Question for S/H mum…

[Anonymous]

How is your older daughter doing? Does she have any other medical conditions besides the seizures? Was she diagnosed with epilepsy? How was her eating? Elianna is not the greatest eater lately…so not sure if that is due to GI issues or neuro issues. Any info on your daughter would be appreciated! Thanks for the response to my post!

[Anonymous]

Jennifer,

Have to go rescue my hubby from Hailey right now, so I’ll respond tomorrow (sorry). Hang in there.

[Anonymous]

Jennifer,

I’m sorry if I scared you. I really didn’t mean to. I just don’t like it when people automatically assume Sandifer’s if there’s reflux involved, and don’t look into the real possibility of seizures. A child can have reflux and seizures as well, and ignoring that can cause treatment to be missed.

As you may have read, the presentation for seizures in infants can be so varied- from something subtle like eye rolling, to more obvious things like tremors and head dropping, etc. Sandifer’s tends to have typical posturing as well, which is often associated with a reflux episode. The two can be hard to differentiate as you must already know.

It is certainly good news that your daughter had a normal EEG and MRI. Has she ever shown any reflux symptoms prior to this (i.e. spitting up, wet burps, excessive hiccups, congestion, feeding problems, arching, fussiness, sleep disturbance)?

Here is an article on Sandifer’s:

http://rds.yahoo.com/_ylt=A0Je56mkGlFE8FkB71pXNyoA;_ylu=X3oD MTE2NDByc3YxBGNvbG8DdwRsA1dTMQRwb3MDMQRzZWMDc3IEdnRpZANGNjU1 Xzc4/SIG=142v6jpup/EXP=1146252324/**http%3a//www.int-pediatr ics.org/PDF/Volume_19/19_1/39_41_ip1904.pdf%23search=’pseudo seizures%2520and%2520Narchi’

To answer some questions from your initial post:

1. You can have Sandifer’s and not be irritable all the time, but Sandifer’s is a neurological pain response, so that is why babies might typically be fussy before or following an episode.

2. It is possible she has silent reflux. Does she have any other symptoms?

3. I don’t know if hiatal hernias are hereditary, but reflux certainly is, as are allergies and other GI issues.

4. From what I have read, Sandifer’s is not typically associated with observed loss of conscious awareness or sleepiness. But when Hailey has an episode she will not look at me if I call her name, but hers are very bried (ie. seconds).

When Hailey has an episode, which we believe to be Sandifer’s, it’s always related to a reflux attack or during a feeding. She will arch her back, stiffen her torso, her head will go back and to the right, and sometimes her eyelids will roll. When she relaxes her posture, you can always hear her reswallow. She seems with it during the whole thing, and it seems like she is purposely doing it almost. After she will sometimes cry out, but never is sleepy.

Today I spoke to my ped about seizures, as he wants to do an EEG for Hailey to rule this out. He said the type he is looking for are “myoclonic”. He also told me that when infants are having seizures they can be very subtle, but typically there is a halt in their development and delays are evident.

There are others on the board who have children with seizures, so hopefully they will respond for you as well.

As for Sarah, my older daughter, she had her first seizure at 11 months with a case of roseola. We were told that it was a febrile seizure, which is very common in roseola. We didn’t think that she would have more, but she’s had 6 in total. All but one of her seizures happened with fever, but she was coming off of an illness at the time so who knows. She has had a normal EEG, and is otherwise a typically developing child. Her neurologist feels that her seizures are febrile and not epileptic based on this information, which means that there is a good chance that she will outgrow them during her childhood. Most children with febrile seizures only have one or two during their lifetime. She is only 2.5 and had 6 of them within a year. We sometimes give her a very high dose of ativan (sedative) to relax her nervous system and prevent a seizure, but coming off of it is like watching a drug addict in detox, so we don’t do it often. Thankfully, the seizures are not harmful to the brain. The only risk for her seems to be related to injury during a seizure.

When she seizes, it comes on suddenly (this is pretty graphic so skip this paragraph if it will upset you)- you first hear a loud haunting scream and gasp like the air is being sucked out of her (apparently this is from the simulaneous contraction of all the muscles and her airway), then she goes stiff, her toes point down and her arms stiffen and cross in front of her, she will fall down, her eyes roll back, her neck goes back and her head starts jerking, sometimes her whole body will jerk from the muscles contracting, she turns blue and will lose bladder control and bite her tongue. It looks like she is being strangled. It lasts about 1-2 minutes, and then she comes out of it. She cries and is disoriented, and then is very tired.

As an infant, she never had any other problems. She ate well, slept well, and was on track in terms of her development. This continues to be the case for her, and we pray this remains the case.

Like I mentioned, the presentation for seizures in infants and children can be very diverse. My friends has focal seizures- meaning the seizures come from one part of the brain and trigger jerking of one limb only.

I am glad that your child had normal testing. If you are still concerned and don’t want to wait, I would call your neurologist and tell him what’s going on. If it’s Sandifer’s from reflux, getting her on a good dose of PPI should stop the symptoms. Hailey’s Sandifer’s has been better controlled since she got on the right meds.

I wish you all the best. Good luck, and keep us posted.

[Anonymous]

Thanks for your response…we have an appt with the ped neuro tomorrow afternoon…maybe a repeat eeg…dont know for sure! Yesterday I heard her swallowing more and her tummy was making a lot of gurgling sounds…she occasionally spits up…this week she spit up fairly large amounts 2x…her appetitie hasnt been the greatest this week either..in fact it wasnt the greatest in March when they first occured…the last month she hasnt been constipated, been eating great, and no episodes and then all of a suddent 3 episodes within 5 days…cant figure it out some symptoms sound like Sandifers and others epilepsy…I just hope the docs can figure this out! Thanks again and I will keep you posted.

[Anonymous]

Jennifer,

Glad you neurolgist is on top of things. The GI symptoms thankfully do point towards Sandifer’s. Good luck.

[Anonymous]

My ped neuro has me scheduled for a barium swallow study oon Tues and another eegon Wed so we will see what shows up…he is still leaning towards a GI explanation of her episodes and wants me tokeep my appt with the ped gastro on the 17th. I am glad he is being careful about the seizure diagnosis/meds but on the other hand it is hard waiting for answers! Thanks for your replies!

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