Here We Go Again

It seems like every few months, just as we are adjusting to Grayson’s current issues, something else emerges.

A new symptom has popped up in the last week- headaches (maybe). For about a week now, Grayson has been grabbing his head- either the sides of his head near his temples or the back around his neck. And he either cries or whines when he does it. I let it go for a few days, but yesterday he was all sorts of grumpy (and pukey) on top of grabbing his head, so I took him to the doctor to rule out an ear infection (and yes, I also thought of teething, but there’s no sign of any teeth).

Sometimes, I really wish Grayson could just tell me what’s wrong…or at least point to what hurts.

Honestly, I was hoping it was his ears, because that would easily explain the head grabbing- and ear infections are “normal” and fixable. But is anything with Grayson ever normal? Not so much. Ears were perfectly clear, and Dr. D even ran a strep test- negative. We left the doctor with no real answers, but really, all I went for was to rule out ears, so I shouldn’t be disappointed we didn’t get anything else. Oh, G also has a pimply rash on his cheeks, but Dr. D thinks that is from all the drool and laying in drooly-wet sheets when he sleeps (G is no longer swallowing-grrr, I know-so the saliva has to go somewhere).

Headaches (migraines) are yet another symptom of Mito. My heart is breaking that here we are with something else to add to the list. Of course, I’m not absolutely certain that’s why he’s grabbing his head, but we were at a friend’s house this morning and he started doing it, and was very fussy. We gave him Advil and he stopped the head-grabbing and was a lot happier. Hmmm.

Next week is going to be exhausting- three specialist appointments in a row-Monday, Tuesday and Wednesday. But we need them. We see a pulmonologist Monday- it will be our first visit. Tuesday is GI, and I want to discuss possibly trying a different formula to see if that would reduce the vomiting episodes, and also to see if he wants to do another swallow study. G’s OT doesn’t think it’s safe for him to drink liquids by mouth right now- he doesn’t swallow and the liquid just sits in his throat and makes his breathing gurgly. Not good. Wednesday we see Dr. R (neurologist) and I am SO GLAD. He’s going to love the list of questions I have for him- ha! I want him to interpret the muscle biopsy report, and I want to discuss the headaches, the supplements G is on and another we may want to add, blood results he ordered last time, seizures, and if/when we need to do another MRI.

This afternoon, I got a call back from the Mito clinic in Houston. The first available appointment is not until July. I am honestly ok with that, because by then, we should have all the results back from the biopsy as well as another completed appointment with our geneticist.

Forgive me if a lot of my posts on this blog are turning into a medical journal for G. I’m really, really bad about keeping written records and this is an easy and convenient way to write down my observations of what’s happening. I’ve used this blog as a reference many, many times to remember when we saw such-and-such doctor or had such-and-such test run. As always, thank you so much for your comments and support.

And now, so this post isn’t too boring/depressing- here’s some pictures from our day. Today was a BIG day for both of us- Grayson’s first ever ride in a shopping cart! We got a new pad for the cart with pillow things on the side to support him. Here’s our first few seconds at Target:

Woo Hoo! This is fun!





And then about 5 minutes later when he toppled over and conked his head on the side of the cart:

I’m over it.

When we got home from Target, we had about 20 minutes to kill before bathtime and it was breezy and beautiful outside, so we hung out in the yard for a little bit (thank you J for the walker- it’s perfect!)

Headache?
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8 thoughts on “Here We Go Again

  1. My son has some language but still it doesn't give me any ideas what is wrong with him. It is so hard, I can't tell you how many of my doctors visits have been for the same reason, to rule out an ear infection. I think it is good to use your blog as a medical journal. I started my blog up again because I didn't know (and don't know) what Matt has but I wanted future people to be able to read my blog and have details on what we went through and what symptoms he had along the trail of dx.

  2. So sorry for the head grabbing and possible headaches, but have to say, even him grabbing at his ears is cute! Makes his cheeks look extra squishy. Love the cart pics, whoo hoo, this is a very big day indeed!!! Sorry for the bonk…glad he recovered. For sure this is a great place to keep everything in one place, and those of us that read it care deeply and want to know how little G is feeling…so give us the details any day, (and never apologize…this is your little corner of the internet!)xoxo-E

  3. My heart sank when I saw the title of your post… It's never easy. I want so badly for things to go your way. My heart aches at the thought of G experiencing migraines… As an adult who had them (& they've been HORRIBLE since Jack was born, one involved a trip to the ER) I can't even imagine a child experiencing them. Fingers crossed that it was teething, sinus pressure, etc.And I appreciate hearing all about the details of G's medical appointments, test results, doctor's visits, etc. This is what's going on in your life (& in G's) and we all want to hear about it.As usual, G-man is a handsome little devil. SO CUTE!!

  4. Thanks so much Stef for all your support! And I am so so sorry you are having migraines- I've only had one in my life (when I was pregnant)- and I thought I was going to die! Hoping things will get better for you SOON!

  5. Poor kiddo! Headaches at his age is just so sad :(. It's so hard to see them hurtig and not be able to communicate what's wrong. Love the pics of him in his walker! Too cute!

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