Update on the Dr's Appt's

For those that wanted to know, here's how both the GI specialist appt. went and his pedi appt went today!

GI Appt
Dr. said that he does not believe it's a foremilk/hindmilk imbalance because that does not cause bloody stools like Alexander has been having. He also said the green poo is because the BM is going through his intestines too fast.

He went through all of my options to take care of the problem:

1. Elimination Diet for 2 Weeks and then reintroduce one food at a time
2. Leave my diet as is
3. Biopsy to confirm the allergy(ies), which would consist of going up A's colon and taking a biopsy (Dr. said he does not recommend this, but had to offer since he's a dr)
4. Start formula

So, I chose choice #1. I figured that maybe I'm accidentally getting some soy or milk and not realize that I am. I figured it's only for two weeks, so I can handle it. And doing this elimination diet will for sure tell me what A is allergic to. Dr. is hopeful that we will get everything back into my diet, including soy. I'm not holding my breath!

He asked if after we go through all of this and A still had some bloody diapers - would I want to switch to formula. He asked this because apparently after about 4 months...it's pretty much impossible to switch to the special formula because it tastes horrible and baby is pretty used to the sweetness/goodness of BM. Dr. said he's very pro-BFing, but just wanted to let me know about that little tidbit of info.

Dr. said that if we go through all of this and A still has a bloody diap once in a while - it's nothing to be too concerned about since A is gaining well and overall a "happy" baby. He said the bloody diapers are more traumatic for the parents than the child...so that made me feel better.

So I met with a dietician and she was SO helpful. She gave me a great list of other names for all of the following ingredients: Dairy, Soy, Eggs, Wheat, Fish, Peanuts, Tree Nuts. Here's a link to that list: http://www.foodallergy.org/downloads/HTRLsheet.pdf It was very helpful in the natural foods store tonight! Who knew there were other names for eggs!

So I have to call back after this two weeks and check-in with him. Then I get to reintroduce one of the food groups (not sure which one yet) and see him in a month for a follow-up.

I'm crossing my fingers that this is it and it takes care of everything.

Pedi Appt
Saw the pedi today for a weight check. A is up to 9lb 6oz!!! He'll be 7 weeks tomorrow and was born at 6lb 12oz...so he's gaining great! At least through all of this...I know that A is getting enough nutrition to grow! That's one thing I can feel good about!

Pedi said I could use cortison cream for A's cradle cap. It's not very bad, so I think I'll stick with the baby oil. But thought I'd post that info if any of you ladies had issues with that.

That's it for the updates. I will for sure be posting my takes on the foods that I bought tonight. And all of them will be good for you ladies since I'm not able to eat any of the 8 top food allergies right now.

Right now I ate the following, and it was perfect for a chocolate fix!

Nana's
No Gluten Chocolate Crunch Cookies (contains no egegs, no dairy, no gluten (wheat))

Post any brands that are safe!

Please list any foods that you know for sure are on the safe list to eat. Please list if they are wheat, dairy, soy, etc. free and any recipes you may want to share.

We went to the GI Specialist today and they said they do believe it's an allergy. I am on a very limited diet for the next two weeks (no milk, soy, wheat, peanuts, eggs, shellfish, or tree-nuts). Saw a dietician and she suggested the following brand of food:

http://www.enjoylifefoods.com/

Hope this helps some of you. Wish me luck for the next two weeks!

Also-I will post more about the appt. and what he said...don't have time now - - we're off to a pedi appt. now!

Weekend Update

How was your weekend with LO? Are symptoms getting any better? Did you discover any new foods that you can eat? Please share!

Our weekend was stressful. My husband wanted me to start pumping and feeding EBM bottles until we got another bloody diaper....and I was about to do so until I asked the ladies on the Bump for advice. They basically said that all the bottles are doing (since we've had some luck with giving him 2 bottles in a row and then having awesome diapers) is that there's a better mixture of foremilk/hindmilk. So they suggested that I block nurse for 2 days and see if that helps. So, that's what I am currently doing.

But...it's up and down right now with it. We had some yellow diapers, but there was blood in them. So that's heartbreaking. Then last night we were back to green, no blood. Go figure!

I'm just glad that we see the GI pediatrician tomorrow and hopefully he can give me some answers. All in all...it's been 3 weeks now and there's no significant improvement with my DS. That just doesn't seem right.

I have discovered Jasmine Rice...I know, I know...doesn't seem like a huge thing - - but when you've been living off of plain white rice flavored with some pepper...anything with a bit of flavor is nice! Right now I have a stew in the crock pot for tonight's dinner: beef stew meat, red skin potatoes, onion, baby carrots, sun-dried tomatoes, water. Can't go wrong there, right? Hopefully it turns out...it's my first time with this recipe! Too bad I won't be able to sop up the juices with a big ol' hunk of buttered bread! Ah....bread & butter. I miss you :(

Vent Fest Friday!

As suggested - I will be doing a Vent Fest Friday every Friday. Please let it all out here, without guilt!

Here I go!

I am so.sick.of.this! I'm tired of not knowing if it's my forceful letdown that's causing all of A's symptoms or if it really is a dairy allergy. We had a funeral on Wed and Thurs and I fed him 2 bottles of EBM on Wed - - well, we had 3 awesome awesome awesome diapers. Back to where they should be. Then, of course - BAM...back to green and even a couple bloody (not much blood..but still, it was there!). I went grocery shopping last night and wanted to cry in the middle of aisle 3 since almost everything picked up had either dairy or soy in it. I'm pissed that I have to do so much research on my own and the doctor doesn't offer much help. The only thing he said was "stay away from dairy". Well, if I wouldn't have done research...I would literally only be staying away from drinking milk, eating cheese, yogurt, and ice cream. I almost wanted to throw in the towel and say fuck it - I'll just formula feed. But that breaks my heart and I can't imagine losing that special bond I currently have with A due to nursing. I also think it's selfish of me to think that way - - it's only for a year that I'll have to live this dairy/soy free lifestyle. And in the big picture - I'm eating a lot more healthy because of it. Lots of fresh fruits/salads/veggies/chicken/fish. It's the most frustrating when I'm starving and I have to "make" something instead of just grabbing something quick, which is the joy of processed foods.

I'm going to ask the pedi GI specialist on Tuesday if we can have the dairy-protein allergy test done and see if that's an option. It pisses me off that the regular pedi never even mentioned this test or mentioned sending us to an allergist. I know the test exists...of course, only because I did the research.

Ok - I think I'm done. I still feel like shit though and very "defeated" right now. DS is started to stir and wants to eat.

How is MSPI affecting you emotionally/mentally/physically?

Emotionally-I am exhausted. We go from having awesome diapers to back to a horrible diaper. I am in the process of changing the way I hold A during feedings because a consult over the phone with a LC suggested that I have forceful let down. We just had 3 awesome diapers in a row...and now the last one was bad again. I feel horrible for my DS and guilty because I feel like it's still something I am doing....which in a sense, it is my fault. I get angry at the milk/soy protein and angry that it might be my boobs causing this.

Mentally-I am struggling with trying to put some flavor into the foods I eat. I am going grocery shopping today and am not looking forward to it. It's a huge change to have to look so closely at labels, get excited that something looks like it's safe, only to find that the 2nd to last ingredient is one of those hidden soy/dairy products. I am still determined to make this work though...regardless of how hard it may be at this beginning stage of the journey.

Physically-I am losing weight due to my not eating so many processed foods...so that's a bonus! I am worried about calcium intake though. I still have to research if there is a calcium supplement I can take that does not contain the dairy protein. Right now I am drinking the rice milk fortified with calcium...but it's not enough. I'm used to drinking a gallon of milk a week myself. I miss milk! :(

What were/are your LO's symptoms? How long have they been suffering?

My DS started out with just green poo. I thought it was a foremilk/hindmilk imbalance at first. Then about 3 days into it, he had his first bloody/mucousy diaper. Of course, this is where I freaked out, started crying, and called the on-call nurse (because of course these things only happen at night over the weekend!) She told us to just watch it and call back tomorrow to make an appt to see the pedi. That was a Sunday.

Monday comes, we call the pedi and we go in that same day. He says it's probably a virus. I even took diapers into the office with me so he could see them. Okay - just a virus, it will work itself out! Went home thinking "I can handle this"

Tuesday comes, more bloody diapers. Now I'm freaking out. Virusus should not cause blood. Of course I call pedi and we go back in! This time pedi suggests that it might be MSPI so I cut out all dairy from my diet that day.

Fast forward to today.

I have been dairy-free for over two weeks now. I also have been primarily soy-free (won't eat soy sauce, soy milk, etc) but just realized that I may be consuming things with soy lechithin in them like whole wheat bread. I am thinking that I will have to be more careful because we are still pretty much all green poo and some blood still (about 1 diaper a day has blood).

I am also wondering if the green poo in general may be because of a forceful letdown. I have a funeral today/tomorrow and will be primarily bottle feeding EBM. If his poos go back to yellow after these 2-3 bottles of BM, I'm not sure what I'm going to do. I do not want to stop BFing because I love the bonding experience and it's so convenient...but do I sacrifice DS's poo because I'm being selfish? Not sure if I'll have to exclusively pump. I am selfishly hoping the bottles do not change his poo color.

We have an appt with a pedi GI specialist next week Tuesday. Not sure what they will do...but maybe they will have more answers than the regular pedi since he says that the blood should have stopped by now.

All in all - it's very confusing to me and I'm ready for things to go back to normal!

What are some things you would like to learn from this check in?

I need ideas for asking questions to help you ladies get something useful out of this blog.

Please list some questions that you would like answered and I will incorporate them into the check-in.

Thanks!

How was your LO over the weekend?

Mine was good in regards to the diapers - - it looks like we are on the "up-swing" of things with DS's diapers. We had 3 bloody and pretty green diapers on Saturday and only one of his diapers had a tiny bit of blood in it yesterday. His coloring is also getting more fluorescent green and/or yellow instead of the darker green....yay!!! I am awaiting a call back from Children's Hospital today to schedule A for his gastroentologist appt...which was suggested by his pediatrician to make sure nothing more is going on besides the allergy.

I am hoping that things continue to get better with him - it will be 2 actual weeks come this Tuesday since I've been dairy-free....so I am hopeful!

What are some of your go-to foods?

I have been having such a hard time eating. I used to just grab anything and go, like chips or grab a cookie passing the pantry or cook up some mac-n-cheese for lunch.

Now I'll eat a banana or some strawberries instead. I've also been eating a lot of brown rice and veggies.

I get hunger pangs every night when I wake up to feed the little guy - but I don't want to put the effort in to figure out what I can eat. The other night before bed I was hungry and was going to make some microwave popcorn - - but nope, no-can-do since it contains milk. Who knew?

One thing that's good about this journey is I think I'll be in those pre-pg jeans sooner than I thought!

What has been the most frustrating thing about your dealings with MSPI?

My most frustrating thing is that DS will have normal yellow/seedy diapers and I think "oh good, the protein is out of our systems" and then BAM - we get 5 green/bloody diapers in a row. It's so frustrating! And to make matters worse - I can't seem to find anything that says if this is normal. It just says that it can take a couple of weeks for symptoms to go away. It just doesn't make sense to me that the blood would come and go - and diapers can be normal and then back to "bad". We're off to the doctor again this afternoon...but he doesn't seem to be much help. We'll see what he has to say!

Let's Get Acquainted!

Since this is the first post - thought we should get acquainted with each other.

Please list your name (siggy name is okay as that's what we are used to!), how long since your little one was diagnosed, and any other information you would like to share.

Me: My name is Cassandra, or Cassandra1028 on the bump. My son was diagnosed a little more than a week ago, so we are in the beginning stages of this journey! Right now I am exclusively breast feeding and have gone on a dairy-free diet. I am thinking that in another week or so, I will try to reintroduce soy to see if he tolerates it okay.

My son was having green, mucousy, and bloody diapers and that is what prompted us to take him into the pediatrician's office. At first, the pedi just said that he must have a virus. I did some research and found a lot of information on www.kellymom.com and figured that I would keep the dairy protein allergy in the back of my head if the diapers continued. Well...they did and we went back to the pediatrician. Without my bringing it up, the pedi suggested that it very well could be MSPI. So here we are today - no cheese, no milk, no yogurt, no soy sauce, no "Cassandra foods" that I love so much! Hey - I'm a Wisconsin girl...us girls love our dairy! I fully intend to stay dairy-free for as long as I am breastfeeding (for a year or more yet!) and I hope to find some great recipes to help me eat something more exciting than the bland brown rice, veggies, and chicken or fish that I've been sticking to since this came about!

I look forward to getting to know the rest of you!

As far as the check-in goes - I would like to do a question of the day. Please share any ideas/questions/suggestions for the check-in as this is a blog for all of us! I hope you enjoy the site!