URGENT - Baby losing weight at one year

[esmicosaquehago]

This is a copy of the email, with a few more notes below:
"I thought it would be better to address Milo's feeding issue here rather for all of my FB friends to read.

He needs to eat. I just can't understand it. He refuses to eat anything for days. Yes, he looks healthy in photos but always surprises people when they pick him up. He's very light. His weight to height ratio is below the 0 percentile (100% of kids his age and height weigh more than he does, statistically). I have a feeling he's going to weigh even less than he did 2 weeks ago, when we have our weigh-in at the Cleveland Clinic tomorrow. I'm going to get lectured about how I need to stop allowing him to manipulate me... It's been a very rough few days. I'm dreading tomorrow.

I've been on the verge of tears at every meal for the last 4 days. Dave made me leave the house to calm down. I know it's not good for me to get worked up because he picks up on the tension. It's just that I can't help it. I feel like such a failure and completely incompetent as a mother. I mean, feeding your kid is supposed to be the most basic thing and I can't do it. I try everything and he screams, bangs his head, cries hysterically, and gags on the food. He ends up not eating and then is fussy all day. He won't sleep so we don't sleep. We're all exhausted, cranky, and stressed. I snap at Dave all day. I resent having so much responsibility and take a lot of it out on Dave.

This is BY FAR the most challenging thing I have ever dealt with in my life. I just don't know what to do anymore. The feeding team is going to recommend that I enroll Milo into the intensive 'Day Hospital' which would mean taking him there for the whole day, everyday. Basically, they are going to tell me that I can't feed my child so they need to intervene. Someone else will feed Milo crappy hospital food and I will be taught how to follow some plan. They will watch me feed him through one way mirrors and criticize me. This is what I have to look forward to tomorrow. I failed. I can't get my kid to eat anything. It makes me feel sick to my stomach. I feel like I have no one to talk to about it, either. No one wants to hear it and those that will listen end up saying the wrong things (my mom). I just feel so disappointed in myself and all alone. It's very depressing.

Sorry to dump on you like this..."

She is surrounded by people telling her that it is her fault that he is not eating, and also that she should be weaning him so that he will eat more food. She is offering the breast frequently.

She lives in the Cleveland area. I just spoke with one of the area leaders of La Leche League and am passing on that woman's number. Any other help, guys?

[pbjmama]

She mentioned gagging - has he had a feeding/oral eval from an OT? Has he had a basic blood panel and a test for metabolic disorders? I'm assuming this is an ongoing problem, not a recent illness or anything?

[esmicosaquehago]

I wrote back asking, but I am not sure yet. Will let you know.

[Megan73]

Obviously babies shouldn't lose weight but this is insanity – a baby won't eat so "experts" tell mom to take away the one form of nutrition he will eat?
If it's not caused by a medical problem – has that been established? – then this link might help: www.ellynsatter.com
Give your friend a hug – she's clearly doing her absolute best. I hope all the stress isn't hurting her supply.

[leigh09]

two things that have helped me (i have two boys that are in the 5th percentile for weight - my 3 1/2 year old has been there all his life, my 1 month old is there also):

1. a tip from the book mother foods for breastfeeding mothers was to up my intake of essential fatty acids, which has increased the levels of fats in breastmilk. her plan is to have 1/4 tsp each of flaxseed and olive oil at each meal, eat more eggs and butter, eat sesame and coconut oils as often as possible, and take a regular supplement of fish oil -- specifically cod liver oil if you live in an area where you don't get much sunlight. the book is worth getting for her much more detailed description than i can provide

2. dr sears has a suggestion on his website to simply allow your child to graze throughout the day, not to stress over his meals. this helped tremendously with my 3 1/2 year old. his suggestions are on this website: http://www.askdrsears.com/html/3/T031000.asp#back

hugs to your friend. she definately needs them now.

[LadyCatherine185]

Wow, your poor friend!

It sounds to me like there may be something else going on here. How often is she BF'ing? My 14 mo still gets 70-90% of his nutrition a day from BF'ing. At 12 months it was closer to 100% of his nutrition, he ate pretty much zero solids. He has always been in the 90th % for weight and 50-70th % for height, he is a chunker. At his one-year checkup, he was 27 lbs. Breastmilk has much more of what her baby needs than any solids she can give him. If she has enough of a supply, and is nursing often, and on demand, that should be plenty for him to be thriving on.

The constant fussing, not sleeping, weight loss, and refusal of solids sounds like there could be an allergy to me. Has she thought about that? Does he have any other signs of allergy? Rash? Eczema? Blood/mucous in stools? What about reflux?

The worst thing she could do right now is wean him. She needs to make sure her supply is up (oatmeal, staying hydrated, getting enough calories herself) and nurse often. There is something going on here, and she needs a BF'ing supportive doctor to figure this out with, because weaning him is not the answer.

[angelachristin]

I'm so sorry for your friend. at 1 year my DS wasn't eating ANY solid foods. NONE. I tried, he refused. So he was still completely EBF at 12 months...he probably didn't start to eat any solids in any meaningful amount until he was closer to 15 months old. He never LOST weight, but he didn't gain weight his entire 2nd year. He got a lot taller, though. He's 3 years old now and weighs 30 pounds soaking wet and he's 36 inches. he eats like crazy now. but he's still nursing. and he really only started eating a lot when I got pregnant and lost my milk.

[esmicosaquehago]

thanks everybody! i passed everything along.

[LadyCatherine185]

Please keep us updated!

[LadyCatherine185]

How is your friend's baby? Is everything going ok?

[trus]

what test for metabolic disorders could be done to figure out the issue?

[Mama2Rio]

sounds like a few things i can relate to.. is he active (did he start walking early)?... my dd lost weight from 9 months to her 12 month apt, but she started walking at 9.5 months and was very active. she is small, i am small, my husband is small... it's just how it is, some one has to be at the bottom of the charts for there to be a chart, dd is not on the charts. at 16 months she's 17 lbs. and i'm not worried. she just started getting into solid foods, and some days solids are just not of an interest.

I don't know about your friends genetics, she may have to look back at her grandparents and see if they were small (i found out my greatgrandfather was 5'2" and that's where i get my build from). my parents were both average in height, so it wasn't obvious why i never was an average sized person; my growth never followed a curve and neither is dd.

the best thing to do is not stress about food, bm has more calories per oz than any food. if the baby is breastfeeding then let the child breastfeed all he wants. some times i really don't understand doctors, totally illogical.

also, could there be an allergies? some kids have allergies and don't gain weight, especially multiple allergies.

[trus]

Wow, Mama2Rio, you are amazing! You just said all those great ideas that I was about to write, the only difference being that I took them from a book called "My Child Won't Eat" by Carlos Gonzales.

So to help out non-eating Milo his mom definetely has to read this book. All children go through a weight-loss period around 1 year of age. It is also normal for them to eat less after 12 months than they ate before. Milo's mother writes that he is really light, but that might be just her impression. WHat is his height and weight? Are the parents themselves tall? Also, that might be allergies if all other tests came back normal and the child is perfectly healthy. Dairy allergy aften causes irritation of stomach and esophagus which is why children don't eat - it plainly hurts.

Please let us know how they are doing!!! BTW, her post looks like it was completely taken from the book i mentioned above. The author has some samples of regular mamas' complaints, and "I dread mealtimes" and " I failed as a mother" are on top of the list.

[esmicosaquehago]

Hey, guys, sorry I haven't updated!

He is indeed allergic to both eggs and dairy, but they have been eliminated from mom's diet for several months.

The doctors she is dealing with are STILL telling her to wean, but she has not done so. Mom has also perceived them to be anti-SAHM and pro-CIO, among other things.

I should mention Milo is actually closer to two years. He has some fine motor issues and sensory issues, as well as a speech delay.

All of your suggestions have been very helpful. I told mom to check out this site herself too!

[LorenaAZ]

My younger sister was like this. She went through a phase and then it passed. She's fine now, at 15 yrs. Tall and slender. My brother went through a phase in which the only thing he would eat was canned ravioli. The whole family recounts this as a quirky time in his life (he was around 2yrs old when this happened). My poor Mom felt terrible about it, but it was the only thing he would eat. For 1 entire year he ate canned ravioli.
My 10 month old doesn't even weigh 17lbs and I'm not worried. She's at the bottom of the chart but I am tiny at 4'10" and her dad isn't very tall either. She's happy and active.....and she eats when she wants to, although she mostly nurses.

Sometimes when we are very strict about certain things we may make matter worse: what I mean is, if your friend is already going in to each feeding feeling defeated, stressed, and dreading the ordeal....it's not going to help. Also, if it is structured in a predictable way, such as, high chair, bib, at the table, his bowl/plate, etc...then her little one will definitely know what's coming and will act the part. Has she tried feeding him on the floor? leaving a tray of nutritious snacks at his reach? * has she tried 'not feeding him'? by this I mean, not setting a plate for him and just sitting on the floor by herself eating from her own plate making happy faces and sounds about how good her lunch/dinner is. It may make her little one curious and 'want what she has.' I don't know where your friend lives, but if weather permits, she may try eating outside.
And definitely advise her not to wean.
She's not alone in her struggle. LOTS of kids go through this, please let her know she's not a failure. Hugs going her way! Keep us posted.

[annekevdbroek]

Well, 0% doesn't sound good for height and weight, particularly if this represents a falling down the height and weight scale over time. Since you mention that he has other developmental issues, it may be there is a medical or physical issue relating to his feeding? I have a friend whos daughter gagged so severely on anything remotely solid that she fell off the growth chart (even though she was nursing). Ultimately, she benefitted tremendously from OT/PT to help reduce her gagging.

That said, it also sounds like an adversarial relationship has developed between your friend and the doctors. Can she change providers? Is there another hosipital in her region where she could go for an evaluation? Are there *any* recommendations from the health care providers that are helpful that she can use to build a better working relationship with them? I realize that she is very stressed by the idea of taking him to a day program, but she also describes that it makes her feel like a failure, that all they will do is lecture and critisize her... I'm sure it is stressful, but is it also possible that she is reading a bit into what they are saying? I mean, are they actually calling her a horrible failure as a mother (as she seems to be calling herself) or is she having trouble coping with the situation and that is maybe contributing to a hypersensitivity to all advice they try to give her?

I agree that weaning doesn't make a whole lot of sense, given that it appears to be the primary source of nutrition right now (even though if he is truly dropping off the grorth chart at almsot 2 it may not be enough calories for him now). It does seem to be a fairly standard recommendation from doctors when there is any kind of health/feeding/weight issue with many children.. Maybe asking the doctors why they make that recommendation and asking them to provide literature that validates that choice (which presumably they won't be able to do) would help open up the converstatio some?

Best wishes to your friend in this difficulty.

[DanAbimytwomiracle]

Having a DD who went through some pretty intensive metabolic testing, his situation is setting off some alarm bells for me. Maybe metabolic, maybe not, but definitely something in need of immediate attention. Has he been tested for eosinophilic enteritis? It's basically an allergy-type immune repsonse that affects feeding. The only true test I know of is an endoscopy where they take some biopsy samples and test for eosinophil level.

Either way, I don't care how well-renowned the facility/clinic is, if things aren't improving and she feels adversarial, it's probably time to get copies of records and go elsewhere. You can do all the feeding therapy you want, but if there's a medical cause it won't help much. In the meantime, if I were her, I would tell everyone to go fly a kite and stop trying to feed him. Nurse him, offer fluids, and leave food out for him to ask if he wants, but it is truly damaging her sanity and the massive stress can't be good for anyone. That alone, plus the time to step back and just enjoy each other, might help make the next decision clear for her.

[rubyspaz]

Hi everyone...

I happened to stumble upon this thread while googling the Feeding Team. I am Milo's mom.

I just wanted to follow up and fill everyone in.

While I'm not completely satisfied with the Feeding Team, it has gotten better. I think they focus on strictly using behavior modification, which works to some degree but maybe isn't the best method for all children and/or for the long term. I have weaned Milo. He was 26 months old at the time and only nursing 2-3 times per day. He was never the best nurser. He often grazed, refused to nurse, and was highly distractable. While he got some nutrition from breastfeeding, I don't think it was nearly enough for him.

We had testing done to rule out physical reasons for not eating. We tested for most everything mentioned above EXCEPT a swallow study. I was told he would have to drink a large quantity of some liquid, lie still, and allow people to put things in his mouth. He would have to cooperate for all of it because if he got upset, resisted, or gagged, the test result would be unreliable. So we did not feel it was a good idea to subject him to a test that would not tell us much. I do wonder if he has issues managing food in his mouth. Whether it's due to a physical reason or psychological, he seems to gag easily and is so defensive of his mouth.

While things have gotten better, for the most part, it's a roller coaster ride. He has good weeks and then has awful weeks. I feed him pureed table food - literally, I spoon feed him. He is now 28 months and has little to no interest in eating. There is a limited variety of items he will eat by himself: Cheerios, mini pretzel sticks, dry toast, rice (one grain at a time), wheat thins, and small amounts of pasta (like less than a quarter of a cup). For a while he ate animal crackers but has not eaten them in months.

In addition to eating issues, he has issues with elimination. He alternates from constipation to diarrhea. Although I resisted and hate it, he lives on a daily dose of Miralax. It seems to help. I'd love to use fiber as an alternative but that would require him to eat certain foods in certain quantities. No luck there.

He started an early intervention preschool for his delays in speech and fine motor. He meets with an OT and she works with sensory issues with him. We brush him and do other such therapies at home. He is improving, although it often feels like one step forward and two steps back (some days it's two steps forward and one step back)... He has setbacks.

As I weaned him gradually, I think my hormones got a little wacky. I'm not sure if there is any relationship, but my PMS and periods were dreadful while I weaned. I think this may have contributed to some hypersensitivity (to criticism) on my part. Not only was I under a good deal of stress, sleep deprived, sad about weaning, but my hormones made me coo coo for co co puffs. I should add that it was the middle of winter and I need sunlight! For a short while, I went on Prozac and it helped. My mood and outlook has improved tremendously and I no longer need the medication.

Moving forward, he is not progressing as we'd like. I want to see him develop more self-feeding interest and see fewer setbacks. We are in the midst of one now...

I just wish I could understand him better.

Thanks for all the advice and comments.

[Mulvah]

I don't have much time to respond, but have they ruled out Celiac? If so, would you consider ALCAT testing? (Might be hard to get accurate results since he doesn't eat much.)

[Bokonon]

to you mama! What a stressful situation. You should be very proud of yourself for continuing to be such a wonderful advocate for your son. I hope things start to get easier for you both!