April 06, 2008,
A.K. asks from Pelham, NY on April 01, 2008
Seeking Moms Dealing with Failure to Thrive / Underweight Babies/toddler Reflux
This is a difficult request to even write. I cannot believe I am at this point, but here goes. My daughter who is 21 months, full term normal delivery, is considered failure to thrive, a refluxer and she is chronically constipated. She currently weighs 18 lbs 7 oz and is 29.5 inches in height. She is well below the growth curve.
At six months she was diagnosed with reflux after a fairly fussy newborn stage. She did not ever seem to love eating even from day one (exclusively breastfed). She was introduced to bottles (still only breastmilk) for real when I returned to work (for a while until I had to return home to deal with her health). She hated, hated hated the bottles and did not adjust well to a nanny. She always wanted to be held upright and walked and did not sleep well, so I self diagnosed reflux and began seeing a Ped GI doc as well as her ped on a regular basis. From 4-6 months I believe she only gained 4 oz.
She began prevacid and seemed to improve though her appetite was never very impressive. We progressed to a full endoscopy to ensure there was nothing wrong with her GI tract and confirmed reflux at 17 mos.
Now here we are at 21 months, small and I am just looking for anyone who may have dealt with this, or who is dealing with this to give me local support. My pediatrician has never been alarmist about the situation, but all specialists have shown to be very very upset that we haven't gained more.
Developmentally, my daughter is great. Always met milestones on or ahead of time. Currently she is adding words, though not super quickly, she understands it all. Her physical well being is also excellent. Had two very minor colds in her entire life. One cold included a minor ear infection. That is it!
Has anyone seen a "good" nutritionist in NY / Westchester? Did they help and can you provide any other ideas.
I have seen feeding clinic helpers who have helped me to feed her. She is extremely picky though I think she eats a pretty good range of foods for all she has been through. She does not drink a lot of milk, but recently began drinking about a 8 oz a day. She eats dairy, chicken, bread, nuts (not peanuts due to allergy in my husband), tons of berries, or any other fruit she can get her hands on). Loves veggies and loves ice and water (?). Doctors have told me to restrict water to see if she is just using it to fill up, but it is difficult. She gulps bathwater to get water.
Prior to mom profession, I was a PR professional for a large finance firm. I am a smart and determined person, but dealing with my daughter's health problems and my own brother's recent suicide has really thrown my life into chaos.
S.J. answers from New York on April 02, 2008
My situation is a little different, but my 6-year-old has been under the growth curve his whole life. We've been to see various endocrinologists and he's been monitored closely by his pediatrician all along. Some people have recommended growth hormones, which we've decided not to use, at least at the moment. Over the years, we've grown more comfortable with the fact that he's small; otherwise he's done very well developmentally. (He's never particularly liked to eat and we still find ourselves trying to make him eat higher calorie foods; he actually likes vegetables and fruit, but not much else.) Anyway, the only advice I can give you is to hang in there and try not to worry too much. And try different specialists -- that was helpful for us. (The first endocrinologist we went to was extremely alarmist.)
Hope this helps a little!
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B.W. answers from New York on April 02, 2008
Hi A., You can Google the following: "Pediatric Nutritionists for Children Who Fail To Thrive" and all kinds of articles will come up with information on this subject. If all tests have been done on your 21month old to show that physically she has no problems with swallowing, etc. then consulting with a pediatric nutritionist may be of help, just make sure that you find a nutritionist who is a doctor/pediatrician, not someone who claims to be a nutritionist without a medical degree.
Have you tried giving her pediatric Ensure? It has more calories than milk and regular drinks and perhaps she will enjoy it. Also, make her regular Jello and substitute juice for the water required to make it, and in this way she'll be getting calories and the liquids she craves.Her need for excessive amounts of water should be looked into. Have you told her pediatrician about this? If he just keeps pooh-poohing you and telling you it's nothing, perhaps you should find another doctor for her. My daughter changed pediatricians three times with her first baby until she found one who was a good match for her and my grandson.
Good luck. Grandma from Westchester
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M.R. answers from New York on April 02, 2008
First of all, that doesn't sound like FTT or underweight to me. If she's exclusively on breastmilk, make sure your pediatrician is NOT using the regular chart, as this is designed for FORMULA FED babies and yes, there's a difference.
My own son is still barely 24lbs (11kg) at 25 months, and definitely NOT FTT!
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L.R. answers from New York on April 02, 2008
I am sorry you are having this issue. We have a version of this with POST reflux babies that are underweight. Going through early intervention process to figure this out. Quick question when the endoscopy was done did they check for Celiac Disease (via bloodwork) http://www.celiacdiseasecenter.columbia.edu/A_Patients/A0... Do not think it can be diagnosed until 24 months.... Provided link to information and best Dr. in NYC. I have it and my girls (13 months) both have the gene BUT the may very well NOT get it..... This may be helpful to look in to and if not I suggest a REALLY good nutrionist to help you and or Early Intervention if you have access to it. We are going to Mt. Sinai in May due to my one daughter's severe allergies and will hopefully be meeting with their nutrionist for assistance. We have been given guidance in the meantime and are starting by adding oils and starches to their food.... to help them gain weight - in addition to keeping them on formula. I wish you all the best and keep me posted on how you are doing.
J.J. answers from New York on April 02, 2008
dear, dear A.;
first of all let me congratulate you on taking the initiative to reach out about this challenge in your mothering life. it takes a LOT of guts to speak openly about what troubles us most.
secondly i have to really, REALLY commend you, like i would like to give you a trophy, for staying committed to nursing and breastmilk only; without a doubt it's by far the BEST THING you can do for your child, and you've been doing it! especially in a very medicalized atmosphere, mothers are really subverted and diverted from the profound benefits of breastfeeding, and it's just fantastic that you have stuck with it.
i'm sorry that it sounds like you haven't been aware of La Leche League Intl; if you have, then i'm sure you've exhausted thier information and ideas. but if you haven't, it's not too late to look for this organization on the web easily by googling it, and going to your local chapter meeting or calling the chapter leader for your area. these are the best, most up to date informed people on infant nutrition and nursing. even now well into your child's second year they can still help.
i do not have experience with what you are dealing with, and you are, very obviously, smart, sophisticated and resourceful, but i'll throw out a couple of ideas to you for the hell of it.
first of all; isn't it possible that you just happen to have a very neatly packaged little person here? some people are tiny! i remember being the big child in the class, always standing in the back row for pictures, having to buy clothes in the preteen and husky department by 11 years old, and being terribly envious of these birdlike little girls that were so delicate and springy! i mean TINY little things that were very clearly bright, healthy, active, normal kids.
maybe one thing you could do is talk to moms you see at the playground with slightly OLDER children; in other words, consider this from the other end; not where your girl should be by now, but where she could be in 4 or 6 years from now. when you're at the playground, look for short, skinny kids and find thier moms, and be frank, be friendly, and go ahead and say,
"Listen, could I ask you a mom question? is your child petite? because my kid is very small and i'm looking for another perspective, beyond the growth chart expectations. what was your experience like?"
or something like that. because you know, we all love to talk about this stuff, and chances are the mom will be delighted to recount for you what her fears were like and how she navigated and survived the situation.
then too, what about putting her in a mommy-n-me class with you? not with any other caregiver, but just with you, so you can really see how she's doing compared to other kids, with other kids, and give yourself a chance to get to know some other moms that you could talk to.
the next thing i would say is, if your child is developing normally in other ways, maybe it's time to take a MEDICAL BREAK. stop with the doctors, just for a while. give yourself a boundary, say, for 3 months, don't go to the doctor to pursue this particular issue at all; only go if your child has something obvious and urgent like a bad cough or fever. just break this cycle of feeling beholden to the doctor all the time. and see what happens, you know, give yourself a chance to breathe and let the anxiety out of this.
laslty, if you haven't already i would say check out Askmoxie.com and Kellymom.com.
G.W. answers from New York on April 02, 2008
I would suggest to great hospitals to get help from.
Morgan Stanley Children's Hospital, which is part of the Columbia Presbyterian on 168th st in Manhattan or
CHAM "Childen's Hospital at Montefiore which is in the Bronx
on 210th street off of Gunhill Road.
I use to do pediatric nursing, and I saw little ones with this problem treated outpatient in both hospitals very well and recover.
R.J. answers from New York on April 03, 2008
I understand how you feel my niece was extremly small for her age as well. In fact my brother would tell me how horrible it was when they would go to the doctor and would recieve a lecture about how she needed to gain weight - as if they were doing something wrong.
Just continue feeding her healthily and in time nature will work it out. My niece is still slim but she is very healthy, smart and active.
As for nutritionists in Westchester have you heard of www.zoomnia.com yet?
This seriously is a lifesaver. You can ask advice to local specialists in westchester for free. It is completely anonymous so you do not have to give out your name, phone number or address. More than one expert responds so you can compare and compile info so it is sort of like a second opinion.
Please do not stress about this situation - it will be ok. Also, please send an update with her status. I am rooting for you.
S.C. answers from New York on April 06, 2008
I am sorry to hear about your loss as well as the difficult time you must be going thru with your beautiful daughter. Failure to thrive is often used, especially with children that are considered picky eaters. Many healthcare professionals believe that a child with reflux becomes failure to thrive because they avoid trying what caused them pain (the reflux) in the first place. Its seen as a behavioral mechanism used by the child (control). You mentioned about your visits to a feeding clinic. I am curious to know about their intervention approach since I am familiar with a behavioral feeding program here in queens new york directed by a GI specialist, a speech therapist and occupational therapist. Their program is great and has taught many babies,toddlers and young children to eat thru positive reinforcement. Did your feeding clinic teach you strategies to use in your home? Also have you contacted the Early Intervention program in your county? If your daughter qualifies for early intervention, a speech therapist as well as an occupational therapist can address the failure to thrive by facilitating the sensory and feeding componnents.