Posted By Posting
Jan 28, 2010
sadie'smom
Experience w/ EE & random questions
Hi, Despite running the gamut with medicine, Sadie is still in alot of discomfort especially at night. I'm starting to wonder if she has EE and wondered if any of you had experience with it. I don't know much about it. Also, I was wondering if your kids seem to be in more discomfort at night and if anyone knew why that is? And if the colic curl helped them? (It really helps Sadie, which makes me wonder if something other than GERD is our real problem.) Last question: Sadie spits-up all day and isn't in pain, then she has these attacks where she cries, often rubs her nose frantically but doesn't spit-up (nothing comes out of her nose either). Any ideas if this is silent reflux or something else? I'm so confused!
Jan 28, 2010
molson1525
Mary & Nicholas 7-17-03 (non-refluxer)allergies, asthma on Singulair and Flovent & Aidan 1-28-07(my refluxer)Nissen Fundoplication on June 20, 2008, FTT, MSPI, DGE, ear tubes, allergies and severe GERD now currently taking just Prevacid and drinking Elecare Vanilla 1+.
My son was always worse at night too. I was told reflux is worse at night because when sleeping your muscles relax and the LES is a muscle therefore letting more acid come up. Any chance she is constipated and that she is crying out from gas pain and that is why the Colic curl helps?
Jan 29, 2010
sadie'smom
Thanks! That makes a lot of sense--maybe that's it. I feel like we have a bunch of stuff going on. Just venting here, but I agree with other posters that the worst part is the rollercoaster. Things got so bad again we made a doctors appt so we could talk about more aggressive treatment and she's been great ever since we made the appt!
Jan 29, 2010
vigilantmom
Ryan was born May 20th 2008. 9 lbs 2 oz. Ryan’s magic bullet was 30mg of Prevacid capsules mixed with Caracream from Marci-kids (I am forever indebted to the team at Marci-kids), Claratin for the mucos, and Mirlax for the constipation. Within 2 months of this combo he jumped from the 6% to the 50% for weight and continues to climb. Be strong, listen to your instincts. Read his story for more specifics that just might help you too - Karen
My guess is that her rubbing her nose frantically is the reflux. Ryan is a silent refluxer and was always attacking his nose. The reflux was getting that high. It is called extra-esophogeal reflux. Go to http://www.marci-kids.com/eerintro.html. Great info and a great depiction of what is going on.
Jan 30, 2010
blueleopard
Pictured: G'mom w/3 kids. I'm mom to 1 angel Melissa (dec'd 11/92 - hypoplastic left-heart syn.)
2 healthy daughters (knock wood) Cory (16), Kim (11) & Eric (4) diagnosed with e.e. (scoped 8/08), GERD & severe food/seasonal allergies, asthma. Cried non-stop first 17 mths. of life Found out he is allergic to cow's milk, soy, eggs, and peanuts. Takes Prevacid, Neocate One Plus & Flovent.
I'm not on here a lot these days, but decided to check in this morning. My son was treated for reflux, then reflux and milk, egg, soy, peanut allergy for about two years. Finally, I pushed to have him REscoped (1st scope neg.) and we found the EE. I believe he wasn't eating a full diet or hadn't yet developed full blown EE at the 11 mth. scope. Anyway, he is going to be 4 in March. Symptoms to look for: trouble swallowing, choking, trouble sleeping, pain (crying/screaming in an infant), nausea, vomiting. A lot (but not all) of these kids go on to develop asthma, seasonal allergies. Any history of this in the families? A lot (but not all) of these kids will also have regular food allergies (immediate reaction type). My son has rubbed his nose frantically at times - I have linked it to an allergy to SOMETHING. So, just remember, if the GERD isn't controlled with medication, she has some of the symptoms listed, and you have a lot of trouble finding foods you feel she can tolerate, you may want to talk to GI about the possibility of EE. For some kids, it is more easily controlled (remove a few foods), for others it is a nightmare (no foods are safe). Unfortunately, my son seems to be in the second catagory. El
Jan 30, 2010
sadie'smom
Thank you...now that I read about EER that sounds like what might be going on. We just saw a pediatrician that mentioned infantile spasms. I had never thought she was having seizures, but we may do an EEG because it looks like the consequences of not catching that early are dire. (Sadie has been right on target developmentally so far, but we did have a very rough delivery.) Does anyone have experience with EEGs?
Jan 30, 2010
sadie'smom
Forgot to mention--blueleopard, I'm so sorry about your son's EE. It sounds like a tough situation. No one in either my husband or my family has any allergies, asthma, or any of the problems that could signal EE. I also wonder why an inflammation would be worse at night than during the day.
Jan 31, 2010
eesmom
Mason Matthew born at 28 weeks on 12/10/2007 with MSPI and severe reflux. Still on Neocate, strict MSPI diet, recently weaned off of Prevacid.
Evalise Adelle came along 4 weeks early on 12/2/2009 we thought we could be without this reflux stuff but no such luck. She's MSPI as well, off of breastmilk :-( and on Neocate for MSPI, has eczema (better with Neocate), and worse reflux than her brother did! Doing Buffer babies and Prevacid-
I don't have any experience with EE at all but I will say that my DS has a horrible time in the early morning hours too and this is very consistent. Her sleep is disrupted more than usual with reflux, she cries out frequently, is very restless, tends to have a lot of gas etc. Not sure why this particular time of day is so bad for her or your little one?...
Check with your
doctor first!