Pregnancy & Motherhood Forum

by **LovesMyBoyz** » Fri Mar 27, 2009 10:01 am

My son was diagnosed earlier this week with Failure to Thrive. My son was born 3 months early. He is 21 months old but only weighs 20lbs 8oz. He is small for his age obviously. Not much baby fat on him. Though he is healthy. Everyone just thinks he is younger. He loves playing at play group. He is a little developmentally delayed though he has seen specialists since he was born. He was using speech and then stopped. No one knows why. He does have some extra fluid in the center of his brain. We do know that it causes some issues.

Has anyone else had this problem? His new Pedi has no recommendations for me. He just sent us to a new specialist to have a more in depth evaluation. Our pedi is not to concerned since DS1 is so healthy. No one else has showed any concerns other than mild concern over delays,. Then again everyone but my new Pedi has been with my son since birth.

Still it bugs me. I know all to well what people think when they hear failure to thrive. They think you are not caring for your child, he is sickly and can barely move, even when that is not the case. I just though maybe there might be another mom that has had a child like this.

by **PixieB** » Fri Mar 27, 2009 9:23 pm

I know exactly where you're at

My monster was also born three months early. She's currently 20months actual/ 17 months corrected weighing 16lbs 14oz. Similarly, Talia's bright and active, playful, all there intellectually and developmentally.

I very rarely tell people about her being FTT because it's just not worth it. I hate the label because it completely dismisses her vibrant personality and perfectly normal development. At our 12 month corrected follow up clinic she was perfectly on track and even a bit ahead in some of her development.

I actually dropped my old paed when he gave completely impractical advice for her lack of weight gain. "Get an extra 300mL into her a day" :shock:

We got far better advice and support from the nutritionist at the hospital and seeing them was covered by medicare rather than the paed charging $120 a visit :roll:

So to the actual useful advice we got. Make every mouthful count. It's not so much about getting them to eat more food, just super-charge the quantities they do eat. This means using full fat milks and yoghurts, creams and cheeses, custards etc. Dairy is good for extra calories. Add butter, oils and cream to his food. Start with small amounts then increase the proportion. Currently Talia gets 50:50 double thick cream to yoghurt/custard as dessert. And I add a good teaspoon of butter to her main meals.

Offer dessert with every meal. Offer cheese for snacks. Some FTT prem mums I know swear by adding protein powder to food to further boost the calories. Choose your brand according to the highest calory/fat count on the label, this is getting harder and harder with the obsessive anti-obesity trends. Talia's breastfed but the formula fed prems I know often have their formula made up with cow's milk instead of water, and/or made up at 1.5 strength.

We had to push our paed to get an answer as to what the actual threat of FTT is. It only really becomes an issue when their head circumference also drops down the charts on growth. At its worst that can restrict brain growth and development, but I think it's got to get pretty bad before it reaches that point, especially given my monster is still a good 1kg below the standard charts even for corrected age and she really is doing brilliantly developmentally.

I wouldn't be too stressed about him stopping using words for now. Keep encouraging him to verbalise, and praise him overenthusiastically when he does talk (think muppet waving happy dances around the lounge room

Children really do love that as enticement to do something). Hopefully he'll pick up verbal play again soon.

I'm more than happy to share whatever bits I've picked up along the way on this

Whatever happens, don't blame yourself. It's not easy being the parent of a prem, especially of the extremely early variety. Your boy is vibrant and healthy and incredibly active (burning through so many more calories). You're doing a great job.

by **dixiechicken** » Sat Mar 28, 2009 6:37 am

Pixie gave you some very good advice. We have the same issues at 22 months because of Wade's cerebral palsy. He burns so many calories because his muscles are always "on" so to speak. At his last spasticity clinic visit--where a rep from each specialty gathers together to ALL assess Wade TOGETHER--we were told to increase his caloric intake. One of the nurses gave us some quick and easy ideas. Here are a few we do on a daily basis. Add yogurt or sour cream to food. You can put sour cream in almost anything--spaghetti sauces, mac and cheese, eggs. He gets oatmeal every morning for breakfast, and we just add a package of that carnation instant breakfast to his oatmeal along with whole milk. We put strawberry or chocolate nesquik powder in his milk. Peanut butter works well too. Put a layer on graham crackers for snacks. That carnation instant breakfast can be added to ice cream too. Use it in the blender to make a shake. Put yogurt in ice cream to make a shake. Cook with butter and oils. Add butter to everything--eggs, noodles, potatoes, veggies--whatever.

When I'm shopping, I do what Pixie mentioned. I buy the things that have the most calories. It's especially hard, like she said, because of all this low fat/non fat stuff. Compare yogurt containers and get the ones with the most fast/calories. Same with sour cream and milk and such.

I try not to make it a big deal. If I really thought about it, I'd go crazy because I was determined to feed Wade healthy stuff and not go the full force sugar route. But, you have to do what's best for your child. This will pass. The hard part is, I'm trying to loose weight while trying to keep weight on Wade. Not a good combination! :wink:

by **LovesMyBoyz** » Sat Mar 28, 2009 11:34 am

I have only shared it with a few people and on several boards to see if there is anything else I can do for him. DS 1 has had a nutritionist his whole life. She has never mentioned protein powder. I will ask her about it.

We use so much yogurt with DS1 that I actually make my own. I make it with whole milk. He has it added to his milk cups. He also gets formula several times a day still.

I know what you mean about making every bite count. Everyone agrees he eats very well for his size, but still I would like some more fat on him. The only thing I do not do that was recommended (by WIC 3 times now) is the gravy on everything. The nutritionist agrees with me. Only because while it adds fats, it also adds way to much sodium and it really teaches them bad eating habits. I actually know someone who's mother use to do it and he has to have gravy with most foods still or he will not eat them. And he is 25. Not to say DS does not get gravy. He does, just not on everything. I add it to potatoes and roast and what not. I do add cheese and real butter to quite a bit for him. We just started with the peanut butter. DH has a nut allergy so we had to be careful.

DS1 does not have a problem with small head, his is actually a hair on the large side due to extra fluid in the center. I know it causes some of the delays and his on and off other problems with vision.

Thank you both! It makes me feel so much better knowing my son is not the only one. Thank you for the tips as well. I tried asking around the local preemie group and no one else had the same problem. All of their kids grew like mad.

by **momoftwins** » Sat Mar 28, 2009 5:50 pm

I have never gotten an official diagnosis of failure to thrive, but my daughter will be 3 in a couple of weeks and she only weighs 24 libs. She is healthy and active and eats very well, she just doesn't gain wieght. Her twin brother looks huge beside her. She was ahead of schedule in motor skill developmental milestones, but has been a little behind her twin brother in speach. She didn't start to talk until well after she was 2 yrs old, but even though she didn't talk she seemed to understand what we were saying to her and follow our directions when we told her to do something. I too was sent by my regular pediatrician to see a specialist b/c of Megan's small stature and b/c her fontanelle (soft spots) closed when she was only 7 months old, instead of about 18 months. the specialist did a 3D CT scan and all kinds of other tests and she told us that Megan was fine and was just going to be a small person. She said that based on her size now that she would most likely be about 5ft 3 in tall as an adult.

The specialist told me that as long as a child is healthy and active and wasn't losing weight that I should not be worried. I just keeping buying 18 month clothes and when people ask me how old she is I smile and say "almost 3". You should see their faces.

by **ZiggyGirl** » Sun Mar 29, 2009 3:02 am

Lil bit has had FTT as an official diagnosis since she was about 11 months old. Much of her problem has been food "allergies" (sort of, but that's another issue), but she was also recently diagnosed with delayed gastric emptying. She was eating appropriate amounts for a toddler, but not gaining weight. Turns out that her body needs more calories than average, but her stomach was taking so long to empty into her small intestine that she felt full all the time, and her body didn't tell her brain that she needed to eat more. She has to take meds for it, and they're working, but it's still frustrating trying to get enough fat and calories into her.

A nutritionist friend of mine told me it's more important to focus on fat intake than protein intake at this age, since their brains are growing so fast right now, and that's what it takes to develop normally. Protein satisfies the appetite for a longer time, too, so you risk actually making him LESS hungry if you use too much protein powder.

Eggs are a good source of both fat and protein in balanced amounts.

Use dips. Lil bit loves sour cream with almost anything savory. She dips her meats in it, her potatoes, veggies, etc. If she's not eating something well, I'll ask if she wants some dip. I don't usually start out with it on her plate for fear of her not eating ANYTHING without it later. LOL Ranch dressing is another kid-friendly dip.

Avocados are great for young kids. Lots of healthy fats and calories in them.

And if all else fails, there's a fat/calorie supplement called duocal that mixes completely into almost any moist food. It's expensive, but it works, and doesn't change the taste/texture of moist foods. It can make milk a little funny tasting, though, and Lil bit refuses to drink it if it's in there!

by **PixieB** » Tue Mar 31, 2009 11:12 pm

Another powder additive to boost calories is called CarbPlus. And try adding cream to the yoghurt before you serve it. Good cream is about 50% fat where whole milk is <4% fat. Biiiiiig difference there.

Most of the IUGR prems I know have weight gain issues. It's a mix of an underdeveloped gut, oral aversions from being intubated and long term NGT's. Sometimes they have slight abrasion in their throat from intubation which makes swallowing painful.

The hc growth isn't so much about the actual size of their head, but how much it grows over time.

I wrote up a list of the various advice I've accumulated in the feeding issues forum/thread/section and hopefully it'll be a sticky for others with weight gain concerns.

I was also determined to have a child who ate healthy. Seems she had her own ideas though. I figure we'll phase out the butter and cream gradually once she's comfortably in the charts again, so it could be years yet :lol:

by **fuel1316** » Sat Apr 04, 2009 8:35 pm

my dd is FTT. she has cf (cystic fibrosis) and it causes your body to not be able to absorbe fats. she will always be small and under weight no matter how much she eats. shes on pancreatic enzymes to help fix it but its not your natural enzyme so it will never be perfect. adults with cf have to eat around 4,000 calories a day and will still be 10lbs under weight...

by **BabyToBeNumber2** » Sun Apr 05, 2009 4:44 pm

Lots of great tips here! Duocal http://www.myduocal.com/info/index.asp is great and can be added to any moist food for extra calories- (works really well in ABC's 123's)....it is expensive, but look on Ebay! That's where I buy mine! Also Scandishake is a 600 calorie/8oz powder that you add to whole milk...DD drinks this for breakfast, lunch and dinner (after her meal so she's not filling up on it first, but rather rounding out the rest of her meal).

It's sooooo frustrating especially when they eat very little (DD eats like a little bird) so as said before, make every calorie/bite count! Full fat yogurt, peanut butter for dipping, ranch dressing, sour cream....even adding half and half to things you cook.

DD was in the -3% for weight for a long time....normal until about 3 months and then started declining- all with no cause! No developmental delays, but she is just really tiny. We've done tests for cystic fibrosis, celiac disease, allergies, different blood panels...pretty much everything short of scoping her. Oh and for juice we use Breeze 250cal/8oz!! http://www.tchomemedical.com/IBS/Simple ... 51717.html

Just wanted to let you know you're not alone!

by **BabyToBeNumber2** » Sun Apr 05, 2009 5:08 pm

Forgot to add: DD was 18lbs 14oz at 25 1/2 months! She will turn 3 at the end of this month and is now a little over 25 pounds- we're doing much better now that we're in the percentiles!....just to give you some perspective on her weight.

by **Aimee25** » Mon Apr 06, 2009 12:35 pm

Looks like you've had lots of responses already, but wanted to offer you another one! My son is 20 months old and weighs 20 lbs 12 oz. At his 18 month appt he was 29 inches putting him at the 3% range. He was a month early and was IUGR. There are other issues, but his pedi has never given him a dx of FFT. I know how you feel, but I am hopeful that he will catch up. He has grown so well for HIM....he was only 4 1/2 lbs at birth. He's 5 times that size now!! You probably won't find an 8 lb baby that has grown that much in 18 months! Keep your head up!!

by **PixieB** » Tue Apr 07, 2009 6:10 pm

I love being able to boast that my baby is 10 times her birth weight and not even 2 years old yet

It's one of the few things I can boast about with her weight gain. She's coming up to 11 times her birth weight now

The other day some of the other staff at child care saw Talia trotting around with no pants on with her skinny little legs. One of the overweight insensitive male (complete idiot) staff members said "I want what she eats" and I responded with "What? Double thick cream and butter as half your food intake?" Hell it's not like I'm starving my child :roll:

by **LovesMyBoyz** » Sat Apr 11, 2009 8:22 am

Our Pedi DS#1 on Pedisure after meals. I picked some up yesterday, wow, that is expensive! We qualify for WIC so I made an appt with them for my eldest. lol I will just ignore all the stupidity they tell me to do.

Also the Pedi is talking about sending my son to an Endocrinologist. He thinks maybe an Endo can help. *shrugs* IDK but I am glad he is trying.

by **Aimee25** » Sat Apr 11, 2009 8:25 pm

Brayden is seeing an endo too....PM me if you want to talk.

by **mommaskye** » Thu Jun 25, 2009 1:01 pm

my DD was diagnosied FTT at 6 months, she is 5 1/2 now and only weighs 32 lbs. she wasnt early but had multiple health problems when she was younger. she saw a cardiologist, immunologist, infectious disease, endocrinologist, GI, and of course her reg ped and had a 2 month stint at the hospital. But as of this past Feb she has been cleared from all her Drs!!! they never gave definate answer on anything but we are glad she is healthy. just wanted to give you a positive outlook:) you will prolly get lots of comments on his size, i still do to this day, still havent really come up with a good come back yet, I just say shes our tiny pixie princess:)