support needed...what now???
kris_kelsey
member
Short story~ Rowan had MSPI diagnosed at 2 weeks old due to congestion, rashes, anal fissures and bloody stools. Elimination diet failed. Alimentum and she reacted to the casein. Eventually got neocate. At 6 months rice cereal gave her red bumps on her face...like a contact dematitis. More diaper rashes as more foods got introduced...some yeast rashes and some red and open/weeping rashes. Had reflux until 10 months old. At 11 months the chiro said Rowan reacted to corn, wheat, rice, oats so to eliminate those for her as well and that meant stopping neocate and using almond milk. The congestion she had (which was a constant loud chest rattle plus draining nose plus chronic ear infections due to constant drainage) went away in 36 hours! GONE! I fed her homemade purees for a month and she was all clear! Her nose was finally dry, her lung sounds were finally clear, she was good!!! Then at her 1 yr appt we found out she had dropped to the 1st percentile for weight (from being 25-30% her whole life) and was not thriving. So I tried introducing coconut milk and coconut oil to fatten her up and other "safe" and organic meats. She got bumps and red diaper rashes from the coconut. And for the last month she has been all runny again due to the various foods we are trying to give her to fatten her up. Saw an allergist today and scratch test was normal and she said the food stuff is probably a coincidence or whatever but she can't really help me with that.
What now? Give up and just give her whatever and deal with whatever those symptoms hold for her? Restrict her diet but then she runs borderline for failure to thrive? End up with ear tubes because her drainage won't stop? I am tired for restricting her so much and she wants to eat normal food. She gets so pissed that she can't eat off our plates. I can't give her purees with olive oil added forever and she wants to eat grains and everything else. Nothing is anaphylactic and otherwise she is thriving in movement and in disposition, so do I just try a full diet and see what happens? I AM AT THE END OF MY ROPE!
Re: support needed...what now???
That is frustrating.
DD has been on Neocate since 4 months. She did not tolerate any food we tried until the past month. She now eats sweet potato, rice, avocado, and banana. I try new foods every 5-7 days, including re-introducing foods she previously reacted to. I give her regular brown rice, pieces of banana and avocado, and I cook her sweet potatoes by slicing into french-fry sized pieces and steaming. I put the food on her tray so she can feed herself. This way, I let her have the control and if there is something she refuses, I don't push it because I figure she may know better than I do what bothers her.
We see a dietician who is helping us maintain a balanced diet while decreasing her dependence on Neocate. She advised giving new foods in tiny, even miniscule amounts, at first, or just rubbing the food around her mouth to check for a reaction.
Woah I am so sorry youve had to deal with all that, and your poor lo.
Im a ftm and obv not an expert so you can take this fwiw but with all the food issues and your doc suggesting failure to thrive I would think upping the fat and calls would be the most important first. Maybe since you switched to almond milk ok you could make almond milk formula similar to how homemade goats milk formula is made. That way you know your LO is getting lots of nutrition while your also doing the solids you know are acceptable for her.
I would also suggest seeing another allergist or a specialist who can give you some clear answers on the foods that are going to trigger your lo that way you can have a plan of action and meal plan for her. I am sure there are lots of healthy and creative things you can come up with.
What specific things can she eat and not eat?
wow.. that sounds so frustrating! I'm sorry!
When you introduced coconut milk / oil and the fatty foods, were they all organic? maybe she's reacting to the sprays or what ever they put on the food?
Maybe do a RAST test for more foods? include as much as possible, even insecticide.
If your doc allows this, i would go back to basic (what eve she was eating when she wasn't reacting) and once she's completely cleared give her mashed ORGANIC avocados for a week. And if no reaction add something else.
I'm sure this isn't much help since you look like you know what you're doing. I'm sorry you have to deal with this and hope you find out what's causing it soon.