Migraines

 The last couple of weeks have been especially hard on our girl. She has been suffering abdominal migraine after abdominal migraine. They have been lasting days. She can't eat anything and when she does, she loses it all. She gets so hungry, but can't keep anything down. It makes her so incredibly sad. She misses out on fun and school. She hates it all.  On top of the abdominal migraines, she is now getting headache migraines as well, complete with light sensitivity.

We hit the tipping point last week and set an appointment with a neurologist. Izzy's GI doc and cardiologist had been working together on the abdominal migraines, but since they are no longer controlled, we had to see the true specialist here.

Thankfully, we were able to get in to see a neurologist today. I was skeptical going in because this was not the neurologist I wanted to see nor the one recommended by Izzy's doctors, but she was available, so we took it. I'm glad we did because she was thorough, kind, and very well-educated. Not only did she appear very, very competent in the problems we were addressing (migraines), but the overall picture of Izzy. This may be the first specialist who was not only looking at their system, but the entire package that is Izzy. She also had a ton of knowledge of 22q deletion syndrome. While not an issue today, she was thinking down the road with other things we may need to do for Izzy because of the 22q. Our appointment lasted 2 hours because of the doctor's thoroughness.

She woke up feeling good for the first time in days. It didn't last long, but made us all happy.

Izzy finally eating after a migraine that last 3+ days.

Ultimately, she decided that Izzy is probably suffering from abdominal migraines to an extent, but that other things are at play as well. She wants to get the migraines addressed and is doubling Izzy's migraine maintenance medications to try and prevent the migraines in the first place. She also gave us meds for when Izzy is in the extreme pain, which she was during the appointment--vomiting in the lobby :( If this doesn't work, the doctor is looking into some of the other preventative medications. Unfortunately, many of the big gun migraine meds counteract Izzy's heart meds or could worse her heart problems. The doctor wanted to be sure she checked all counterindications before starting another new med for Izzy. We are hopeful.


Finally, some more pictures from the last couple of weeks. She may have felt lousy most of the time, but that doesn't stop her smile. Gotta love this girl!

 

Izzy did get her holter monitor last week (in the picture). We have not heard the results yet.

 Thanks for checking in on our girl.

Mel