April 16, 2013 at 12:19 pm #72061AnonymousInactive
I’ve been lurking on the forums for a while but between my high-needs baby and my job I just haven’t been able to introduce myself properly. Here’s the short version before I ask my question:
I am the first-time mother of a 13-month old girl who has had severe reflux and feeding issues from about 5 weeks on. She developed IUGR and weighed 4.11 at birth due to a clotting factor that compromised the placenta, and weight gain has been slow due to a combination of the reflux and a low/non-existent hunger drive, which we are told is commonly associated with the IUGR. We have “flirted” with FTT but each time we approach that line in the sand she has miraculously put on just enough to avoid a formal diagnosis. At 13 months, she now weighs around 14 pounds. She currently takes prevacid, 3mg/ml, 2.5 ml twice a day, milk of magnesia (2.5 ml twice a day) for the constipation that seems to be a side effect of the prevacid, and periactin (.7 ml twice a day for 2-3 weeks, then a 5 day rest, then back on) for appetite enhancement.
Started solids on schedule, but feeding issues and suspected intolerances have limited her diet. Currently she will feed herself rice chex, bread (no dairy, soy, or corn ingredients), bananas, apples, and deli turkey–so no help with the constipation from her diet, and not much fat. She MAY eat homemade meatballs and avocados and (my) steel-cut oatmeal if presented in the right way. She will not drink anything in a cup other than water, so I am still nursing (and desperate to wean!).
The prevacid makes her comfortable enough to eat, but she continues to have dips in her growth curve, in spite of increased (but still inadequate) intake. Next week we find out if the periactin has helped. She is eating more, and feels heavier, but she still seems uncomfortable. Her current behavior around eating and sleeping leads the GI to believe that she is no longer bothered by reflux pain but by gas related to the constipation problem. I know from personal experience that PPIs can cause lower abdominal pain, and I really suspect that this may be a factor, too. I’m very sensitive to medications, and half of her genes are mine. All this to say that there has been a small but persistent voice in the back of my mind for several months now saying, “the medicines are causing more problems than they are solving.” I have wondered what would happen if I just stopped giving her everything and started over, but have been too afraid to take that step, and GI doesn’t advise it anyway.
Now I have been put into contact with a pediatric holistic nutritionist who says that she has helped many children–her own included–heal from reflux and overcome slow weight gain by focusing on feeding foods that heal the gut first and that are nutrient dense. We then slowly introduce new (or old and problematic) foods as the child’s digestive system heals and matures. She says that the food-related symptoms I described to her–crying out suddenly in sleep and restless thrashing but no rash or blood in the stool–are consistent with cases she has seen in which the child is not allergic but is simply not in good enough digestive health to process the food. She also said that these symptoms combined with the slow weight gain are indicators that the prevacid may be interfering with food digestion and nutrient absorption. She said that carbs and proteins need a certain (and different) Ph level in the stomach to be digested properly, and that the PPIs keep the stomach acid level too low to digest grains properly. Instead, they ferment in the gut and lead to excess gas.
I would love to wean my daughter off all the meds and their side effects, and what the nutritionist said makes a certain amount of sense to me. It’s certainly consistent with the timeline of onset of secondary symptoms. And the more bread and cereal she eats, the worse the gas has gotten. It resonates with that nagging voice in my mind about the medicines being the problem. But I’m skeptical of the “holistic” or “alternative” medicine label, and following this lady’s plan would mean eliminating the only foods that my daughter will currently eat voluntarily and replacing them with foods that I don’t know if she will eat or not–she wants to start with fats and eggs, both of which my daughter avoids like the plague. The voice in my mind is competing for attention with a vision of her not eating anything solid for weeks on end, and subsequently losing more weight and the slow progress we’ve made on feeding solids. I don’t know which way to go. Has anyone here tried such an approach or read studies about it? I’m a grad student with a part-time job (where I’m writing this) and a high-needs toddler, so I don’t have time to go searching through many pages of old posts. But if there are any, point me in the right direction and I’ll read them.
Thanks!April 17, 2013 at 12:41 am #72065AnonymousInactive
sorry for the intrusion- just making it easier for *me* to read, lol, byt adding indents
Hi Amy, I’m first of all so sorry to hear about your rough time.
I also had a rough first born, and then again with my second.
My children are both taking Zegerid in fairly high doses, my son is 8 and has a hiatal hernia, which means acid reflux for life pretty much.
My daughter is 4.5 and every time we try to wean her from the zegerid she shows signs of reflux coming back.
Her endoscopy showed a loose esophageal sphincter, and the GI hopes it will tighten up, but it hasn’t seemed to yet.
They are cumulatively intolerant to gluten, oats, dairy, soy, corn and peanuts (each child has a combo of several in the list but not all). We never dealt with FTT or low weight. Both bfed 2 yrs. I have always wondered about taking them off meds and going the homeopathic route, but have been too scared to revisit severe symptoms of reflux and dangers of all that acid in their esophagus, etc. etc.
The first thing I thought when reading your post is that if she’s eating, and just a beginner eater at that, and gaining a bit of weight, could you wait to do this stuff until she’s a bit bigger and you don’t worry if the testing itself will throw her weight down the tubes. Even 6 months can make a huge difference.
I’m not sure how urgently you feel you need to change things. Another idea is to remove the gluten products since gluten is somewhat of a digestive issue for a lot of people and definitely young babies that have immature digestive systems. That would not remove all her foods — but would take out only current thing that’s often a culprit with these sensitive little ones. Is your diet free of all the dairy-soy-corn? I’m assuming yes and it’s difficult for some folks to do gluten free in addition to the other things, but it is definitely worth a try.
My son was helped by meds, helped by dairy and soy removal, but not until we removed gluten from both his and my diet at 18 months old did he begin to sleep and finally feel better. It was the last piece of hte puzzle for us.
Also, your breastmilk is a great source of fat, I’m sure you are aware of that. I encourage you, even if you are discouraged, to keep up that amazing work of nursing her, even though I KNOW it’s so hard. KEeping that in the mix as long as you are willing is the greatest source of fat. I’m not one of those “nurse til she’s in kindergarten” but with a limited diet and gi issues the longer you nurse the better in the long run.
I mixed breastmilk with avacado, which is also a great source of fat and you mentioned she will sometimes eat. I used aloe vera (organic 100% aloe vera liquid form) for my son via syringe when he was teething and that seemed to give some relief as well. Teething for us was a total nightmare with the reflux in full force. I am so interested in reading your words though, because I wonder these things myself and my 4 yr old often complains of a tummy ache, not severe, but often, usually in the morning before she eats.
Zegerid literally saved my children (and my sanity and my marriage!) so I am very reluctant to let it go, but have pondered it many times. Another thought I’m having is that we did probiotics with Lucas when he was that age, it was a powder that I mixed with water or you could do bmilk mixed with it, and I gave it via syringe. They help with all the gi issues. I believe I used Natures Way Infant probiotics. I haven’t bought that Infant one in a long time, but I know Nature’s Way has lots of products out, and often you can find them at Whole Foods, Sprouts, or vitamin stores. You want it to be the refrigerated one. Ok, just a laundry list of suggestions.
Just to give you full disclosure, I didn’t take the advice of hte first person who told me to remove gluten. I thought I would be crazy and also that I would starve to death (and be very unhappy while I starved to death!– oh the drama of not sleeping and a miserable baby!) Anyway, I had no idea HOW to do all that, dairy, soy, corn and gluten free? I thought it sounded like a nightmare. It wasn’t until he was 18 months old, and I was even more miserable than i had been previously, that I was willing to try it as a last ditch thing. It was miraculous. I still am amazed that I got that advice so early on. If nothing else, you could try and then cross it off the list if its clear she’s not got an issue with grains. You can also reintroduce them later after things clear up if you notice clearing up.
I did a post way back on what we ate for different meals, I can’t remember where it is! I’ll try to find it and link it here, or if Laura reads this ( hi LAURA!) she might remember where the dairy-soy-gluten free list is. Maybe under recipes? Ok, hang in there. Seriously, you are amazing for making it this long with all the struggles. Give yourself a pat on the back and forge ahead. Things will get better. hellbennt2013-04-17 07:52:20April 17, 2013 at 12:55 am #72066AnonymousInactive
I found the link!– with food ideas. I can’t believe it, I must have written that 5 or 6 years ago. I have LOTS more ideas and am happy to send them if you decide to try gluten-dairy-soy-corn free.
We even just made homemade icecream (I know the baby can’t have it but you could!) with only 5 ingrediants and it tasted good! And all the ingrediants were things my kiddos could have.
So there is a lot out there to eat. anyway, here you go:
ps. I know its difficult to hear from opposite sides of a spectrum. The GI doc says if you do X, Y, Z it will be bad. The Nutritionist says that the Gi’s meds are causing problems and you should quit them. It’s like no one can agree on anything.
They have completely different systems of addressing problems. The truth may lie somewhere in the middle and that’s where you have to follow what feels right to you, as a mother, and use your intuition. Use your best judgement and you can always stop any one thing at ANY time if you feel it’s not working. Your child will adjust and they are resilient.
I started solids at 7 months with my first, then stopped them at around 8.5 months because I couldn’t tell what was bothering him and it muddied the waters of meds, my food, his food, etc. He was nearly exclusively breastfed until nearly a year old.
Lots of folks wondered if he would be okay starting solids so late….he was fine. the only thing I wouldn’t mess around too much with is nursing, but all the other things (meds included), you can stop, start, take away, reintroduce, etc. etc. Good luck, big hugs to you!
hellbennt 2013-04-17 07:55:39April 17, 2013 at 5:33 pm #72068hellbenntKeymaster
Hi Anne! THanks for posting!
Feel free to post your other ideas, rather than (just) sending them to Amy
I’m sure that they’ll help others, if not today, then someday…
THANK YOU FOR RESPONDING!!
lauraApril 18, 2013 at 12:29 pm #72069AnonymousInactive
Thank you so much for your suggestions and encouragement. After a difficult pregnancy, we were unprepared for a difficult first year, too.
I did cut out gluten for a time while I was exclusively breastfeeding. I was off everything else, so I figured, why not? When I added it back in she didn’t seem to react in anyway. But I suppose she might be reacting to the gluten in the bread she eats. The rice chex and my oatmeal are GF, though, so her only source would be the bread. I have learned to read labels very carefully–the only deli turkey I buy has just turkey, water, and salt in it. I do know that she no longer reacts to milk proteins through my milk, but she doesn’t seem to tolerate the yogurt or cheese that I have managed to get down her. Do you know if there is any easy way to see if it’s the lactose that she can’t handle, as opposed to the milk protein?
As far as urgency goes, my connection to the holistic nutritionist was precipitated by my husband’s sense of urgency to solve Johanna’s sleeping problems. I called a sleep consultant who recommended we get the eating and weight gain in hand first. Thirteen months out, my husband and I are both so sleep deprived that we can barely function at our jobs.
Right now I’m making any decisions until our weight check next week.April 19, 2013 at 12:56 pm #72101AnonymousInactive
I am not against holistic approaches but as with anything, there is not normally a one size fits all. And usually holistic treatments can take some time for sure when you’re looking at healing the gut. But I do believe that it is possible. Here is an article written by about a doctor who believes in healing the gut and has written a book about it called “GAPS”. http://articles.mercola.com/sites/articles/archive/2011/07/31/dr-natasha-campbell-mcbride-on-gaps-nutritional-program.aspx
Here is a blog that talks about healing the gut by doing some of the same things as that doctor recommends. http://nourishingourchildren.wordpress.com/2012/12/26/if-gaps-hasnt-work-for-you-or-yours-read-this/
Has either your regular doctor or holistic doctor recommended using giving your little one probiotics? A supplement of probiotics together with digestive enzymes has helped our children a LOT!!
Here is a story from a mom that was facing having a feeding tube put in her child because of lack of eating and poor weight gain. http://help4acidreflux.wordpress.com/federicas-story/ She also went to a holistic doctor.
Also please read the home page of my blog to learn how probiotics and digestive enzymes are so beneficial. http://help4acidreflux.wordpress.com/
I hope you SOON find something to help!!!April 23, 2013 at 11:22 am #72125AnonymousInactive
Interesting articles–thanks. I suspect GAPS is what the holistic nutritionist wants to try. She mentioned it would probably take 4-6 months to see results. The more I read, the less sure I am if it is the right path for us.
I take a probiotic myself everyday for my own issues, and it definitely helps me. We gave Johanna a probiotic supplement in her bottles many months ago, but it had traces of milk in it and she reacted to it. Now she doesn’t take bottles reliably for the nanny (she’d rather wait until I get home to nurse), and she’s gone off pureed foods, too, so I have no idea how to get into her except by syringe, and we are already giving four other things that way. We even tried the Happy Bellies baby cereal with probiotics, but she reacted to the algae-based DHA that was also in the cereal. I’m open to suggestions! As for enzymes, I tried them myself but the formula I took had a pineapple ingredient in it and it really upset my stomach.
I really wish Johanna had inherited her father’s digestive track instead of mine!April 23, 2013 at 1:45 pm #72128hellbenntKeymaster
reflux what I have learned:https://www.infantreflux.org/forum/forum_posts.asp?TID=2948&a mp;PN=2
Wondertime article, Colic Solved:http://web.archive.org/web/20101226170946/http://wondertime.go.com/learning/article/interview-colic-expert.html
page 2 of the article tells what probiotics help babies
probiotics, brands used:https://www.infantreflux.org/forum/forum_posts.asp?TID=8970&PN=1
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