Dr. Issues

I second the second opinion… We also have been told nonstop that Hailey’s reflux is only mild and not severe enough to cause issues (How they know that is beyond me as we’ve had no testing and she wet burps all day long, and arches several times during each feed, after, and during the night).

Anyhow, we too are waiting for yet another opinion, because I too think it causes pain.

My ped also doesn’t think that Hailey’s reflux is bad (and I love the guy), but today he told me that many children have reflux and most of them do not go on to develop feeding aversions. He thinks that the feeding issues and aversion is all part of her personality (which is very anxious and stressed out) and her inability to cope with the reflux or anything else that she finds stressful. I do believe that to be true on some level, because of course, we all cope with pain differently, but that doesn’t solve anything for me.

I wanted to ask you, how does Hunter’s reswallowing and/or getting upset trigger a seizure? I hope you don’t mind me asking, it’s just that my doc is sending us for an EEG to rule out seizures/epilepsy as Hailey still has Sandifer’s. Given her irritability, he is concerned that maybe she has seizures…sigh… since my two year old has them.

Back on topic now… I hope your second opinion takes you seriously.

I agree with everyone else. I would definitely go for a second opinion. I had issues with my GI not taking me seriously and dismissing us. I sought a second opinion and now we are finally getting the testing done that our initial doc wouldnt do.

I’m curious too, why is it dangerous to do a probe or scope?

What an a** Dawn! These docs can be so rude and patronizing! Definitely get another opinion ASAP, if for no other reason that to have a doc who is kind and sympathetic. It is too hard having to go through such things, and on top of it have to deal with that kind of arrogance. I’m so sorry that you are having to go through this.

dawn, are the steroids stopping the seizures? are they sure that it is not sandifer’s from uncontrolled reflux—which is often mistaken for seizures. alot of babies have had to move on to prevacid, which seems to be a better med for reflux more often than not. if reflux is not controlled, it will burn on the way up, and then on the way back down when they swallow. also, sometimes even if the reflux isn’t burning, you still can have an uncomfortable sensation, which can cause babies to be fussy. it would be extremely difficult to work with a doctor with so little respect for you that he would make such comments. i’d be looking for a new doc. if the seizures are not considered dangerous, then why not taper off the meds so the tests can be done. why medicate your child with steroids (yucky stuff!!), if figuring out why he is getting so upset by his reflux in the first place might be able to eliminate the seizures all together? hope that rambling sentence made sence!! kevieb2006-3-9 21:8:24

I think I answered another of your posts. It totally sounds like sandifer’s syndrome (which LOOKS like seizures, but isn’t). Seizure meds can make it worse! Please read this link:

This is from a hospital that are experts in the field of pediatric GERD.

http://www.marci-kids.com/rigidbodyposturing.html

My son had Sandifer’s that showed up at about 2 weeks old (he was on zantac at the time). His “seziures” stopped around 3.5-4 months of age when I took matters into my own hands and upped the dose higher than the docs said. (I didn’t have the internet at that time – wish I would have!) With prevacid, less acid is produced – so less acid comes up for them to swallow. My son was “swallowing” every couple of seconds and wrythed around and screamed all day long until I got his meds high enough.

Sandifer’s is when the acid is burning the esophagus so bad that it triggers the brain to tell the body to do “seizure-type” movements. Don’t be fooled that it didn’t show up until 5 months of age, that just means it didn’t get “bad enough” until then. My son had ea/tef so he has massive reflux becuase his LES doesn’t close completely, so his seizures presented at 2-3 weeks old.

I totally know what your’re going through, I have been there, and I WOULD seek a second opinion and get off the sezuire meds and get on a high dose of prevacid/prilosec (1-1.5 mg/kg per day). Also note that erythromiacin is an anti-biotic and can make reflux worse by killing the good bacteria in the digestive system and throwing the system off wack.

p.s. my son’s middle name is Hunter!

lansima2006-3-10 14:50:24

lori, you’re not being harsh harsh—-i think everyone was just making comments without knowing all the facts—-that’s why i had asked if they were sure it was seizures and not sandifer’s. i guess part of what i am wondering, is that if the seizures are not causing damage (i think you said that dawn?) and the reflux seems to be setting the seizures in motion, then maybe the lesser of 2 evils would be to taper off the meds so that the tests could be done without the danger your doctor is talking about. then you would know if the reflux is worse than the doc thinks, or if there is a complicating factor, such as a hiatal hernia—-and if that is the case, then treating the reflux better would make reflux much less of an agravating factor in his seizures. hope that made some sort of sence!