3 Year Old Daughter Not Growing

[Stardustine]

My daughter was born perfect length and perfect weight and was absolutely perfect in all ways until about the time we *had* to push solids on her (thanks to her doctor who told me, falsely, that breast milk loses all its nutrition after the baby is 12 months old, blah blah, "you have to make her eat", etc.).  She was on the 50% percentile for both length and weight.  The introduction to solids was worse than rocky. The doctor stressed me out, so I was stressed out, then DD became stressed out as well.  All that led to her being a really fussy and extremely picky eater.

 

Then we started noticing she wasn't gaining weight so well and then even that her height is starting to go down the chart.  From being on the 50% percentile for both weight and height at one year old, she's now under the 3rd percentile for height and on the 5th percentile for weight.

 

Yes, she is definitely very picky and fussy and has only few foods she will actually ingest and will most often not try new things, but I've been told by many folks that she actually does eat well enough - her teachers at the daycare as well as our former nutritionist, who just told me to add a little more fat in her diet.

 

Well, now it's been two months since she grew anything at all - not even a millimeter.  And her weight started to fluctuate insanely.  She went from weighing 11.8kg to weighing 11.3 in just a month and then up to 11.5, where she's staying for the time being.  

 

We've been to a gastroenterologist, who told us that he thinks she's just picky and that she will eventually grow out of it.  He also thinks it's genetic.  Full stop.  

 

We did put DD on gluten-free (or 99% gluten free, since we found out the daycare was using the same butter for all the kids, facepalm) diet for about 7-8 weeks and her weight did jump up a little, which was amazing, but our gastroenterologist told us to take her off it so that he could (again) test her for celiac (blood tests only, we're talking here).  Both tests came out negative (after 3 straight months of full on gluten - she loves pasta and bread), but her genetic test came out positive (yes, we already know it's in the family - her paternal grandmother has full-blown, confirmed celiac disease).  And that was that.  He told me I should calm down and that my daughter is fine.  Well, she is not.  She is STILL not growing properly nor gaining weight.  He said she might have some untestable sensitivity, but he didn't offer me any solutions - the main one I need is a piece of paper that would allow so that our daughter gets gluten-free food at her daycare - which he refuses to give me because she does not have a confirmed celiac disease (it's against hospital policy, da da dummmm) …  Does this even make any sense to you?  Not to me ...

 

She still complains about achy tummy around many meal times, sometimes she gets diarrhea, sometimes she's stopped up, she is the same size as an average 2-year old even though she's 3 years and 2 months and she has hardly any hair.  Everyone is absolutely shocked when I tell them she's 3 years old.  She's also really pale and has dark circles under her eyes, not to mention how dry her skin is all over her body.  She also has a couple of spots where she has eczema that can be sometimes itchy.  She also has slightly protruding belly that looks small because she is small, but it's still protruding belly that I don't see in other children her age.  And she's so fragile looking … it's almost scary.

 

I'm at a loss here and I'm freaking out a little as I don't know what to do … should I put her on gluten-free diet and take away all the foods she loves like bread? She's become even pickier now than she was a year ago (didn't know that was even possible).  I've tried giving her gluten free bread, but she hated them all and would never eat more than a couple of bites …. she's so picky she won't eat normal unprocessed meat or any kind of veggie …  

 

Is it possible her failure to thrive is caused by something else besides celiac disease/gluten sensitivity?  If so, what??

 

What would you do?

 

Signed: Anxious mom at the end of her rope ...

[kareng]

I am just going to comment on the growing part.  My kids wouldn't grow for several months and then suddenly grow.  For example - I would take one for a yearly physical and he would have grown a small amount in a year.  2 months later- take him in for a sore throat and he grew 2 inches.  So I don't think 2 months of now growth is necessarily bad.

[Stardustine]

kareng - I totally agree and I also wouldn't be concerned over that if she wasn't growing at a rate of a snail already and didn't fall from being on the 50% percentile to under the 3rd one … it's actually 1.1 percentile according to WHO calculator.  That can't be ok ...

[ravenwoodglass]

No I agree with you that is definately not okay. Could you post what tests were run along with the results and reference ranges. 

Children as young as yours do tend to have higher false negative tests, if memory serves me. Don't know if that could be the case for her.

Can you get a second opinion? Have you talked to her ped about the possibility of getting a 'script' for gluten free needs at daycare? It doesn't have to come from a GI doctor and neither does diagnosis under some circumstances. If you can't get a diagnosis based on tests your ped has been seeing her for these issues and if you have to take her gluten free without a diagnosis then the ped may diagnose based on her good response to the diet. 

Losing that much ground on growth along with her other issues does, IMHO, sound like she could have a problem with gluten. 

[Stardustine]

No I agree with you that is definately not okay. Could you post what tests were run along with the results and reference ranges. 

Children as young as yours do tend to have higher false negative tests, if memory serves me. Don't know if that could be the case for her.

Can you get a second opinion? Have you talked to her ped about the possibility of getting a 'script' for gluten free needs at daycare? It doesn't have to come from a GI doctor and neither does diagnosis under some circumstances. If you can't get a diagnosis based on tests your ped has been seeing her for these issues and if you have to take her gluten free without a diagnosis then the ped may diagnose based on her good response to the diet. 

Losing that much ground on growth along with her other issues does, IMHO, sound like she could have a problem with gluten. 

 

Unfortunately, I don't have that information.  The way it's done around here is that you get a test done - they tell you absolute minimum about it and then you receive a phone call with the results - no numbers, just if it's 'positive' or 'negative.'  I'm going to try and get all the test information together with numbers, but it might be hard.  DD doesn't have a specific pediatric doctor - she's seen several - we go to a clinic where each time we get a different doctor, unfortunately.  So, that way it's hard.  She's still not been tested for hormone deficiency, which is another thing that could be causing her slow growth … But we have yet to see the endocrinologist.  I feel like everything is taking way too much time and I'm starting to get seriously anxious.

[frieze]

I take it you are not in the USA?

[Stardustine]

I take it you are not in the USA?

No, I am in Sweden.  I'm hopefully getting all the test result copies tomorrow as we're seeing a nutritionist that's housed in the same department as the GI doctors.  

[tshep]

Oh you poor thing,  I relate to this SO much!! At age 2, my DD was not growing like the other kids.  She dropped down into the tenth percentile. Every meal was a huge battle, she never wanted to eat, and afterwards would complain that her stomach hurt, or even half way through the meal.  We couldn't figure out if she was trying to get out of eating, or what was going on.  She bruised easily, we battled week enamel on her teeth, dark circles, restless sleep, and NO hair growth. It finally got so bad she would be up half the night screaming and crying in pain.  I kept taking her to her pediatrician who kept telling me that she is fine, and to simply put her on long term miralax and that she would "grow out of it." She thought I was just not pushing "healthy" foods enough. 

"Just give her her food and she will eventually eat it when she gets hungry enough."

Even my mom and friends and husband thought I was over reacting and stressing out over nothing, but I simply could not ignore my "mother's instincts."  I finally called the pediatrician and told them that they either run more tests, or I find a new doctor.  They ran a stool sample and found evidence of inflammation and finally referred me to a GI specialist. As it turned out, her hcg levels were over 100!! (he explained to me that a result higher than 10 is considered a positive result for celiac.) All the other levels tested were similarly 5-10x higher than even a simple Celiac diagnosis.  While it was a difficult diagnosis, I can't explain the relief that I had done the right thing to continue to fight for my daughter's diagnosis. 

Even still in this day and age, doctors so often dismiss concerns and symptoms as "over reactions" or "all in our heads." But I commend you for continuing to fight for your daughters health.  My daughter is now 4, and still on a slow slow road to recovery.  Still thinner than I would like, still has never gotten a haircut because of how delayed her hair growth became.  Still bruises easily.  It will take time, but our check ups keep me positive that we are at least on the right track.

Like the others have said, the negative blood test doesn't exclude a celiac diagnosis for your little one.  I would fight for an endoscopy. Of course it could be something else too.  If your gut is telling you something, listen to it.  You know your baby better than anyone else, so don't let anyone try to tell you it's in your head.  You're an awesome parent!

[Stardustine]

Hello everyone.  An update:  we just returned from an appointment with a GI specialist and dietician.

 

So, they've decided they will try to put her on one to two months of milk/milk protein free diet as her allergy tests showed elevated antibodies to cow's milk - still not over the 0.35 it takes, but very close - the result was 0.33.  They thought it's best to take out the milk protein first.  

 

I'm overwhelmed.  I've cried.  Milk is in EVERYTHING she eats.  She love cheese, milk, macaroni and cheese - milk protein is in 99.9% of all that she eats and she is SO INSANELY PICKY and won't try new things.

 

I'm spying disaster with this.  Of course, they told us to stop with the diet if she doesn't eat well in 3 days, but I'm simply just overwhelmed.  I was trying to talk them into trying gluten-free diet for three months, but they simply thought it was not a good idea.  

 

I just want to lay down and cry and cry … Btw, she hasn't grown anything and lost weight.  I'm, honestly speaking, desperate.

 

That is to say she doesn't have any such insane problems like most of the children that seem to have celiac disease - she doesn't cry unconsolably because of pain in her tummy, she's fine and seems like a totally healthy child - except for the paleness, dark circles, hardly any hair and the fact she looks, weighs and measures like an average 2 year old at the age of 3 years and 3 months.

 

What do you think of this approach?  

 

Btw, I didn't get the result copies of the gluten tests - it was so overwhelming today I asked about them, but at the end forgot to remind them.  We're going back on Monday to do nutrition uptake tests (levels of iron, etc. in the blood) - the last ones done at the end of last year were supposedly fine, except for vitamin D (we live in Sweden, so that's common).

 

I need a hug and I need a miracle.

[nvsmom]

(hug)

 

The tests for celiac are:

tTG IgA and tTG IgG - anti-tissue transglutaminase antibodies

DGP IgA and DGP IgG (a new test that is the best for detecting celiac disease in young children) - deaminated gliadin peptide antibodies

EMA IgA (positive usually only in advanced cases) - endomysial antibodies

total serum IgA (a control test)

AGA IgA and AGA IgG (older and less reliable tests) - anti-gliadin antibodies

 

If those were not the tests done, then she was not tested for celiac disease.

 

In order for the tests to be accurate, she needs to be eating the equivalent of 1 to 2 slices of bread per day for the 8-12 prior to testing. Do not go gluten-free if you are doing more testing.

 

That being said, if you think she could have a problem with gluten and there are no testing options available to you, then start the gluten-free diet without a doctor's blessing.  You really do not need it. Gluten is NOT needed by humans and has no nutritional benefit at all. It is mainly in foods of convenience, and makes baked good "fluffy".  Some gluten containing foods are fortified with vitamins and minerals, but you could easily "fortify" her with a good multivitamin... The reason they started fortifying gluten containing foods was because it had no nutritional value and people were getting sick because they relied on it (baked foods) too heavily.

 

My kids tested negative on the one test offered to them but I suspected celiac disease in two of them. I made them gluten-free and their health has improved. My oldest was falling off his growth curve (from 80+ percentile to 35-50th percentile) so I did not want to wait for doctor "proof". He has not regained his spot on the chart but at least his growth has stopped slipping and he is hovering close to 50% (which is quite small for my family).

 

If you do decide to make her gluten-free, keep a symptom and food journal. Write down all foods and activities (that would expose her to allergens and such) for the next few months.  Going gluten-free does not always show a fast improvement.  It can take months of slow change before one notices they are improving, so the journal is helpful.

 

I would wait a week or so after removing milk before going gluten-free so you can tell what sort of affect that has on her.

 

Try not to despair about the milk. You will find alternatives.  There are good milk substitutes out there. Daiyo cheese melts well but I am not sure if you have that out there. Nutritional yeast is a good parmesan substitute.  Coconut yogurts aren't bad, and some dairy free icecreams are very good.

 

Hang in there.  You can do it!

[ashleyld]

I cant really help you but i totally relate. 
My 3 year old has has issues since birth. She was 100% breast fed for 12 months and struggled with food until 2. She basically would not eat anything but peanut butter and cheese. She constantly had funky poops and she grew at a super slow pace. She was always 25th %. When i finally had enough of the constant complaining about her tummy i asked for a referral and the GI ran every single test for stomach issues. She came back positive for celiac. Since going gluten-free she is so much better. She has filled out and gained 3 lbs in 3 months! its amazing. 

I also agree with the others. Kids grow in spurts. But going from 50th to 3rd is not okay. i would ask for a second opinion.

[SMRI]

Kids do slow down around 2 or 3 and might not grow or gain weight for months, so that in itself isn't that concerning.  She could just be small, again, not concerning.  What I am wondering, however, is if she has been tested for allergies.  The symptoms you describe could very well be various allergies, not just to foods, but other things, especially the dark circles and skin issues.  Continue to research the celiac side, but don't stop there if nothing is matching up with her tests.  My next stop would be an allergy specialist.

[mommida]

Stardustine

 

Can you give me a few more details?  Look at her tonsils and describe them to me.  Smell her breathe and describe.  Ask her to tell you where her belly hurts and trace it with her finger.

 

What exactly do you mean by "picky eater".  Make sure you know some of the signs of PICA (iron deficiency that causes the desire to eat "non-food" items.  Ice chewing, eating dirt/sand even walls in the house.  Chewing food and then spitting it out are some signs of PICA)

 

You asked if there are other things that can cause "Celiac like" symptoms... yes.  H. Ployri, other food intolerances, Eosinophilic Esophagitus, gut infection/ imbalance, among other things.  Most doctors would rely on a endoscopy with biopsy to diagnose or rule out most issues with these symptoms.

[eebright]

My daughter isn't growing well either... 5% and then 8% and horrible constipation since 10 months old.  Peds just kept saying to give her miralax and that she was petitie.  Now we are dealing with speech delay.    I am wondering if it is ALL related... not growing, stomach issues and now a development speech delay. Has anyone else dealt with this? We having eliminated the gluten and the cow dairy and stopped the miralax on our own.   And, on day 10 today and no more constipation. Yeah!  Now, wondering if it will start changing her behavior if she starts feeling better and the speech will come along. We have checked her ears, had tubes put in, hearing tests, etc. and have gone speech therapy for 4 months.   Just started the diet changes on 1/15/15.   Any other suggestions?

[mommida]

Keep a food journal to keep track of the improvements.  You may have to prove the importance of the diet restrictions later on for school and such.  It will help track down sources of cross contamination or other food intolerances.

 

Always have safe snacks on hand!  Even "junk" food treat rewards to replace all the daily offerings kids are given need to be on hand.  You never want the diet to seem like a punishment.