I truly hope someone will take the time to help me here if you have any ideas or suggestions.
Since my son was a couple weeks old he has had stomach problems, has fitful sleep, and a stuffy nose. At first his stool was watery frothy green and he had a ton of gas. He would cry from about 10pm to 4 am usually. My research led me to think it was dairy allergy. Tried taking out dairy. Then thought it was from him getting too much foremilk. Tried insanely long hours of block nursing. His stool stopped being watery green, but now was mucus and brown watery stool. Went on total elimination diet. Tired eggs--three days later there was blood with the mucus. Assumed allergic to eggs. Same general timeline and results with wheat, corn, avocado, sweet potato, oats, mango, berries, soy, buckwheat, sorghum flour, and a few others that resulted with lots of mucus but no blood after a period with less or no mucus.
Gen. Ped. just said he was colicky and to try probiotics. Tried that and he screamed for the next 16 hours with a few 20 blocks of sleep. Called dr. all she said was I guess his body doesn't agree with it. Just don't give it to him anymore. Duh.
Went to diff Ped. who referred us to ped GI spec. who said to stay on elimination diet for the duration of breastfeeding and delay vaccinations because his immune system is obviously already stressed from his 2 mo vacc. which is when mucus mucus started.
Now he is 13 months old and has had mucus stool with the first few food we tried. Steamed zucc, green beans, pears, poss. the rice mush we made from brown rice pasta. The only thing that seems to be agreeing with him is steamed red potato mush.
But now what? Can he really be allergic to that many things? My research says that the blood test is highly inconclusive until around 2, but what do I do in the meantime? There has to be something I am missing here. Still on elimination diet--I am down to skin and bones pretty much, but my son is a healthy weight and seems happy and pain free most of the time now. Except the more terrible nights where he goes back to waking every 2 hours crying and wanting to use me as a human pacifier. Has never slept through the night.
Please help me.
Oh my goodness. First, HUGE hugs. HUGE.
Second, where are you? (at least state so that if me or anyone else can point you to resources, we can get you to your local stuff)
Third, THANK GOD you found a dr. that was smart enough to tell you to hold off vaxing if nothing else. :/
Fourth, you're right--something's "off". You might need to have testing done for a metabolic disorder. Mucous is absolutely a sign of allergy but it's clear that the whole system is off. Almost like his body is in immune system overload even now. The key would be to get it stabilized.
There's someone on MDC that might have good input to this--Panserbjorne. I wish you could tag in MDC. :/
Heather - Wife , Mommy & Health & Wellness Educator, Speaker & Consultant
Let me guide you to find the food and lifestyle choices that fit your family...
Thank you so much for responding and with such empathy. It has been a constant struggle and just knowing someone would take the time to respond to try to help is a relief in a way.
I live in Northern California and there are absolutely no holistic docs of any sort around here not to mention any good gen. ped. The GI doc is hours away and without ins. (had to quit job to nurse him- wouldn't take artificial nipple of any sort) it is diff. to figure out who to take him to that could actually help him.
Who would be able to do the testing for a metabolic disorder?
If your baby was born in the hospital, they usually test for a slew of metabolic issues (at least here they do).
I have heard of people having bad reactions to Culturelle if they have dairy issues. I would consider a different probiotic and maybe try again.
Have you considered trying no solids? Get things "normal" and then trying again? It isn't idea, but if nursing enough then the nutritional elements are there. Celiac screening? EoE? And while allergy testing in general isn't that great (only a 50% accuracy rate on + test results) it may give you a jumping off point. We had DS testing at 13 months and once I removed all his allergens, he was sleeping 5-6 hours at a time where it was 2-3 hours before that. Have you done a food/symptoms log?
I dunno, just talking out loud here.
Yes. I have been writing down everything I eat since March of last year except for a month or so when I felt like giving up because I had been typing it and my computer got a virus and I lost 5 months worth of notes.
What type of allergy test did you do for your son?
He had SPT (skin prick testing) and RAST (blood testing).
I know what you mean about stopping logging and giving up :( This is kiddo #3 with food issues so I know about food burn out! It's something everyone does multiple times a day that can cause so so so much stress.
Hang in there and hang in there !
There is debate about the accuracy and specificity of the tests. We did both to get a batter idea if one "missed" something.
Our DS NEVER slept. Up every 2 hours all day every day till we figured out his allergies. He didn't have "normal" diapers till he was 3 1/2 and we finally got everything figured out (allergies and Celiac and a really great probiotic). He got hives when he crawled through my nieces baby barf (she had BAD reflux and barfed all over my Mom's house. We figured out that when he started crawling he would get hives but ONLY at my Mom's house. Took a while to figure that one out.) He had anaphylactic reactions (which we didn't know were ana reactions till later) to both dairy and egg. After the egg episode, our Ped gave us epi pens and a referral to the allergist. This was at 13 months.
I had done several dairy only food trials with no results. I wasn't well versed on EDS or I would have started there. Though that would not have helped us really because he has some unusual allergies as well as something called FPIES.
Again, it can be so hard to figure it all out.
Yeah, because their immune system isn't stable until 2yo, the allergy test results can't be relied upon. They MIGHT be right, but they might not. Once their system stabilizes (which should be over by 2yo) then it's worth doing.
What they test for at birth depends on where you are. Start with a ped and ask, but I believe you see a geneticist. Don't let that fool you--it doesn't mean that this is only relevant if someone in your family has something similar.
And with a reaction like that to raisins, I would all the more be concerned about salicylates and aspirin. This is a decent, short primer on them:
We spent several years carrying our own food EVERYwhere; and often, still do.
scsigirl--how did you guys identify the FPIES?