April 1, 2013 at 4:23 pm #71913AnonymousInactive
Hi – it’s been a while since i updated – wanted to let you know that despite the 15 mg of prevacid in the am and another 15 mg of prevacid in the pm, reglan 4 x per day and an antihystamine that has a “positive gi side effect” – my baby continues to strugle with her SS. I’m so upset and frustrated. This 3rd GI guy that i had huge hopes in, told me to get a 2nd neurologist opinion. We are totally against that. I called our neuro that she already sees and they talked and the neuro told the GI that he is confident it’s SS – soooooooooo NOW they are going to do the 24 hour ph probe AND at the same time do a 24 hour EEG – to once again, rule out seziures – she had a regular EEG in the neuro office and had some SS episodes happen and it showed no sign of seziure – so if something comes from the EEG, i will be shocked. But, I am looking forward to answers from the PH Probe. I’m not “excited” but I am really wanting to know how bad she “measures” and what we can do to help her. it sounds like she might already been max’d out on the medications – so that we might have to do a fundo? Those aren’t THAT scary right? I mean, like most, you’re able to find more bad than good about it on the web – or what do you ladies think?!?!?! Really, one step at a time – can you tell me what benefit the ph probe truly does. Part of the reason this is my daughter’s 3rd GI opnion is b/c her 1st GI refused to do the ph probe. he said it will only show us what we already know – and that she’s on the best meds for reflux – so “it must be something else” – which is why we got sent to a neuro – but there are no issues there – so what can come from the ph probe – other than showing us she has realyl bad reflux! I already know that – but how can that test help us get her the comfort she deserves? Do we just ride it out and hope she can hang in there another year – and pray that by 2 yrs old it’s gone? i need help, please. thanks,April 8, 2013 at 10:48 am #71972AnonymousInactive
hi there – another update, last week i talked to the current GI about doing the ph probe and during that conversation, he decided to hold off on it – and he said let’s up the reglan to 5ml FOUR times a day. SO, i started that thursday and i think…she’s maybe a tiny bit better….maybe. i hate having her on all this medication – but whatever works. i also started doing florastor probiotics in a bottle, maybe 2 a day – so not sure if that’s also helping – but i had some and decided to use it. I think i will look at the digestive health ones mentioned on this website and maybe do some local research on them also. Austin is just about an hour from me and they are big into homeopathy and all that – so if anything i could possibly drive there. anywho – as you all know i’m desperate to get my baby girl the comfort she deserves – so…friday i made a consult for her at a chiropractor’s office. Thoughts?!?! Please!!! I’m nervious but got on youtube and watched a bunch of videos – i just couldnt find anything video or information linking anything with sandifer’s and chiropractor – so i am not sure i have much hope. any thoughts on it……….i 1st heard about infants going to chrio’s when baby was like 3 months old – i had hoped by 1 yr old we’d out grow all this stuff – but since we are still suffering and on all sorts of meds – i’m desperate to at least have a consult. let me know thoughts/experiences – good and bad of course! thanks so much!April 8, 2013 at 6:34 pm #71976
I brought my baby to a chiropractor!!!
did it help?
well, it certainly did not hurt! he loved it!April 11, 2013 at 12:01 pm #72020AnonymousInactive
we went – she got adjusted – i didnt notice any improvement and she was no worse – the NEXT night – she had a very rough night – but last night, was smooth – and that was after an evening of expermenting with foods and her belly – so i was very surprised. i think the higher dose of the reglan, that we started a week ago today, is helping. i hate to say it, bc i want her off meds! but if it’s helping her – that’s what’s most important. so – we’ll see if it continues. the only symptom we continue to see is a big bloated belly. i do the gas drops and try to burp her all different ways and still – no burp and she’s left w a big bloated belly 🙁 it’s terrible. i called the GI to see if they had any suggestions but they didnt. Do you?? i ran out of the florastor – guess i will pick some up and give that to her also as it’s been part of the regimine the last week and again, she’s had a pretty good week! we go again to the chiropractor tonight – i know my daughter actually enjoyed the relief of the pressure she got from the adjustments so we’ll keep you all posted. thanks,April 11, 2013 at 1:39 pm #72024AnonymousInactive
Your endoscopy was done FAR too long ago to be of any significance to your daughter’s present condition. Honestly, it doesn’t sound like sandifer’s if her real problem, it is only a symptom of her problem, unless your daughter is mentally handicapped, sandifer’s is almost guaranteed to be caused by GERD, and at her age, giving her more medications to clear up the symptoms of another condition seems a little absurd.
a new endoscopy will tell you if an dhow much damage she may have developed since in the last 7 to 8 months.
A PH probe will give you a ton of information–more than just tell you that she has severe GERD. I’d like to slap your doctors for telling you such a stupid thing–sorry, I’m feeling very frustrated with doctors these days.
A ph probe will tell you how mnay reflux episodes she has, how acidic the reflux episodes are and whether or not she is having prolonged episodes, which do more damage. It will also tell you her overall percentage of reflux.
A child could have 200 very brief episodes of relux and have very little damage because each episode is so brief, or, a child could have only 97 episodes of reflux, but have several of them be long episodes—over 7 minutes long—–and have a lot of esophageal damage.
My daughter had 97 episodes or reflux, several of which were prolonged episodes, the longest lasted 44 minutes and she slept through the whole thing.
A fundo is nothing to take lightly, and I wouldn’t let your doctors give your daughter a fundo because they can’t clear up her sandifer’s when they haven’t even done recent and complete proper testing.June 22, 2013 at 9:39 am #72428
updates??? please? your information helps others who are desperate & find this forum!July 12, 2013 at 12:02 pm #72467AnonymousInactive
hi there – sorry i’ve been gone a while – alot has happend in the last few months – without my permission, my parents took my baby girl off all her reflux meds (prevacid, reglan) when they had her for a week b/c in their opinion she didnt need any of that – let me tell you – my husband and i were NOT happy. we were going to pull her off the meds (since she was not any better on all these meds) but on our own TERMS! anyways, so once they had her off of everything for a week and we got her back, we just left her medicine free. and she didnt get worse. we also discontinued the chiropractor visits after the neurologist said he’s seen enough BAD chiro’s to call him biased when it comes to babies. So – since about April 1, our girl who has terrible reflux, MSPI, SS – the works – has just gotten a little tiny bit better every day. but let me tell you – at 15 months old – she still does not sleep through the night and i could bet my life that it’s b/c of DISCOMFORT from the reflux. but she has SILENT reflux – so NOTHING EVER comes out – so she’s a very healthly looking 15 month old. So dr’s just put us off and tell us to hang in there till 2 yrs old. That’s something we ARE willing to do. I dont want to put her through another scope for it to possibly show NOTHING abnormal and we just have to keep doing nothing. so, since she’s a happy girl for the most part – if i could just get her to have a solid nights rest without waking up crying and trying to swollow over and over – i hate hearing those loud swollows in the middle of the night :(.Her movements are better – so honestly, to all those folks out there going through this EVER – my heart feels so heavy for you but at the same time – this IS something your baby will out grow and that’s what we realize. So, as long as we dont see any sort of blood/mucous in stool and dont see the CRAZY arching and neck movements we used to see – we are going to just keep taking it one day at a time. Oh and we went ahead and started cow’s milk at 1 yr – back in March. it’s now mid July and we’re now on almond milk. i dont think she has a TRUE dairy allergy but i can def tell a difference when she’s had a huge glass of cows milk. i let her eat things with dairy in them – just not in huge excess. Thanks for checking up on us. I really feel like this was the only place that I could get info from and people could relate and cared. Thank you all. we’ll be in touch.August 8, 2013 at 4:21 pm #72539
thanks! anything to add? did you tell us what worked when she was a baby, what didn’t, what helped you get through this? any doctor to recommend?January 25, 2014 at 3:18 pm #72689
HELP! tell your story! I need to keep this board going! I *need* to help others!
this board has helped so many & I want to continue!!
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