Sandifer’s or Reglan

[Anonymous]

My son has been doing this thing where he puts his right ear to his shoulder for a few seconds. This is something he has done for a long time but usually only once or twice a week tops. I always thought his ear was just itchy or something. Today he was doing it pretty regularly throughout the day and for the last two hours he has been doing it every min. or so. His left arm kind of shakes and his eyes get big when he does it.

He has been on Reglan for four months and increased form .5 to .7 mil about a week ago. It would make sense that when he was doing it occasionally it was a side effect of the Reglan and now the increased dose has increased the effect. I called my ped and that was his guess. He told me to stop the Reglan and bring him in, in the AM. He is going to switch him to Previcid. I was under the impresion he did not prescribe PPIs. I don’t know why he would have started with Reglan when previcid is safer. Anyway that is another issue.

I was just worried that it may be Sandifer’s and not the Reglan.. I am getting ready to do some research on it, but I thought I would ask the experts and get your take on it.

[Anonymous]

Hi Katey,

I know someone else with more info will post but I just wanted to say that my daughter would turn her head to one side while eating when her medication wasn’t working. But she would only do it when she was eating. We’ve never been on Reglan.

Hopefully switching to the PPI will do the trick for you guys.

[Anonymous]

Thanks for resoponding Karen, I am just really worried because the ped told me not to give him the reglan. If it is sandifer’s then he is going to be without meds except zantac until he can get the previcid tomorrow I don’t want him to have to suffer all night. I am just so worried and confused.

[Anonymous]

I don’t know much about this but I have read here that Reglan can have neurological side effects. I hope it stops now that you’ve stopped the medication and I hope he gets a good dose of Prevacid tomorrow. Good luck tomorrow.

[Anonymous]

That description is basically what Hailey’s Sandifer’s looks like, except she turns her head to the left and her eyes get big and roll up. She’s been diagnosed with Sandifer’s by exclusion and a normal EEG. I don’t know what the neurological effects of reglan look like, so I can’t comment on that.

[Anonymous]

The eye roll seems like sandifer’s, dd did that with a head twist and some arching back. But when she was on reglan…. she we eventually took her off of it because she developed involuntary movements of her extremities. Could you lower the dose again and see if it gets better.

Also, he is not on a ppi and the zantac is very weight sensitive. I know they usually chunk up around 4 months, so maybe you should ask about a ppi since the reflux is not under control. You can use the zantac spaced 2-4 hours apart while you are waiting for it to kick in. If the sandifers goes away in a couple weeks, then you know his pain is under control.

[Anonymous]

Thank you all for your help. We actually had a pretty good night. I was prepared for a rough night with just the zantac, we did just increase it last week so hopefully it will be enough, but he slept fine and woke up happy though early at 6 am. I gave him mylanta with his 2 am bottle. He ate a decent breakfast. He was not his normal happy self while eating. He looked kind of p/o about the whole thing, but did eat.

He did the ear to shoulder thing a couple times this morning and now is doing it more after eating. He is a little whiney, but that is normal. I still get big smiles when I talk to him and he is not acting like he is in pain.

I have to wait until 8:30 for the peds office to open and hopfuly they will be able to get me in right away. Thanks again for all the help and I iwll keep you all posted on what the dr says

[Anonymous]

I’d guess it’s more likely Sandifers and not the Reglan per se – but a
sign that the Reglan isn’t controlling his reflux more likely, KWIM?
Glad you are seeing the Ped ASAP and hope they start Sebastian on a
good dose of a PPI soon.

[Anonymous]

I just got back to from the peds. He gave us Prevacid 15 mg ounce a day. I checked on Marci kids and his dose should be 25 mg three times a day. I am going to split the pill and give it to him twice a day. The timing is good because I have his GI apt in two weeks so I will know if it is working or he needs the higher dose

I am still not sure if it is the Reglan or Sandifer’s that is causing his problems. My ped is assuming it is the Reglan, though he said he has put much younger babies on higher doses with out any side effects. I guess I will just wait and see what happens with the Prevaicd. He is still doing the head thing, but not as often and more subtly then last night.

I do want to give my dr. and his staff credit. When we got to his office the referral specialist said that she was just on the phone with my insurance co. They were saying they were not going to approve my GI referral because it was an out of network dr. She told then the network dr. was going to make him wait until sept. 1 and that was unacceptable. Unless they could get him in sooner there was no choice but to go out of network. It worked and they approved the referral. It is so helpful to have people that are willing to fight the insurance co.

[Anonymous]

Good news about the referral. I hope the prevacid works, but the dose does seem low. Maybe it will be enough for him and like you said, you have the gi appt. in two weeks…so perfect timing.

Maybe the reglan is leaving his system and that’s why he’s doing the ear to shoulder thing less and more subtly. That drugs scares the heck out of me. I’m glad to hear Sebastian is off of it and on Prevacid now.

I hope he does well.

[Anonymous]

I don’t think that the dose you figured from the MARCI-Kids page is right. What is your child’s age and weight? Not that there is a risk of overdose, but 75 mg per day sounds a bit high. I just don’t want you to have to pay for that much medicine. Get back to me as soon as you can.

[Anonymous]

I ment 25 total split up three times a day. I think it was like 8.6 or something. Sebastian is 7 months and 19 lbs. Thanks for being so on the ball Joel katey2006-7-12 17:36:27

[Anonymous]

Ok, good. You had me worried about our new calculator for a minute there.

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