Cynful Posted January 20, 2013 Share Posted January 20, 2013 I'm truly at the end of my rope with my two year old. Our doctor hasn't helped, nor our pediatric gastroenterologist. Background: My two year old son was born 5 weeks early at 4lbs. 5oz. He was in the NICU for 10 days for digestion problems and breathing issues. He's had trouble eating ever since. He had severe reflux and still has it a little now but is no longer medicated for it. In the NICU, he could not tolerate any formula - he'd throw it up and choke on it. I pumped like crazy and he seemed ok on breast milk. Then he started doing bad on breast milk. I quit dairy and soy - it helped some but not entirely. I quit wheat, eggs, nuts, etc. He ended up on Nutramigen and was somewhat better. Then once solids were introduced around 6 mos., he started with reactions - bad diaper rashes (bleeding, painful, it was horrible), stopped sleeping through the night, HORRIBLE crabbiness. We backed off of solids until 9 mos. same thing all over again. Then again at 1 year. We've been going through this for two years now. We've had various acronyms thrown at us but nothing definite - MSPI, FPIES, EE, etc. Now, he's still on elemental formula (Elecare Junior) and doing well IF that is the only thing he gets. As soon as we give him any type of food, juice, etc. he turns into a different child - screaming, demanding, tantrums, mean (pulls hair, scratches, kicks....), stops sleeping - but no other symptoms just behavioral now. He looks healthy and is growing though he's dropped to below the 10th percentile - he's small. What do I do? He wants to eat. I want him to eat but I can't take the behavior. Thanks for reading this far. I'm just so tired about all this. Quote Link to comment Share on other sites More sharing options...
Parrothead Posted January 20, 2013 Share Posted January 20, 2013 Is he like this with all fruit and veggies? Is he talking? Can he tell you if he is in pain? Have you tried just one food at a time? Have you tries smoothies? Quote Link to comment Share on other sites More sharing options...
Guest inoubliable Posted January 20, 2013 Share Posted January 20, 2013 No advice, other than "find new doctors". DS12 was also born early and in the NICU for two weeks for a collapsed lung, pneumonia, and digestion issues. He was on Nutramigen for the first year and he's always been in the 10th percentile. He's a healthy 12 year old now and has no food issues, but you can bet that if I'd gone two years with no answers and ended up with a toddler who can have nothing but formula, that I'd be searching for answers in other places. :grouphug: Quote Link to comment Share on other sites More sharing options...
Parrothead Posted January 20, 2013 Share Posted January 20, 2013 How long did you give it when you've tried him on food? A day? A week? A month? I'm wondering if you've given it enough time for his body to become used to actual food. Quote Link to comment Share on other sites More sharing options...
Dandelion Posted January 20, 2013 Share Posted January 20, 2013 It certainly sounds like it could be food intolerances/GI issues. You might try introducing only one food at a time so you can observe him for reactions (tough to pinpoint which foods are causing the reactions if he's eating multiple foods at a time). These are some of the foods that are generally considered safe for people with food intolerances: rice, lamb, turkey, cabbage, kale, carrots, beets, broccoli, cauliflower, sweet potato, squash, pears, and apricots. I would start with just one food from that list and give it to him at each meal for one day. Observe for any reactions (both behavioral and physical). Keep notes. The next day, do the same thing with a different food. While you're doing this trial, only give him water and his formula to drink (no juice, etc.). It's not an exact science, as food reactions are often delayed and might not show up until the next day. But it will give you a better idea of which foods are causing definite reactions and/or problems for him. During this time, also check for ingredients he might be reacting to in non-food items (medications, creams, shampoos, etc. - they often contain artificial colors, flavors, gluten, etc. that cause problems for many kids). If that works for him, and you find that he tolerates some or all of the foods from the "generally safe" list above, there's nothing wrong with keeping him on that limited diet for awhile as his digestive system heals. After a few weeks, I would also look into giving him some supplements that promote gut healing and reduce inflammation (a good probiotic and Omega-3 fish oil at a minimum). This may or may not be what's causing your little guy's problems, but it won't do him any harm to do a limited diet like this to test for food reactions. :grouphug: Quote Link to comment Share on other sites More sharing options...
Cynful Posted January 20, 2013 Author Share Posted January 20, 2013 Yes, we've always done the one food at a time. At 6 mos. when he first showed reactions, we spaced it every 3-4 days and we've gone as long as a week in between. He has issues with nearly every thing he eats - fruits, veges, meats, definitely dairy and soy. Anything with sugars in it, I suspect fructrose since he has issues with fruit. The doctor put him on Florastor when he was still a baby, maybe nine months, and I put it in his bottle and he threw up all day and had the weirdest bm's I've ever seen (pink jello). We thought maybe it was a fluke and tried it again a few weeks later and the same thing. Florastor has fructose and lactose in it. He's just barely talking - he's been delayed on that though I suspect its from not eating. At night, I can definitely tell he's uncomfortable but only when he's had solid food (not his elemental formula). He doesn't sleep well and writhes and arches. I haven't tried smoothies because I don't know what to put in them. LOL We are testing rice milk and hemp milk but neither have enough calories, fat and protein. Chucki, do you mean how long do we keep giving the food? Like testing the rice milk - I'll give him whatever he'll take of it as often as he wants it throughout several days. My other son was an even earlier preemie and he had severe reflux but no other food issues, other than being picky. Insurance and doctors are our biggest issue. My husband and I are uninsurable and in Florida, unless we have family insurance, we can't just get kid insurance and we can't get family insurance since we are uninsurable (previous conditions). I'm working on getting Florida KidCare but it's taking forever. First time we were denied; this time, I'm still waiting. I just wondered if anyone had ever heard of something like this? Can a kid have intolerances to everything? I used to think those people who thought red dye was causing their kid's behavior to be bad were crazy; now we are that family. Quote Link to comment Share on other sites More sharing options...
Dandelion Posted January 20, 2013 Share Posted January 20, 2013 Can a kid have intolerances to everything? I used to think those people who thought red dye was causing their kid's behavior to be bad were crazy; now we are that family. Yes. My DS has food reactions to 9 different foods, as well as MSG, HFCS, and artificial colors, flavors, and preservatives. These foods and food additives all cause behavioral problems for him, and some cause physical issues as well. We determined his food sensitivities through a combination of blood testing (IgG blood test) as well as food challenge/elimination trials that we did on our own. He's been on a diet free of his reactive foods for over 2 years now, and it's made a huge difference for him. The DS of a friend of mine is reactive to everything except for 5 foods. So that's what his diet consists of. He's been diagnosed with Eosinophillic Esophagitis (EE), which you mentioned in your original post as a diagnosis that's been mentioned for your DS. Sounds like a definite possibility. Quote Link to comment Share on other sites More sharing options...
treestarfae Posted January 20, 2013 Share Posted January 20, 2013 Have you done allergy blood work? Quote Link to comment Share on other sites More sharing options...
gardenmom5 Posted January 20, 2013 Share Posted January 20, 2013 I would find a good naturopath who will do allergy blood work. (naturopaths will look for things in allergy blood work an MD won't look for.) also have him checked by a chiropractor to make sure he didn't have any pressure put on nerves during delivery. (it happens) you can also keep trying different gastroenterologists. just because their speciality is the gut, doesn't mean they are familiar with all that's known about the gut. 1ds had "episodes" that even neurologists/the children's hospital couldnt' diagnose. (when we got a name - abdominal migraine - most *neurologists* at our medical school had never heard of it.) turns out he had a fractured vertebra pressing on a nerve. even though western docs took the x-ray, they ignored the healed fracture as unimportant. one visit to the chiropractor and his symptoms were gone. we did have to keep taking him in as long as he was growing to keep symptoms at bay, but it was once a month for a quick adjustment. cyclic vomiting syndrome- another place to check out Quote Link to comment Share on other sites More sharing options...
dbmamaz Posted January 20, 2013 Share Posted January 20, 2013 Yeah, you need to start searching for better doctors. you need to find out who the specialists at the biggest teaching hospital near you are, you need to find local parents with similar issues and ask who has helped them, drive as far as you need to to get to a big name specialist. find someone who is doing research on this kind of stuff. Your son has serious medical problems and he needs to be seen by someone who has worked with other kids like him. Not all doctors are the same. You need to go on the warpath until you find a doctor who can help. EE is at least one i've heard on and I have at least 1 friend who has a son who, at age 9, still sometimes has to go through bouts of only eating the formula. Its very hard and frustrating! Good luck finding someone who can help you Quote Link to comment Share on other sites More sharing options...
gingersmom Posted January 20, 2013 Share Posted January 20, 2013 Have you had a feeding evaluation? Quote Link to comment Share on other sites More sharing options...
amo_mea_filiis. Posted January 20, 2013 Share Posted January 20, 2013 You mentioned EE, but was it formally diagnosed? If so, has he ever had a clean scope? What about EGE? Have you considered going to the National Jewish hospital in Denver? They have great diagnostics for food problems, intense treatment, and give good follow up plans. Quote Link to comment Share on other sites More sharing options...
Kyr Posted January 21, 2013 Share Posted January 21, 2013 Have you seen this article? Mother of all Food Allergies http://www.jpeds.com/article/S0022-3476%2803%2900273-7/fulltext I read it when it was first published and it was such a relief to know there were other kids out there like mine and Drs who would take us seriously. My now teen is still elemental formula dependant. I know you have insurance issues but if something goes through, Dr. James Franciosi (Who Worked with Dr. Putnam who wrote the above article) recently moved down to Florida. We saw him for a while - he was amazing. http://findaprovider.nemours.org/Search/Profile/64878 Quote Link to comment Share on other sites More sharing options...
mommymilkies Posted January 21, 2013 Share Posted January 21, 2013 Get a new doctor and try the GAPS diet. Quote Link to comment Share on other sites More sharing options...
sbgrace Posted January 21, 2013 Share Posted January 21, 2013 You mentioned EE but was he actually scoped for eoseinophilic disease? Quote Link to comment Share on other sites More sharing options...
Reflections Posted January 21, 2013 Share Posted January 21, 2013 I'm really concerned about the red jello like poop - that sounds like red currant jelly bm and is related to Intussusception. I haven't read all the posts: has he been scoped for a blockage? or xrayed? IMO the behavioral issues you are experiencing with food is pain related. I hope you find answers soon :grouphug: :grouphug: :grouphug: my mama heart hurts for you. If you live close to Orlando I can recommend a fabulous pediatrician who is wonderful at sniffing out hard to answer medical problems. Quote Link to comment Share on other sites More sharing options...
MomatHWTK Posted January 21, 2013 Share Posted January 21, 2013 Throwing out a few quick thoughts because it's been 8 years since I really had to think about it... I would join one of the the online EE/EOS support groups. Even if he doesn't have EOS present, the tips for using Elecare would be helpful. My DS was formula only until age 3. He did start talking at 3 finally. Make sure you are offering other forms of oral stimulation to substitute for chewing solids. I kept DS out of the kitchen (put up a gate) and only ate when he wasn't in the room to ease his discomfort over wanting food. He usually watched a video in another room if I didn't have someone else to entertain him. We saw Dr. Putnam at Cincinnati Children's for EOS testing and had a scope done when DS was 2. He tested negative but still couldn't handle solid foods for another year. My best theory is that severe food allergies (of which he had/has MANY) and exposure to the allergens had really torn up his system. It took 2 years to heal it, in the meantime any and all food tests just re-damaged what we were trying to heal. :( Cincy has a feeding clinic and Dr. P is a leader in the EOS field so worth looking into their website at the very least. In addition to specific EOS and Feeding Tube support groups (older kids who can't eat usually go with a feeding tube or Mic Key to make feedings go fast enough to keep up with their needs), I would look at the Kids With Food Allergies website. Many of the families there have had to spend a time on extreme elimination diets or formula only. Sorry for your struggle, it is just heart breaking and I know that rash it just tears your heart out to see it. Quote Link to comment Share on other sites More sharing options...
texasmama Posted January 22, 2013 Share Posted January 22, 2013 My thought was EE, like some pp's. Has he been scoped (upper endoscopy)? Does he have reflux? I think you need a really experienced pediatric gastroenterologist. Quote Link to comment Share on other sites More sharing options...
Cynful Posted January 22, 2013 Author Share Posted January 22, 2013 Thank you to all who have answered. I had no idea others had ever even dealt with this. He has not been scoped but once the insurance is cleared up, I'm hoping that will be our first option. We are in the Orlando area and will be looking up some good docs, possibly the one Kyr recommended as he specializes in EE/EOS. Luckily he loves his bottle - he won't drink the Elecare out of anything but a bottle. I hate having him on it so long, but he won't go to college with it. :) He'll drink water out of a cup and other things that we've "tested". He LOVES ice, so we let him have that as much as he wants for oral stimulation. Not sure what else to help with that though. When he does eat solid food, he frequently spits it out. We have no idea why. He'll be eating just fine and swallowing and then all of a sudden he just starts spitting it out instead. Quote Link to comment Share on other sites More sharing options...
MomatHWTK Posted January 22, 2013 Share Posted January 22, 2013 http://funandfunction.com/parents-oral-motor-c-65_107.html We used chewies and various whistles. You don't need to buy the therapy ones, kazoos and recorders work fine. Blowing bubbles, making faces, a mirror to watch himself make faces, etc. These will all work the mouth muscles. I also gave DS sippy cups with different spouts and used the kind with a straw to make him use different muscles. I did this with his water first- didn't want to slow him down on the formula. With formula, we used whatever got it into him the fastest. As your child grows, you made need to concentrate the formula slightly to get a higher calorie count but get a nutritionist or doctor to help you work out the balance. If you make contact with one of the support boards, let them know you need an EOS specialist in the Orlando area and they should be able to point you in the right direction. Quote Link to comment Share on other sites More sharing options...
Guest Lalaurenmai Posted November 5, 2014 Share Posted November 5, 2014 I am in Orlando and need a good pediatrician for my 4 month old baby boy. He is diagnosed reflux but his GI is horrible. We are switching to children's hospital this week but in the meantime I need a new pediatrician. She says "oh all babies cry and don't sleep and moms don't get much sleep anyway the first year it's totally normal." My son has shrieked in his sleep since he was born, writhes/thrashes all night. Doesn't go for more than 2 hours anymore. Has trouble nursing, pulls off and on, grunts/squirms/kicks and generally only feeds for a few minutes before refusing. I have to wait until he's sleepy/sleeping to get a full feed into him. Also only poops once a week and it is always explosive and looks like shiny wet paint. Please help. Quote Link to comment Share on other sites More sharing options...
Lori D. Posted November 5, 2014 Share Posted November 5, 2014 Since he was premature, perhaps he has an underdeveloped GI? :grouphug: Quote Link to comment Share on other sites More sharing options...
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