I have two adorable granddaughters. The first born, was premature and didn't have a very good suck. She was diagnosed with severe reflux, was put on Previcid, but at age one began losing weight and had a naso-gastral tube put in. Two months later a stomach tube was surgically implanted. After 2 years, and much hard work done by her mother, she is without the tube and eating normally. Needless to say, when her second daughter was born, all doctors said it couldn't happen again, but it did. Now her second daughter, almost one year old, is facing putting in a stomach tube. She has refused the bottle, never drinking more than 3 oz. at a time. Her mom mixes formula in with purees.
She is on Neocate, a formula that costs $600/month, and contains completing broken down amino acids, no milk or soy products. We have been to the Milwaukee Children's Hospital Feeding Clinic, Children's Memorial, and Loyola. No one can tell us why, all tests show that she is normal, with a small swallowing problem. She has speech therapists and nutritionists, but no one can shed light on this problem.
Has anyone had an experience with this? I know many food aversions come with other physical maladies, however, this is isolated.
I second the possible EE condition. Another great site to help you figure things out, (even if it is or isn't EE) is www.kidswithfoodallergies.org
Many many parents on KFA with similar kids as your granddaughters
Good luck and hugs!
Have them both tested for Celiac Disease, gluten that is a protein found in wheat, rye, barley and oats can cause many of the issues you are describing. Weight loss, acid reflux, an intolerance to other foods such as dairy and soy. It is a test you have to demand, however the University of Chicago is home to studying this disease. I suggest going to a GI doctor there and get tested. At least rule it out as a possbility. Good luck!!
From your post I do not have much info but have the Dr's thought about or tested for food allergies? Many children who are deemed "failure to thrive" end being gluten intolerant. That is, they cannot have anything with wheat, rye, barley, or oats. Believe it or not, wheat is in tons of food you would never even think about. Anyone can develop this intolerance at any time in his/her life. It can be devastating to adults and deadly in children. For various reasons, the medical community in the US does not consider this diagnosis very often. Please search the internet for gluten intolerance also known as celiac disease.
Maybe this link might have some helpful ideas?
Hi. I don't have exactly the same experience you have with your second granddaughter, but I do have a daughter who was born prematurely and who has feeding issues.
Are they considering putting a feeding tube in because of weight loss? I found that for us, putting flax oil, coconut milk, whole milk yogurt and similar high fat items into my daughter's 'smoothie' definitely helps her keep weight on, but some of these may not be an option for you. I also give her a small dose (1/4 tsp or so) of pharmaceutical fish oil every day or so. Although she is by no means fat - still a peanut at 21 months - at least we've been able to avoid a g-tube this far (hopefully forever!).
Also, oddly enough, we found that when she was given steroids in the hospital because of croup, her appetite increased dramatically. When she was off the steroids, her appetite dropped, but was more than before the steroids. Of course, I can't recommend giving a child steroids, but it was something that accidentally worked for us and maybe you could discuss it with your doctor? Good luck - I know how frustrating this is.
I can tell you why. I ahve walked in yoru steps and have twins but luckily i figured out what was wrong and avoid tubes for now. MIne are three and still on neocate. They have Esonophilic Disease. Please go to www.curedfoundation.org and www.apfed.org and learn more. this is why and gosh I cannot believe milwaukee did not tel you this another reason to be mad at them. who did you all see? dr noel? ughhhhhhhhhhhhh who do you see here? do you ahve a sppech feeding therapist that comes to the house? my neocates costs about $1000 a month and I am buyign it on ebay. my kids have terrible fod adversions and I am learning from My EE support group of amazing places to go just cant afford them or get there yet. Hang in there. you are so good at knowing there is more worng. I am so proud of you for reaching out and not just listenign to the drs. Have you done patch testing to rule out what foods are hurting???? are you on swallowed flovent? do your kids vomit too?
hang in there and please check this out sowe can get them only eatign foods that do not hurt.
J.
are you still attempting some oral feeding with the tubes? many times once a child has the feeding tubes put in and no oral stimulation is consistanly done they become food adversive,I have seen it many many times,I don't know why this happens but it does,I wonder if it is painful for the child to swallow maybe,wish I had some answers for you other than to keep doing oral stimulus try feeding even little bites of baby foods while she is getting tube feedings,if the feedings are not continuous 24/7 then do the oral feed before the tube feed that way she will learn that food in the mouth will help her tummy feel better,if you do it after the tube feed she will feel full and not want anything else,if she is on continuous feeds try a bit of oral foods at meal times so she is at the table with the rest of the family
hope this helps some
