well... one of the strongest rules from my surgeon is "no hyperventilation"........ i'd never thought to ask why, and my GP didn't know.. so I did some research and found a few snippets...

Hyperventilation has been identified as a factor that may induce ischemic symptoms in Moyamoya patients. Matsushima et al. investigated 169 EDAS procedures in children and found that 6 (3.6%) of the patients developed cerebral infarction as a result of hyperventilation associated with crying. It is extremely important to prevent perioperative crying in these cases.(oops! no more of that then!)

Perioperative cerebral infarction of varying severity was seen in six Moyamoya patients. Severe hyperventilation with crying was the main trigger of infraction.

Blood vessel constriction can be caused by hyperventilating (??? i think this was the gist of it)

anyone else know more?

 That's it Emily,Hyperventilation can cause the blood vessels to constrict.In fact Kahtleens Primary care explained it to us and he said that someone with a closed head injury they may mimmick hyperventilation to constrict the blood vessels and make room for the swelling, so it won't cut off the vessels completely.It's taken us a LONG time to relax just a little when Kathleen cries.It still worries us  bit when she gets crying for a long time,sometimes she'll start to hold her head while she's crying and she can't seem to stop or hear me trying to talk to her.That's reallly scary.
Mary Grace

Emily,

I read the same study as you when Daphne was first diagnosed.  I was so incredibly paranoid about it - since Daphne was a developmentally delayed one year old, and there was no way I was going to keep her from crying before or after surgery.   Thankfully, nothing happened to her when she cried.   I have read that breathing into a paper bag can help prevent hyperventilation --  a little hard to do with a baby, though  ;)

I also read about studies of EEGs in moyamoya patients.  They found that during hyperventilation the EEGs became abnormal, and some children had seizures.

I never noticed any connection between crying and seizures or other neurological problems with Daphne, though *knock on wood*.  Daphne would sometimes cry during seizures, but that would be after the seizure already started.

Jenny

Emily,
When I suffered my post-op stroke (on left & right) as a set back, I was trying to communicate.  I was afraid of what was happening and would hyperventilate.  Because of the stroke on the right side it affected my emotions.  Which would cause to become real sad - immediately start crying (hyperventilating).  I've since improved and pretty much returned to my normal self.  Just in time for the second surgery.
take care,
lee

Hey thanks... some interesting points in there...
just recently i've been crying a lot, partly stress, partly just unreasonably emotional and can't figure out why i'm sad... but yeah when i cry, i cry and then i hyperventilate beyond the point of ridiculousness... and Mary Grace i think know might know what Kathleen's feeling, i always have to hold my head, it hurts like hell and sometimes feels like it'll explode or something (not really of course! not trying to scare you, but that's just why i do it)..
but after saying all that, apart from being shaky and twitchy sometimes, i haven't noticed anything MM or stroke-like happen after crying... which is lucky..

p.s. mum i know you're reading this, don't freak out!

Emily,

Your description of how you feel after crying is really interesting to me, since my daughter cannot speak, so we are always guessing about what is going on with her.   We've had many nights when Daphne cries from 3-6 (or more)hours straight.  At first the crying is not too bad, seems like maybe gas pains, or something.  Then it seems like later she gets completely inconsolable (rubs her eyes, drools, half her face turns red, very sensitive to sound/light).   We've noticed that sometimes if we're able to do something to stop the crying early on, Daphne will have a much better night.  Other times, she gets herself so "worked up"  that she just screams and screams all night. Her hyperventilating while crying is always a sign of her getting "worked up" and we know we're in for a long night  :-[

Now I'm wondering if something benign (like gas or indigestion) could start Daphne's crying, but maybe once it gets started it could cause a headache??

Makes sense.  We've heard everything from reflux to seizures to explain her extreme colic... but how you describe your feelings after crying make more sense to me.  

I'm sorry for your crying and headaches.  I have had lots of crying/emotional episodes since Daphne's had her surgery, too.   I think it must be the stress.  I know how crappy I feel after crying (and just before, and during....) adding a horrible headache to the whole process must be so frustrating!  >:(

Jenny

yeah it might explain a few things.... i get horrible headaches, usually i hold my head at the forehead with one hand and the back of my head with the other.... trying to keep it all together... i usually take painkillers and it subsides.. but yeah the hyperventilating (HV) definitely gets you more worked up as well! i guess also cause i know i shouldn't be HV so i get worried, than get sad because i have to be worried about it.. haha.. bit of a circle!!

anyway no crying today! yay! (admittedly i spent the whole entire day in bed reading a rather amusing book, but meh, i'm allowed... :D )

edit#1: not to mention, the crying -> hyperventilating business always ends up with the "wooshing" in my ears being a lot louder.. this could get distressing for a child, not knowing what the noice is etc.... (hope this is helping and not going the other way!)

edit#2: another thought... being on blood-thinners, i bruise easily (as in, you look at me, i bruise! hehe).. obviously... and they hurt, sometimes the bruises aren't really visible but it still hurts.. my GP said this is totally normal for someone on those medications... but they could also trigger crying in a baby, then then the subsequent headache etc...

man it must be SO unbelievable difficult working with someone (you're children especially!) who can't communicate what they're feeling... you guys are [glb]A M A Z I N G[/glb]

Emily, I can't thank you enough for sharing all your feeling and experiences with us.it is hard when your child can't tell you exactly how thye feel.I rely so much on all of you who can speak aobut it to help me to figure it all out.As Jenny said I feel that the crying is triggered by something benign,something as simple as she doesn't want to get dressd or bruch her teeth and then it escelates. That's when she holds her her head and doesn't really respond to me until she stops crying.It always scares me but she seems OK after she stops.She never really complains about anything "hurting" if I ask her she always says "I'm fine".(even if I know something hurt).I pray for the day she can tell me what she feels.Thanks again Emily for sharing with us!!! Jenny  it's so tough when they can't speak and tell us what's happening and how they feel.You've probably tried everything but some things that helped to sooth any of our kids was a warm bath(sometimes I would get right in the tub with them (doesn't hurt to relax a little too LOL) or light massage and soft music. Hang in there, she'll be talking your ear off before you know it.
Mary Grace