keep breastfeeding?

When the stinky gas is gone completely the offender is out of his & your system… even if the diapers are still a mess (it takes longer- sometimes MUCH longer – for the colon/intestine to heal after the offender is out of his system). Honestly, this is SO important to know/realize as it’s the indication that you’re getting somewhere.
>
>
>
> Once your start solids it’s somewhat harder to tell if baby is reacting to something in YOUR diet, as there isn’t usually stinky gas anymore & oftentimes the stool is harder or stinkier due to the solids. This is where a sleep log is crucial (there is more about this further on; see below re: starting solids).

1) EVAN’S STORY:
>
> Our journey started w/ Evan @ 2 weeks old when he was in the ER w/ reflux & extreme mucous (had to be suctioned out) from allergies/intolerances.
>
>
>
> I started TED when he was 5 weeks old. I did traditional TED http://www.askdrsears.com/html/4/t041200.asp <http://www.askdrsears.com/html/4/t041200.asp&#62; for 3 wks before tweaking (the tweaking is given in detail, below, see #__). There was great improvement initially, but then the mucous seemed to be getting worse & the only thing I could think was that I was eating SO much rice & turkey that perhaps they were the cause.
>
>
>
> Anyway, initially I just cut out rice for 3-4 days. There was some improvement but not enough that I was convinced. That’s when it occurred to me that perhaps turkey was the culprit. At that point I cut out turkey but added back in rice. Again, there was some improvement but not complete yet.
>
>
>
> At this point our Ped GI scheduled Evan for a colonoscopy b/c I had been on TED for 4+ wks & he still had green, mucousy & bloody stools every.single.time (based on our home hemoccult testing).
>
>
>
> In the meantime, I was getting fed up w/ the diapers. A few days before the colonoscopy (5 wks into the TED) I decided to cut out sweet potatoes, rice & turkey all at once. So I was only eating white potatoes, pears, squash/zucchini, sea salt & pepper. FINALLY, his diapers were “normal” & stinky gas went away. They were yellow, no mucous, no blood & sweet smelling!!!
>
>
>
> Colonoscopy + biopsies showed allergic colitis (as expected) & endoscopy showed no irritation.
>
>
>
> I stayed w/ that “baseline” of potatoes, pears, squash/zucchini, sea salt & pepper for about 2-3 wks – it was HARD. I tried to add turkey back in – failed. Pork? failed. Finally, I tried beef & it passed -so thank goodness I finally was able to add in a protein.
>
>
>
> I stayed on this baseline of potatoes, pears, squash/zucchini, beef, olive oil, sea salt & pepper VERY strictly until Evan was 7 mths old.
>
> Around 8 mths old I was able to add in most fruits, veggies & chicken.
>
> Around 9 mths old I was able to eat everything but milk & soy (including hidden of both).
>
> He is currently 11 mths old & I’m still milk & soy free. His diet is still very limited but we are working on adding in more things (his body doesn’t tolerate too many things directly).
>
>
>
> The thing that used to help me through was setting goals, plans, etc. Example: keep eating x, y, z for 1 week (all the while charting all the symptoms, diapers, gas, etc) then if no change, adding/taking away XX. I’m a writer/documenter so that works/worked for me.
>
>
>
> 8) HEMOCCULTS:
>
> My husband is in medical supply sales so he just ordered the hemoccults for us & we developed @ home. Both our ped & ped GI knew we did this & supported it. It’s super easy. The brand we use is the namebrand that most office’s use.
>
> I did some searching & found a site that has the same brand we use (Hemoccult Sensa by Beckman Coulter) & you can buy them direct from them for around $82 for a pack of 100.
>
> http://www.medexsupply.com/diagnostic-tests-blood-fecal-occult-tests-hemoccult-sensa-singles-x_pid-706.html <http://www.medexsupply.com/diagnostic-tests-blood-fecal-occult-tests-hemoccult-sensa-singles-x_pid-706.html&#62;
>
>
>
> We did the hemoccult tests @ home w/ every single diaper while waiting to get a baseline. We don’t do them very much anymore b/c now that we have a baseline (yellow, no mucous, smell sweet) even when I trial a failed food they DO turn mucousy, but I stop eating it & they don’t ever get to the point of green anymore… I don’t want there to be any intestinal bleeding again (obviously).
>
>
>
> Most drs.will test a diaper in the office + send home w/ only 3 tests to use over 3 days. The problem w/ only using hemoccult tests sporadically like this is that the bleeding in the colon is intermittent (until it’s completely healed that is)… SO, there might be blood in all the diapers one day, then none the next day, then blood in every other diaper the 3rd day, etc. This happened with us – only ONE of our hemoccults that both drs. tested were positive… but then 9 out of 10 of them @ home were positive. I always think if you’re unsure, ordering the strips yourself is a good idea (if you’re able to)- that way you can test all the diapers, develop them & keep a detailed log (ofhemoccult results, mucous, coloring of stool, stinky gas, etc).
>
>
>
>
>
> 7) PEDS (AND PED GI) & TED:
>
> My ped GI (I like him overall) said that I only needed to avoid milk, soy & gluten. If I had listened only to him (& not found infantreflux.org + TED) I would have driven myself CRAZY & honestly probably wouldn’t have known what to do & went to formula. This is why I say (about oh, so many things) you have to have to do your own research, be your child’s advocate, question doctors, etc. Thankfully, my general ped (LOVE him) supports this same way of thinking.
>
> In general, many peds & ped GIs are not super familiar with TED & most think it’s too drastic, not necessary, etc. Just an FYI.
>
>
>
> 13) MEDS:
>
> Evan was on meds early on (marci-kids dose of Prevacid), then was able to be completely off all meds when my milk was ‘clean’.
>
> Then, when we started solids with him we went back on the marci-kids dose of Prevacid b/c his night wakings increased but his diapers were normal. Once started back on a PPI his night sleep regulated.
>
> He is currently 11 mths old & still on the Prevacid.
>
>
>
> number here? Further below, you will find: WHAT I ate, as well as information about ENZYMES & PROBIOTICS, STARTING SOLIDS and SLEEP. Right now I will tell you about what also helped me, that you can start NOW:
>
>
>
> 14) BABYWEARING:
>
> When Evan was literally screaming all day long I started wearing him in the moby wrap.
>
> http://www.mobywrap.com/ <http://www.mobywrap.com/&#62;
>
> It was a savior for us. I wore him for 8-10 hrs/day until his stools started regulating (b/c he was not happy otherwise & it was so challenging w/ the toddler too). I just wanted to mention that b/c you can get so much done while wearing baby & also it will keep baby calm even when he doesn’t feel well @ all. Also, don’t stress about sleeping w/ your baby (or wherever baby is sleeping) – if he likes it & it works, go w/ it -it will not become a bad habit. maybe add in ‘my’ link to babywearing? the ‘babywearing condensed’ link?
>
>
>
> 3) TED CONVENIENCE FOODS:
>
> I can give lots of ideas of what I ate/eat. If you’re just starting to look into TED then be sure to check out Dianne’s stickied post on TED as well as Dr. Sear’s website http://www.askdrsears.com/html/4/t041200.asp <http://www.askdrsears.com/html/4/t041200.asp&#62; .
>
> General info (from Dianne):
>
> https://www.infantreflux.org/forum/forum_posts.asp?TID=7497 <https://www.infantreflux.org/forum/forum_posts.asp?TID=7497&#62;
>
> Food ideas (from Dianne):
>
> https://www.infantreflux.org/forum/forum_posts.asp?TID=7498 <https://www.infantreflux.org/forum/forum_posts.asp?TID=7498&#62;
>
>
>
> I do a lot of convenience type stuff. At 1st I was doing everything by hand & fresh but it was so time consuming. You still have to cook some of this but it’s just put it on the stove to simmer (covered) for 10min, flip & cook for 6min more -done!
>
>
>
> For the potatoes I ate lots of the Lays Kettle Cooked chips. Also, the Or
e Ida hash browns/diced potatoes (frozen) are easy & have TED friendly ingredients. SOOOOO much easier than dicing potatoes up like I did for the 1st 2 mths. Also, Simply Potatoes have hash browns, potato slices & red potato wedges that are super easy & TED friendly. These are in the fridge section by the eggs usually. Also, fwiw – Wendy’s french fries are TED friendly & the only fries that Evan can tolerate – I eat a LOT of them. I also made my own fries but again, so time consuming.
>
> (Just wanted to add that the Wendy’s fries work for US <probably not everyone though>… they do have soy oil in them, but soy oil doesn’t contain soy protein. Even soy allergic ppl can tolerate soy oil in most cases. At his most sensitive Evan was tolerating these.)
>
>
>
> For pears I ate lots of Del Monte canned slices. Again, it’s the convenience since I have a toddler as well. I do fresh as well, but takes more time. I drink a lot of Gerber pear juice. Also the Looza pear nectar… but it has a lot of sugar in it & is a bit too sweet to drink as a “juice”. Sometimes I’ll have pear cups or pureed baby food pears.
>
>
>
> For squash & zucchini I usually just have fresh but I’ve started buying frozen to use when I’m in a hurry & want to have it for lunch.
>
>
>
> So, that’s the things I ate (besides beef). I’ll share what I usually ate before I cut out the sweet potatoes, rice & turkey.
>
>
>
> For sweet potatoes I usually ate a fresh one but I microwaved it in the Ziploc brand steam bags. SOOOOO easy!!! Just put it in the bag & microwave for 10min. I’ve made sweet pot fries, chips & wedges… all yummy but very time consuming. I’ve also bought Ore Ida Steam ‘N Mash… you just heat & then mash them up for mashed sweet potatoes – again, TED friendly.
>
>
>
> For rice I ate a lot of the Ewehorn rice cereal w/ rice milk. Brown rice too. I had some rice pasta but wasn’t a super fan of it. I made rice pudding a couple times & it was a good change… same w/ the rice grits. I made TED sugar cookies (w/ rice flour) & TED rice krispy treats (w/ brown rice syrup) but both were not super appealing ;).
>
>
>
> For turkey I usually ate ground turkey, turkey burgers, turkey cutlets or a cooked turkey breast.
>
>
>
> What I usually did was make a dinner of either ground turkey, rice & veggies OR diced potatoes, turkey cutlets & veggies then make enough for 2 dinners & 3 lunches.
>
>
>
> The biggest piece of advice I can give you re: feeling starving & like you can’t eat anything is to have ‘snacks’ on hand & also to plan your meals as much as possible – that way you don’t ever starve yourself (b/c your supply will suffer if you’re not careful) & you’re not tempted to cheat b/c you’re so hungry.
>
>
>
>
>
> 4) ADDING FOODS BACK IN:
>
> When we did/do food challenges the stinky gas + stool changes come together basically. The stinky gas is gone within a day or 2, but the mucous stays a bit longer (3-4 days).
>
>
>
> I knew it was a “no” almost immediately based on fussiness & comfort. Then, a bit later (4-5 hours) the stinky gas began. Then, the diapers turned to mucous. Then, to green sometimes. Usually w/ the challenges the instant I smelled stinky gas I stopped eating the food. Once he was completely healed (& we had reached a ‘baseline’) the failed challenge wouldn’t cause any blood. Of course, if I continued eating the offender it would have but I never ate TOO much of the challenge in the beginning.
>
>
>
>
>
> 5) TED-SAFE MULTIVITAMIN & CALCIUM SUPPLEMENT:
>
> Here’s the vitamins & calcium I take:
>
>
>
> The multivitamin is this: http://wholesalesupplementstore.com/daily-total-oneaday.html <http://wholesalesupplementstore.com/daily-total-oneaday.html&#62;
>
> They are vegetarian capsules & free of the ‘biggies’ (milk, soy, gluten, etc). I haven’t had any issues w/ them.
>
>
>
> The calcium I take is just the generic “calciumcitrate+” from my grocery store (or Target). The only thing about these is that one of the inactive ingredients is starch. SO, I didn’t start these until recently when Evan started tolerating more foods (although I’m sure many babies could tolerate them fine).
>
>
>
> Here’s a suggestion for TED safe calcium supplement that a good friend suggested to me (& I think Dianne also took this):
>
> http://www.country-life.com/moreinfo.cfm?Category=25&Product_ID=393&CFID=1794275&CFTOKEN=43446469 <http://www.country-life.com/moreinfo.cfm?Category=25&Product_ID=393&CFID=1794275&CFTOKEN=43446469&#62;
>
>
>
>
>
> 6) MILK SUPPLY & TED:
>
>
>
> To MAINTAIN QUANTITY of milk supply:
>
> -Do no lose more than 1/2-1 lb/wk
>
> -Eat at LEAST 1500 calories/day (1800-2200 is best- 1500 is the minimum)
>
> -Drink at least 64 oz of fluid/day & add 8 oz of extra fluid for every caffeine drink you have (coffee, soda, etc)
>
>
>
> To INCREASE QUANTITY of milk supply:
>
> -Of course, letting baby nurse more often is the best (but I know, not always possible)
>
> -Pumping 5-10 min. after every nursing session is 2nd best (again, not always possible)
>
> -Fenugreek 3-4 pills 3x/day (this will make you smell like maple syrup but that’s normal…well, normal for someone taking Fenugreek)
>
> -Blessed Thistle 3 pills 3x/day
>
> -Oatmeal (the traditional kind or oatmeal bars, cookies, etc)
>
> -Beer…the darker the better – Guinness is the best
>
> -Mother’s Milk Tea
>
>
>
> To MAINTAIN &/OR INCREASE QUALITY of milk supply (ie: make it higher in fat, etc):
>
> -Eat at least 30 g of fat/day (easy sources: avocado & olive oil… I use olive oil for EVERYTHING)
>
> –>The fat in your diet is a huge indicator of the good fat in your breastmilk
>
> -Eat at least 30 g of protein/day
>
>
>
>
>
> 9) DIGESTIVE ENZYMES:
>
> Here are the digestive enzymes. I take 2-3 with each meal & snack (to try & break down the proteins that I eat so they enter my breastmilk broken down). I also mix 1/2 capsule w/ each pureed “meal” Evan gets (2x/day). http://wholesalesupplementstore.com/complete-gest.html
>
> I can’t say for sure if they do anything when I take them, but they DEFINITELY help Evan w/ solids.
>
>
>
> Anyway, I give Evan 1/2 a capsule mixed in w/ pureed foods w/ each meal. The key is to mix it w/ a small amount so you KNOW he eats the food that the enzyme is mixed in (if that makes sense). Also, if you heat you have to mix enzyme after heating. The key is to give the enzyme @ the beginning of the meal (really, you’re supposed to give 20-30min before eating to be most effective but since it tastes AWFUL by itself this doesn’t ever happen… I take it pre-meal though for myself).
>
>
>
> Now that Evan is eating more & more finger foods (very limited diet of 6 or so foods but have been able to find quite a few finger food options) I usually just put a bit of pureed apples in a little cup & mix the enzyme in that to make sure he’s getting it.
>
>
>
> Here is a link that has other options as well… mixing w/ applejuice, etc. I don’t do that since apple juice can flare reflux but it’s something to keep in mind for the future.
>
> http://www.enzymestuff.com/discussionmixing.htm <http://www.enzymestuff.com/discussionmixing.htm&#62;
>
>
>
> I have read that giving the enzyme before a bottle is beneficial as well (but not IN the bot
tle). Again, the problem w/ this is getting it in him. I tried to just mix it w/ water once & syringe it in (like I do the probiotic) but OMG- I got a bit on my finger & tasted it & it’s awful. You could give him a few spoonfuls of the enzyme on purees though, THEN the bottle.
>
>
>
> 10) PROBIOTIC:
>
> Here is the hypoallergenic probiotic I give Evan. It’s called “Klaire Labs Ther-biotic Infant Formula”. I buy from http://www.theapexstore.com <http://www.theapexstore.com/&#62; or I call Klaire labs directly. You have to have a physician authorization now for some reason (which is silly in my opinion) but you can also phone Klaire labs directly. There is a physician who has written a couple books by the name of Dr. Jacqueline McCandless who was actually the doctor that worked together with Klaire labs to develop their probiotics. She has said in her books that people can use her as their reference physician to acquire Klaire products without having seen her directly as a doctor. This is what I do, and then Klaire also gives a discount to anyone using Dr. McCandless’s name. You can call them toll-free at 1-888-488-2488.
>
> So basically, just call the phone # & mention the dr’s name as your reference. If you’re not comfortable doing this then either have your ped or ped GI authorize it OR there is another brand of hypoallergenic probiotic that is popular.
>
> The other brand is: http://www.kirkmanlabs.com/ViewProductDetails@Product_ID@186@[email protected].
>
>
>
> 11) STARTING SOLIDS:
>
> Once we decided to start solids I used Dr. Sears’ least allergenic foods list to help decide our order of introduction:
>
> http://www.askdrsears.com/html/4/T041800.asp#T041805 <http://www.askdrsears.com/html/4/T041800.asp#T041805&#62;
>
> We started w/ pears. Then, went to squash, apples, carrots, then chicken (b/c he was 9 mths old w/o a protein & borderline anemic). Then, prunes, oatmeal, sweet potatoes, peas & white potatoes. Obviously at least 5 days between each. Not all of those were successes though.
>
>
>
> Also, we use digestive enzyme (see my info above re: enzymes).
>
>
>
> Finally, I keep a detailed log (more detailed than usual) for the intro days. I intro the new food @ lunch of Day 1, then also for dinner. I log his night sleep, nap lengths, diaper consistency & skin reactions for 4-5 days (while giving the new food for lunch & dinner each day). If everything remained consistent/fine for those days then it’s deemed a ‘success’!
>
>
>
> 12) ECZEMA:
>
>
>
> On the flipside, if it was/is a failed trial then usually full-body eczema breaks out. I never would have known to do this but my good friend’s dd suffered from eczema severely. I was using all the usual suspects: Cetaphil, Eucerin, Aveeno, etc & they were just drying out Evan’s skin. He’d be scaly an hour after moisturizing him. Many of them have alcohol as an ingredient-ick!
>
>
>
> Anyway…
>
> We use an olive oil soap for bath. It’s made by Kiss my Face. I ordered it from Amazon but then saw it @ both my regular grocery store & Whole Foods.
>
> Kiss my Face Olive Oil soap <http://www.amazon.com/Kiss-My-Face-Fragrance-8-Ounce/dp/B001E6O8WU/ref=pd_bbs_sr_1?ie=UTF8&s=hpc&qid=1228428366&sr=8-1&#62;
>
>
>
> Then, after bath we just barely pat him dry… then lube him up w/ regular olive oil (like the kind you cook with).
>
>
>
> Then, on top of the olive oil we put VaniCream – this is truly the product that’s saved us! You have to order it but it’s so worth it. It’s the base of most dermatologic products.
>
> VaniCream <http://www.amazon.com/Vanicream-Moisturizing-Skin-Cream-Dispenser/dp/B000BXHDUG/ref=sr_1_1?ie=UTF8&s=hpc&qid=1228428518&sr=1-1&#62;
>
>
>
> Finally, just put diaper & pjs on immediately after to “lock” the moisture in.
>
>
>
>
>
>
>
> 15) SLEEP:
>
> With regards to sleep – it never really got better until he was completely cleared out. Then, it didn’t really get better until almost 5 mths old.
>
> When his diapers are great & regulated his sleep is A-W-E-S-O-M-E.
>
>
>
> I can honestly say that Evan didn’t get sleeping more than 2-3 hr stretches until
>
> a) he got a bit older & outgrew many of his intolerances (not ALL, but a lot)
>
> b) we started back on 30mg Prevacid/day
>
> c) his diapers were regulated
>
> d) he was taking in some purees/solids… I’m definitely NOT suggesting anyone start solids early or before you’re ready, I’m just explaining our progression.
>
> Even now (Evan is 11 mths old), when I try milk (I did last week) Evan is back up many times/night so it’s so clear that the tummy/intestinal issues bother his sleep immensely.
>
> put link to post ‘night wakings/lovemysophia’? – this is where past member posts about milk allergy found later on and sleep was huge indicator…
>
>
>
>
>
>
>

Misconceptions about how Neocate & Elecare work: https://www.infantreflux.org/forum/forum_posts.asp?TID=6013

yes no blood is a good sign- next will go the mucous (SOME mucousy diapers is perfectly normal!) then [posted from erin’s post above] When the stinky gas is gone completely the offender is out of his & your system… even if the diapers are still a mess (it takes longer- sometimes MUCH longer – for the colon/intestine to heal after the offender is out of his system). Honestly, this is SO important to know/realize as it’s the indication that you’re getting somewhere.