Guest guest Posted April 4, 2008 Report Share Posted April 4, 2008 Hi , I think that you mean that when Devon falls forward against your husband's shoulder & then cries. How old is Devon & what state do you live? Was Devon prescribed Miralax? I did not see that info in your post. I would recommend another neurologist to evaluate the video & to examine her. Keep looking for a dr that can give you an answer, don't stop looking until you find a dr that cares enough to try & find an answer for you!! I have had my dd to 10 different drs before any one could dx her. Mothers know when something is going on, trust your feelings. It could be numerous things one thing I might suggest is make her as comfortable as possible like pin back her hair & lay her on her side & not hold her so that when her head falls forward she does not make contact with your dh 's shoulder since she seems to cry as soon as her head goes forward. HTH, Yvette Re: Re: New here! and Devon**please look at this video clip. , please elaborate on what we should be looking for, when your husband is counting, there's one, there's two........ -------------- Original message -------------- From: "" <manyistar69hotmail> Hi Jennie,I initially thought they were seizures. That's what prompted me to videotaped the episodes to show to Devon's neuro. He saw it and didn't think they look like seizures. I say that wasn't good enough and I wanted VEEG, not an EEG because its overnight and its usually night time that this happens. After much teeth pulling, he ordered the overnight VEEG (NYU - Comprehensive Center for Epilepsy) 2 episodes happened that night and were recorded, the epileptologist review the VEEG and told us they were not seizure spikes and asked if D has reflux. We then had an endoscopy and a ph probe done. We SWORE she had sandifer's syndrome where the reaction to the reflux pain look very much like seizures. Nope, no reflux. Devon is truly a puzzle.> >> > Hi all,> > > > here and my beautiful 2 yrs. old DD is Devon. She has > hypotonia and dev. delays.> > She is also chronically constipated. For about 5 mos. or so, she > would have these > > unexplained muscle spasms. We have seen 3 neuros, 2 geneticists and > teams of specialists > > in between. At first, we thought they were seizures and an > overnight VEEG ruled that out. > > Someone mentioned reflux perhaps and we did an endoscopy and a ph > probe. Nope, not > > reflux. Then, several dr.s mentioned chronic constipation. We are > on Miralax and she is > > going more but these episodes still happen. They happen when she is > lying down and up to > > 2 x a night and sometimes once during the day when we lay her down > to change her diaper.> > > > Please take a look at this video and let me know if your los has > experience this?> > > > TIA!> > > > and Devon> > > > http://s144.photobucket.com/albums/r186/newmothermary/?> > action=view & current=MVI_2531.flv> >> Quote Link to comment Share on other sites More sharing options...
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