tag:blogger.com,1999:blog-401303964563152307.post5300778827316183521..comments2024-03-28T03:35:52.176-04:00Comments on Love That Max : Screw you, brain damageEllen Seidmanhttp://www.blogger.com/profile/01433429847255621203noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-401303964563152307.post-91436880797336693612009-10-19T01:18:23.514-04:002009-10-19T01:18:23.514-04:00Dear Ellen,
My daughter also is about to turn 6 w...Dear Ellen,<br /><br />My daughter also is about to turn 6 was born with CP as a spastic quad. The neurologists were all very upset with the MRI. Said she only had half a brain. Said she'd never walk talk, sit, stand, see or hear. Well, she can see, hear, is doing a little talking, has about 100 words, has no contractures and they don't think she ever will (thanks to 250 HBOT treatments begun at 2 months old). They said she was seizing constantly as of 2 months ago and now she's on kepra which has helped. She still cannot sit, or hold up her head, or trunk, or swallow. We have to suction her saliva out of her mouth every 5 to 15 minutes 24/7. But she's learning to read and also loves to count and add. Your news about the half brain rewired certainly gives me hope. Thanks for sharing. We don't have a blog yet becasue we've been in a complete state of crisis ever since she was born and I have so little time to write. But we do have an outdated website www.friendsofsara.com I love your blog and thanks for passing on so many helpful things. I saved my daughter's baby teeth last week and the stem cells are viable. I sent two e-mails to Duke U but got no responses. Do you know if they are still taking CP kids? I think Max is doing fantastic and you all are wonderful parents. Hope those stem cells are spinning around in him doing wonderful things. <br /><br />Melissa PerryMelissa Perryhttp://www.friendsofsara.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-62723541509808751942009-10-17T09:00:57.446-04:002009-10-17T09:00:57.446-04:00you are such a nice mom :)you are such a nice mom :)Joanna Goddardhttps://www.blogger.com/profile/18109285188206811042noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-68458240808882904432009-10-15T23:45:49.381-04:002009-10-15T23:45:49.381-04:00Hi Ellen. I just came across your blog. I read Max...Hi Ellen. I just came across your blog. I read Max's story and am just thrilled that he's doing so well. He's adorable!jennoharahttps://www.blogger.com/profile/15450056329789727278noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-67219950594615216822009-10-15T16:51:07.066-04:002009-10-15T16:51:07.066-04:00The picture cracks me up!
Graham's last EEG ...The picture cracks me up! <br /><br />Graham's last EEG was so long ago, he didn't cooperate so the results weren't valid. I didn't give a crap and never went back. He only seized for a day because he was actively bleeding in his brain, we weaned off his phenobarb and he never had an issue.<br /><br />I hated hearing about his bleeds when he was on ECMO, nobody could tell us what the effect would be, all we were told was 'wait and see', and that the brain is very plastic.<br /><br />I hope you get good news about this latest test! <br /><br />And I hope you show his girlfriend that picture someday.Cristinhttps://www.blogger.com/profile/06278630444931205359noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-57905566374386402002009-10-15T10:46:31.129-04:002009-10-15T10:46:31.129-04:00I'm sorry but that picture is just precious. ...I'm sorry but that picture is just precious. I know it's very stressful for you, but he's just so cute!<br /><br />Charlie's prognosis, brain damage was so completely grim that I can recall looking at it like it was yesterday. My exact thought was, "I have no idea how a person could recover from that." My philosphy has had to become "look at the child" because man oh man looking at the film is scary. Maybe you should bring that film to the pediatrician and let her keep it in his file--get that monster out of your closet.Katyhttps://www.blogger.com/profile/02189007616883663434noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-50470843996021327952009-10-15T10:17:42.397-04:002009-10-15T10:17:42.397-04:00I know what you mean about MRIs. I really freaked...I know what you mean about MRIs. I really freaked out when Jake's came back showing PVL. To me it was like a firm diagnosis of constant problems. <br />We met with the pediatric developmental delay doctor after and she blew it off in a nice way. I LOVE this lady. <br />Her comment over and over was "don't let the MRI diagnosis him. Many kids have terrible MRIs and go on to do great things. Never underestimate the will of the child." <br />Each day I see how she was right. "A test is just a way to know how to treat a proble. Not a beat all end all."She is so right.Live to love and laughhttps://www.blogger.com/profile/13537836247826612808noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-32195127618353635972009-10-15T03:27:46.994-04:002009-10-15T03:27:46.994-04:00I despise those caps and all those leads! We'v...I despise those caps and all those leads! We've never had the ambulatory test (though we probably should have), but a couple off EEGs and a sleep study. Not pretty. Hope it turns out ok...but either way keep your thoughts pointed toward the miracle of the brain. Max has already shown you!Maryhttps://www.blogger.com/profile/11399324383367077919noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-31340729045422464502009-10-15T01:36:02.142-04:002009-10-15T01:36:02.142-04:00Poor Max! Actually, though you say "Good thi...Poor Max! Actually, though you say "Good thing he isn't dating yet" he'd probably be VERY popular with the "No glove, No love" ladies--he looks like a walking ad for protection of an intimate sort! I knew someone who wore a similar costume at a Halloween party a few years back and didn't leave alone! No matter--even with the goofy hat and the understandably bad attitude, the kid is still a charmer!<br /><br />As for the brain, isn't it an amazingly plastic thing! I saw that CNN piece too at work--astounding! That ability of the brain to rewire itself is the reason why doctors who give out the "worst case scenarios" are so often completely wrong. In fact, there are children (and the odd adult) with terribly profound seizures that cannot be controlled with medications who undergo hemispherectomy (the surgeon will basically chop out half the brain to stop the seisures) and the little darlings, quite amazingly, rewire themselves. When I first heard about this operation in my forays around the net a few years back I was absolutely astounded by the concept, and couldn't fathom the absolute fortitude of parents having to make a call to put their kid under the knife for an operation of this gravity (if I can avoid "the knife," I do--I'd be a total wreck having to make that sort of choice). It certainly has to be a very tough decision for people in that situation. The operation has, near as I can tell, a fairly good success rate--but still! You've probably heard of this already, but here's a blurb on it:<br /><br /><a rel="nofollow">http://www.webmd.com/epilepsy/functional-hemispherectomy</a><br /><br />It's not used for treatment of absence seizures, of course, but it does demonstrate how those old ideas about the brain (that it was a static entity that could never ameliorate damage) are just so doggone wrong!<br /><br />Anyway, I hope Max's EEG comes out lovely and clear, and he won't need any additional medications. I also hope poor little Princess Sabrina gets over her sniffles in plenty of time for Halloween. <br /><br />Well, let me run over to your links and do a bit more voting, and then get my fat butt to bed! Hoping for the very best news for you!Felicianoreply@blogger.com