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Old 07-08-2010, 05:49 PM - Thread Starter
 
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hi there,

I'm shaken to my core.

Our 6mo DD is only 11pounds. She is *WELL* below where she should be in terms of weight. She is very long and seems to be very engaged in her surroundings. She has excellent lung capacity, as evidenced by her ability to scream.

Her first 3+ months were characterized by lots of crying and fussing.

She was 9pounds when born...and I can't believe she has only put on 2 lbs.

We just started feeding her solids (organic cereal), and breastfeed on demand.

I feel so guilty....

we are going to draw some blood this week, and have another appointment with our Dr. next week.

Any ideas what we can do?

I just googled "failure to thrive in infants" online, and am scared that Margaret will not have a good life.

any been there done that moms? advice?

thank you,
charlene

oh, and I should mention that she was conceived after I completed chemotherapy and radiation treatments - would THAT have any affect?
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Old 07-08-2010, 06:14 PM
 
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Hi there - I am so sorry for the fear you are feeling. Does her doctor have any theories yet? How is the cereal going? Does she seem to be in pain when she screams? I'm sure that others here can provide more specific advice. I'm not sure if this will be any help but I have two experiences with failure to thrive:

One of my three brothers was diagnosed with failure to thrive at 12 mos. He was 12 lbs. He spent some time in hospital under going tests but no diagnosis was ever found. It seemed that his body was not asorbing nutrients properly but they never could figure it out (this was 30 years ago). By 2, he had caught up, though he was always a string bean, and he has been average sized ever since. He went through some odd eating phases such as refusing anything but hot dogs for an entire year when he was three (probably normal toddler weirdness and nothing to do with his failure to thrive). He is now the best cook in our family and totally healthy and normal in every way. He's also brilliant!

A friend of mine's daughter is currently overcoming failure to thrive. She is now two. From about 6 mos, she showed gastro distress and mom had to strictly limit her diet while exclusively breast feeding. The daughter started solids but had a difficult time tolerating them, showing a range of allergic reactions. By 12 mos it was clear that she was not gaining weight and was even losing a bit. Blood tests revealed abnormal liver function and cancer was feared, though ultrasounds did not show any masses. She continued to lose weight and was eventually put on a feeding tube (at home) because breastmilk was not enough and she could no longer tolerate any solids at all. It was devastating and so stressful for my friend, especially not having a diagnosis for so long. However, at last a blood test revealed the epstein barr virus. This is the same fairly common virus that causes mono and chronic fatigue in adults (along with a host of other ailments) but it is rare in young children and causes different effects. The virus attacked her liver. The good news is that it is clearing out of her system. I'm not sure what treatment she's had or if they just let nature take its course but she is now eating solids without too many problems (still some allergies) and gaining well! She's still wee but within the range of normal when you see her alongside other children her age. She's also full of spunk and very happy.

I hope you have some answers soon - the unknown is always so much scarier to deal with.

Happy mumma to my boys Henny Tom (Nov 30, 2008), Arlo Odie (Oct 5, 2010), and baby SISTER! due mid-Dec 2014.
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Old 07-08-2010, 06:18 PM
 
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Is this the first time her weight has been in question or have you seen weight gain issues all along? Have you considered supplementing her feedings either with donated breast milk (this is what we do because I have a low supply) or formula, in case she just hasn't been getting enough calories?

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Old 07-08-2010, 06:40 PM
 
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s mama, FTT is scary!

My 3 year old is diagnosed with chronic FTT, although in his case, we eventually uncovered a cause. He has a chromosome deletion, called DiGeorge Syndrome or Velocardiofacial Syndrome. He has always been small, although not as small as your little one.

I have learned a lot over the past 3 years! The first thing I learned is that FTT has no standardized medical definition. Some drs will diagnose it based on weight alone, some based on height/weight ratio, some will factor in genetics and development before diagnosing it. Probably the best definition is one that considers height, weight, heredity, environment, and overall development. For example, a friend of mine has an 18 month old who is only 18 pounds, but my friend herself is 5-1 and 100lbs maybe; the baby's dad is 6ft and maybe 150lbs. It's pretty obvious that combination of genetics won't grow a huge baby! Her daughter is developing on a normal track, walking, talking, etc. In her case, she is "low weight", but not FTT.

SO...lots of things to consider. Your daughter is definitely low weight. That is definitely concerning. How's her overall development? Is she sitting with support? Rolling both ways? Interacting with her environment? Babbling?

What is her genetics? What size are/were you? Her father? Grandparents? Siblings?

How's her health? You said she's been high needs...any sign of reflux? Food intolerances? Does she seem in pain?

What does her dr think? Drs can be alarmists, but in cases like this, they are trained much more than we are, and they can be helpful. Has the dr noted any abnormalities?

How's her tone? Too floppy, or too tight?

Do her physical features seem normal? Of particular interest would be the shape and position of her eyes and ears, those are often indicators of other issues. When you look her over head to toe, do you notice anything that seems the least bit off? Her feet funny shaped/too small/too big? Any funky dimples, birthmarks, lumps, tufts of hair?

You might want to post this over in Special Needs Parenting. Just recently a mom posted about her little guy who was inpatient for FTT and eventually they discovered a significant growth hormone deficiency associated with a syndrome. It took a long time before it was found, but it is benign, and with growth hormone therapy, he will be fine. That poor mom went through a lot of stress though!!

You mentioned chemo and radiation. It might be prudent to have your breastmilk tested. Usually breastmilk will be complete, even in the case of maternal malnutrition, a woman's body will draw from her own stores to provide adequate milk for the baby. But in your case, your body likely had little to no stores of nutrients. If you are truly nutrient deficient, it is possible that your breastmlk could be nutrient deficient as well. It's unusual in this country, but chemo and radiation certainly could be a potential factor. Try contacting a lactation consultant to talk about that. You can give a sample of your milk and have a creamatocrit run on it to determine its content.

Mommy to BigBoy Ian (3-17-05) ; LittleBoy Connor (3-3-07) (DiGeorge/VCFS):; BabyBoy Gavin (10-3-09) x3 AngelBaby (1-7-06)
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Old 07-08-2010, 08:31 PM
 
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Has your milk supply been examined? With the excessive screaming, I wonder if it's a simple matter of not getting enough calories. Have you supplemented at all? Getting her the nutrition she needs is much, much more important than being EBF.

Good luck--it must be so scary for you.
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Old 07-08-2010, 11:50 PM
 
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Oh please don't feel GUILTY!!! That just breaks my heart and I just can't imagine that you've done anything to her on purpose...and guilt implies intent, so just throw that right out of your mind!

I don't have any experience with this but my beloved aunt whom I have always looked up to, had a dd that was FTT. This woman hung the moon in my opinion and was THE best mother to her 3 children. She tried desperately to overcome whatever it was that caused the FTT...she was very attuned to all of her babies' needs and is so wonderful and gentle with children. She is loved by everyone who meets her.

...my point is, wonderful, fabulous and amazingly loving mommies can have a baby who fails to thrive and it is NOT that mommy's fault. And mommy and baby absolutely can pull out of it and have the amazingly strong bond that my aunt now has with my cousin who is 25 and really thriving as this awesome, strong, passionate and intelligent women whose getting her PhD, has a ton of friends who love her, works out regulary...obviously eventually gained some weight and grew leaps and bounds with milestones! Just don't feel guilty. k?
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Old 07-09-2010, 12:05 AM
 
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mama... thinking healing thoughts (or fattening thoughts) for Margaret and sending

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Old 07-09-2010, 01:24 AM
 
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I was a FTT baby--I was a preemie, had really terrible digestion combined with difficulty sucking/eating--and I'm fine now. (Don't want to toot my own horn, but I'm smart, creative, kind, though pretty uncoordinated... and most of all, I'm happy in life!) I know this experience is not what you envisioned for you or your baby. Just try to love the baby and the family you have and trust that you will do all you can to heal. This doesn't mean you're a bad parent. You and your baby are going to work together to get through this, and in the end it can strengthen your bond.

As others have mentioned, FTT is kind of a nebulous diagnosis. Don't be afraid to seek second opinions, and please please let go of feeling guilty. Regret is useless. Start with right now, and go from here.


Mama to a bilingual (Arabic/English) and cuddly 3 year old, and planning another peaceful homebirth in June.
 

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Old 07-09-2010, 02:21 AM
 
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to you. I have two friends whose babies had trouble gaining weight -- one was officially FTT, the other was just threatened with it. Both turned out to have gluten intolernace (celiac) as well as a dairy sensitivity. It's hard to do, but you may have to have your baby tested for gluten intolerance. There is a stool test that is less invasive, but it's not accepted by most mainstream doctors. Hope you figure things out.

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Old 07-09-2010, 02:15 PM
 
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hugs to you mama! i hope you are able to figure out what's going on soon.

g

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Old 07-09-2010, 02:23 PM
 
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Many hugs to you, mama. My heart goes out to you and your DD. I hope you find the answers you've been looking for real soon!!

One happy mama to 1/06 , 3/10 , and married to my best friend
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Old 07-09-2010, 02:44 PM
 
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Hi geo girl,
I don't have any experience with my own child in this area, but I was nearly "failure to thrive" when I was an infant (around 2-3 months I think) because of nursing issues with my mother. I am now 32 years old and a very healthy woman. Not just because of my lifestyle, I have a very healthy constitution - actually more so than my brother and sister who had no failure to thrive issues. I always made top marks in class so had no deficiencies in terms of learning issues because of the FTT.

Also a friend of mine has a 4 year old son who had some of these issues when he was a babe. He is sociable and very smart.

She is lucky to have a mama that will do everything she can for her... don't worry yourself and don't feel guilty! You might try taking her to a naturopath, homeopath or Chinese Medical practitioner (an acupuncturist who also does herbs). They might be able to discover an imbalance and gently treat it to bring her body back into balance.

Good luck mama
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Old 07-09-2010, 03:08 PM
 
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Just to give you a personal glimmer of hope here mama, my son was FTT for years as an infant/toddler. At age 3.5 he was 20lbs! You'll be glad to know he is now an almost 17yo hulk of a young man, over six feet tall and 200 pounds.

I realize not every story works out that way, but I'm sure you and your medical team will figure out what is going on and make strides in the right direction. Sending lots of heavy calorie thoughts to your precious little one!

GOOD moms let their kids lick the beaters. GREAT moms turn off the mixer first!
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Old 07-09-2010, 03:57 PM
 
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mama! I hope you get some answers soon!

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Old 07-09-2010, 04:07 PM
 
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I would skip the cereal at this point, if I were you, since it's lower calorie than breast milk. Try higher calorie foods such as avocado.
Does your baby have a tongue it?
Check this out for how to boost the calories in your breast milk:
http://www.kellymom.com/nutrition/mi...t.html#changes
Also:
http://www.kellymom.com/nutrition/mi...t.html#changes
Also:
http://www.drjacknewman.com/help/Pro...k%20Intake.asp
And:
http://books.google.com/books?id=Z9X...page&q&f=false

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Old 07-10-2010, 12:26 AM
 
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Do you have a family history of celiac? gluten is passed through breast milk so that could be causing her fussiness and FTT. A lot of babies labeled failure to thrive have celiac but I'm not sure if that is diagnosed later (toddler years). Good luck and hugs!

Amy
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Old 07-10-2010, 09:45 PM
 
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A milk protein allergy could cause the screaming and also irritate the digestive tract enough to inhibit nutrient absorption (so could other food intoleranes, but milk is the most common one). I'd cut out all dairy for a month and see if there's a change (cut soy as well, proteins are similar). I also second the potential celiac/gluten intolerance.

I'd also strongly suggest seeing a lactation consultant. Formula is not always the answer and can make things worse. An LC can weigh your LO before and after feeding to see how much she's taking in a feeding. That's a really easy place to start. You could also have your milk tested for nutrient content but that's a little more involved.
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Old 07-10-2010, 11:24 PM
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My dd has ftt. She had weight loss, no height gain, no head circumfrence gain which tipped us to the diagnosis. She has reflux and a dairy allergy but we knew about those and were treating the reflux. We still don't have a clear answer for my dd (she's 2 now, diagnosed at 9 months) but since she's had height growth and head growth, our docs are mostly just monitoring.

I'd look at dairy allergy and reflux as the first two steps given her screaming. If those are ruled out I'd look into celiacs. We did those, testing for cystic fibrosis, metabolics testing etc. But I'd really start with a dairy allergy and relux.

Please don't google ftt. So much of the literature is outdated and parent blaming which is the last thing you need.
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Old 07-12-2010, 12:48 PM - Thread Starter
 
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Originally Posted by JessieBird View Post
How is the cereal going? Does she seem to be in pain when she screams?

I hope you have some answers soon - the unknown is always so much scarier to deal with.
Hi ladies,
thank you all for your thoughtful, kind responses.

We have had the weekend to digest the information, and currently feel much better about the situation.

DD has definitely put on some weight in the past couple of days. She "feels" heavier, and looks more filled out. I think that I was trying too hard to have a clean house, full pantry, good meals, etc. etc., and lost sight of the most important things - the children. The Dr.s app't was a real wake-up call.

She *LOVES* cereal, and is now eating it twice a day. I'm nursing her more and for longer, and following up nursing sessions with a bottle (of formula) just to make sure she is full.

I should have made it more clear in my original post that the screaming was for the first 3-4 months, and that we are through the colic. I don't think that she has issues with reflux...and hopefully no dietary issues....

I think that she is always going to be on the "light" side, but I was wondering what the consensus is on an acceptable weight for a 6 month old?

We had blood work done, and will find out the results at our next Dr.s app't on Friday.

What would you suggest as our next food? I'm looking for something high calorie, nutritious and non-allergenic.

thank you ladies for your ideas and support, keep them coming!
charlene
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Old 07-12-2010, 01:19 PM
 
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What would you suggest as our next food? I'm looking for something high calorie, nutritious and non-allergenic.

thank you ladies for your ideas and support, keep them coming!
charlene
AVOCADO! Lots of it and breastmilk too. Nurse nurse nurse.

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Old 07-12-2010, 04:54 PM
 
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My DD was 11.5 pounds at 6 months. She was always little, though - 5 lb 11 oz at birth. Her slowest weight gain was between 6 and 9 months, when she only gained a pound. She has never been diagnosed with FTT but it is a constant challenge to keep her weight gain up (she's between 15 and 16 lbs now at 13.5 mo). She was born with a single kidney and that may have something to do with her size, but it's not the only factor. Her dad and I are both fairly small, and I think she inherited a beanpole metabolism from him.

We also have an extremely easygoing pediatrician who ran the PICU for years - he's seen so many really sick babies that he's not disturbed by variations of normal.

If weight alone is your concern, I wouldn't worry too much - if she seems content, engaged with people and her surroundings, and meeting milestones, just continue doing what you're doing.

Re: high calorie foods - avocado is great. You can give certain kinds of oils - our DD LOVES cod liver oil, flax oil, coconut oil. Mix oil or butter into her cereal. Sweet potato with oil or butter. (I think butter is less allergenic than milk itself but I have no direct experience with dairy allergies)

In addition to breastmilk I give DD a concoction of 3 parts goat milk with 1 part coconut milk. High fat and she drinks it right down. Recommended by a nutritionist who says that goat milk is an acceptable formula substitute for infants, especially over 6 months old (but check with your doctor/nutritionist if you think your DD might be sensitive).

Good luck! Keep up the good work!

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Old 07-12-2010, 07:12 PM
 
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AVOCADO! Lots of it and breastmilk too. Nurse nurse nurse.
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Old 07-13-2010, 02:52 AM
 
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do you do breast compressions? sorry i can't add anything else. there were a few threads floating around about increasing the fat in your milk, too.

my dd1 was ftt @ age 2 mos. the pediaidiot said she was allergic to my milk so we switched her to formula. no matter what we gave her, she spewed like a volcano. turns out she had immature sphincters and the little flaps weren't closing to keep the milk in. she was 7.1lbs at birth, 15lb 14 oz at 1. she'll be 18 saturday and she is 6'2" and 175lbs of muscle and basketball star!

s

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Old 07-13-2010, 10:59 AM
 
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to you. I have two friends whose babies had trouble gaining weight -- one was officially FTT, the other was just threatened with it. Both turned out to have gluten intolernace (celiac) as well as a dairy sensitivity. It's hard to do, but you may have to have your baby tested for gluten intolerance. There is a stool test that is less invasive, but it's not accepted by most mainstream doctors. Hope you figure things out.
I've been researching celiac recently for my mom, and have read that FTT is often undiagnosed celiac or gluten issues. That being said, I've read that they've come a long way with testing and that there is a blood test now that is very accurate. I don't know if you would need to have the villi test done.

Stacey teaching teens to read & write... Daddy plays ska, DD1 (7/05) loves trees & princesses, & DD2 (3/10) loves mommy-milk! Please get your kids tested for lead.
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