for all your prayers and support, they mean the world to us.
Storm has had a brain video kind of thing but the conclusuon is that he is not epileptic, it all looked good. 5 doctors are having a meeting everyday to see what they come up with on what he could have.
I have received a couple of links from you, my blog readers,(THANK YOU!) as well and I stumbled on this text, which is the same thing my sister is going through with storm:
My son was struggling with apnea, as well, and after he was released, I noticed some very weird repetitive breathing issues--mostly at night. We had a hard time waking him up from these events; we would do position changes, take him out of the crib, etc., etc. and he still wouldn't wake up. When he did, he would seem very disoriented. The doctors initially thought they were seizures, after I videotaped a few of the incidents. However, after having an overnight EEG and trying a few other ways to more aggressively wake him up, we determined he was responding to stimulus during the events--albeit aggressive stimulus. That basically ruled out seizures. Now, the general opinion seems to be that he has Sandifer's Syndrome, which is a reflux-related disorder (silent reflux) which mimics seizures. They started him on a twice/day Zantac regimen and we are seeing a decrease in the frequency of events. Message me if you woud like more information--but you may suggest your baby be evaluated for possible reflux.
I also have been thinking it could be Silent reflux in combination with sleep apnea. Of course I can be totally wrong here and it might be something completely else, but this might be worth a look at. My sister will definiatly tell them this. Keeping fingers crossed we will have an answer soon!
Corinnexxx
Thinking about it all the time.The daughter of my mom's friend has exactly the same!!!She had it when she was 1,5 years old.
Hope they find out what it is.
Posted by: Fauve | March 12, 2009 at 05:15 PM
Jee wat erg die onzekerheid zeg. Nog steeds niet weten wat dat kleine mannetje mankeerd.
Ik hoop echt dat ze er snel achter gaan komen.
Wie weet is het idd silent reflux...
Posted by: iris | March 12, 2009 at 07:52 PM
Big hugs from Canada to you and your family in this tough time. Hope the doctors come to a quick (and accurate) diagnosis so you can all breathe a little easier.
Posted by: Laura | March 12, 2009 at 10:07 PM
Ik blijf voor jullie duimen!! xx D
Posted by: Danielle Muit | March 13, 2009 at 10:53 AM
So sorry to hear this. I will pray every night for your sister and her darling son. Hopefully more blog readers will reach out and let you know about similar situations....it could help.
Sarah
Posted by: Sarah Pandolfo | March 13, 2009 at 07:40 PM
hurray for the internet! Wouldn't it be great to have found the cause so they can immediately give Storm the right treatment...
Kan ik je dit weekend nog helpen met de kits of dinsdag/woensdag overdag?
Posted by: monique helfrich | March 13, 2009 at 08:19 PM