Don't know where to go, or what to do.

[starparticle]

:

I'm just feeling so overwhelmed - I'm not even sure if I'm posting in the right place.

DS is 11 months and not growing. We know something is wrong, but we don't know what. It seems like we have had every test under the sun, and I really trust our Ped. We've worked on his nutrition so much I dread mealtimes, and I'm so confused about what to do/not do.

I feel like he is different, but I'm not sure how. He is so alert, busy, and extremely social. He is meeting all his developmental milestones, and exceeding when it comes to talking/signing. He = Joy!

I think he is eating well, but he is losing weight. I can't help but think I'm not doing something right. He is now back at 15 pounds at 11 months, which (as far as I can tell) is very very small. He eats 4 meals a day, usually 1/3 to 1/2 cup of gruel, and finger foods after that. Nurses on demand (usually a few big meals a day, and twice at night). My supply is good.

Can any of you more experienced Mamas point me in the right direction? Where can I go to learn more? What docs should I be calling?

HELP!

(and thank you for listening)

[alegna]

Explain what you mean by not growing. Not gaining weight? Not getting longer/taller? Head not increasing?



-Angela

[starparticle]

Explain what you mean by not growing. Not gaining weight? Not getting longer/taller? Head not increasing?

All of the above - he was born full term slightly below seven pounds. He was back to birth weight at two weeks, and has been slowing down from there.

His length is 27 inches, weight just above 15 pounds, 18 inch head. For the most part, he is pretty skinny (length for weight) but proportionate. He looks like a cruising, pointing, talking 4 month old. He is minature!

He has been nursed on demand (not that he ever asks for it...he almost never acts hungry), no paci, no bottles, co-sleep, etc. I've been to the best OT in the city, and had our latch evaluated. I make lots of milk, but he doesn't drink very much (but he acts satiated, lots of poopy/wet diapers, I don't feel he is hungry).

Anyways, this is all a conundrum to me, our doc, and everyone we talk to. I don't know where to turn, and I feel like I'm just waiting for some mysterious diagnosis. :

[alegna]

Okay- just tossing ideas out here, feel free to disregard:

how big are you and dh? how big were you as babies?

I would back off the solids, esp. lower fat/calorie ones (gruel/cereal) and increase nursings. For solids I'd use high nutrition/high fat when possible. I would do this by not spoon feeding for awhile. Then only the higher nutrition foods.

When did his growth stop? You mention weight loss- how much? in what time period? on the same scale? Is he still growing in height/length/head circumfrence?

-Angela

[starparticle]

thanks for the replies Angela, I appreciate it!

how big are you and dh? how big were you as babies?

I would back off the solids, esp. lower fat/calorie ones (gruel/cereal) and increase nursings. For solids I'd use high nutrition/high fat when possible. I would do this by not spoon feeding for awhile. Then only the higher nutrition foods.

When did his growth stop? You mention weight loss- how much? in what time period? on the same scale? Is he still growing in height/length/head circumfrence?

We aren't big. Actually, we are teeny tiny. I'm 4'10'' and DH is 5'5''. BUT we have both of our growth charts, and DS is significantly behind us both in both length and weight. And we were both BF babies, so that isn't the issue.

The gruel he eats is ground millet or quinoa with coconut milk or flax oil. Finger foods are dense fruits, we offer them after spoon feeding since that is the only way to actually get anything in. If he just self fed, it mostly gets flung (which wouldn't be a big deal if he was gaining....).

As for nursing, I offer all the time (as in constantly), he refuses. So he eats solids with us at mealtimes.

The weight loss is in the past month, could be explained by how much more active he has become, but STILL, why won't he grow???

[townmouse]

I looked at your blog, your baby is beautiful!

Does he have a very round potbelly? It seems he may have dark circles under his eyes.

My boys all have celiac disease, and my youngest stopped growing and started losing weight before he got diagnosed. (he's 27 months now and has totally caught up)

Did you do any bloodwork to screen for celiac?

[alegna]

Well, he could just be small. It's very normal for growth in breastfed babies to slow in the second half of the first year. My dd grew like crazy, then weight gain STOPPED. She weighed the same thing from 9mo to 22 mo. Seriously. Didn't gain a pound that whole time (I don't have it in oz, we don't do WBV, just weighed her on our bathroom scale)

Another thought- is he vaccinated? I know I've read one mom here had a baby stop growing after a round of vaccines.

-Angela

[alegna]

Another line of thinking- I noticed in your sig. reference to your dd. Do you know the cause of her death? Have you had a metabolic work up on your ds?

good luck!

-Angela

[starparticle]

Wow, you ladies are on it!

Celiacs - we did screening for this. I was also on no wheat/dairy for the first 6 months (didn't help). I also wonder about the dark circles - he gets them alot. Allergies maybe?

Vax - No vax.

Luna - She had a form of dwarfism. This is on my mind. Leif clearly doesn't have her form, or any of the other obvious dysplasias. But we are carriers for her condition (25% reoccurance) and I worry he has a mild version (dwarfisms can be spectrum). We are going to the skeletal team around 18 months (that's when it is easier to diagnosis, if anything).

Keep the ideas coming!! Anyone have experience with food aversions or sensory issues that keep babes from eating?

[townmouse]

I have always heard that dark circles means allergies of some kind.

If you think he just doesn't like to eat, or has some sensory stuff going on there, ask this question on the Special Needs board. Those mamas are experts!

Celiac isn't just wheat, it is also oats, rye, barley, and things made with chemicals that are gluten-derived. If it were me, I'd give a 30 day trial of zero gluten and see if it helps. (he may be too young for accurate screening, according to what I've been taught. I'm not an expert!)

But it sounds like you might have better leads with the dwarfism thing and the reluctance to eat.

Good luck! I'll be watching out for your posts about this, and sending healing thoughts and good wishes for your precious baby Thank you for sharing about Luna

[alegna]

The dwarfisim spectrum could be in play.
also though-
What all metabolic issues has he been screened for?

-Angela

[starparticle]

What all metabolic issues has he been screened for?

We did milk protein, wheat, thyroid screen, and liver panels. We've also had a swallowing study and chest xrays.

We've been down the silent reflux path to no avail - meds, elevation, etc. Didn't ever make a difference (and my internal mommy monitor doesn't think it is reflux).

He's had craniosacral, chiro, and seen an OT about his eating issues (or more accurately, his lack of showing hunger and refusal to eat/nurse). I should mention that he is in general fussy and had "colic".

He seems too distracted if anything, when I can get him to nurse it is in our bedroom, lights down, laying next to me. Other than that, forget it.

Thanks for all the support, I don't know where to turn.

BTW - I don't expect to get an answer here, I understand that this is a complicated issue with no or many solutions. Really, I'm hoping to hear from some others who have been down this path and to hear about what helped them the most (in terms of docs or support).

:

[alegna]

Okay- then it sounds like they haven't really looked for anything metabolic. It sounds like he is eating well, just not gaining a lot, which is what leads me to think metabolic (I expect tomorrow mamaverdi will find her way here and be SO happy I already suggested this )

Has he had any medications? (even tylenol and the like) Did he have any unusual reactions to them? Does anyone in your family react in an unusual manner to any medications?

good luck!

-Angela

[Cinder]

Originally Posted by starparticle

All of the above - he was born full term slightly below seven pounds. He was back to birth weight at two weeks, and has been slowing down from there.

His length is 27 inches, weight just above 15 pounds, 18 inch head. For the most part, he is pretty skinny (length for weight) but proportionate. He looks like a cruising, pointing, talking 4 month old. He is minature!

He has been nursed on demand (not that he ever asks for it...he almost never acts hungry), no paci, no bottles, co-sleep, etc. I've been to the best OT in the city, and had our latch evaluated. I make lots of milk, but he doesn't drink very much (but he acts satiated, lots of poopy/wet diapers, I don't feel he is hungry).

Anyways, this is all a conundrum to me, our doc, and everyone we talk to. I don't know where to turn, and I feel like I'm just waiting for some mysterious diagnosis. :

So he is completely not growing, or just growing slowly?

We did every single test under the son to figure out why my DD is so so so tiny, she was also 15lbs at 1, 17lbs at 2, 21lbs at 3, and now at 4 is 27lbs. Nothing was wrong that we could tell till about 3 years old, then we discovered she had sleep apnea (mostly because between 2 1/2 and 3 she didn't grow at ALL) and humongous tonsils. She had her tonsils out and started growing again, but she's still tiny, about 5th percentile, if that, and this is the first time in her entire life she has been on the growth charts at all. We suspect her to be about 4'9" as an adult.

[Cinder]

Originally Posted by starparticle

He's had craniosacral, chiro, and seen an OT about his eating issues (or more accurately, his lack of showing hunger and refusal to eat/nurse). I should mention that he is in general fussy and had "colic".

Sorry for two posts, but I've read more and we've been down this path as well, though not with DD, with DS.

DS has a lot of sensory issues and one of them seems to be an inability to feel/recognize pain, so he just never feels hungry. Another one seems to be that he hates the feeling of food in his mouth. So we go days and even weeks at a time of him not eating.

Anyway, the first time he ever stopped eating altogether was 11 months old. We went 2 days of nothing at all, not a single drop of anything crossed his lips when we took him to the ped who found nothing wrong...we kept trying and it got to the point of if he didn't eat/drink something, anything, soon he would need a feeding tube... And that's when I started tricking him. I'd remove his pacifier from his mouth when he got into a deep enough sleep and replace it with my breast. I'd do this at like 7:30 pm (putting him to sleep around 7pm), again at about midning, again at 3am, and again at 6am, if he chose to sleep in I'd also do it again at 9pm. Then I'd do it again around 2 (down for nap around 1). So I was getting breast milk into him.

That eating strike lasted about 5 weeks...he's went on eating strikes about 4 times since then...sadly he weaned at 23 months during another eating strike and tricking him didn't work anymore (I tried many times)... But we have figured out a good way to get calories/fat/nutrition into him without him having to eat if it comes to that. We give him orange juice with calcium, then carnation instant breakfast (cause he refuses totally toddler (from whole foods and definitely what I'd go for first), pediasure, ensure, etc), then kefir, then v8 fusion or Vruit juice, then miso soup(strained with no tofu, seaweed, green onions so it works in a sippy cup)... It works for the most part if he isn't in a complete eating/drinking strike...in that case I make him take small amounts of liquid through a syringe a few times an hour.

It's not foolproof, he lost 9lbs over the summer...but now that he is back in OT full time (school started back up)he has gained back 4 of that and is now 2 1/2 years old and 28lbs....

[mamaverdi]

You need to have these tests run on your baby and quick:

Plasma Amino Acids
Urine Organic Acids (Quantitative)
Acylcarnitine/Carnitine Profile
Creatine Kinase (you need the one where it is an absolute number as well as broken down)
Ammonia
Betahydroxybutyrate
Liver Function Tests
Basic Metabolic Panel

Stop giving the flax oil....Have you noticed a decrease in weight since adding this? Start giving Olive oil and avocados.

I'm going to sub to this thread. Tell me a complete history of your child's health. Everything. Anything weird at all.

I will google.

This sounds just like my sons. Honestly, exactly.

Sleep apnea could be it for sure, especially central apnea....it's not fun to do a sleep study for a little, but possible.

[alegna]

See? I told you she'd find her way here....

-Angela

[mamaverdi]

Want to say this too. Get the results of the tests yourself. Get the xray reads yourself. What does his heart look like? Liver?

Don't trust the "it's within normal" statements because with metabolic disease, slight issues of "normal" are not "normal."


Cinder, did your dd have central events or only obstructive? Did you use a pedi sleep study place that was board certified?

[mamaverdi]

Angela.

[bri276]

have you seen an endocrinologist or geneticist? I think you might be onto something with the dwarfism possibility. at least, it should be investigated knowing your genetics and the issues he's having now.

my dd was on the 25th percentile, going steady until 6 months where she abruptly stopped and her length plateaued. she has a rare chromosome disorder so short stature is to be expected, but growth failure *lengthwise* is not normal. we now have her on growth hormone. I doubt that has anything to do with your son because most GH deficient kids will be disproportionately chubby for their size. but- I do know how it feels to worry when you don't see them growing.