Posted By Posting
Oct 07, 2004
beccabernstein@hotmail.com
A parent with a child with EE, PLEASE HELP
HI! My daughter who is 8 months now has been diagnosed with reflux since 3 weeks old. She has been on Prilosec for the last 6 months and now the increase is not helping her any longer. The last 2 weeks she has not been able to sleep at night, waking up every 20 min or sometimes 40 minutes crying, arching, and getting stiff. I cannot seem to get her comfortable unless she eats (breastfeeding). It has been a rough road and really need to talk to someone regarding EE. My daughter has responded in the past to her prilosec and is now at the adult level, they have just added pepcid in the evening. Nothing is working. She does not vomit, but I do hear her burp her food into her mouth. She is generally ok during the day, but the evenings seem to be hell. For the last month she has refused feedings (solids) and goes through phases of eating well and not eating at all. She has not gained any weight in the last month, and lost a few ounces during the month. Someone please help. I cannot imagine trying to get an 8 month old who has only been breastfed to take a bottle, let alone a bottle of neocate. She tested allergic to soy and egg. I have no idea what else, because she is so fussy at night, I don't know if she is responding to another allergy food ( maybe rice cereal) or something in my diet. Right now I have eliminated dairy, soy, egg, chocolate, mint, tomato, citrus. I hope someone has some advice, because I am ready to loose my mind. I can't take seeing her in pain anymore. Thanks in advance for reading my rambling. Rebecca
Oct 07, 2004
Carla
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
Call a PAGER Volunteer
It sounds like calling a PAGER volunteer could really help you. They match you up with someone who has a similar experience to you, but is past their crisis situation. I don't know much about EE, but my friend's baby is 8 months, has that and severe reflux, and sounds just like your little one. Nothing seems to work. So unfortunately, the only advice I can offer is to call a volunteer and maybe you can get some much needed help. Also, there are some links on this website for EE, if you haven't read them yet, maybe you can find some valuable info.. I heard there is a discussion board somewhere on the net for parents of kids with EE. Maybe that can give you some more info too. Good Luck, Carla
Oct 07, 2004
Carla
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
wheat can be a trigger too
I did a google search on EE and a few articles came up. You mentioned that you eliminated soy, dairy, and eggs from your diet (and acidic foods). The article mentioned the soy, dairy, and eggs, but also mentioned wheat. I wonder if doing a gluten free and wheat free diet would make any difference. I can't imagine how hard that would be though!!! Just though I'd let you know.... Carla
Oct 08, 2004
beccabernstein@hotmail.com
thank you for your response, she did not test + for allergy to wheat, could that still be it?
Oct 08, 2004
Carla
Mom of 3 year old Chelsea with severe GERD, 2 fundos and hernia repairs, chronic GI pain, laryngospasms, RAD, subglottic stenosis, chronic congestion, and food allergies AND 4 month old Gavin with GERD and MSPI
maybe
I don't know enough about it to say, but it's what I read in one article. Wheat was on a list of triggers. My friend's little girl has reflux, but they think that what has looked like a worsening of the reflux, is actually celiac disease. This makes you have to be on a gluten-free diet and causes symptoms that can mimic GER like stomach aches for example. This little girl's brother is the same 8 month old with EE and severe reflux. It just made me wonder if eliminating wheat would make a difference. Gluten is similar I think, at least found in some of the same products. Considering it's your diet and not your daughter's, I suppose it wouldn't hurt to try. I know grocery stores have gluten free and wheat free products now. I remember hearing that reflux can appear worse, when in reality it is something else coexisting that is creating a problem. I think it would be worth looking into! My daughter's problem is just pure reflux so I haven't had to deal with this other stuff. I do watch my friend struggle with it though, so my heart goes out to you!!! By the way, I don't think (I don't know for sure) that they have to test positive for an allergy for a food to be a problem. If I am not mistaken, celiac disease, for example, is a food sensitivity-but can be a severe one. With EE, it may be that these foods trigger a response without necessarily testing positive for an allergy. Again, I am not positive, so maybe going to an allergy speciaist would help. I do know though that there is such a thing as a food sensitivity, different than allergy, maybe trickier to discover because not always as obvious as an allergy. Good Luck, Carla
Oct 13, 2004
Georgia
sympathetic ear
Hi! Your post brought tears to my eyes. I wish I had some miracle advice for you, but I'm actually new to this site looking for help myself. My daughter is 3 and 1/2 months old and is scheduled to see a specialist November 2. My daughter is also exclusively breastfed, although I haven't been able to find any link between my diet and her symptoms (her symptoms are constant it seems). She has been on increasing doses of prevacid which helped for a while until about 2 or 3 weeks ago. Now she demands to be fed every hour and a half, day and night. I'm sure it's for comfort, primarily. So, of course, no one is sleeping. I am numb with exhaustion and I just want to cry every time she cries. It is the most painful thing I've ever experienced to know my baby is hurting so much and I am helpless to fix it! I'm so sorry you are experiencing this too. But it's also comforting for me to know I'm not completely alone. Has your child seen a specialist? Good luck....
Oct 30, 2004
Anonymous
I went through this for four months with my son. It is a very difficult time for everyone in your family I am sure. If I were you I would try switching to a bottle and try the Neocate. Use a slow flow nipple and one as similar to the breast as possible. If Neocate doesn't work then try Elecare. My son was diagnosed with a milk and soy protein allergy and I went through the exact same thing that you have described. Nothing made him better until I put him on the Elecare. Even Neocate didn't work for us but it cant hurt for you to try it. I didn't want to stop breastfeeding either but now in hind sight I am glad I did because I was only making him worse off because of the foods I was eating myself. If you have a child with allergies and you can not identify what it is that is making them react then my best suggestion would be to try the Neocate. Breastfeeding is a very difficult and emotional issue and attachment. I know it is difficult to give up on but only you know if your child is getting better or worse. Try to take your emotions out of it and look at the over all quality of your life. If things are getting better than keep doing what you are doing. If things are getting worse. Try a different course. Don't give up until things are completely better. You owe it to yourself and your child not to give up. It is not normal for a child to be in pain and to scream in discomfort. For us Elecare was a miracle and now we have a completely different child but the most important thing is that he is not in pain anymore. Good Luck and hang in there.
Check with your
doctor first!