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Topic: Help! Failure to thrive!
My daughter is 18 months old has been rx’d failure to thrive. She had reflux super mildy as a baby. She has always been small, around the 5% for weight. My old pedi always said she was fine, just small. Around 6 months she started having nonstop respirtory infections and i thought maybe we should check into cystic fibrosis, since she was losing weight as well. Dr wanted me to hold off until that spring to see if it was just cold/flu season. She never got sick like that again.
I was told just feed her tons ( which I did and she ate, but never any change )Fast forward a year- we’ve moved, new Dr. She’s looking at her chart and asks why we never had her tested for any thing since she basically isn’t growing. I told her that our Dr just said she was small, etc. I told her she just won’t eat much, no matter what I give her or how often/much, unlike before as a 6ish month old.So this dr said she is failing to thrive, and we just did all these blood/fecal/urine tests, plus the sweat tests to rule anything out. They all came back normal. So now we are to go to pedi GI. What are some of the rx that your little ones had?I know celiac was mentioned, but are there any other things to know about?She has frequent ( the dr said 4+ is questionable at 18 months ) but normal bowel movements. They don’t float, aren’t greasy or slimy, no blood that is visible or showed up in the tests.I want to mention that as a baby, she never cried to be fed, like her brothers. She would eat, but never seemed mad when she woke up or had been up for awhile. In fact she still never seems bothered by the fact that maybe sometimes we are running errands and lunch is late or doesn’t get a snack after naptime. I am comparing to her brothers, who were grumpy until they were fed, still are like that as kiddos. Let let me know they were hungry!!Sorry for the rambling, but I am confused and worried!!Thanks for any suggestions or helpTopic: Could be wheat intolerance?
My DD is 8 months old. She has confirmed and treated reflux. In the last month, she has started throwing up off and on – like once a day every other day. She has also had many nights of wakefulness – not fussy – just up. She has also lost weight in the last month, not gained.
She is on neocate thickened with rice cereal. She eats single puree foods and some combinations that are soy and dairy free. Up until a month ago, she was a champion eater and above the 100% percentile in weight and height (we knew reflux and allergies were likely so we started treating her on day two). Need less to say, she has been doing well.
The only thing that has changed in her life is the addition of cheerios to her diet. They are soy and dairy free so I opted to give those as a finger food. About a week later, she started throwing up. She has never been a puker; she’s almost a silent refluxer. I adjusted her meds (we’ve always been on the MARCI dose) to adjust for recent growth and I figured this would fix it.
Here we are 3 weeks later and she is still eating less than ever and consistently throwing up at least every other day. Could it be possible that the wheat in the cheerios is causing this reaction? She has no rash, diarrhea, constipation, etc. Other than not gaining weight (I just discovered this today at an appointment for a cold), the intermittent wakefulness, and the barfing, she is happy and content.
We just moved (the move is temporary) and my trusty, reliable and awesome ped GI is 1000 miles away. I’m hesitant to fight through this with a doctor here, do the blood work, do the endoscopy, etc. etc. when I could just pull the cheerios and see if we get a change. Celiacs does run in my family, fyi.
Any advice?
Topic: infrequent thick stools
I’m new my son is now 5 months old. He is exclusively on a breastfed diet. Has been since birth. He is milk protein intolerant and soy intolerant. I have celiac disease. I am very good with my diet and do not consume any gluten milk proteins or soy. He also has GERD with sandifers syndrome which is now under control with previcid. From birth (july) till the end of oct. he would always have anywhere from 5-8 bms about the size of a dollar nice and runny like breastfed baby poop should look like and the yellowish color. Than in nov. it went from 7 one day to nothing for 7 days. when he did go it was very think like peanut butter and dark brown and very stinky. the doctor rec. giving prune juice 2ml BID which we have been doing till today. with that there was still nothing till 5 days later when I called the doctor because he wasnt eating as well and very gassy and crying when he had gas and pulling legs up to chest. she started him on lactulose and sure enough the next day he had a bm it was thick again and same color and sent. when on the lactulose if he gets 2.5ml BID than it will be about 4-6 days before a bm and he’s still acting in discomfort by day 4 and not eating as much. If we increase to 5ml BID than he get very frequent runny stools that are only like dime size. so yesterday the dr. rec. that I bring him in to have tested for celiac and his thyroid. and to call a pred. GI dr to set up appt. she said to say the diagnosis is constipation and GERD. I dont mind seeing a pred gi dr. for the GERD but is this really constipation I think not because its not rock hard. and as far as testing for celiac, will it not just come back neg since I am on a strict GF diet.
I understand BF babies can go for a while b4 having a bm but to suddenly change and have discomfort is that normal? anyone else have these issues? advice greatly appreciated I have blood test apt tomorrow not sure when yet for the GI DRTopic: protein intolerance HELP!
Hey guys,
I was a regular here when my ds was born until he was two, he’s now six yo. He’s got a hiatal hernia and takes zegerid– hh was confirmed via endoscopy. He’s on a gluten free & dairy free diet. I also have a two yo dd who had severe reflux and food issues– she had mucous in her diapers when she eats corn, dairy, soy, certain beans and is quite fussy when she has those foods. Both children have only been tested for food allergies using the blood test and both children had the blood test while they were on a diet free of the offending foods. Ped gi concludes that these issues are really protein intolerances & we should avoid the offending foods and continue to do food trials every so often (every six months to a year) I can’t remember where to find the BEST info on protein intolerances for myself– Laura do you still have something good on that?? Dh… has a hard time with all the issues the kiddos have even though I have everything documented quite thoroughly. He’s wondering why we need to avoid gluten and dairy NOW, even though ds can have a “one shot deal” and be ok. He’s telling me about the studies where they have shown that exposure helps the child overcome allergies (I believe there was a big peanut study done recently that showed very small intake of peanut dust could help children wtih severe peanut issues). Anyways, we don’t have a formal allergy, but have skin and gi issues after ingesting gluten and dairy several times in a short period of days or weeks. I also see behaviorial issues in my son when he has gluten and dairy. I need FACTS!!– to help me with my discussions with dh. Our ped gi, who is great, is also soft spoken and doesn’t offer a lot in the way of articles to read for us. Any help would be great. I don’t know if Christine is still here with her kiddos that have celiac, but lucas tested negative for celiac, but definitely in my estimation reacts badly after a few days/a week on gluten and dairy. Any thoughts would be extremely helpful.
Those of you who have dealt with the horrors of infant reflux & food issues can probably imagine how difficult it would be to have a spouse questioning the current treatment (that’s working well for us)– I’m not wanting to lose my dh’s support in all of this but don’t want to cold turkey change course and see my children go downhill because he wants to feed them pizza when it’s easier for him. I love him but wow, its been a long journey to get here with the children I don’t want to go backwards now!
Thanks so much. This forum is so amazing.
–Anne
Topic: What to do next?
I posted this in the introduction threads, but it appears this place gets more views. Hopefully someone can help me here?
Hi everyone! My name is Ashley, and I have been browsing your amazing forum here (which I was stoked to find!!!!) for several days trying to find something that will answer some questions. Unfortunately….I have found nothing. So I’m reaching out to all you who have obviously gone through a lot.
We’ll start off simple. I am a single mom of my 13 month old daughter, Evelyn, born January 24th, 2009. She was breast fed until August. Before August she has mostly a normal baby, but was really quite colicky, gassy, fussy…. Anyway, I had had enough with all the crying so I thought maybe it was my breast milk, so I quit nursing her. That’s when everything bad started. She (what I know is her reflux now) would throw up all night. I would change the sheets several times a night because she was “coughing so hard she threw up” is what I would tell her pediatrician. At first we thought it was a breathing problem and that’s why she was coughing, and so she was given an inhaler and a nasal spray. Those did absolutely nothing, so I went in for a follow up about a month later when the vomiting was just getting worse. After a lot of discussion, we came to the conclusion that she had acid reflux and so he put her on 2.5ml of Prevacid once daily. Nothing happened. Afterwards (about Nov) he put her on 5mg daily (2.5ml twice per day) and still nothing. Then he tried 7.5ml twice daily, nothing. So then onto 15ml dissolvable (sp?) tablets, (about late Dec/early Jan) and it got even worse. In the time she was on those tablets, she had about a week and a half of chalky white poop, constant vomiting, lethargy, CONSTANT screaming, diarrhea…. We ended up going to the children’s hospital’s ER where the Dr actually told us that there was nothing wrong because she was gaining weight, she wasn’t jaundiced, and she no longer had white poops. (they had been gone for less than a day) Frustrated, I made an appt with her regular pede once more, and I took her off the Prevacid tablets immediately, and she was put on “Lorec.” Right after that, she had some blood testing done to check for Celiac and Milk/Soy intolerance and allergies. They came back negative. He called that an end to his research pretty much. She’s on 2.5mls twice daily or Lorec, but she is still not better. Her pede told her “she’ll outgrow it,” even when I was in his office in tears of frustration.
Now, it sounds pretty normal and fine, but the thing that gets me more than anything is that she has been diagnosed with Sandifer’s Syndrome also, however, it just doesn’t seem right to me. I don’t have doubt that she has Sandifer’s, yes, but there is more to this than that.
Whenever Evelyn sits, such as in her stroller, carseat, high chair, ANY chair…..she will stiffen her entire torso, and pull on her clothes. If she isn’t wearing clothes, she’ll pull on anything that is near her. For example, if she is near to me, she’ll pull on my hair or my clothes. If I let her be, she’ll go as long as she’s in the seat for, until I take her out, and she’ll act as if she’s not in pain or anything. If I interupt her and take her hand off of her clothes, which usually has a death grip on them, she will cry real tears and is in obvious pain, and then she will resume back to what she is doing. She will pull her clothes right off. I live in a northern climate, too, and she doesn’t care what the weather is, she’ll strip all of her tops off in a matter of minutes if I’m not paying attention, and then she’ll cry because she’s naked and cold. It’s embarrassing, too, and I have had people ask me if she is having a seizure. During these (I call them fits) fits, she will usually have her eyes closed, and she will breathe in short, quick, grunting breaths. Sometimes she will give up and just start crying. It’s so very very frustrating.
She is currently 22Lbs and she’ll be 14 months on the 24th, and I just don’t know what to do. The medication does nothing. Absolutely nothing. Being a single mom (the dad has never seen her, and wants nothing to do with her, so it’s just me) I don’t get a rest from it. It has taken over both of our lives, but I’m just so tired of seeing my little girl in pain.
I’ll post a few pictures. The first two of her are from when she first started doing it and I had no idea what she was doing. The 2nd one in particular is an example of not necessarily pulling on her clothes, but she raises the link toys over her head and stiffens her body and rocks back and forth. The other two are as recent as I could find, but I don’t have a working camera anymore. They’re pretty much exactly the same as she does now anyway. I know I have a video on here somewhere, but it being 2am, I will look for it tomorrow.
Pictures:
Topic: maybe celiac disease???
i saw the surgeon on tuesday—-after spending about 1 1/2 hours in radiology getting more mammogram pictures—then an ultrasound of my breast by the tech, then the radiologist came in and looked with the ultrasound—they decided what they saw was two cysts side-by-side, so, come back next year and no worries—–until i got to the surgeon’s office. he said i had another ring, probably a hereditary thing that i might continue to get and even if my reflux is treated. then, he looked at the biopsy report and said that it indicated celiac disease.
my last blood test was clear, but that was over a year ago. the surgeon was hesitant to say that i had celiac disease, and the terminology that was used in the biopsy report is totally different than the terms i have normally seen used with celiac disease. i’m not sure what to think since i read that the use of NSAIDs can cause similar changes in the duodenul bulb, which is where the biopsy was taken. he took another biopsy lower down, but did not get enough tissue for diagnosis. he really should have taken more biposies—he only took 3, each from 3 different places. i don’t think he really knows that much about celiac disease—but at least he is a good surgeon!i tried to call the kids’ GI to see what he could tell me, but they were out of the office. i have an appt. with my gyno on the 31st. i can have him run the blood test for me to see if it shows anything. i’ve had enough stress the last year that i guess it could have activated my celiac gene—-i really hope not, but not much i can do about it.just another adventure in our never dull lives!!