March 7, 2013 at 2:54 pm #71763AnonymousInactive
My almost 1 yr old has recently been dx with Sandifer’s by her neuro (even though I dx her with this at 3 months but no one would listen to me!!!!!) however, she is not neuro impaired at all – so the GI is “not convinced” that she has SS and refuses to treat her like she needs (so the Pedi is, for now)!!! We struggle with her every evening and middle of the night. She has been on both Elecare and Neocate since 17 days old b/c we thought she had MSPI (milk soy protein intolerance) however, this was just a precautionary step to make sure if she continued to struggle, it wasnt from dairy or soy. well, she’s struggled the entire 1st year of her life. Been on Zantac, Axid, Nexium and now Prevacid. She’s on an extremely high dose of prevacid – we just up’d it (per Pedi) on Feb 1st – took a week to see the higher dose help – we had 3 good weeks and now, the last 5 days have gone back to a terrible time with our sweet baby. is it possible she’s already built up a tolerance to the high dose of prevacid already?! and it needs to be adjusted again?! or is this a “reflux flare up” ? how do we treat this?! all we can do is comfort her through this hard time. i wish someone could help her! i’m looking for a specialist that can help my baby with Sandifer’s Syndrome – in Texas. Any advice, especially from those going through it or been through it before is MUCH APPRECIATED.March 7, 2013 at 7:01 pm #71767
my baby had sandifer’s which was treated w/ high doses.
how much is she on?
scroll to the last page of this post, (it’s actually also about other PPIs like prilosec, too)
Looking for GI: https://www.infantreflux.org/forum/forum_posts.asp?TID=660
there are recommendations for ped GIs in your area…
PLEASE post about your DR that you DON’T like/agree with!
we have to help one another! thanks!
hellbennt2013-03-07 19:02:02March 8, 2013 at 9:55 am #71771AnonymousInactive
Hi Laura – Thank you so much for replying to me so quickly! I have never posted/reached out for help like this before – and I really wasnt sure if I’d hear back from anyone any time soon. So, THANK YOU for your reply and all the information!! But now I have all sorts of questions on Prevacid 101! 🙂 I’m sure you can help. Let me give you a little more background about our baby girl – and if you could also do the same – i would like to hear more about your experience. And where are you located at?My baby girl went from a 1/2 of the prevacid solutabs in the AM and 1/2 in the PM to on Feb 1st, she went to a full 15 mg solutab in the AM and another full 15 mg solutab in the evening. I do these at least 30 minutes prior to eating and i administer is to her just by putting the solutab in a medicne cup and putting a little bit of water on it and then give it to her with a certain dropper that works great with getting out all the medicine. Baby girl takes it like a champ. It took about a week for us to notice the high dose that we started Feb 1, was HELPING!!!!!!! We hadn’t seen or heard her grind her teeth in several days, we hadnt seen her do the terrible arching, we hadnt noticed any significant neck turning while we tried to feed her in her high chair – lots of the “involuntary movements” (as we call them) had gone away!!!!!! until last week, Feb 28th….she started getting cold symptoms from her 2 1/2 yr old brother last week. you know, congestion, sneezing, runny nose, the works. I took them both to the pedi and she said it’s just a virus, no need for antibiotics and we got out of there. (oh and just FYI, she’s trying to cut ALL 4 of her 1 year molars and those sharp k-9 teeth too) – anyways, starting the 28th and ever since, today is Friday, March 8th – so it’s been a week and a day – and she’s starting to “get bad” again….i can tell she’s going through a very hard time after her dinner (baby food/oatmeal) and a full bottle. It’s heartbreaking. She also does this thing where whenever she is going through a hard time, she might be on the floor and all the sudden something comes over her and it makes her lay flat on her back and she’s so stiff and tense and cannot turn over. i try to turn her over but she’s flexing and so strong it’s so hard for me to turn her over onto her belly when this is going on. the other day i got her to turn over onto her belly while this was going on and she cried and cried – it was an “I’m in pain” cry. 🙁 why! what is going on with my baby that is making her so uncomfortable? she also never ever ever spits up – so she is a silent refluxer. she is 11 months old and is walking and understands words – our neuro said there’s no reasons for him to run tests but he is concerned b/c i’m concerned so he’s trying to figure out what caused her to go from BETTER to BAD AGAIN!? is it possible she’s built up a resistance to the higher dose of prevacid already?! Or is this just a flare up? How do I know when it’s a flare? Can you avoid them and if not, how to do manage through them? The GI says he will not do a PH probe b/c it’s such an evasive test and it will just tell us what we already know, she has reflux – so why put her through all that, if it’s just going to tell us what we already know? I’m so frustrated with him – we are set to go see a 3rd GI opinion next Thursday – but in the mean time, my baby girl is struggling. And it’s mostly only in the evening times – she goes to an in home day care and the lady there says she never notices any strange movements – but honestly, that lady is taking care of almost 10 kids – and i’m not sure she really has time to pay that much attention to my baby – so in her mind, she probably thinks i’m this crazy mother – but for some reason, we really only see her struggle in the evenings. From about 5pm – when I pick them up from day care – then 5:30pm we get home and I give her prevacid – she’s eating baby food/oatmeal at 6pm, bath at 7pm and then she fights through her hard time till she finally gives up or till it finally passes or we dont know what happens – but till she’s finally able to sleep. could be 8pm could be midnight. then she wakes up at 2am to eat – most nights she goes back down easily – however lately, she’s having a very hard time getting settled back down after the bottle. she will fall asleep on my shoulder and when i go to lay her down on her belly (she’s been a tummy sleeper since 3 weeks old) she pops right back up and cries and reaches for me – so i grab her and put her back on my shoulder and just try to burp her and burp her and burp her – b/c sometimes it just seems like she has a huge gas bubble stuck and she just needs to get it out and CANT. Does that have anything to do with the fact that she never spits up? and that she has a hard time burping? Is it possible she has something blocking her esophogus that a burp or spit up cant come up? she’s had an upper GI, belly ultrasound and upper and lower scope – EVERYTHING COMES BACK NORMAL – NOTHING OF CONCERN. i dont get why we are going backwards with her! i just want to scream. again, any advice and personal stories are much appreciated.March 8, 2013 at 3:27 pm #71772
I’m always rushing, but wanted to respond – there was a mom on here w/ similar symptoms- posturing- Mfpix2 – I forget but she’s Sheri, listed below in more links…as for the tests- invasive or not, it might just be time?has she had a scope/endoscopy? I would ask for that to see if there’s any irritation and also they do biopsies!!hugs, mama!here’s a recent post about ph probes
and:Accuracy of allergy testing & great post by sherri explaining IgE and IgG (intolerance/allergies) https://www.infantreflux.org/forum/forum_posts.asp?TID=10815
Another Sheri explanation- intolerance/allergy post:
do a seach for sherri’s posts – do it by username – search is upper right-hand corner of this page- read her most recent ones first – she hasn’t been on here in a loong time, but her info is quite valuable!March 9, 2013 at 12:57 am #71775AnonymousInactive
Oh… Mama….. my eyes just filled with tears while reading your posts! I have read over and over many different mom’s stories of their struggling babies so you would think I might “get used to it”. But no, my heart cries EVERY time I read yet another story. And when stories come really “close to home” for me then my crying heart spills over into my eyes.
I am SO sorry that your little one is going through so much! Your story is not exactly the same as mine (my children were not diagnosed with Sandifers) but the desperate feelings you are feeling…. yes, the same, I’ve been there! BIG (((HUGS))) to you and your sweet little girl.
That hard-to-burp thing is just plain terrible! I tried EVERYTHING with my boys to get them to burp! NOTHING would work. The burps were just plain stuck or trapped or something! I spent many many hours walking, pacing, bouncing, patting, etc etc with my screaming in pain boys trying to get a burp out. One of my friends told me once that my boys weren’t fun to hold because they were so stiff all the time. Well, maybe I should of told her that if she was in pain all the time, she might be stiff too. But in truth she knew that was why my boys were that way because she came to my house a lot to help me when my boys were little. But sometimes I felt as if I might “break” my boys’s muscles if I tried to make them loosen up.
I was quite concerned that 30mg of Prevacid a day was still not fully helping my little boy when he was 8 months old. But the GI said it was ok for him to be on that high of dose for several months. I was not impressed because what was I supposed to give him after those several months? My otheat r son was still on Prevacid 3 years old. I wanted help and answers from that GI but all I got was “your children are growing and look healthy”. The one good thing she did was recommend that I read a book titled Colic Solved and I did appreciate the book.
Even though our children’s symptoms are not totally the same I highly suggest you read my blog (see signature). What we have found to help the most with our children is giving them a supplement of probiotics and digestive enzymes. No, it has not cures them but has made a world of difference!!!! I really believe that it would certainly be worth a try for your little girl!
Because my little girl has been getting probiotics and enzymes since she was born (well actually since conception :)) she has been a night and day difference compared to my boys!
In her first year of life the only times she struggled with reflux was when she was teething. I read up on it once and found read that when teeth are trying to come through, the saliva becomes very acidic to make the cells in the gum die to let the tooth through. This acidity will make for tummy trouble, reflux flares, and sometimes diarrhea and diaper rash.
My little girl turned one last October and shortly before Christmas I started trying to transition to dairy milk. She had been fine with regular formula and my never could tolerate it. Around this same time she started getting in all her molar teeth and her eye teeth. I upped the amount of probiotics and enzymes I gave her and it helped until she got a cold. So since then we have tried almond milk, coconut milk, and last week started trying raw goat’s milk which she doesn’t like the taste of and now refuses to take any kind of milk. 🙁 So she is hungry all the time and eats food like a horse. I have a chocolate powder that is actually a healthy vitamin/mineral mix that I mix with the goat’s milk and then she’ll drink it but she only gets one cup a day of it.
Her molar teeth are all in and her eye teeth are just peeking through and her tummy pains/gas at night are getting some better. The biggest problem she has is a lingering cough and I’m not sure whether it’s due to the lingering cold she got at Christmas or from the dairy she gets in food???
My middle son has a lingering cough also and we’re trying a couple different things and if they don’t help pretty soon, I plan to cut dairy out completely again (my boys didn’t have any dairy till they were ages 2 and 4 after they had been on they probiotics and enzymes for a several months) for awhile and see if that might be contributing to their coughs.
Laura is a wonderful source of information as she has been through a lot of this stuff herself plus been on this board for close to ten years. Although my children really aren’t struggling that much anymore, I am here because I know how awful it feels to have a struggling baby and NOT know where to turn or what to do next. And now I want to try my best to help others!March 9, 2013 at 9:07 am #71785
I was beginning to go through sherri’s posts – I do think they’ll help you, for instance:
she hasn’t been on here in a long time, so when you do a search for her username MFPIx2 click 6 moths and OLDER from the drop-down menu…
sherri also recommends probiotics, along w/ medication, fwiw (for what it’s worth)…and, she’s a pharmacist…she’s a wealth of knowledge! I wish she’d come post more, but she’s ‘moved’ on to being a huge advocate for children w/ autism…I do believe she’s ‘cured’ her children…but, I digress…March 14, 2013 at 1:51 pm #71823
Please: what is going on, currently? Please update us- your information will help othersMarch 17, 2013 at 9:54 am #71846
bumpMarch 17, 2013 at 9:54 am #71847March 18, 2013 at 5:24 pm #71850AnonymousInactive
i’m so sorry ladies!!!! thank you for checking on me! i have been keeping in touch with your messages and information on the website here – i just havent been able to write much since i’ve only been able to access site from cell phone or tablet and i have too m uch to “chicken peck” on either of those devices. SOOOOOOOOOOOOOOOOOOOOOOOwe went to a 3rd GI opinion last thursday and he does agree that she has sandifer’s and he started her on REGLAN – 1mL 4x a day – i know…i already looked up your opinions about this meds – do you have any positve stories from it?!?!?! PLEASE!!!!! This has GOT to work. If not, then PH Probe and if that doesnt give us any answers – this GI is talking about Fundo!! of course a last resort but i’m freaking. My husband and i leave THE COUNTRY this week and will be gone for 5 days – we need this kid free vacation – i’m just worried about my baby girl. i havent noticed any WORSE movements or WORSE reflux since reglan – but…havent really noticed any help either……….any advice?!?!?!?! thanks in advance!!!!March 18, 2013 at 5:25 pm #71851AnonymousInactive
so she’s still doing 15 mg of prevacid solutab in AM and 15 mg of prevacid solutab in PM. and Reglan an hour before each feeding – 4x per day.March 18, 2013 at 7:41 pm #71853
I don’t think a ph probe is a bad thing
nor do I think getting an endoscopy is a bad thing-
in fact, I’d TELL drs to give her both so you can KNOW more about what’s going on in her esophogus.
Sandifers means that there’s a lot of pain w/ the reflux…
I don’t have anything to say about the reglan other than I don’t think it’s necessary – it’s for Delayed Gastric Emptying and if you’re going to give the med (which you can do! no judgement! you gotta do what you gotta do!) then I’d demand a TEST for DGE (Delayed Gastric Emptying)…
hang in there!March 20, 2013 at 2:13 pm #71858AnonymousInactive
If your daughter is a year old and is still having this much trouble, she definitely needs to have a scope with biopsies and a PH probe.
As far as the cold–yes, it will flare up reflux symptoms—any illness will make reflux symptoms worse.
How long ago was the upper scope done that you said she had? did they do biopsies?
I felt like reglan was worthless–but I think there were some people on this board in the past that got some help from it.
I’m a little confused as to why your doctor would say that if the PH probe showed nothing he would do a fundo? If she doesn’t show any acid reflux with a fundo—that would be an unecessary surgery.
You said her upper and lower scopes showed nothing, but you didn’t say how long ago they were and whetehr or not they took biopsies.
My daughter had to have a fundo just shortly before she turned 10 months old—but her scope showed that heresophagus was getting ulcerated at 8 months old, and her PH probe showed that she was refluxing almost 25% of the time, and also that she had prolonged episodes of reflux.
I have severe reflux, and have also been diagnosed with a condition called esoinophilic esophagitis, which is often mistaken for reflux–I’m just unlucky enough to have both, the EE is most likely secondary to the reflux that I have had for so long–at least that is what my GI thinks.
EE is another condition that would show up with a biopsies from a scope.
My daughter is now 9 12/ years old and doing very well with her fundo. I am hoping to get my EE under control and also have a fundo done—22 years of reflux is more than enough for me!!March 20, 2013 at 5:25 pm #71859AnonymousInactive
hi ladies – i am so sorry if i faqiled to mention she had the scope done when she was 4 months olf – and it came out beautifully!!! Which is what this 3rd GI told us last week – that it’s common for SS kids to have no damage to their esophugus – which just blows my mind – but thankful – you know – however this was PRIOR to any dairy/soy free oatmeal, rice cereal, baby food – the GI that did the scope gave me the green light to go ahead and give her solids – so we did. So we’ve had that done – it was just before any solids – but the biopsies didnt show anything either. they were clear too. so that GI pretty much wrote us off – but just bc it’s clear doesnt mean my baby isnt suffering!!! She will be one this weekend. I touched base with the latest GI before we left the country today – i’m in the bahamas with my husband (it’s a company trip for his work bu tHEY! it’s a VACATION for the 1st time in 2 kids!!!) anyways, the GI heard my concerns – that even with the reglan, and i know, it hasnt even been a week, but we havent seen any improvement – so he added ANOTHER medication – it’s actually an antihistamine that has a side effect of easing the GI tract….Cipro something….?? he said give it to her at night b/c the one compliant they hear from older kids is it makes them sleepy. so her grandparents started it last night on top of everything else – and they said she had a good night! but – they also are kinda in denial that anything is going on with her other than “she’s spoiled” – UGH – anyways ladies, i hope to touch base again very soon b/c you are all so informative and helpful. i really appreciate you all!!! THANK YOU and have a good rest of the week. i’ll be in touch soon!!!!March 21, 2013 at 12:37 pm #71864AnonymousInactive
It’s been a long time since that first scope was done. I’d think she should have another one along with a PH probe.
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