Infantreflux.org | Scared!! Please help

This topic has 8 replies, 1 voice, and was last updated 15 years, 4 months ago by hellbennt.

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May 26, 2011 at 12:38 pm #68432

Anonymous
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My bay has reflux and right now, we are able to control her symptoms with lifestyle changes. She doesn’t refuse to eat and is gaining weight.

The concern is this: Starting at 5 days oldshe does this “thing” She stiffens her body, holds her breath, her arms usually stretch out and she grunts. THis lasts for about 5-10 seconds, then she screams for a second, but is easily calmed down.

There is no specific posistion or time of day, no visible connection or causes of these spells. It is not seizures or sandifers. ( I had her checked out by a neuro and a gastro) The gastro did say that it was probably related to her reflux, but I have found no one else describing this exact symptom. Has anyone else’s baby done this?

http://www.avmsurvivors.org/forum/topics/please-help-i-think-my-baby

This is a link of a video of the exact thing that my baby does. However, this mom doesn’t know what her baby has either

May 26, 2011 at 7:10 pm #68433

hellbennt
Keymaster

I can’t view the clip for some reason, but I want to make sure it’s not Sandifer’s? I would demand another opinion. Have you been to a ped GI? (just read that you have?) – anyway I would try another one?

Looking for GI: https://www.infantreflux.org/forum/forum_posts.asp?TID=660

there are recommendations for ped GIs in your area…

May 26, 2011 at 8:29 pm #68435

Anonymous
Inactive

All the sandifer videos that I watched on youtube didn’t look like what she does. I just re spoke with her neurosurgeon he thinks she is okay neurologically.

He also thought a second ped gi opinion would be good.

I thought that sandifers babies had a lot of pain/crying. She doesn’t seem to be in pain except sporadically and she never cries uncontrollably. this is the only sandifers I have seen that looks kind of like what she does only she cries after and turns more red when she does it http://www.youtube.com/watch?v=JU2XK0-8Ap0 def the 2nd spasm is mostlt what she looks like! What do you think?

May 27, 2011 at 8:07 pm #68440

hellbennt
Keymaster

I wouldn’t rule out Sandifer’s just because baby isn’t crying?

In the video, the baby actually looked happy…

My son, he had sandifer’s but he didn’t necessarily cry around the times of his sandifer episodes. he DID shriek/howl incessantly at times (ok more than at times- for huge chunks of the day/night); we knew he was in pain.

One way to know for sure is to give meds and see if the episodes lessen or disappear. Once my son had a proper dose of PPI, in a proper form, his sandifer’s disappeared. As he grew, and needed his dose increased, we could tell because the sandifer’s would come back. then we’d increase his dose of PPI and the sandifers would go away again.

I am not a medical professional and I can’t tell you what to do, but see how a ped GI feels about trying a PPI to see if it helps? I would research all about PPIs in infants, too.

have you checked out http://www.marci-kids.com ?

here’s a link to a page on their site:

http://www.marci-kids.com/rigidbodyposturing.html from this links, scroll to the bottom of the page for their link to Sandifer’s Syndrome

May 27, 2011 at 10:24 pm #68442

Anonymous
Inactive

Okay so heres the deal. We took her to a ped gi a few weeks ago. He wanted us to d/c bf for a few days to give her a thickened hypoallergenic formula. He wanted me to go off dairy during that time. he also gave us zantac for pm and prilosec for am. We just got the meds today and just gave her her zantac. I can’t tell, based on your info if the dosing is correct because her meds are liquid form and therefore are measured in ml. I am to give her 1.2 ml of zantac and .5 ml of prilosec. We REALLY were trying to avoid meds but we are desperate at this point.

I really want those spells to stop. THey scare me bad! WHat do you think of a tucker wedge/ sling. We cosleep and are unable to lift our bed, but a wedge would work.

May 28, 2011 at 9:58 am #68445

hellbennt
Keymaster

it takes two weeks for anything to

change, meaning a few days of hypo formula won’t ‘do’ it- body needs two weeks to get rid of offending proteins- same thing if you were to change your breast milk by altering your diet and removing proteins, such as milk protein- when doing this- removing protein- it must be done completely- so not just ‘some’ dairy, but ALL milk proteins, including those hidden in ingredients-

also as far as thickening anything- this would be after the results of a Swallow Study- called modified barium swallow, I do believe. this is done by a SLP and baby is watched how s/he swallows, the mechanics of it, and also they look to see if baby is aspirating- after the test THEN you might be told to thicken and it’s a very specific recommendation w/ terms like ‘nectar’ consistancy…

the PPI MUST be at a proper dose and form, so I rather doubt you will see any results w/ liquid prilosec especially such a low dose.

it’s all explained here:

Prevacid 101;

scroll to the last page of this post, (it’s actually also about other PPIs like prilosec, too)
https://www.infantreflux.org/forum/forum_posts.asp?TID=1936&PN=0&TPN=1

as for the zantac (can’t seem to unbold the text! sorry!) tell me baby’s weight & I can help w/ dose.

I have a LOT to say and most of it’s here, in a link called ‘groupie intro.‘
it’s looong but TRULY will help you- read through it, refer back to it, scroll through it/skim through it. You’ll find yourself coming back to it!
https://www.infantreflux.org/forum/forum_posts.asp?TID=853)

you can do this!

May 28, 2011 at 2:35 pm #68457

Anonymous
Inactive

I read your intro post! And she weighs probably around 9 lbs or so. I can’t tell for sure. He did the dosing when she was 8.3 lbs.

Normal for babies to gag, choke, and cough with this?

May 28, 2011 at 2:36 pm #68458

Anonymous
Inactive

My baby is named Ari too. Well, ari’el actually! Too funny

May 28, 2011 at 2:46 pm #68459

hellbennt
Keymaster

I wanted Ariel, but dh vetoed it, saying it sounds too feminine in English/with people who wouldn’t recognize it, so we settled on Ari.

Yes, gagging/choking is common w/ reflux. If it’s serious, then you can ask for swallow study/modified barium test?
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