This is going to be a long post, and I am not sure what advice I am looking for, more than needing to get this all out to a group that understands what a big deal this is to me.
I BF my first DD until age 4 and she weaned on her own. No allergies. I BF my second DD until she weaned on her own at 2.5 when my third DD was born. She had what we thought were traditional allergies, battled what we thought was reflux....my diet was limited and she was a beating to nurse. But we made it. My third child came and was sick from the start. BFing was like I was torturing her. We say LCs, drove out of state to a specialist LC/Ped/Allergy specialist. I was cutting everything from my diet, raging against GI Drs and allergists that babies are not allergic to BM....I ended up down to 4 foods for 6 weeks, and she was still so sick. At this point she had gone through all naturopathic and chiro related Drs, upper GIs, swallow studies, ENTs, etc. I had lost 30 lbs. We trialed elemental formula prescribed by the GI for 3 days while I pumped. She was SO much better. Went from crying 16 hours a day her first 8 months, with significant developmental delays due to the crying and pain, to a "normal" baby. For the next month I pumped and fed her the elemental formula. Went back to BF on my 4 food diet. Sick again. So so sick. Repeated this over and over and finally went full time elemental formula just before a year. She was Never attached to the breast...she hated everything revolving around eating, so the change was no biggie for her. I was emotionally devastated as I had fought so hard. I felt like I lost my ability to comfort her. Like I had lost an arm. But from a health stand point, it was the right decision.
During this time my 2.5 year old started having awful stomach pain, returned to the vomiting we had left her first year, trouble swallowing food, etc.
Long story short, both girls were scoped by the GI, biopsies, and diagnosed with Eosinophilic Gastrointestinal Diseases...affecting different parts of their GI tracts. We travel to an eosinophilic disease clinic out of state now for treatment. One is now 5 and cannot have dairy, soy, wheat, beef, corn, egg, nuts, fish, tree nuts, citrus, etc. The other is still reliant on elemental formula at age two. She reacts to proteins in everything, which is likely why she was ill from the few foods I was still eating. Both girls are still struggling, need nighttime attention every couple hours of more all night.
And hello surprise baby 4, who is 8 months. A son. :) He has "reflux", and I have pulled dairy, soy and wheat due to bloody poop and vomiting. He is not nearly like my last one, but of course we wonder what is making him sick...traditional allergies of an EGID like the girls. He is miserable to nurse, just a beating...there is no warm fuzzy there for me. When he does get a bottle. it is elemental formula.
I am SO tired of retracting my foods and wondering what is making my kids sick. Baby 4 is still bothered by something. I don't know what. What happens if we get to age two and he still is sick and we have to pull all food like we did with my now 2 year old? Let me tell ya, it is hard to tell a toddler you now can't eat. I am starting to become irritated by him needing to nurse ALL NIGHT LONG. He won't sleep unless he is attached. Which is a huge problem since I am up cleaning vomit of my two year old half the night. I haven't slept 2 hours straight in years. I am tired of managing so many special diets. I am tired of wondering how much of his problems is food or just baby stuff.
Part of me really wants to move to elemental formula, get him to a baseline now, as an infant, so we KNOW what his safe foods are and don't go through the two year beating of making his sick with food trials. But then we get moving through the day, I make a bottle, and he doesn't want it and well, nursing is what I know. It is so normal for me. And he is so attached to it. If I had a wand and could convert over night, I honestly think I would. I have overnight hospital stays with the older kids this year and he cannot come.
My mom heart is torn. There is not much I would not do to BF my kids, but after watching my other kids be so sick for so long, and knowing I could avoid that with him...well, I am not sure which decision is the most selfish at this point. I almost feel like I am BF to heal me vs what is best for him.
Not sure there is a right answer, but needing to vent that out to a group that understand how heart wrenching this is.
Katie - Married to Mike 06/02/01, Mom to Sydney Anne born 11/21/09 and Alice Maeryn & Oliver Thomas born 04/24/13
I'm so sorry. I just don't know how you are doing it. I had reflux babies with feeding aversions and it was horrible, but it doesn't compare to what you are going through.
I'm confused about something you said. You said it's a beating to nurse him, but you also said that he's attached to nursing. What do you mean? Does he fuss during feedings? Have you tried reflux meds with him? My son was in pain and miserable until I got him on Prevacid. My daughter was never properly medicated and she suffered with reflux pain until she outgrew it.
I really don't have any advice, (other than maybe to try meds with your son) but I wanted to encourage you. One day you will look back and you will be proud of the wonderful mama you were to those little ones of yours. I had a very, very rough time with my two youngest who would not nurse, would not take a bottle (I had to pump and spoon feed my son his breast milk), didn't sleep, were in pain all the time, and one who threw up nearly every feeding. I pumped around the clock for all three of my non-nursing infants and cared for all three with no help whatsoever (no family nearby, and an unsupportive spouse whom I later divorced). It was tough. Everyday I woke up and the first thing I said to myself was, "Dear God, how am I going to do this again?" What you are dealing with is way beyond the usual requirements of parents, and you are doing a wonderful job! If you're not proud of yourself now, you will be when it's all behind you.
There's a website called infantreflux dot org There is a forum there on MSPI. Maybe there's something there that can help you.
Thank you all so much for the replies.
Regarding testing him...yes and no. He has to eat enough offending foods to cause the reaction, in order to get an accurate scope. It is different than an IgE allergy, where the person instantly gets hives, or an anaphylaxic rxn right away. With my other two, some foods cause immediate stomach pain, etc, but often times it takes a couple exposures. The imnune system sends eosinophils (a white blood cell) to attack the food protein, which it identifies as a pathogen. My 2 year old can eat dairy and instantly is sick. My 5 year old had to eat corn for 2 weeks before all hell broke loose and she started puking and having trouble swallowing. The diagnosis is made via upper endoscopy, biopsies taken, and eosinophils counted under microscope. There is usually visual GI tract damage, but that can be caused by reflux and such too. So we would have to make him sick to a certain level before we would feel good about general anesthesia and scope. My older girls are scopes after nearly every food trial.....we've done 9 rounds of general anesthesia and scopes in the last 2 years.
Honestly, he presents much less symptomatic than my others....and he could be fine. We know when I eat dairy, soy or wheat he has occult blood in stools. It is all muddled in my brain. I am wondering if I had him sleeping better at night, would I feel eager to wean? Is his chronic night waking gagging and choking because he is has EoE, or because he had been attached nursing for 6 horus prior. It is such a head game. I am just So, Darn Tired.
I do have a great DH to help with anything. He is a former athlete and had a total knee replacement 3 weeks ago (he is 40). So he is still unable to drive, on narcotics every 4 hours, crutches, daily therapy and a lot of pain. He is not too helpful at the moment but happy to do anything he can. In three weeks of so he should be a bit more mobile.
Maybe step one is to work on getting him to nurse less at night? Maybe that will help me get perspective.
He is a beating to nurse...he does that refluxy pull off, cry, wiggle, adjust, want to nurse, pull of, cry, repeat a thousand times, never just nurses comfortably to sleep. During the day. :) He ALWAYS thinks he wants to nurse, pulls at my clothes, but once he is there it is chaos. BUT, Most of his calories are via dream feeds....he wants to be hooked up all night. :) THis is really hard when my other two are so very needy. I was cleaning puke up at 3am last night with him slung to my boob because if I moved him he would cry and wake the others.
In writing this, I think step one if spend a few nights working on the night time feeding habit.
I really think some reflux meds might help him. That's exactly how my reflux babies ate (pulling on and off, arching, screaming, rooting, latching on, pulling off again, screaming some more, over and over again). It was maddening. Every feeding was an ordeal. My dd was never properly medicated so she did this until she outgrew her reflux at 9 months. My son was put on Prevacid at 5 months and his pain finally stopped, but by then he had developed a feeding aversion so he would only take fluids by a spoon.
But, yes I think the night time feeding habit is a separate problem and it's making things much worse for you (and everyone else). He probably is a comfort feeder despite his reflux pain, and he only knows how to sleep when latched on. The only real way to stop this is to teach him to fall asleep without the boob. I know, easier said than done. I wish you the best and hope you find a solution soon. Thank God you have a helpful husband. Hope he's feeling better soon and able to help out more!
Oh and Benadryl. We use lots of Benadryl ( thank G-d we don't have a corn allergy!) but maybe you could get an Rx for the injectable and small insulin needles? It helps relieve the pain and the pro/con is it knocks my son out probably in part because if they are so uncomfortable they are nursing and squirming all night long they aren't getting good sleep either and have a sleep dep to make up. HUGS!
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