This trip was a lot less hectic than usual for a lot of reasons. We knew it was coming 24 hours ahead so I had time to pack, plan, get the kids squared away (versus the usual of "You're staying" and then the mad scramble). It was also easier because he isn't truly "sick", it was for a test so they acted differently to us. Finally (and this is huge), because he was on "Long Term Monitoring" ... they weren't allowed to disturb us in the night! (Versus the usual endless trail of people every hour or so.)
I also felt more "relaxed" once he had his episode and I knew they were watching and recording. That we were closer to answers. And I just had to wait for the diagnosis.
At 8am, the Neurologist came in with the news, "No seizures". I never thought it was, but many, many specialists had seen his episode and thought it was. Why does it matter? They're getting closer together, longer in duration and more intense. AND, seizures are the "end stage" of Leukodystrophy.
So what IS it? We need to find out and soon as these episodes are bad enough to cut off his oxygen and he desaturates and he could die during one. So we need to find out what is causing them. GI? Respiratory? Other?
As I drove home, I thought to call the Hospice staff. The Hospice Doc saw him after the episode yesterday and the Hospice nurse saw him during one a few days ago. Maybe we can figure out our next steps. Which specialists to see next? Tests? So that will consume our next few weeks I'm guessing.
Later I'll have to blog about the people we ran into while at the hospital ... little "clues" of why we're on this journey. But for now, Manny just woke up and I'd rather play with him. Time well spent.
So happy that the hospital visit was a pretty good one! He is absolutely one of the most beautiful children I have ever seen Beth! We will keep praying for some clarity with the testing. Blessings! Kelli
ReplyDeleteHave you tried rolling him on his side when he starts the episodes? I'm sure you have...I'm just curious if it changes anything for him? How about massaging the sides of his neck during the episode? Does that do anything? I hope you get answers soon. It makes me laugh a little that so many medical professionals said the episodes were seizures and a group of moms who have seen seizures in their children said they weren't...and the moms were right. lol It makes me wonder that they all said "seizures" because they are looking for seizures. They think that seizures are "next" on Manny's timeline so anything odd that pops up "must be" seizures.
ReplyDeleteOh and I love the kiss that he gave to daddy (pic). You can tell he is glad to be home.
ReplyDeleteBeth, does he still have his fundoplication? Do they know if he has a motility problem (stomach not emptying quickly enough). Abby has a severe motility issue, and gagged and vomited frequently when her stomach could not empty properly. If she had a fundoplication, that would have prevented her from vomiting and I am assuming she would have just gagged endlessly and nothing could have come up. That's one thought I had when seeing his video of the mild episode. So glad it's not seizures!
ReplyDeleteWhat type of EEG did they do? There are many types and if they are deep in the brain, an EEG doesn't always pick them up. What specifically does he do when he has these episodes?
ReplyDeleteElaine Forrester
mother to a teenager with autism, epilepsy, and MR
I've been checking Manny's blog everyday since the day we met in the hospital(not to mention one of the most amazing experiences I have had throughout this journey called life) I am so happy to hear that they were not seizures. Seeing the pictures of him and his Daddy hit that place in my heart that make me smile and tear up at the same time :) This is extraordinarily special and my thoughts and prayers are with you, Manny, and your family everyday. Give Manny a "five" for me! Stay Strong... as I know you will.
ReplyDelete