Desperate for help - Breast milk Colitis - Page 2

[CJLondon]

Hi there

We are really struggling here. DD2 went backwards after the water poo and back to mucus and occasional blood flecks. I have been surviving on lamb, potato and banana for a long time. I cut the vitamins, as they seem to make her worse (these were supposed to be hypoallergenic). I tried her on some probiotics (kirkman inulin free probiotics) and was told by the dietician to try to expand my diet again at the same time so I added broccoli, gluten free oats, salad leaves back in, and beetroot one at a time each day. DD2 got increasingly worse throughout that week (sleep was very disturbed although poo didn't appear chanced) and then passed the most blood she's ever had after 5 days. So again I went back to the baseline (if you can call it that as we've not yet had any mucus free poo for some time).

I am now using the formula (neocate) that she has been prescribed to up my calories and add essential nutrients and good fats etc which I feel embarrassed about admitting to the dietician as I think everyone will think I am going crazy and we are all struggling as a family. At this stage I am now trying to get her to accept some of the formula as I will use it to make up the solids we introduce.

I visited another Ped Gastro and she said "lets get this straight, a little bit of mucus and blood occassionally is nothing to worry about" and advised that I should consider weaning her onto formula and add/start solids! DD2 is generally happy although really finds it impossible to sleep for any stretch longer than a couple of hours and very, very difficult to get to sleep and often fussy unless distracted. Me and my husband are exhausted and I feel like the wheels are about to fall off. I'm scared my poor toddler is seeing her mummy disintegrate before her eyes.

Dietician's advice was simply to avoid Milk/Egg/Soy and Wheat again and expand my diet to only exclude these things. I had a meltdown at our local weigh-in clinic when they asked why she hadn't gained weight for the last 2 weeks (I think that this is likely to happen at around this time as solids are due to be added and I am so tired I can't imagine my milk supply is enough) and said that I keep telling people that I don't feel confident about following their advice based on what's happened previously but they won't listen. They want me to try her on baby rice so am trialling it in my diet again to see if she can tolerate it along with brocolli again.

I am now terrified of introducing solids and keep telling everyone that but having zero support to do that. She has started getting a croupy cough again last night and I think that's evidence that her reflux is worsening (which I understand is quite common in babies with this between the ages of 5-7 months). I can hear her bringing up her feeds into her mouth and she will often cough/choke and wake herself up. She has never been given any reflux medication either (apart from infant gaviscon which is useless if you are breastfeeding), I think because she looks so healthy and happy generally unless trying to get to sleep or "reacting" to a food, then they aren't taking me seriously.

I have tried my best but I don't know how much longer I can do this for. She won't take the formula or cup anyhow so I have to breastfeed her regardless of what I want or what is best for her and it's the only way she will settle to sleep (it's always been the only way she can settle to sleep). I am just hoping we can find a diet of solids that she can tolerate...

[sosurreal09]

OK when re-introducing a food I would only do one for one week and then try another. A different one daily is too much too soon and it won't help you isolate the food.

NO way in hell would I start her on solids! They are INSANE! OMG she is reaction to different foods in your body and they want you to give her them straight?! That makes no sense at all.

They literally said that same thing to me that "a little blood" wasn't a big deal and some babies/people will ALWAYS have that. It may be something you have to accept. If she is content it just may be the way it is. There certainly is not anything else you could cut out. I'm thinking if she is having a reaction with what little you are eating she would probably have that reaction on the neocate too.

Here is the ingredients: Corn Syrup Solids (57%), Refined Vegetable Oil (Medium Chain Triglycerides (Palm Kernel and/or Coconut oil) (7%), High Oleic Sunflower (7%), Soy (6%)), Calcium Phosphate Dibasic (2.5%), and less than 2% of each of the following: L-Arginine L-Aspartate, Tripotassium Citrate, L-Leucine, L-Lysine Acetate, L-Glutamine, L-Proline, L-Valine, Glycine, L-Isoleucine, CAEM (an emulsifier), L-Threonine, L-Phenylalanine, L-Tyrosine, L-Serine, L-Histidine, L-Alanine, Sodium Chloride, L-Cystine, L-Tryptophan, L-Methionine, Magnesium Acetate, Magnesium L-Aspartate, Potassium Chloride, M. Alpina Oil*, Choline Bitartrate, M-Inositol, C. Cohnii Oil**, L-Ascorbic Acid, Ferrous Sulfate, Zinc Sulfate, Taurine, L-Carnitine, Sunflower Oil, Niacinamide, DL-alpha Tocopheryl Acetate, Calcium D-Pantothenate, Cupric Sulfate, Manganese Sulfate, Pyridoxine Hydrochloride, Riboflavin, Vitamin A Acetate, Thiamine Chloride Hydrochloride, Ascorbyl Palmitate, Potassium Iodide, Chromium Sulfate, Mixed Tocopherols, DL-alpha Tocopherol, Phylloquinone, Sodium Molybdate, Folic Acid, Sodium Hydrogen Selenite, D-Biotin, Vitamin D3, Cyanocobala

I see some red flags and a lot of who-knows-what in there. I can not believe the price!!!! OMG for corn syrup? It's 57% corn syrup and $139 for 4 cans?! What? (BTW our ped said she couldn't have this b/c she had a reaction when I ate corn, so IDK why they are telling you it's OK)

At this point I would just keep nursing and if she is content that's all that matters. Some kids are not good sleepers period. My DD never was even after she stopped having reactions and she always (and still does) take forever to go to sleep!

If you think she has reflux maybe try something homeopathic for it b/c the prescriptions can cause diarrhea. http://www.thehomeopathiccoach.com/blog/crying-babies-reflux-and-homeopathy.html has some tips.

Also I would really try adding coconut to your diet if you haven't already (real coconut, oil, butter) but make sure it is ONLY coconut in it. My DD did not react to it thankfully, but really it's good fats that you need. If she doesn't get better, but isn't worse or in pain I would continue to eat it....I think that's how it is going to have to go now, just look for more blood or her being more fussy.

[sosurreal09]

Big Big hugs! I am so sorry to hear it's not going so great.

[mytwomonkies]

Big hugs!!! We were in a similar boat when DD2 was about 2 months. I was down to eating lamb, rice, and squash/zuchini. I ate this for 3 meals a day for about 3 months or so. She reacted to potatoes so that may be something for you to look at. We did not introduce solids until about 9 or 10 months and even then it was VERY slowly. She ate only squash for the longest time. Have you looked into the SCD diet from the book Breaking the Viscous cycle? This may be something that might help her by you following it. I would definitely take the formula out of the equation. I'm so sorry you are not getting any support!! There's just too many people out there that think it's not that big of a deal to put a baby on formula so why try so hard to continue breastfeeding. It's sad. Once you get the diet figured out your milk is going to be the most hypoallergenic thing she can get so don't give up! Do google SCD though and see if that might be something you're willing to try, I really think it may help.

[Sarmom]

My son has had the same problem from about 2 months and he is now 9 months old .Seems like it all started after he had every stinkin' vaccination--which I regret immensely.   He had awful gas cried for hours every night and sometimes during the day too. Had watery, explosive green poop then turned to really mucusy with blood spots and sometimes streaks. Went to three different ped. and one ped GI spec. and she just said to stay on the elimination diet and cut out even more things. So exhausting.

I know how you feel. I have been on elimination diet since he was about 3 months old and he seems to be allergic to almost everything: wheat, corn, dairy, mango, blueberries, eggs, avocado, possibly also beef, grapes, and olives. I feel like giving up almost every other day.

I have to know, what have you figured out? How did you figure it out? Too afraid to start solids yet.