November 15, 2012 at 3:27 pm #71201AnonymousInactive
Hi all,I’m a recent lurker, thanks to some fantastic links from HellBennt that brought me here. My DD is 2 months on the nose and has been suffering from a nasty case of MSPI for nearly a month. At that time I noticed a speck of blood in her diaper and went off of major dairy.Within a week her eczema went so crazy it was yellow and oozy, the colic was unending, her reflux went wild and more blood specks were in her diapers. Her Pedi had me cut out all hidden dairy and chocolate and peanuts. He wanted me to hold off on soy but I cut that too. The next two days were just as awful and I realized she was reacting to beef as well.So I said screw it and decided to try TED. I went with rice, turkey, squash. potatoes and pears. The turkey made her spit up and added specks of blood to her diaper so two days later I switched to lamb. The lamb really skeeved me out so I tried chicken. Chicken didn’t seem to work either (same results) so the pedi told me to try fish. In a moment of pure stupidity I ate scallops instead of fish – fish, and she had a really terrible reaction. More reflux, more screaming, more blood.Then I ate fries that were acceptable, but they were fried in soybean oil. I read soybean oil was supposed to be okay, but I think it really hurt her too. Two days later I ate puffed rice made by a friend. As strict Hindus they eat this snack when fasting as it is dairy and ‘protien’ free. Being new to the reality of the TED I stupidlyate something I didn’t make myself and again she had the reflux, screaming and blood. Then she seemed to react to either rice chex or summer squash. God, at this point I can’t even tell anymore.This past week her diapers have been the worst yet. 🙁 She has gone from specks of blood to streaks and blobs.It seems like 24hrs after I eat something the reflux starts and the blood follows 12-24 hours later. We don’t have stinky gas andwhen I can finally get her to sleep she sleeps like a champ, she is just reflux, screaming and bleeding.I *think* what it comes down to is that I have been a really bad TED’er. I should have given up on meats when she had a bad reaction to the turkey and left it at that until I baselined. I just kept thinking if I could find a meat that worked I would have no problem sticking to the TED and not adding anything for a good few months until I knew she was ‘healed’ enough to handle variety again. The fries were an honest mistake – everything I read said that soybean oil shouldn’t be a problem. The rice snack was just stupidity.Today I met with the Pedi GI. He is part of a practice at CHOP rated as the very best in the US.The very first thing out of his mouth? Pump for two weeks and put her on Allimentum. 🙁He seems to think it is just Milk and Soy and that my list of things that bother her (dairy, beef, shellfish, peanuts, chicken, turkey and possibly soy) is unreasonable and ‘there is no way she is intolerant to all of those things.’ I was also told that there is no way I can continue on a TED without sacrificing my own health and (My personal favorite) I have ‘already given her all the benefits breastmilk has to offer so there is no problem switching to formula now. He believes she is still (17 days later) still reacting with new intensity to dairy left in my milk. He also mentioned having to try multiple formulas to figure out what works for her. Isn’t that exactly what I am doing with TED? How is formula the better choice?He also said no probiotics or enzymes as there is no proof they are effective.I asked for a script for zantac for her reflux and got a speech about ‘bandaids’ and how I can’t give her zantac and eat what I want as it won’t cure the MSPI. After explaining I just didn’t want her to suffer as we tried to work with the MSPI and I had no intention of eating dairy – he wrote the rx.I managed to convince him to ‘let’ me go for another 10 days on TED to try to get the bleeding to stop. To that effect I am down to the things I know don’t bother her: Potatoes (white and sweet), Avocado and pears. (I also splurge on Pelligrino with dinner)I know I can’t do just potatoes, pears and avocados for long, but I figured if I can make it a week and show signifigant progress I can try either rice or squash again and go from there. If there isn’t any progress at least I know I tried everything I could and move forward with formula with no regrets.I get that he is the Dr and all, but based on what I have read here and elsewhere (and especially Erin’s links) I think he is sort of full of baloney. The allimentum won’t be the cure all he is making it out to be and I will have sacrificed my breastfeeding relationship for nothing. I know he wants a two week formula trial – but I know that with two other kids and FF the baby I won’t be able to pump nearly enough to keep my supply where it needs to be.I also asked him about oversupply potentially being a part of the problem. My second son was on block feeding per the LC for suspicion of oversupply. I have tried block feeding in the interim just in case as the GI admtted he knew nothing about it.So what should I do? Is it reasonable to go for a super TED for a week to see what it can do? Am I being selfish for letting her go another week like this to try and salvage breastfeeding? Am I right that Allimentum is not the fantastic cure he is making it out to be? Am I completely out of my mind here?November 15, 2012 at 4:40 pm #71202AnonymousInactive
First of all… that pediatrician makes my stomach tighten up and goose bumps come on my arms! Seriously!!
Second of all… NO you are NOT out of your mind!!! Just confused! You are being an AWESOME mom that is wanting to be her own advocate for her child! Too many moms just blindly follow the doctors advice because they don’t know what else to do. But I guess in reality… the doctor is trying his best to tell you what knowledge he has.
Just remind yourself that the doctor doesn’t know everything. He is telling you what he was taught in medical school. If a doctor goes out on his own and starts learning things then by law is probably prohibited you from telling it to you anyway. So why not stick with medical school teaching.
So, you as a mom can listen to what the doctor has to say but when you leave the room, you can respectfully do what YOU want to do!
I want to sit down when I have some time (hopefully tonight) and write out my thoughts and ideas for you but right now I am supposed to be getting ready for our evening plans.
More later…November 16, 2012 at 11:48 am #71203AnonymousInactive
OK… so my ideas for you as the mom! I do not have all the answers, nor do I have the miracle-cure-all to tell you about, but I CAN tell you what worked for me and my children. 🙂 I have my story written in detail on my blog (see signature) but I will give you a condensed version here.
For the first 12 weeks of my oldest son’s life, he screamed for hours in pain and had blood in his stools, while we changed meds, formula, and diet and did numerous tests. There were times I wish he could admitted to the hospital because I was so afraid at home with him. He would gag and choke and barfed every where all the time. He has severe diarrhea all day long! He was labeled Failure to Thrive because he wasn’t growing properly.
I was extremely frustrated with my pediatrician. But at 12 weeks I called a MOM!!!! And SHE gave me answers!!! My ped had mentioned a milk allergy but had never mentioned the term MSPI! This mom told me all about MSPI and sent me info about it. I was so frustrated and out of sleep that I quit nursing cold turkey that day and gave my boy only Nutramigen. It made a huge difference! But knowing what I know now, I know that it would’ve been MUCH better for me to drastically change my diet, take probioitcs and enzymes, and continue nursing. But as an old saying goes… “We get to soon old and too late smart”. 🙂
So with second child, Jackson… it was pretty close to a rerun of the first of child. I did know a little more but he was just as bad if not worse than Quinton. I nursed Jackson for 8 weeks then went to Nuutramigen. He was on Prevacid before he was a week old.
When Quinton was a year old and I asked the dr what he should drink he suggested soy milk. I was SO upset! Earlier I had given him a bunch of info on MSPI and obviously he never read it. At that point I decided that “I was on my own in life”.
When Quinton was close to 3 and Jackson was close to 1, they were both on Prevacid, avoiding dairy and soy, Quinton drank only water and Jackson drank Nutramigen. At this point someone suggested I try giving my boys Kangen water to drink and even though I didn’t think it would help, I was willing to try. Well, I was REALLY amazed at how it DID help. The alkalinity of the water counteracted their acidity but also the water is an antinflamitory so it helped soothe their inflamed esophagus and intestines. Within several months I had both boys med free! But they still would have flare up with dairy and some other foods. After Jackson turned a year I tried several kinds of milk on him and none worked so soon he was only drinking the Kangen water and so was Quinton. There were many times when they woke up at night in pain that I wracked my brain trying to figure out what caused the pain this time. But I did find that although it was difficult to get a child to take several drinks when they are really sleepy, that if I could get them to take several good swallows of the Kangen water, they would settle down and go back to sleep.
A year later someone suggested I contact a well known nutritionist named Shan Stratton. Again, I felt as if “what could he do or say that could help?” But I was willing to at least call him. So I did! This man’s focus in nutrition is digestion. And within a few minutes of listening to him, I realized that if what he was saying was true…. my children’s life could be changed!
Here is a brief description of what I learned that day… The reason that my children had so many digestive problems is that they had an enzyme and probiotic deficiency. The pancreas is what makes digestive enzymes and puts them in our stomach to break down the food we eat. All foods have enzymes in them but anytime a food is cooked or processed it kills the enzymes. With our diets today of mostly cooked and processed foods it’s hard for our pancreas to be able to produce enough enzymes. Without enough enzymes in the stomach to break down the food the only thing our stomach knows to do is produce more acid to try to break it down. Too much acid in the stomach will cause heart burn, acid reflux, indigestion, irritable bowel syndrome, etc.
If a parent has a pancreas that isn’t producing enough enzymes then it is possible that their children can be born with a pancreas that doesn’t work well either. If the mother will take a supplement of enzymes and probiotics while pregnant she will pass these on to her baby and have a baby with a healthy digestive system.
Probiotics are the good, live bacteria that live in our body. One of the things they do is coat and protect our entire digestive tract (and also the ears and nose). When the stomach produces too much acid then it is forced up the esophagus and down the intestines and will kill probiotics. (Antibiotics also kill probiotics.) When the probiotics are depleted then the acid is traveling right up next to the , throat, esophagus and intestines with no protection. This can cause them to get raw, inflamed, and even bleed sometimes.
Shan is the nutritionist to many professional athletes and so therefor owns and sells his own line of supplements. I right away told him me to send me a bottle of the probioit/enzyme supplement called Digestive Health!
After my boys had taken these pills for 3 days, things started to change. They started to sleep all night long without tossing and turning or waking up in pain. After a couple of months, I started to add dairy back into their diet. Fast forward 2 years… Today both my boys eat ANYTHING! But they still take the Digestive Health pills. We buy the bottles by the case. 🙂 I believe that my children’s pancreases just don’t make very many enzymes. Digestive problems run in both sides my husband’s and my families so I assume it’s inherited. If my boys (for sure Quinton) drink a glass of milk and don’t take a pill it is highly likely that they will toss and turn that night. I think that Quinton will always be more sensitive to foods than Jackson because he struggled longer than Jackson.
Shiloh was born a year ago and has been a been than normal baby! No digestive problems!!!!! I took the Digestive Health while pregnant and nursing and now she takes them directly. I doubt she will ever have food sensitivity like the boys because she has always had a health digestive system.
OK…. I’ve been trying to write this for over an hour now and keep getting interupted so I will sign off now. Hope it all makes sense and feel free to ask me questions if you have them.
I hope that you can SOON find the right answers for your little one like I have for mine!! 🙂November 16, 2012 at 4:57 pm #71205hellbenntKeymaster
hi! it is I, hellbennt
hmm…ok well I’d try to find things to eat. AND me, what I’d do is give meds, too. not as a band-aid, but like you said- to help baby while you the mama get things figured out! I have to say that as desperate as you sound, you may as well go ahead & try probiotics & enzymes! why not?
the rice snack wasn’t stupid, it was rice & rice is part of the TED.
ok, so you have potatoes! there’s a lot you can do with them! focus on what you CAN eat! did you try ground free-range turkey? Not sure what other protein to try…I couldn’t eat tuna (canned or fresh)…beans are legumes, so I would think they’re ‘out…’
how about other grains? quinoa (ancient harvest brand)? millet? they might have protein in them- look at the nutritional info
sunflower seeds? if so you could eat sun butter?
are you taking any vitamins? medications? what’s in your toothpaste? hmm…
you need fat, too. use lots of olive oil to bake,roast, cook your potatoes! there’s avocado oil, too!
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