Possible Digestive issues and/or Allergies - How do I get Drs to take me seriously?

[callahansmama]

Hello mamas, I am really struggling here and would appreciate any feedback or ideas/advice you may have. I apologize in advance that it's mostly about poop and long as long can be!

My son (just about 11 months) has had frequent mucousy stools and diarrhea for the past two months. Before that he was eating a variety of finger foods (fruits and veg, egg yolk, toast, yogurt, cheese, chicken, cheerios...) and didn't seem to have any reactions to anything and he always had fairly normal breastmilk poops with chunks of food visible. In Feb, he had a bout of diarrhea that lasted about two weeks and caused a horrific diaper rash as well. His stool smelled so foul I can't even describe it and about 5 days into it, his breath started to smell like that too - just rotten and foul and not right at all. Since then it has come and gone but mostly it has stuck around. He will have the odd bowel movement that looks normal, but usually he will have diarrhea everyday at some point and it always smells really strange and rotten - not like any poop I've ever smelled. His breath continues to smell weird although not as bad as before and it comes and goes. He has also started to spit up which he never did even as a young baby. Usually the first bm of the day is huge and then all day it's small amounts almost every two hours. His sleep has really been disrupted because it seems that he gets very bad gas from the late evening (9:30 ish) all night long until he finally poops anywhere between 3 am and 7am. Even when he was breastfed around the clock he never pooped at night. He will wake screaming and won't relax to let me bicycle his legs or massage his tummy. He still nurses at night although when he's so gassy he doesn't even want to do that, he just squirms and cries. He will eventually fall back asleep only to wake up soon after. In the crib or in bed with me it's the same thing - waking up screaming.

I live in a remote northern Canadian community that is only accessed by winter road or plane. We have no hospital. There is a health centre staffed by nurses, a nurse practitioner (on mat leave right now) and a rotation of Drs in town one week a month. The nurses are mostly new and young and underexperienced in my opinion. They are on call 24/7 and will even come to your home and they have seen Callahan several times in the last two months. Always the same thing - they check his vitals, weight (he did lose some weight with the initial sickness and was put on some pedialyte and breastmilk only and he gained it back quickly) and then they just tell me it will pass. They think it was rotavirus. But here I am 2 months later and he's still not well and I am at my wits end! During this time, neither myself or dh have been sick, or the two baby girls that I watch part time. I have disinfected his toys, use lysol wipes all over the house but still it persists and I am starting to think it's an allergy or some sort of digestive issue. I have an appointment for two days from now to request to see the Dr. next week when he is in town. I am anticipating that they will fight me on this and try to convince me that its no big deal and I just need to nightwean him and stop picking him up and catering to him at night. I have heard it all before and the sad thing is that because of where I live, I don't have any other options. I don't know what to say to get them to take me seriously and give me ideas to try to isolate the problem.

My dad said maybe I shouldn't be giving him real food and that I should try purees (which he never ate) and made me feel that it's my fault. I have never tried eliminating anything from my diet or his because I have no idea where to start! I am so confused, so desperate for an answer. Neither of us is getting any sleep and I hate to hear him scream when he wakes up and be in pain in the middle of the night. Part of me wonders if its not even a healthy problem, if he's just needy and screams immediately upon waking so he'll get my attention. I am constantly second guessing myself and my attachement parenting choices lately because I wonder if I am causing all of this myself and if I just gave him baby food from the beginning or let him cry or cleaned my house better or a million other thing...things would be different.

He is usually a happy baby during the day and is very active and meeting all his milestones. He's close to walking and he babbles like crazy and loves kids and animals. He doesn't seem bothered by gas in the daytime and he seems healthy otherwise.

Basically my questions are:

1. How would you approach the nurses and Drs about this?

2. Do you think that night nursing is causing the poops in the middle of the night? It never did when he was younger and he eats his meals and snacks at roughly the same time everyday.

3. Has anyone experienced anything like this (chronic diarrhea and mucousy stools)? Does it sound like an allergy? How would you go about elminating foods to figure it out?

Thanks so much ladies! I used all my naptime to type this but I know at the very least I will get support from you and I need that so much right now:)

[Mosaic]

I think that bug sounds like rotavirus as well, which can really do a number on your intestinal flora. You may want to consider adding a probiotic to his daily routine to see if that helps.

Otherwise, I think you should pay extra close attention to his diet to see if you can figure out what is bothering him. If he never really had problems before Feb., start by being suspicious of the foods you have introduced since then. There's no reason to go to purees, but I do think that based on what you're describing, something in his diet may be bothering him. Maybe go back to the diet you know didn't bother him before and then reintroduce things rather than trying to eliminate things now.
Also make sure that you haven't started consuming something that may be transmitting through your milk (soy, maybe?).

I wouldn't worry about nighttime poops... if he is having BMs every 2 hours, then of course he'll have some at night! The key is to try to figure out what's bothering him, and then the schedule will likely work itself out. I also wouldn't worry about getting the doctors on board: I'm in the "city of medicine", but food allergies/intolerances are tricky to deal with, and even here docs aren't really that interested in pursuing anything unless there are severe nutritional and growth problems.

[goldenwillow]

Originally Posted by callahansmama 

1. How would you approach the nurses and Drs about this?

2. Do you think that night nursing is causing the poops in the middle of the night? It never did when he was younger and he eats his meals and snacks at roughly the same time everyday.

3. Has anyone experienced anything like this (chronic diarrhea and mucousy stools)? Does it sound like an allergy? How would you go about elminating foods to figure it out?

Thanks so much ladies! I used all my naptime to type this but I know at the very least I will get support from you and I need that so much right now:)

Oh mama, I am sorry this is happening to you and your LO.

My gut honestly thought....  what are you eating?  My diet is still restricted and we are going on 22 months of nursing.  I am not able to eat chocolate much, tomatoes and cheese (pasteurized/homogenized dairy will be a huge culprit in most BF babes) we drink raw milk and have no issues. 

A good friend of mine just went through something similar and it was her diet that was part of the culprit.  She asked if her son poo'ng once a week was ok....  I asked her... how often do you poo?  Enough said.  Your dad may have an idea RE: pureed foods.  My DS didn't eat to many pureed foods at that age, he wanted the real deal, in hindsight, I would have pureed a bit more. 

I honestly would start here. 

http://www.askdrsears.com/html/4/T041200.asp

Then you can know if it is part of your diet.  Weeding things out will help diagnose for your LO. Also, you will have some confidence when seeing the Dr.

I don't think BF'ing at night is the cause of night time poos, IMHO, I am not a Dr.  My DS nurses a 2-3 times at night (22 months) and has only poo'd a few times, usually when a tad ill. 

Also good links...

http://www.askdrsears.com/html/8/t081100.asp

http://www.askdrsears.com/html/11/T081500.asp

http://www.askdrsears.com/html/4/t042000.asp

Good luck to you. 

[anjsmama]

I might be able to help you!!!!!!  I'm very excited because  I feel like it's ALWAYS me needing help and so confused but I have actually been there!

My DS (32 months) also got sick in February, and though he recovered from the illness, he never recovered digestively. Like you said, he was on pedialyte and regained the weight he lost, but the bouts of diarrhea (with constipation in between ... poor thing) never went away. His poops were extremely frequent (like  8 times a day for a 2 1/2 year old!), very mucousy, HORRIBLY smelling, and also occuring during the night. We were different-styled parents when DS was very little so he has been STTN since 8 weeks and not eating or drinking anything at night. So I doubt the nursing is causing the night poops because my DS was having the same problem without taking in anything at night. Needless to say this all caused SERIOUS regressions  in potty learning because the poor kid didn't even know when he had to go! He'd just stop and shriek and then go a ton. We had to go back to diapers. 

It caused a lot of sleep interruption which lead to irritability and believe me - I know how you feel when you say you were at wits end! After a few weeks of this, I started to wonder if he could have celiac disease. I have it, and just got diagnosed last year. I started thinking back to how things were before I was diagnosed and switched to gluten free.... sleep deprivation, horrible smelling poop, constipation/diarrhea, migraines (no wonder on the irritability), and the stand-out signal - a crazy appetite! I would eat and eat and eat and eat and eat all day long and never gained an ounce. My DS was the same way - the increase  in his appetite after he got over the illness was insane. Because I have CD, it wasn't  hard to convince the pedi to get DS checked out by a GI doctor, who had him tested, and yes, DS has celiac disease. It's been two weeks since we switched the whole house to gluten-free and I will say DS wakes up more and more like himself everyday. One poop a day, no more irritability, and only waking at night occasionally (maybe once every 3 days). 

I also would wonder when he woke up screaming if it was just a need thing, and not a health problem.... but then I remembered how it felt. I would cry everyday telling DH how much pain I was in, how tired I was, how I just didn't understand... and it made me feel like I was crazy (psychologically!). I was in "perfect health" as the doctors kept telling me....... So I wanted to make sure I wasn't making DS feel crazy too! 

The reason your story makes me suspect celiac sprue disease (as opposed to a typical allergy) is because it is an autoimmune disease. And though you do have to be born with the genetics to have celiac, symptoms begin at all different times of life. I never had any symptoms until age 16. Typically, symptoms are triggered by a stressor (physical or emotional or both).  For me, it was when I got mono as a teenager. For DS, I think it was a combination of his sister being born (jan) and his first major illness (feb).  I think if your DS had a regular food allergy, you would know already. As you said, he's been eating all of those foods for some time with no problem. Also, the way you are talking about the foulness of the smell... it just sounds very familiar. I actually threw up once while changing my DS' diaper. The gluten intolerance leaves fats undigested and they come out in the poop... it's just awful!

I also think my DD has this problem also because I have accidentally been "glutened" twice since she was born, and after I was (and of course, felt the effects), both times she had a few discolored mucousy diapers that returned to normal, yellow, seedy within a day.

As for approaching the drs and nurses....  haaaaaa. I will say I know more medical information than any 21 year old mother of two cares to know. My DS had a hole in his heart that needed surgery as an infant, my DD was born with vasa previa, I have celiac disease and so does DS. Every single one of those things, I had to figure out for myself. After doing my research, I would put together a timeline/frequency of symptoms, and print the symptoms and research of the things that I suspected and take them with me to the docs. I know it annoyed them, but in the end, I have been told by very anti-AP docs that I am a very "observant" mother and they aren't sure their problems would have been found otherwise. Go figure. 

Best of luck, mama! I hope you find just the answers you are looking for and  that your DS gets back to normal soon!

[LionessMom]

the part that gets me is that you said he is fine when only breastfed. and this next part is bc i was recently diagnosed. your kids sound like my kids. fructose intolerance only shows up when you start food. bm is fructose free. other things can get into bm but not fructose. fructose is found in fruits, veggies, whole grains, and brown rice.

to find the real problem you must do an elimiantion diet. take it back down to only meat and white rice for 2 weeks at least. then once a wekk add something new. only the one day. then go back to meat and rice for 3 days. if during those 3 days you notice diarrhea and gut pain you will know that he cant tolerate that food.

this will tell you. if you notice it is mostly fruits and veggies that is not tolerated, that is fructose. you would also need to avoid sorbitol (in stone fruits and diabetic food) and sucrose (table sugar, evaporated cane juice, brown sugar, molasses, honey, etc).

my kids and i have suffered from gerd, chronic diarrhea or constipation, bloating, gas, nausea, heartburn, and vomiting bc of this.

whatever is causing it can be found out through this diet.

[goldenwillow]

Originally Posted by anjsmama 

I I started thinking back to how things were before I was diagnosed and switched to gluten free.... sleep deprivation, horrible smelling poop, constipation/diarrhea, migraines (no wonder on the irritability), and the stand-out signal - a crazy appetite! I would eat and eat and eat and eat and eat all day long and never gained an ounce.

I am the exact opposite CD gal.  I gained and gained and gained.  So interesting. 

[callahansmama]

Thanks for the replies ladies! I took him to the nurse and she told me to try no dairy for a week and then go from there and try gluten free...until we can figure it out. I also have an app. with the dr. on Monday morning. So far no change but it has only been 1.5 days. I realized that I gave him a lot of dairy in the form of yogurt, cheese, minigos, cottage cheese... It will be interesting to see what happens. As much as I love dairy, it seems like it would be easier to go dairy free than gluten free. We live in such a remote community and there are no alternative products in our stores at all. I would have to order from a southern city and pay high shipping costs. It would be quite an ordeal. I just want him to feel better though. The little love is such a sweetheart and I hate to see him so uncomfortable. I always change his diaper before naps and he often wakes within 30 minutes with a poop. He goes much longer at night but still other night was 2:30, today wasn't until 7 so he got some more sleep. I love him so much and hope we get this figured out asap! Thanks again!