an issue, to care for each of your children, but you do such a beautiful job of balancing it all. I hope Maggie is able to find some relief soon. I'm glad you are using the Coke as a temporary solution-- I just learned that long term use of caffeine to treat migraines can often make them even worse! I will pray for you all!


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