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 Topic: Joining the club |
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frazzledmom
Newbie 
Joined: 17 July 2012 Online Status: Offline Posts: 14 |
   Topic: Joining the clubPosted: 17 July 2012 at 11:16am |
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Hi there,
Just found this forum in my desperation of searching the internet for any answers. My 2nd child is now 21 months old, and we are in the process of getting this reflux diagnosed. The process is agonizingly slow, as are the answers and treatment. Things have progressivley gotten worse, to the point where the last 6 months have been really difficult, and the last 2 have been absolute hell. He wakes up anywhere from 1-5 times each night, goes to sleep around 9pm and wakes up usually at 4:45 am every morning - at that point he is up for the day. That is often with more waking up throughout the night. He usually only takes an hour nap in the day too. This makes for a really cranky baby during the day, and a really stressed out mom. Add to that tons of difficulty eating, tons of fighting with his brother, screaming, tantrums, wild uncontrollable energy that borders on mania and you have one messed up family. Different types of food doesn't seem to help, nor does the medicine we have been given. Our doctor sent us to the local children's hospital to work with more of a specialist. That has been surprisingly slow and difficult to get answers. We had our 2nd appointment yesterday, things have gotten worse since the first and since being on medicine. And doctor's answer was to up the dosage (of the medicine that made no difference this month) and wait another month. Another month?! Does she know how one day is an eternity? A month is unfathomable.  Really don't know what to do - any thoughts or ideas on where to even begin would be great. . |
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hellbennt
Admin Group 
Joined: 28 August 2003 Location: United States Online Status: Offline Posts: 13402 |
Posted: 17 July 2012 at 11:57am |
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hi & welcome!
research all you can! you've found a fabulous place for that!
you can always go to the upper right-hand corner of the page and click on 'search' - search ALL FORUMS and also choose SIX MONTHS OR OLDER in the drop-down menu.
try various keywords (depending what you're looking for)
This is so you can learn from all that have left here - their babies are better & they just don't post anymore...
The board is very quiet right now - perhaps bcse it's summer, perhaps bcse there's no advertising or effort to make it come up as a top listing when googled? who knows?
 sounds like a protein intolerance or allergy (probably intolerance?)
best EXPLANATION OF FOOD ALLERGIES/INTOLERANCES and their RELATION TO REFLUX that I have found, to date: 2nd post: http://www.infantreflux.org/forum/forum_posts.asp?TID=2697&PN=2 Did he breastfeed? formula? Was it a special formula? Neocate? Alumentim? Nutrimigen? If so, I'd DEFINITELY say it's proteins in his diet that are affecting him... at this point, I'd guess it's milk?
Milk allergy/night wakings/lLoveMySophia: There is so much info! I'm sorry to bombard you, but I may not be back on the board for a week & I want you to be able to research and find what resonates with you- I'm sure you'll read something and think "Yes!" "This is my baby!"
Exposure to foods & blood testing: http://www.infantreflux.org/forum/forum_posts.asp?TID=12993 Sheri’s allergy/intolerance explanation: http://www.infantreflux.org/forum/forum_posts.asp?TID=10223&PID=87638#87638 Another Sheri explanation- intolerance/allergy post: http://www.infantreflux.org/forum/forum_posts.asp?TID=11579&PID=97442#97442 Accuracy of allergy testing & great post by sherri explaining IgE and IgG (intolerance/allergies) http://www.infantreflux.org/forum/forum_posts.asp?TID=10815 probiotics, brands used: http://www.infantreflux.org/forum/forum_posts.asp?TID=8970&PN=1
Post from me: I have a Prevacid 101: scroll to the last page of this post, (it's actually also about other PPIs like prilosec, too) I would also say to try some mylanta cherry supreme before naps/bed? Mylanta Cherry Supreme is the one variety of mylanta that does not contain aluminum. You can't find it anymore, but you can find store brand equivalents. Try rite-aid, cvs brand, walmart, target, Bartell Drug (West coast), Dollar General, brand names: Geri-Care & Geri-Lanta Supreme, meijer, etc- just look for one that does not list aluminum in the ingredients. you can give 1ml up to 5 times a day- it's safe, even for newborns.
if you see loose stools back off.
it must be spaced 4hrs from a PPI (prevacid, prilosec, zegerid, nexium, protinix)
any tests? I'd DEMAND and endoscopy and a ph probe at this point!
MSPI 'Main' page: |
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~laura~
Jonah 7/03:GERDfree@12mos! Silent Reflux@birth(apnea episodes/NICU);Past Sandifer Symptoms, breastfed->15mos Ari 7/06 REFLUX FREE, so miracles do happen! |
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frazzledmom
Newbie
Joined: 17 July 2012 Online Status: Offline Posts: 14 |
Posted: 17 July 2012 at 4:31pm |
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Thank you Laura! I'm excited to dive into all this today, and at this point am excited to have any direction to go in. So thanks for taking the time to respond to my post and help point me in the right direction.
My guy is currently on Omeprazole. We have been just on a single dose, until yesterday. At our dr. appt she put him on 2 doses a day. He breastfed exclusively until he was about 18 months old and around the last few months he was asking to nurse every hour on the hour. I gave up at that point. (Kind of a no-duh, something was wrong). thats when we began to really investigate, although things have been so on and off with his symptoms, it has taken us this long to get to the bottom of things.....of course now that the on- off pattern has switched to ALL ON that's when we are finally figuring it out! Jeese Hindsight is an amazing thing! Yes, I've thought of a food intollerance - (we do oat, almond or soy milk) - my oldest has intollerances to wheat and dairy. We have at different times been dairy free with my little one, but that hasn't seemed to stop the issues. But I do think you are right that there is something he is eating that is the source. Right now we are feeding him anything that he will possibly eat, which is not very much, and never consistent types of foods that he prefers. The few norms are Pediasure, goldfish crackers and fruit, because he simply won't eat anything else for a span of 3 or 4 days, and then all of a sudden the clouds will part and he will become a garbage disposal for a few days and eat anything and everything that we put in front of them. Thats when we usually push the veggies, fruits and grains to get him filled up. He has been teetering on the 4% of weight to the 15% of weight on the weight charts. Not end of the world alarming, but he's definitely a skinny kid. Anyways I think I hit all your questions in your post. Thanks again for the info - I will be reading through all the great stuff for the next couple of days.  Thanks |
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Happy Mom
Fan 
Joined: 04 May 2012 Location: United States Online Status: Offline Posts: 396 |
Posted: 21 July 2012 at 2:30am |
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Hello from Happy Mom to Frazzled Mom, :)
If I had found this site 5 years ago my user name would've been frazzled mom too. Actually at that point I might have named myself "BarelyAliveMom". Anyway I am glad now that I have found answers to my children's problems and am now doing my best to help other suffering babies and mamas. I find it very interesting how differently acid reflux and food intolerences affect children. Some eat all the time because it soothes the pain and... some refuse to eat because they know it causes pain. Some barf all the time all day and... some never barf. Some have constant diarrhea and... some have constant constipation. And more... I fond it really interesting how many moms say that their reflux children have boundless energy. Like... climb the walls. That would be my first child. When he was suffering he seemed out of control sometimes. When I would try to discipline or calm him down it was like he didn't hear me. I was so amazed at how his behavior improved when his pain lessoned. My second son would get cranky and lay around saying "I'm sick". He is a very happy little boy though when he eats properly and feels good. The most interesting thing that I find in all this is that the underlying cause to all these different symptoms often has the same. The cause is... the inability to properly break down the food that is eaten. When food is placed into the stomach it need to broken down into a usable form. One of the hardest things for the digestive system to break down is protein. Protein in milk can especially be hard. Thus why so many people have a milk "allergy" or "intolerance". Digestive enzymes are made in the pancreas and placed in the stomach to break down the food. All foods have enzymes in them to aid in breaking them down but these enzymes are killed when food is cooked or processed. So unless we have a diet that is high in uncooked foods, our pancreas will most likely have a hard time making enough enzymes to break down all the enzyme-lacking food we eat. But for some people (as in my family) a slow working pancreas is inherited. Both my parents, most of my siblings, and many of my nieces and nephews have suffered from digestive problems. :( Some in my husbands family also suffer from pretty bad acid reflux. So it is no wonder that I have children that have digestive problems. (If only I would've known what I know now BEFORE I had children.) Ok, so when a body is lacking enough enzymes to break down the food, then the stomach starts to produce excess acid to try to break it down. And that excess acid then sometimes travels up the esophagus and down into the intestines. It can cause reflux, heartburn, barfing, diarrhea etc. After this happens for awhile, the acid starts killing off the probiotics (good, live bacteria that coats and protects the entire digestive tract). When the probiotics start to die then the esophagus and intestines become exposed and can get raw and painful, and even bleed sometimes. :( So, for my children... the answer was simple... a probiotic/enzyme supplement along with alkaline water that counteracts the acid. Hmmm, I normally just give a link to people to read my entire story on the blog I created, but I guess I was feeling inspired tonight. :) But now my brain is getting sleepy so I will give you the link now. Actually it's in my signature. :) I wish the best and hope that SOON you find some answers!! |
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Martha, mom to Quinton, Jackson, & Shiloh
My blog- Treating our children's reflux/MSPI with probiotics and enzymes.. NO MEDS! |
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frazzledmom
Newbie
Joined: 17 July 2012 Online Status: Offline Posts: 14 |
Posted: 22 July 2012 at 11:55pm |
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Hi Happy Mom,
I hope to be a happy mom soon! Thanks for your friendly post - its great to know others have traveled this road and gotten to a healthy and peaceful place, as right now, that seems so far out of reach. That's amazing that your kiddos reacted in such different ways to their intollerances. And thanks for sharing what helped your kids feel better. I will look into that- ANY suggestion at this point I am happy to entertain! Whatever will work, will work for me!!! |
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hellbennt
Admin Group
Joined: 28 August 2003 Location: United States Online Status: Offline Posts: 13402 |
Posted: 28 July 2012 at 5:14pm |
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any updates?
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~laura~
Jonah 7/03:GERDfree@12mos! Silent Reflux@birth(apnea episodes/NICU);Past Sandifer Symptoms, breastfed->15mos Ari 7/06 REFLUX FREE, so miracles do happen! |
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frazzledmom
Newbie
Joined: 17 July 2012 Online Status: Offline Posts: 14 |
Posted: 01 August 2012 at 4:24pm |
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Thanks for asking! All you who have been through this know how hard it is to even pick up the phone to make a call, or sit down to type on the computer! I think it took me 25 minutes to type this!
We actually had a great 4-5 days - it gave us all such a rest and was a breath of fresh air. We started using his omeprazole (prilosec) smarter and more effectively. I think we were doing the medicine too close to eating. When they say don't feed them within 30 minutes of taking the medicine, they mean it. That was the golden ticket for us to getting it to work. We went off of it (ran out of med) for a day, and he was back to his screaming and howling again. While I am thrilled that the medicine is working, I feel like that is only masking what is the root of the problem. I appreciated the posts and ideas on what the problems could be. We have done the no dairy thing (my other son has a food sensitivity to dairy), so that's not it. I went wheat free for awhile and that doesn't seem to be it. I went to a chiropractor/holistic dr. recommended to me this last week in desperate hopes to do anything at all to help improve situation. He did some kind of strange tests, but told us he isn't allergic to any foods, but that he has a a hiatal hernia. I am in the process of scheduling the scope with the Children's hospital dr, so that should shed some light on all of this. Some questions/thoughts on my mind 1)what does it mean that my kiddo didn't have reflux during his 1st year, but that it came on with a vengence after that...seems like I might be in the minority on this forum in that respect. 2) I have worries about the medicine just masking the root cause. I guess the scope will help us identify a hernia or other physical problem. 3)We are most of the time a vegan family (occasional meat/dairy when we go to eat at someone else's home or go to a party. I have questioned if that is a contributor. if anyone has thoughts on those random ideas, that would be great. Seems like there is always a question rolling around in my head about reflux... Edited by frazzledmom - 01 August 2012 at 4:26pm |
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hellbennt
Admin Group
Joined: 28 August 2003 Location: United States Online Status: Offline Posts: 13402 |
Posted: 01 August 2012 at 6:26pm |
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do a search for hiatal hernia - the search button is on the upper right-hand corner of the page- use hiatal hernia as key words, check under 'all forums' and make sure to choose 6 months and OLDER from the drop-down menu...
I think they can miss a hiatal hernia in a scope
 ? - but I am not sure- look for posts by kevieb and from anne - they had babies w/ hiatal hernias...a scope still will give you helpful information! they will check for irritation/ulcers and they will biopsy parts to see if there are 'eos' cells- these cells would indicate food allergy...
if you'd like to not have to worry about the timing of the meds, then look into buying the products you can use w/ prilosec to make it so that you can give at any time - look for the link from prevacid 101
scroll to the last page of this post, (it's actually also about other PPIs like prilosec, too) at this point, I might explore probiotics
probiotics, brands used: http://www.infantreflux.org/forum/forum_posts.asp?TID=8970&PN=1
and/or digestive enzymes...you can also try some aloe vera juice. again, anne posted about this so you can search for aloe vera, too... |
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~laura~
Jonah 7/03:GERDfree@12mos! Silent Reflux@birth(apnea episodes/NICU);Past Sandifer Symptoms, breastfed->15mos Ari 7/06 REFLUX FREE, so miracles do happen! |
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kevieb
Senior Member 
Joined: 02 December 2003 Location: United States Online Status: Offline Posts: 3539 |
Posted: 02 August 2012 at 12:22pm |
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they can defininely miss a hiatal hernia when they do a scope--if the hernia is not pushing through when they do a scope---they can't see it. My daughter had to have a fundo just before she turned 10 months old. she had had two upper gis and a scope and no hiatal hernia showed up. She also had a ph probe that came back really bad, she was refluxing almost 25% of the time and her esophagus was getting ulcerated (they knew that from the scope, not the ph probe). They told me she did not have a hiatal hernia. i did not take her to a ped gi until she was 6 months old---I didn't want to make the 3 hour trip----the ped gi upped her meds and told me to call in a month and come back in two. I called in a month and said I thought she was doing about as good as could be expected--but when i took her back in 2 months----she wasn't gaining any weight.
We did tests a month later---and she had surgery two months later----and after the surgery, the surgeon came out and told us she had a good size hiatal hernia. She was failure to thrive for two years---after her fundo, she had some other problems and just after she turned two, they removed her tonsils and adenoids--obstructive sleep apnea--it can cause a child to be failure to thrive. That was a new one for me---and she was my 9th child!! She also had a bout with esophageal thrush.
She is going to be 9 years old in october and she is still a skinny little girl--but all of my children have been pretty small---10-20%. I have one daughter that I thought was built a little bigger like me---but I had them chart her not too long ago---and she is about in the 30%-----I gues that extra 10% made her seem big to me!!LOL!!!
I guess I'm wrong about that---I just read my journal the other night---one of my boys was in the 75% at around 4-5 months. My first two were pretty chunky as babies---but got really skinny when they got a little older. I forgot about them being chubby babies----my other 6 babies were all so tiny----all of my kids wore slims---and slims were usually too big around.
I would stay away from soy products--there is just too much bad info out there anymore about soy and all the phytoestrogens and the health problems they can cause. I really think it is not healthy to be vegan, either. I just recently flew across the US to see a doctor to try and aleviate some health problems I have---he gave me some information about diet that is totally different that our "politically correct" diet we are always told to eat. then, in a relly weird quirk, i happened to end up sitting to a bio-chemist on the airplane ride home---and he confirmed what I was reading about how we should be eating----and it's not the way we have been taught for the last 20 years.
Look up the Weston Price Foundation---they have a lot of really different info on diet---I have not managed to implement a healthier way of eating yet--but I'm going to work on it. The funny thing, is that alot of the things they talk about and recommend, I have been starting to hear randomly here and there over the last number of years.
I have a hiatal hernia and I have had to have my esophagus dilated 3 times. My food gets stuck and it is really painful. i had 2 bouts of it yesterday and realized I really need to go be scoped again--it has been over 1 1/2 years since i had a scope. I had eosinophils the last time they scoped me---enough that it could be eosinophilic esophagitis. EE can be caused by environmental allergies, also, not just food allergies.
When you ask whjy your son would not have reflux the first year and then have it really bad the second year, it does seem really strange. Are you sure it is reflux? you said it has been agonizingly slow getting it diagnosed and treated. What made you suspect reflux, and have they actually given you a diagnosis of reflux? If he is not spitting up or throwing up---and he has not had a scope or ph probe done yet, I am wondering what made your doc decide to put him on omeprazole?
You also said you exclusively breastfed him for 18 months---that seems pretty old to put off starting solids in a baby--or did I mis-understand what you meant? Did he have solids also, just no other formula or milk?
You can develope allergies at any point in time, so if he happened to have EE, that could explain why he had no problems his first year. Another thought, is the possibility of having esophageal thrush that he did not develop until then. Sylvia refused to eat anything when she had it, she would only breastfeed. One of my older daughters had it when she was in 9th grade---and we had no idea until she had a scope done for reflux.
I have also had it a couple of times after taking some pretty strong antibiotics for two different staph infections---it really hurts!
My twins both had reflux, but they also have celiac disease. After they had been gluten free for about a year, they were able to go off the prevacid---however, my next daughter down also has celiac disease---and she has never had any problems with reflux.
I want to have a fundo done on myself. I'm pretty sure I got this hiatal hernia when I was pregnant with my twins---so i have been dealing with this for about 21 years. I have fought taking the PPIs because Sylvia's surgeon told us he did not think it was a good idea to change the natural PH of your stomach for a long period of time. I just recently asked my new doc about PPIs, because I thought I needed to take them after this last staph infection---I spent almost one whole night with really bad reflux. He told me he did not think it was ever a good to have to take PPIs.
I know I don't have too little stomach acid causingit--i know there is alot of talk about that these days. they say if you take some vinegar and it gets better, you will know that it is too little acid causing it---well, the night i was up with the relly bad reflux---I tried a little vinegar---man did that burn like nobody's business.
Well, I can't see my whole post in this tiny little box----I hope I haven't rambled on without making much sence----I was just trying to throw out alot of different scenarios that we have dealt with to give you a few more things to consider.
keep us posted.
By the way, my daughter has done very well since having her fundo---she has hardly seen a doctor until the last 2 years. We have had to test her for rheumatoid arthritis and celiac disease (DH, myself, and 8 of my 9 kids carry one of the main celiac genes)she is also starting to break out in really nasty rashes on her feet---just like I did at her age---I have atopic dermatitis. She can burp, but she cannot throw up when she gets sick. I give her carbonated pop and saltine crackers and she keeps a bowl nearby to spit into. (I always make my other kids keep a bowl nearby to throw-up into).
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christine
leif 83 daisy 85 ian 89 kassandra 91 reflux celiac tianna 91 reflux celiac molly 95 celiac elliot 97 samantha 99 sylvia 10/6/03 fundoplication hiatal hernia repair 7/29/04 |
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frazzledmom
Newbie
Joined: 17 July 2012 Online Status: Offline Posts: 14 |
Posted: 05 August 2012 at 4:41pm |
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Thanks for taking the time to respond with all your experience and insight on this!
I appreciate all your experience on the hiatal hernias - geesh - I had no idea it could be so hard to spot! But its good to hear a success story, that your daugther is doing well. to answer your several questions: No, I'm not positive it is reflux. After being sent to a specialist and sharing my son's symptoms with several different doctors, they suspected reflux, and put him on the medicine thinking that if it worked, then they nailed the problem. My problem with that is that it isn't addressing the root cause. Getting a scope on Thursday, so maybe, just maybe, that will show something. He is not spitting up or throwing up. I do hear some indigestion throat noises but they never make it out. He is just wanting to eat every hour on the hour, but often times refusing to eat. And then when he has a good day, he is an absolute garbage disposal. I know some kids are like that, but if it wasn't affecting his personality, sleep and peace, then I wouldn't have as big of an issue with it. He feels miserable much of the time. I breastfed him up until he was 1 1/2, but yes, I did introduce solids somewhere around 6 months. So yes, he's been eating solids for quite a long time. Yeah, I have had a lot of thoughts about allergies - we have gotten him tested, as well as altered his diet to find a pattern linked ot this, and nothing has come up yet. Anyways, thanks a ton for your thoughts - it all helps to sort through this and get a more clear picture of what possibly solutions could be. |
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