MSPI, FA and TED moms (again) long...

[Jacksmommy2b]

I am seriously at the end of my rope and don't know what to do :(

*My DD is 9 weers on the nose and has been suffering from a nasty case of MSPI for 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 (supposed to be) dairy and 'protien' free. Being new to the reality of the TED I stupidly ate 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.

Mixed in with these reactions were good days with no 'colic' and no blood.

*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 and stopwhen 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.

*Two days ago 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?*If it was just residual dairy, why would the bleeding be getting worse?


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.

Today is day two and after a clear Tuesday and Wednesday she had blood in her last three diapers tonight.

I am just broken hearted and don't know what to do. Could it be the chips? I am eating UTZ *that have potatoes, salt and cottonseed oil as the ingredients? Could it be the sparkling water, or the Canola or olive oil I am cooking with? That plus pears, sweet and white potatoes and avocado is literally all I eat.

I just don't know anymore. Part of me has this fantasy of giving her a bottle and going to get pizza :). I have nothing against formula for whatever reason but given how sensitive her little body seems to be I really have to wonder if formula will be the answer or just make it worse. Plus I am sort of surprised by how much nursing means to me. The thought of weaning hurts so much more than I expected. Obviously her health comes first, but is formula a chance I want to take?

Any advice?


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[KpbS]

I sent you a PM. :hug:

[SummerBaby]

I'm really sorry for what you're going through. My DD2 had similar issues- mostly with milk protein but other foods as well. I was down to eating mostly bread and water. One problem I ended up with was that my supply became very low from the restricted diet. It was a nightmare for me. I finally weaned at 8 months. But I had to use Neocate formula. I'm surprised your doc suggested Alimentum as it still contains milk protein. It sounds like your DD is very severe- I would not try a milk based formula.

I know you feel bad, but at least in my case my DD was a new baby on Neocate. She never vomited again and the crying stopped. I actually ended up feeling bad I waited, even though I really missed the nursing relationship. Good luck. I hope you find an answer.

[MSWR0319]

I don't have an answer but wanted to give you :grouphug:. DS is 6 months and we've struggled with MSPI as well. Our GI was great and didn't even mention switching to formula unless I wanted. He had me meet with their nutritionist and she said they usually start with eliminating milk/soy and then work backwards because it's easier on the mother and they can usually get issues taken care of that way and it's easier on the mother. They didn't like to keep people on TED long. I had already been off dairy, except trace amounts . It took two weeks of the diet to see the diapers change to yellow. They were still pretty mucousy but he said he wasn't worried. I had a suspicion milk wasn't our blood issue and had guessed egg. So I kept a food long and found the following. The day I eat egg, he gets fussy towards the end of the day. The next day there is eczema and fussiness, which continues until day 4 when the blood shows up. So for us, DS does have MSPI but also. Ore than likely an egg allergy. It's pretty sensitive as I ate something by accident that had the finest amount of egg and couldn't figure out what was going on for four days. Then I saw blood and panicked that there was something new that was bothering him. Until I remember the one package DH had thrown away and forgot to check. Then last weekend I ate at Subway, used their allergy list to find something safe. The next day we went back to nasty green diapers, lasted 4 days. There had to be something in what I ate, even though it wasn't listed. I'm starting to get really frustrated with this diet, as I'm struggling with something to eat that keeps me full. I am off milk,soy,eggs,nuts, and peanuts. DS1 has a nut allergy so that is for precautions from our allergist. I'm not sure I'm going to last more than a few months. DS may need formula. I struggle with the thought but I have to keep me healthy and I'm grumpy and hungry all the time. Not to mention losing weight and I'm thin as it is. I just wanted to share our experiences with you and help you know you aren't alone. Its so hard to know what to do. I also wanted to let you know that it doesn't always mean they are reacting immediately, could be a delayed reaction like ours maybe? I just hope you find the answer you're looking for. If you think you have oversupply, that could also be making things worse. I had one early on and it was causing some but not all of the problems we were having. Don't be afraid to try formula but don't let them force you into it if that's not what you want.

[MSWR0319]

I'm really sorry for what you're going through. My DD2 had similar issues- mostly with milk protein but other foods as well. I was down to eating mostly bread and water. One problem I ended up with was that my supply became very low from the restricted diet. It was a nightmare for me. I finally weaned at 8 months. But I had to use Neocate formula. I'm surprised your doc suggested Alimentum as it still contains milk protein. It sounds like your DD is very severe- I would not try a milk based formula.

I know you feel bad, but at least in my case my DD was a new baby on Neocate. She never vomited again and the crying stopped. I actually ended up feeling bad I waited, even though I really missed the nursing relationship. Good luck. I hope you find an answer.

How hard was the transition to Neocate? That's also what we were told to switch to if we decided to go to formula.

[Melaine]

Haven't read the responses, so sorry if I am repeating. I only have a minute but will try to come back to this thread.

First question, has DD been on any antibiotics?

Second, I DO think he is full of baloney about at least a couple things: the probiotics for sure, and the disbelief that she is reacting to other things besides M&S. We *know* many babies do react to other things so that is a red flag IMO. I got the same thing from my ped. too.

One more thing before I forget, I also was worried about Soybean oil, and *some* veg oil has soybean (or secretly may contain soybean) so I would drop the canola oil if possible (coconut oil should be ok).

I am so sorry you are dealing with this it is SO stressful and you feel like people are telling you 1000 million different things so if you are like me you try everything at the same time and wind up confused, starving and emotionally traumatized.

Here is what helped us. Full disclosure, I am still not certain what DS issue TRULY is. My natural doctor (some would say crazy, does NAET) thinks that he may not technically have MSPI, but may just be still recovering from having taken 3 antibiotics in the first 4 months of life.

I never did full on TED but have been off dairy & soy for months and months. Nat. health dr. said grains were also an issue and I highly suspected eggs for DS so I am now dairy, soy, grain (oats, wheat, rice, corn etc. ), egg free. Plus, we are doing triple probiotics: I am taking one, He is taking BioGaia orally and I am giving him one rectally (break open pill, dissolve in small amount of water, use a syringe lubed w vaseline). I have been doing the 3 probiotics for 3-4 weeks and after about 10 days saw a BIG difference. With all the things I have done, this has finally made a difference. No more visible blood, no more green stools, now he is going like 1 time a day (rather than 8 or more). I haven't taken a diaper to be tested lately but I may next week b4 Thanksgiving.

[Melaine]

I should say he has also been much happier, and by the way that dr. is a total jackass to discourage you from giving her meds for acid reflux as a "bandaid". A mama who has already done so much work with her diet is NOT seeking a bandaid!!!! That makes me furious!!!

[Katigre]

I wonder if its the olive oil...google and you'll find that its really unreliable quality wise and often mixed with other oils. Incl soy.

Fwiw, ds1 reacted to soybean oil as well as other soy.

Sent from Katigre's Galaxy S3

[Simon]

I call bullsh!t on the Dr. There are children whose bodies will react badly to almost everything out there. They are on elemental formulas. I strongly suggest you get thee to the Kids with Food Allergies web site and join so you can see the forums.

Those are parents whose kids have allergies or intolerance to *TONS* of foods. The lists in the sigs are very long. They have the kinds of kids who are reacting to lists of things like yours, so they will probably have the best BTDT for you. Best of all, they will believe you and not give you cr^p advice about no reflux meds. Seriously, WTF!

There is an entire forum for women breastfeeding infants with food allergies and one for kids who can eat few or no foods due to a variety of things like " multiple food allergies, eosinophilic disorders, FPIES, Hyper IgE"

Personally, I would push HARD to try one of the even more specialized elemental formulas before just Alimentum. From what you describe, it goes beyond what Alimentum alone will fix.

ETA: Which is not to say that I advocate giving up breastfeeding, I'd go looking for more answers first, but that if you're going to trial formula, I'd go for something that is more likely to be safe for your Dd than Al. FWIW, Ds3 has MSPI and tests positive for a soy allergy but not milk, so that one is just an intolerance. And it looks completely different from what you are describing. I know there are degrees of difficulty, but I think what you are facing really does go waaay beyond MSPI.

[MamaMolly]

Oh mama! I couldn't read and not offer a hug. :grouphug:

Lula had multiple FA (now down to one food, multiple environment, I'll take it though!!) and was a reflux baby on Axid for 2 years. I didn't know Zantac could be formulated flavor-free at a specialty pharmacy until we'd stopped the meds, and she couldn't take the super minty flavoring. Looking back I can see how so many of her problems and illness early on were related to my diet. **** I commend you on the hard work you are putting in for your child!!!***

Have you been over to www.kidswithfoodallergies.org? They really helped me a lot. There are so many families in your situation, you are NOT alone, they can help you walk the walk and lift you up in the process.

Best wishes going forward, I wish I had been as proactive as you are!!

[SummerBaby]

Hi- just saw your question re: Neocate transition. My DD was used to a bottle because I pumped when I went back to work a month before I switched. So that helped. For the first day or so I mixed the Neocate with BM. She was fine with it- she's never been a picky eater. :) This was five years ago and I've heard they made it taste/smell better so hopefully your DD would be ok with it too. There is another elemental formula out there that we sampled- Elecare- that was awful. She wouldn't go near that one. I would stick with Neocate.

I'm not sure what state you are in, but in my state insurance is required to pay for elemental formulas if there is an MSPI diagnosis. I paid $30 for a month supply. I would ask your insurer about it if you decide to try it.

On a positive note- my DD, now 5, has NO food allergies, despite being MSPI for her first 2 years. There is light at the end of the tunnel! Good luck- I hope you find relief soon!