Well, I have learned that Wednesday's night of continuous vomiting and seizure like behavior might have an answer...."cyclical vomiting." It is neurologically based, not GI. One parent said she records her daughter's episodes and can track it to the week, nearly the day, of when it is going to happen. There is always much discussion within the CHARGE listserv on this issue, so I am looking forward to learning more from fellow families...the true experts!
Of course I will also involve the neuro docs. I am calling them on Monday to schedule a clinic appointment. Feels like we are living at Children's this month...we have so many appointments. What's one more? :)
Hopefully we will get some answers. While the neurological explanation definitely concerns me, it would be helpful just to understand better what is going on with Maxwell. That night was very scary and I don't look forward to the next episode....especially if we don't have answers.
5 comments:
HUGS to you both and I hope you get some answers soon. We are going to see a nero doctor also to see if Eva might be having small ones. But I have to see her peds 1st and get them to fill out some paper 1st.
Good luck!!
Crystal and Eva
Wow, that's so crazy. Who would've thought that vomiting could be linked to a neorological issue??? This CHARGE Syndrome sure keeps you guys on your toes. We'll be thinking of you as you make your many visits to Children's this month and pray that you get some sound answers.
love to you both--
Lori
saying prayers for you guys. Careful we may run into each other in the whale section.
i have cvs and you can pin mine down to the minute soemtiems so if im eating soemthing like sweet stuff u can b sure ill dump hugs ellen and u no the wierd thing i ca eat soemthing we all think i wotn do k on and go fine and soemthing we think ill b ok and vomit wierd
Hope you get some answers from this, Amy. It's definitely worth checking out, especially if you start seeing a pattern to the vomiting. Katie's is actually very mild--once every two months and lasts only for a few hours. There are a couple CHARGE kids I know who get it for days at a time. :-( I believe they take meds for it. Another mom on the list whose son has it less severely says that by giving liquid Advil right at the onset of symptoms, she can pretty much stop his. That doesn't seem to help Katie--hers has to run its course--but it might be something to try with Max if this happens again.
Hugs to you and Max--hope you get some answers!
Leslie and Katie
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