I cut/pasted my question and moved it up!

[Anonymous]

Hello,

I am new here….my 9 month old daughter has had 4 “seizure”-like episodes…her EEG/MRI results were all normal and the ped neuro thinks it may be Sandifer’s. I dont have an appt with a ped gastro until 6/1 so hoping some questions may be answered here! Elianna’s problems started shortly after starting on solids…first with severe chronic constipation, not eating well, prefering to nurse and then her first episode on 3/2. Only one of her episodes occurred after eating….the other 3 were 1-2 hours after eating but she was in a jumper. All four were virtually identical….eyes rolled back and to right, head tilted back, arm extended, leg bicyled a little…lasted less than a minute…during the episode she appeared unresponsive…didnt respond to her name, etc. Afterwards she came back to normal pretty quick…however, the last one she seemed tired which worries me because that seems more like a seizure characteristic. The neuro wants the reflux ruled out before we go any further…here are my questions..#1Elianna is a fairly content happy baby…no extreme fussiness…however the last couple months she has been waking 2x at night…can a baby with Sandifer’s be nonirritable? She is fussy after the episodes but other than that she is a pretty happy baby! #2 She has little vomiting/spitting up maybe silent reflux? #3Are hiatal hernia’s genetic…my dad had one? #4Do other babies experience sleepiness after an episode? Thank you so much…I am so glad to have found this board!

[Anonymous]

Elianna just had another “episode” about 45 minutes after eating….we were in Target and she started fussing in the cart…had a gut feeling something was up…and sure enough her eyes went back, her head/neck also, and mild tremors in arm/leg! Ugh how I am supposed to wait until 6/1 for the ped gastro to see her!!!! I am going to call the ped neuro and see if he can pull some strings or maybe even have him do another EEG….I dont want to waste over a month if it really is seizures for Sandifer’s!! Any thoughts?

[Anonymous]

Hi. I wouldn’t wait either. I just wouldn’t think that reflux would begin at 9 months of age. I would definitely take her back to the ped neurologist, or at least call him.

BTW, my middle girl is named Eliana. When she was born and we would introduce her to new people, they would always smile broadly and say, “what a beautiful name!” Do you get that??

Do these episodes ever seem to follow her hurting herself? My Ellie has on a number of occassions gone limp, her eyes rolled back and she looked like she fainted. This has always happenened after she got hurt. She begins to scream, but holds her breath until she passes out. It’s very scary, but she is always fine afterwards.

I sure hope you find out what’s going on soon. I’ll be thinking about you, so please keep us posted. Good luck.

[Anonymous]

my girls didn’t have reflux as infants, but they’ve got it now……….

[Anonymous]

Thanks for the replies….yes we do get a lot of compliments on her name…I had never heard the name before and now I have heard from quite a few with the name Elianna…we call her Ellie for short, too! The ped neuro said she may have had mild silent reflux or a small hiatal hernia but it could have worsened as she learned to sit, etc…also the severe bout of constipation could have aggravated the condition…part of me thinks it is GI related…I heard so much gurgling in her tummy today…and I have noticed more swallowing but then part of me wonders more about seizure activity. Like I said the MRI was normal so at least there are no physical abnormalities, tumors, etc. I know the normal EEG isnt too surprising…the neuro said he would do it again if I wanted. This is so hard!

Please fill me in on any of your stories…thanks laura for the info!

[hellbennt]

well, if it IS sandifer’s the symptoms would lessen/disappear w/ meds…so in the meantime maybe try a large dose of zantac at least? I wish I knew more…I’m no doctor

[Anonymous]

How do you know what size of dose to give? Dont you need a prescription? Is it safe?

[hellbennt]

zantac is safe & almost any ped will give you a prescription…dosing info is here on the site…I’m not 100% convinced that a hefty dose of zantac would stop Sandifers, if it is sandifers, but I would hazard an educated guess that it would lessen Sandifer symptoms…but I definitely would get another ped neurologist opinion as well…I’d also find out what hospital the ped GI (or a known ped GI) is affiliated with (& maybe when he’s on call) and then go to the ER of that hospital when/if your baby has another episode…hellbennt2006-4-27 20:33:35

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