KayTar had an episode yesterday.
It didn't end until today.
Yesterday, around 1 in the afternoon, she called out, "Mom, my eyes are sick!" and quickly followed that with "I feel spinny!" She was leaning her face against the sofa in an effort to stabilize herself. I took her to lay down and gave her transdermal Zofran, just in case. She was completely lucid for an hour, only complaining of the dizziness. She couldn't sit up or stand, which she thought was hilarious at the time. She was acting a little goofy, too. During this time I noticed her eyeballs making tiny back and forth circular movement, like nystagmus, but rotational rather than side to side or up and down. They were very small scale movements, unlike the larger rolling eye movements we've seen in the past with these.
About an hour into the episode, she started vomiting, and that was quickly followed by the onset of the lethargy and pain. It was extremely painful for her. She would let out scream after scream when the pain hit her, then it would subside...then reemerge. I gave her Lortab, but it didn't seem to touch it. She continued to vomit in spite of the Zofran, too. She was incredibly light sensitive, too. We blacked out the windows and turned out the lights and she still kept a blanket on her face. It went on for hours. Seventeen and a half hours.
I went to bed, next to her, around midnight. I wanted to get a little nap because I was sure it would be over soon and she would be wide awake, but that didn't happen. She woke several times in the night, but was still unbearably light sensitive and sick. This morning she woke up around 6:30, back to her old self, all the symptoms were gone.
To my recollection, this is the worst episode she has ever had. The previous record for length was only 11 hours. The last time she had one that involved pain, it was April 2007. They are coming regularly again, it has been 38 days since the previous episode, which was 38 days after the one before that. We don't know why the episodes stopped for six months, but it is obvious that these are now back, following a schedule just like they used to.
I felt useless yesterday. I gave her medications, made the room dark and quiet for her, wiped vomit from her face and body repeatedly, but I couldn't do anything to help her. The medications weren't effective against this. As dark as the room was, it didn't relieve any of her agony. As soon as I wiped away the vomit, more spilled out of her. I could do nothing except wait for it to end, wait for her to feel better, wait for her to come back to me, and this time it took much too long.
My heart just hurts for her.
And for you.
Thinking of you two!
This breaks my heart for your family. I pray there are answers and relief for your sweet girl SOON!
So so sorry to read this post Kyla. When is that little one (and you too) gonna be cut a break!?
How awful. It is so hard to read (and harder to experience, I am sure) after all the wonderful progress she has made in other areas. So sorry.
That is just awful. And heartbreaking.
I'm so so sorry... your poor girl.
I hope she's feeling better today.
This is horrible and I'm so sorry for KayTar and all of you.
What causes her pain? Is the pain in her head (headache)? Or where?
That poor gorgeous girl.
I'm so sorry that both of you are having to go through this. I'm thinking of you both.
Oh, that sounds so horrible. Really, really awful. I'm so sorry.
oh Kyla. how terrible.
Poor baby and poor Mama. :( I'm sorry!
Kyla I am so very sorry this happened.
Ugh, I just hate it. Hate it for KayTar. Hate it for your entire family.
Keeping you guys in my prayers.
I am so sorry to hear about this episode and the return of regular ones! Heartbreaking. Am thinking of you and sending positive thoughts for an answer and relief. Too much, it is all too much.
no no no! my lord, i cannot believe that little angel has to go through this, and that you have to just....wait, this way, never knowing exactly what's going to happen. sigh.
Oh, Kyla. Your words so clearly indicate your agony. And I'm sure what we read is only a tiny, tiny understanding of what you feel when KayTar is away from you and in your arms at the same time.
Watching your child suffer is agony. Thinking of you both.
I came across your blog while researching for my son. He has these episodes too. They sound just like poor Kaytar's. He's 14 months old not and they seem to be coming every 60 days or so. He has the same light sensitivity, vomiting every 10-15 minutes. And he just "goes away". That's the worst part I think. When it's over it was like nothing ever happened. The longest was 15 hours for him so far. His neuro thinks it's benign paroxysmal torticollis because his head tilts to the side when it happens.
We also have low tone, hyper-flexibility and gross motor delays.
And now that we're trying to make the switch from purees to table foods I'm noticing a very sensitive gag reflex.
I'm so sorry you have to go through this. I know exactly how you feel. Hang in there, good luck.
CMK: KayTar's used to include the head tilt, but she outgrew that part and the episodes continued. BPT was on the radar, but then she lost the torticollis part. LOL. It does seem to be a migraine-variant of some kind, but just not completely categorized yet, I guess. We just wish they would stop!
Oh, Kyla, oh...I'm so sorry.
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