Posted By Posting
Jun 03, 2009
mommy2d&h
The dreaded "C" word
Hello, I had posted several weeks ago and wanted to see if I might be able to get a little more advice. You ladies are great! My son is now 9 weeks old and is currently on Prevacid 7.5 twice a day and I am BF and have now been on the Top 8 elimination diet for a month. We have seen some improvement, but he is certainly not symptom free. He still has screaming fits, green liquid, stools, chronic congestion, etc. We have been to the GI since I last posted and I felt the visit was a complete waste. He was patronizing, to say the least, and basically told me that he wasn't sure what exactly was going on, but that he thinks my son has reflux and a milk protein allergy (I had already been off ALL milk for 4 weeks). He offered further testing, starting with an upper GI, but said that he is pretty confident nothing is wrong anatomically. At one point he threw in the "c" bomb (colic) and told me that no matter what, things will get better with time. Needless to say, when he left the room, I started bawling! I'm just not sure where to go from here. We haven't had the upper GI done yet, which he said was fine, because I don't want to put my little guy through something that is likely needless. Also, at our appointment the doctor prescribed Reglan, but my son was SOO fussy and wired on it, that I stopped it. I called to see if they would recommend trying a different PPI, and they called in a prescription for Prilosec, which the pharmacy compounded. I haven't started Prilosec (instead of Prevacid) yet because I am trying to add food groups into my diet and I wasn't sure if adding another new element into the mix right now might confuse everything. Unfortunately, adding food back into my diet has been very confusing in and of itself because he has never been at a symptom-free baseline to judge against. Yikes, I know this post is long, but I am just wondering if anyone has advice on what I should do next - Should I continue to actively pursue options to help my LO, or should I except that we might not get any more relief from any intervention and that we are just going to have to tough it out until he gets older! I know that the GI and ped. are relieved that he is growing wonderfully (90th percentile), however he is not their child and they don't have to see him in pain or wake up with him at night!! Any advice???
Jun 03, 2009
johnniesnewmommy
Hang in there. In my experience the doctors don't even listen to half of what we say. I am in the same boat with the not knowing if I should change meds, foods etc etc because I won't know what is making it worse or better. If you are going to change to the prilosec then I would definitely wait on adding any more foods back into your diet, that way you will know for sure if the new med is helping or hurting. After about 2 weeks you should know how the med is working then can start adding foods back. Just my opinion. Oh and don't give up- I would still get the upper GI done - it really is a very simple test.
Jun 03, 2009
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
Hugs, mama. We're all been there, both the BF and formula moms. Just an FYI - the compounded Prilosec only lasts so long (usually 4 weeks if compounded correctly, which can be a problem. Go to an actual compounding pharmacy of at all possible). Just remember that it does get better with time usually. As they grow, the muscle tone improves and the acid will be able to stay where it belongs!

I know the die hard BF moms like to consider formula as an absolute last resort, but so many of these kids to much better on hypoallergenic formulas (Nutramigen and Alimentum) or elemental formulas (Elecare and Neocate) so it is something to consider.

The upper GI scan/barium swallow is just to rule out structural abnormality, not to diagnose reflux (though you may see it) but is often used as the first step. The diagnostic used to truly find it is the endoscopy, which is worth it if you're not seeing good improvement. We did my dd's at 6 weeks old.

I would honestly do the med switch first, then add foods. It does take at least 2 weeks to see improvement, even in just a med switch, so patience is key (easy for me to say on the other side of this now!) HUGS!! It gets better, but it can be along journey to get there.

Jun 03, 2009
abbysmom
Andrea: Mom to 3 crazy girls!
Jackie (3/01)
Payton (9/03)
Abby (4/06) Prevacid 7.5mg (evening), MSPI, goats milk (currently trying to wean off Prevacid)
Photobucket
I agree, I wouldn't add any new foods into your diet. Are you also eliminating hidden dairy and soy? If you do try the compounded Prilosec read this link on compounded meds so it is made properly http://www.infantreflux.org/forum/forum_posts.asp?TID=4505

I didn't bf with Abby so I'm not much help with that. But she is MSPI and did so so on Nutramigen but did awesome on Neocate! The best stuff around! And if you are satisfied with the first GI try another. It took us two before we found one that we liked. Andrea

Jun 04, 2009
lorenzomama
Lorenzo b.4/25/07 1 week in NICU w/ aspirate pneumonia from a reflux episode; diagnosed GERD at 9weeks; Used Zantac for 5months. Currently using Chinese Medicine and Craniosacral Therapy. GERD, Obstructive Sleep Apnea, Sensory Processing Disorder. Ask me about breastfeeding a refluxer! Pic: day 5 in the NICU.
I am of the opinion that there is no reason to assume that your little one just has to suffer. Sometimes, even though most of us reflux mamas are already exhausted, it takes a lot of extra work and energy to find the best doctors, medications, alternatives, etc for out little ones and it is worth the effort. That's why so many of us find it so valuable to get the support offered here -- even under the best of circumstances, reflux can be a real rollercoaster, with symptoms getting better and worse for all manner of different reasons, and different practitioners responding in utterly contradictory ways to our concerns. I agree that if you don't feel good about the way a physician responds, you would do well to find another. There are also a lot of alternative therapies available in many locations (like Chinese Medicine, Acupuncture, Craniosacral Therapy, Homeopathy, etc) which can be used in conjunction with Western medicine if you find your little one is not responding as well as hoped to medications.
Jun 04, 2009
mommy2d&h
Thanks ladies, for your encouragement and advice. I decided to stop adding foods back in to my diet and to take some time to start Prilosec and hopefully get the reflux better under control. I'll stay on the elimination diet for now (eliminating hidden dairy, soy, etc., too!) and hope that I will be able to have a somewhat normal diet sometime in the near future :)!! Also, I think I will call and see if I can reschedule our follow-up appt. with the GI with a different doctor. This hadn't occurred to me, but is a very good idea!... Also, one last thing, I had the pharmacy had flavor to the Prilosec. Do you think this will affect the effectiveness of the med??? Thanks!
Jun 04, 2009
slimfast13
This is our dd, Alessandra. Dx with GER 10/07. Ran the gamut with meds and now done with them (crossed fingers). Using magnesium, probiotics and prebiotic supplements. With the exception of teething and general sassy attitude, all is well now. They really CAN grow out of it!
The flavoring has no impact on the function of the medication, but if there are allergy concerns, I'd talk to the pharm to see what the ingredients are. Good luck!
Jun 04, 2009
mommy2k
My son is currently on prilosec and it's flavored as well. I'm not sure that the flavoring will make a difference on the effectiveness. I too bf and am df. I know first hand how hard it is to do the strict diet and to bf a refluxer. My son is almost 6 months and has a milk protein intolerance. We tried to get him to take the hypoallergenic formula and he wouldn't take it. I have to take one day at time and sometimes hour by hour. Just hang in there. Give the prilosec time to kick in. My gi said about 2 weeks to take the full effect which sucks when you think about it. We had a very rough few days and they're getting a little bit better everyday. Good luck!
Jun 05, 2009
mommy2d&h
Luckily, I checked with the pharmacist, and the flavoring doesn't contain any of our potential allergens!! Today is the second day for the Prilosec, and I know I need to give it time, but my son has been SOOO fussy yesterday and this morning! Mommy2k, it sounds like we are going through so much of the same thing right now! Sometimes when I read your posts, I feel like I am reading my own!! I know you said you had a rough few days and things are getting better - was that related to starting the Prilosec? Just wondering!
Jun 05, 2009
mommy2k
Kody was on zantac which was doing nothing for him and erythromycin for motility. The erythromycin had mp in it so needless to say that was a bad thing. I had to convince the gi to give him a ppi so they finally prescribed it. However, Kody was just miserable by then with his reflux. So since prilosec can take up to 2 weeks to kick in it was really rough for a few days. Prilosec I think is starting to work a little. He's a little more comfortable right now. Just hang in there. I remember Kody at that age and it was harder then now. He also got rotovirus at that age and that was horrible for everything. Just keep reminding yourself that this too shall pass. I hope that the prilosec starts kicking in for him soon. I know that we are able to use mylanta for our little guy for the breakthrough pain and it helps him. Our gi only wants us to use it for a week though and then stop. Well gotta go! My lo is up, just yell at anytime. I know that I've been on here a lot just at my wits end.
Check with your
doctor first!