Home › Forums › Infant Reflux Information › Miscellaneous › Found our Key . . FINALLY
- This topic has 18 replies, 1 voice, and was last updated 12 years, 8 months ago by Anonymous.
-
AuthorPosts
-
December 4, 2007 at 1:44 pm #46106AnonymousInactive
Hi All – I haven’t posted here in a L O N G time but I was a regular during our reflux nightmare with my first child Sophia. After almost four years of pulling the pieces of the reflux puzzle apart I think we have finally found the last key to our succes. I’m not saying this applies to all but it may help someone out there.
Our daughter had severe reflux, gastrointestinal upset, colic type behavior and poor growth from the start. She was in the 10th percentile for weight at a year and on 30 mg of prevacid starting at 6 months. Our biggest challenge despite medication was CONSTANT night wakings. She would wake up every hour on the dot until 18 months – sleeping in a swing on high speed up until she was around 7 months old.
Around 8/9 months I started questioning multiple protein issues due to disasterous food intros. – mood swings, tummy upset, rashes, etc. By a year old she had already had numerous ear infections and now at three and a half she has had 25 to date. At 12 months I determined dairy was definitely a cuplrit and at 18 months I switched from breastfeeding to carnation good start soy formula successfully. By 2 years we were on all milk products and happy – off of meds finally.
At the three year mark I brought her to an allergist wondering if maybe allergies were contributing to the ear infections. She tested positive for 6 environmental allergies and was put on Zyrtec, steriod sinus spray, and a perscription steriod oinment for the awful rashes she gets. Eliminating the environmental allergies seemed to help buuut, the reflux roallercoaster began again. She started back on 15 mg of Prevacid approximately 6 months ago only to need a double dose within a month or so. Puzzled I brought her back to the allergist to explore food allergies which was my initial intent with our previous visit – he said he doubted food allergies because she was eating mostly everything and he wanted to start with environmental prior to food testing. This time though after none of her symptoms had totally gone away, we are slated for ear tubes, and worse yet she was back on Prevacid he decided to go forward with food testing.
She came back positive for MILK allergy. Now, I guess I shouldn’t have been surprised, but I was and so was the allergist. I guess I just assumed that the MSPI and reflux were in the past and that this new flare up was simply because she had reflux and would forever more. Its been three weeks off of milk products and a would be ear infection went away on its own, shes off of the daily doses of prevacid (within two weeks) and all of her rashes have cleared up. If she has cheese or any other milk product she gets itchy instantly and the reflux flares so I give her her Prevacid now on an as needed basis (ie when she has cheese – old habits die hard and its hard convincing a three something year old that cheese is evil )
Anyway, if any of this sounds familiar – try the milk route, it could save you A LOT of grief. I always doubted my instincts with Sophia and I’m not saying that milk caused her reflux, I think she had relfux and milk made it ten times worse – I just wish I had stuck to my guns and not been so wishy washy with my food concerns. Our second child is a dream baby – no reflux UNLESS I have milk (I’m breastfeeding). The second time around I didn’t doubt myself and cut milk out immediately without even knowing about my first childs allergry – Thank God for her sake and mine that we had already been there done that. Right after the 2nd was born I tested out milk and she was up for hours, spitting up, colicy, and had tummy upset. No milk, shes a happy spitter that sleeps like a log. It took three times before I said – no more milk for me, I’ve been dairy free for five months and the thought of pizza is enough to make me insane, but sleeping through the night starting at two months is worth never eating pizza!!!!!! So call it what you will – but I think if anyone has a reflux child, staying away from milk can’t hurt. Its worth a shot and its not something my GI specialist, two pediatricians, or a highly regarded allergist recommended upfront to us in the past four years! Luckily I followed my instincts with that one but I didn’t do it whole heartedly since I didn’t feel it was supported by all of my doctors, wish I hadn’t been so niave.
Hope that helps someone.
Take care ~ Liz
lovemysophia 2007-12-04 13:48:42 December 4, 2007 at 1:56 pm #46109AnonymousInactiveHey there, Liz! Congratulation on #2!!!! Didn’t even know you were pregnant! Sounds like things are going amazing and I am so happy for you and family! I think your story will help a lot of people!!!!
December 4, 2007 at 2:03 pm #46110AnonymousInactiveThank you for your story… i have seen some of your posts in teh past and i am glad you finally figure out what is upsetting your kids (oh and congrats on your new addition).
I think it is great you are posting this… i have a 4 week old adn we are moving onto Neocate, probably tomorrow when i get it. I know that my first does not have issues now and is doing great but he did end up on neocate, meds etc etc and who knows what it was!! So with this one who has colic, sleeps in my arms/or cries i should say most of the day and has reflux… we are moving to non-milk formula quickly… thanks for sharing…December 4, 2007 at 2:32 pm #46111AnonymousInactiveThank you so much for sharing!!! It is really interesting to me that her reflux symptoms subsided for nearly a year. Did the allergiest have any ideas as to why that would be? I have always wondered about my son, but the doctor just looks at me cross eyed when I even suggest it. He’s still too young for the tests to be reliable (I think), but I’m going to remember your post when he gets older.
Oh, and I”m so glad that she is doing so well AND that baby number two is happy and healthy!!!
December 4, 2007 at 4:19 pm #46114AnonymousInactiveHi all – just forgot to add one last little clue to milk allergies for both of my kids – congestion! My first daughter itched her nose constantly from as early as she could reach it and the second one was practically wheezing!
Naomi – My doc looked at me cross eyed too even with number two. . got the same old “baby’s just are. . .blah blah.” but as soon as I cut out milk daughter number two stopped with the severe congestion! When I reported all of my finding to my pedi she was like – well I guess you’ve answered your own questions. Still no real confirmation of your right! She only really affirmed it once the tests came back positive for milk on my older child and even then she said “well you always were thinking that.” GRRRRRRRRR. I guess whats she gonna say after she never really pushed it and shes the one with an education in early childhood medicine. Goes to show you “Mom knows best :).
Good to hear from you girls and congrats on the new additions – boy amazing how much happens in just a few years!
ooops – forgot – I think the period of non-medication was either just a low reflux period (ie – silent refluxing) or we weren’t doing a lot of milk or a combo of both. My pediatrician was saying that it was a return because it was now childhood reflux versus infant but I wasn’t buying it. We had a lot going on and I think these refluxers are troopers – they go through a lot of discomfort and honestly I think my dd’s just was used to it. But one day she came running up to me and said “mommy mommy – I burped and food keeps coming up in my mouth.” I thought – not again!!!!!! But who knows, maybe she just finally got to a level that she could communicate it to me or maybe it just had been tolerable until that point. I know my mom is on Prevacid and takes it on an as needed basis because of dietary changes or stress makes it flair. But if medicated properly prior to a break from meds it kind of takes care of itself for a period of time before it becomes insufferable again. Now if Sophia has it bad I can hear the burps and she starts complaining and asks for her medication so we go in spurts when she needs it and then lower it when shes doing well. Nice when they can tell you! lovemysophia2007-12-04 16:28:41
December 4, 2007 at 5:22 pm #46116AnonymousInactiveThanks so much for posting! I’ve always appreciated your advice, and your experience will certainly be helpful for others. I’ve often wondered about milk allergy for Hailey, since she’s 2.5 and still refluxing. Both our ped and GI have brushed me off like I’m insane, telling me that if she’s allergic she’d have more signs than just reflux- that we’d have rashes, outright vomitting, diarrhea instead of constipation. I plan to force the issue and go for allergy testing if we’re still dealing with this at age 3. And cutting out dairy is harder than it sounds… especially for a kid with a feeding aversion… so I know how you feel.
Congrats on baby number two, btw!December 4, 2007 at 7:45 pm #46122hellbenntKeymasterhi Liz!!!!!!!!!!!!!!
congrats on baby #2!!!!!!!!!!!!!!!!!!can’t believe we’re on baby #2, LOL!!!here’s to a non-refluxing second one!THANK YOU for the update! It sure will help othersDecember 5, 2007 at 9:46 am #46142AnonymousInactiveHi Laura! Figured you would track this down and say hello .. so glad you did! Thanks on the congrats, Ava Louise was born on July 30th and she is the opposite of her big sis – chunky, good sleeper (sleeping through the night at 2 months), happy happy happy, easy going, just a dream come true. I have to be careful not to “celebrate” her wonderful disposition too much around her older sister – lol!
Lori in regards to pushing for allergy testing and your underlying concerns, go for it! Its only a scratch test and takes no time at all. We did it on the back both times instead of the arm and besides an extreme reaction with milk it was tolerable for Sophia. The poor thing freaked out the minute they put the milk test on her. The pedi never sent us, I luckily don’t need a referral and found one on my own and went without telling the pediatrician. Sophia never had the bloody stool but she did have constant constipation – to the point that she went on a maintenance dose of childrens laxitive for a couple months around 1 1/2. The constipation was an issue from birth! So, listen to your instincts – its not like allergy testing is invasive and a simple 1/2 hour test may save you a lot of grief.
~Liz
December 5, 2007 at 9:26 pm #46168AnonymousInactiveLiz, it’s so great to see you around! Congrats on baby Ava! That’s so wonderful that she’s reflux free! I have to totally agree with you. I wish that I had pushed for allergy testing with Kaelyn earlier. We could have saved her so much grief and discomfort. Her ped, ped GI and the allergist all said that it was highly unlikely (or impossible) for her symptoms to be allergy related until she finally broke out in a rash/boils that they couldn’t ignore.
Naomi, the tests aren’t considered to be totally reliable at that age, but they did RAST blood testing at 9 months on Alex (and found a milk allergy that she’s already outgrown). They did Kaelyn’s RAST testing at 16 months and found her milk and wheat allergies. Then we did skin testing at 18 months and found her apple and peach allergies. So, you can determine allergies early on.Lori, in 25% of children with milk allergies, the symptom is constipation, not diarrhea. Kaelyn has suffered from constipation almost her entire life.February 27, 2008 at 10:46 pm #48675AnonymousInactiveUpdate – 2 months on a completely milk free diet and I can say with extreme confidence that my childs milk allergy is the route cause of her reflux and ear infections! Obviously she is prone to reflux but now that we are milk free she does not need her prevacid unless she ingests a product with milk in it and she has not had an ear infection since the fall – tubes are now off the table. She is completely off of allergy and reflux meds unless needed. After all of our nightmarish reflux and sleepless nights I am so relieved to have finally found a solution to her discomfort – I guess in that respect we are very lucky. The bonus is my now 7 month old is milk free as well and will not have to suffer through reflux as a result – any milk she gets through my breastmilk causes the same reactions that it did in our older child!
Hope everyone is well and that this helps someone.
~Liz
February 27, 2008 at 11:50 pm #48678AnonymousInactiveHEY LIZ!!!!
good to see you on the boards….and reporting very good things! i’m so excited for you! what a sigh of relief, especially having found the key for baby ava.
funnily enough, we are embarking on baby #2 as well! i’m 6.5 mos along and due in june. we’re having a girl, and VERY early on she indicated she did not like when i ingested dairy (i felt HORRIBLE). i cut that out of my diet and have felt better since. i’m also on prevacid, which i probably should have been on for years, but that’s another story….
it’s nice to know that GOD-WILLING, my cutting out dairy will save this little girl from the pain riley experienced! you’ve truly given me hope!!!!
also, if you ever want to know about dairy-free things i use, i would be happy to give you a list. i’ve found a wonderful ‘cheese’ that is by rice brand. it does have casein in it, but otherwise is the best i’ve found! i was craving pizza like mad, too! this has helped a lot, but don’t know how sensitive little ava is to trace dairy. i had to do this when i breastfed riley, and i am very excited to see how many more things out there now for me to satisfy my cravings.
well, don’t want to hijack the post, just so happy for you (and also the hope you’ve given me!!). take care….email if you’d like!
gina
March 13, 2008 at 10:18 pm #48990AnonymousInactiveHi Gina! Congrats on the baby to be. A boy and a girl – how nice! Yes, I would say definitely cut out dairy and intro it slowly afterwards if you think its an issue. Can’t hurt. I hope your feeling well other than that gliche. I can’t stand being pregnant – not one of those happy moms to be when I’m carrying – lol. But June is a great time to be due, right before the summer months is great timing!
Just wanted to tell you that if your still craving pizza Tofutti brand makes a totally dairy free pizza called “pizzaz” its awesome and would pass for real pizza. Look for it in the frozen food section. Unfortunately we cannot have any casein or whey so we are stuck going cheeseless. Tofutti is my fav. dairy free company but I have been unable to find their “cheese” around here – its totally dairy free. My poor little Ava suffered her first double ear infection (along with two weeks of projectile vomiting and up for nights on end) after I slipped up twice and had milk during those two weeks. Just not worth it for us I guess. I am SO happy that I found out sooner than later with her what the actual cause of all of our suffering was. Sophia is still on prevacid here and there. If she gets a cold her reflux seems to flair or when she mistakenly gets the smallest amount of milk we are back at square one. God willing she grows out of her milk allergy – life without cheese and icecream is not exactly as fulfilling :-). Of course life without constant reflux worries is wonderful though!
Take care and so good to hear from you – good luck with baby number two. .. sending you reflux free sleep filled nights and happy baby day vibes!
Liz
May 3, 2008 at 7:18 pm #51064hellbenntKeymasterJanuary 7, 2012 at 10:22 am #69668AnonymousInactiveI found your information so helpful! So did you put her on soy milk or something else? Cole is 12months and still getting up a lot at night. Last night was the worst in a long time. He couldn’t settle even holding him it took him over an hour to go to sleep. He is on a 1/2 of a 15mg prevacid at night and completely on milk.
Thank for any info and Congrats on all your persistance! Motherly instinct all over rules!
Dana
January 7, 2012 at 11:50 am #69669hellbenntKeymasterI can’t find her
There are a lot of posts about various ‘milks’You might want to try rice or potato or hemp?soy might give problems as well (it’s the ‘s’ in mspi, milk/soy protein intolerance/allergy)?I did a search (upper right-hand corner of the scren is the search button) & chose ‘All Foruns’ and searched ‘one year and older’I came up with: -
AuthorPosts
- You must be logged in to reply to this topic.