Seizure or Sandifer – HELP

[Anonymous]

We are new here, and reading everything we can to get up to speed with the diagnosis. At 6 days old, our new little girl stopped breathing while breast feeding. After trips to 3 hospitals including extended stays at different NICU’s, we have a diagnosis, Reflux. We have moved from H2’s to PPI’s (compound Prevacid). With Reglan, we have been stable for 2.5 months. We tried to replace Reglan for PED Eryth, and ended up with a non breathing episodes again (7 in 4 days). These episodes look different than our past ones:.

She starts off not breathing, eyes to the side, body stiff, leg shaking, lips quivering, drooling, then she starts to breath (grunting). This may go on for 1-3 minutes.

We recorded a video and showed it to our GI and her colleague. The GI’s did not come to the same conclusion. Our GI believed it was related to Reflux while her counterpart believed it was a seizure. We are now referred to a Neurologist to determine what’s next.

Our question:

Does this episode sound like Seizure or Sandifer’s.

thx,

Bonnie

BonnieW2009-12-19 13:52:36

[Anonymous]

There’s no way to tell just based on the description. My refluxer had Sandifer’s but we weren’t sure, so we did an EEG. The Sandifer’s was only during feeding. Our ped was afraid of myoclonic epilepsy, also b/c my non-refluxer has epilepsy. So I’ve also seen seizures. The neurologist will do an EEG to see what’s going on.

The thing is that you can have seizures and also have a normal EEG… they have to catch an episode or some abnormal activity on the scan for it to change. My daughter has epilepsy, and has had 2 EEGs and they’ve both been normal. But she definitely has had seizures.

Still it can still give you some peace of mind. Does she appear conscious during the episode? Does she turn blue around her mouth at all? Are her eyes to the side, or rolled upward? Is there any jerking? If you you tube sandifer’s you can see what some parents have called Sandifer’s. Seizures can take many different presentations, so definitely want to get an expert to look at it. If she’s having so many, you should be able to catch something on an EEG if it’s seizures. Please keep us posted.

s&h’s mum2009-12-20 08:22:12

[Anonymous]

Also, can’t remember, but can’t reglan cause neurological side effects. I’d look this up a bit more, but perhaps what you’re seeing is an effect from the reglan!

[Anonymous]

Check out this link-

It’s not the most reputable source, and I think that some of the info is incorrect, b/c tardive dyskinesia and side effects I believe are reversible. But, just for some info:

http://www.reglansideeffectslawsuit.com/reglan-dangers-children-reglan-side-effects-infants-tardive-symptoms-reglan-fda/

s&h’s mum2009-12-20 08:28:03

[Anonymous]

The other thing that comes to mind is how much prevacid is your baby on and how do you give it. If you could control the reflux pain, then if it’s Sandifer’s it should stop. Often, the dose of prevacid isn’t high enough or it’s not being given correctly, or is a compound that’s not made right, so it doesn’t work. Then doctors, especially if they’re old school, will add all these other meds, but don’t want to up the prevacid. Check out http://www.marci-kids.com for more info. Good luck.

[Anonymous]

thx sooo much for the info. I’ll try to answer all your questions:

-not sure about consciousness, she does not respond to noises or touch.

-her eyes go to the right side

-she has turned blue at the mouth (not last episode)

-her leg was shaking or quivering during the episode.

Youtube for sandifer’s looks like a startled response. Sophie sometimes starts with the same looking event, but progresses into the episode we described.

She is on Prevacid compound 3mg/ml (pharmacy). We pick it up every 2 weeks to make sure it’s effective. Looking on Marci-kids, it seems that here dose is way too low. she is taking 1.7ml 2x a day. Isn’t that 10.2mg each day? Marci-Kids says she should be on 22-33mg per day? All very confusing.

thx again for your help, nice to have support.

Bonnie

[Anonymous]

Compounded meds are not usually made correctly. Believe me, we went through such a pain with it. To ensure there’s enough buffer in a compound, each dose needs to be at least 3.5ml to make sure that there’s enough buffer to protect the med. The pharmacy won’t know, and will tell you otherwise. But marci kids did research on these compounds, and that’s what they found. Also can’t have any flavouring and needs to have a certain amount of buffer. About dosing- marci-kids is more aggressive. Some docs use a lower dosing approach, which often doesn’t work. If your doc is using reglan, they’re probably more of an old school approach as most docs don’t do this anymore due to the possible neurological side effects. I’ll bump a thread about compounded meds. It’s stickied in the medications forum. Do you have any video posted? Anyhow, if docs couldn’t agree, then really best to get a neuro to look into things.

[Anonymous]

We wanted to update the post and explain what has happened. With our GI’s support, we have changed to Zegerid and have administered the drug per Marci-Kids suggestions. Her episodes have now stopped and she is sooo comfortable. We believe the med change has made a “night and day” difference in our lives. She is going on her 8th day on Zegerid without any negative effects.

I would like to tell anyone who experiences events like ours that Zegerid is our miracle. We were lucky enough to have a GI who was willing to prescribe the new medication, up the dosage, and really listen to what we are saying.

We are still following through with the future neurologist appointment, but will not be approving an EEG if they require us to stop the Reflux meds. Obviously our position will change if she has another episode while on the correct meds.

thx for the support,

Bonnie

BonnieW2009-12-28 21:54:30

[Anonymous]

Glad to hear! That’s great! BTW, you don’t have to stop reflux meds for an EEG. They give them a mild form of conscious sedation, they sleep through it, and then are awake when it’s over. Hope it continues! I love marci-kids.

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