Failure To Thrive Syndrome
Little Disney turned seven months old last Saturday. He’s still cute and has a great smile, but his life has not exactly been filled with rainbows and unicorns. At night, Little Disney wakes up hungry every two hours like a newborn. He’s been to the doctor’s office many times, had blood work done three times, been to a dermatologist and an allergist, and now has to go see a pediatric gastroenterologist. Our baby hates formula, solid foods, antihistamine medication, and being fed with a bottle. Little Disney also has acid reflux, which makes him spit up puddles of food. And he also hates his infant acid reflux medication, which costs a lot but doesn’t seem to help.
As I mentioned previously, Little Disney has really bad eczema. In July, we found out he was allergic to milk, eggs, and peanuts. Last week, we learned he was also allergic to tomatoes and shrimp. Hopefully there isn’t anything else our baby is allergic to because I don’t think he has any more blood left to give to the lab vampires. Plus the food he’s already allergic to causes his rashes to flare up, which make him very cranky. And when baby is cranky, mommy and daddy are cranky too.
According to our doctor, our baby also has Failure To Thrive (FTT) Syndrome. I thought the doctor was making it up so I googled the term. According to Wikipedia, Failure To Thrive Syndrome is a real medical term that means poor weight gain and physical growth failure over an extended period of time in infancy. That sounds about right. In seven months, Little Disney has dropped from 75-90 percentile to the 17th percentile. At his current rate, Little Disney will be below the 10th percentile by the time he’s nine months old and below the 5th percentile by the time he’s one.
The doctor is very concerned about his FFT. That’s why he referred Little Disney to a pediatric gastroenterologist outside of the HMO network. If the doctor didn’t tell us he might have to eventually hospitalize our baby and stick a feeding tube in him, I wouldn’t be very concern about his slow weight gain. All of our kids are on the skinny side, but our other three children didn’t struggle as much at six months (Little Monkey and Spiderboy were around the 50th percentile and the Little Princess was at the 25th percentile).
Our doctor seems competent and he calls us weekly to check up on Little Disney. None of our other doctors have ever called us at home. We usually have to make an appointment to talk to the doctor. It’s nice to have a doctor like that, but he’s also freaking us out with his concerns. It’s probably nothing, but it sucks being a dad when your kid has health problems and you can’t do anything to help him.
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Our wee girl Brylee was a FTT baby/toddler/kid too.
She was WAY UNDER the 3% percentile from about 3 months until she was about 4 years old!!!
Even now she only has a BMI of 14… I’m not sure where she is on the percentile graph now! But maybe I don’t want to know!
Her paediatrician wanted to put a gastrostomy in her…. that’s a tube directly into the stomach … through her tummy (not down her nose).. but I said NO WAY! It was major surgery and just awful.
I did everything I could to make sure she got enough food into her to survive!
And she did.
I am sure Little Disney will be just fine, he looks well enough.. and as you said, all your children have been slight. Hopefully he will outgrow the skin issues and allergies… lots of babies do.
The big thing is not to worry too much… cos it won’t help. Just go with the flow mate.
.-= Chris H´s last blog ..DAY SIX…AND MORE VISITORS =-.
I wasn’t worry until the doctor mentioned hospitalization. Now I wonder if there’s something wrong with his insides.
oh, bless your little disney. he’ll be OK! I’m sure it will all get worked out. prayers for rest for you and mom, though. it can be so exhausting. seriously – manna from heaven, each new day, in the form of ample rest. thanks for sharing!
.-= jenx67´s last blog ..gen X halloween [1974] =-.
I thought his rashes would be gone once my wife eliminated all the food he’s allergic to, but he still has those rashes that makes him scratch like crazy.
Poor Little D! I hope he improves and Mum & Dad can breathe easier.
Keep smilin!
That would be nice. At the very least, we should get a frequent patient discount at the doctor’s office.
It’s so scary for a parent when their child has health issues. As you said, you wouldn’t have been overly concerned until the doc mentioned hospitalization, a word that every parent fears. I’ll send positive vibes your way and hope that Little Disney makes a strong comeback. He’s eyes show he’s a fighter; don’t give up hope!
.-= Desert Songbird´s last blog ..Happy One Month Anniversary… =-.
He’s alert and smiles when you hold him. That’s something to be happy about.
Bless the little guy!! I hope they can find out how to help him soon!! :[
.-= Mrs. C´s last blog ..Pay Cash = Pay Less? =-.
I’m hoping the GA gives him a clean bill of health. At least then, we don’t have to worry about that part of his health.
Ug, so much to find answers to. Hope you’re all holding up. Sleep deprivation is it’s own private hell. Praying you find the answers that help you all sleep and him thrive very soon!
Hugs,
Holly
.-= Holly Schwendiman´s last blog ..It Sneaks Up on You =-.
I hope so too because I keep nodding off at night when I’m sitting on the sofa.
I really pray that he grows out of it soon.
I’ll be praying for him and your family.
.-= Eric´s last blog ..Short and Sweet =-.
I think he’ll be able to gain more weight when he’s one. Then he has more food options.
Such a sweet face. I hate it that you and Mommy Forever are struggling with this. Don’t you wish he could tell you what he was feeling? I’ll pray for him.
.-= peepnroosmom´s last blog ..Water, water everywhere and not a drop to drink. =-.
That’s one of the worst part of the situation. He can’t tell us how he feels or if he’s in pain. And of course, we can’t him tell to stop scratching.
He’s so precious, I hope his situation get resolved. Hopefully it’s something he’ll out grow as he develops. Have you tried switching laundry detergent etc just in case the rash is related to something other than food like what his clothes are being washed in> Best wishes Happy WW
We’ve switched to the generic version of Dreft detergent, which is suppose to be better for kids with sensitive skin. Doesn’t help.
Just sending prayers from halfway across the world to you and your family. I can understand and empathize with the sleepless nights. When my youngest was a baby, he kept us up for six straight months because nothing we fed him was right for him and he cried constantly. Hang in there, things will get better. Bless you!
.-= Kittymama´s last blog ..Help Wanted =-.
I hope he grows out of this soon. It’s hard for us, but much worst for him.
Here we feed our babies till they are 4 or 5 even at night. My B gets a bottle even when he sleeps. Maybe thats what your son needs?
I hope whatever it is gets fixed soon. Prayers will be sent for him and for you guys.
He gets both breast milk and the bottle through out the day and night. He just has trouble gaining weight.
I can understand your worries. Hope your Little Disney will grow healthier and stronger soon.
.-= yuinting´s last blog ..Mooncake Festival ??? =-.
He was very cranky yesterday. We think he also has a cold. His voice sounds a little funny.
I truly believe that in time, as he gets older, many of these problems and allergies will go away. Hang in there. I’m sure right now you are scared, worried, etc. (((hugs))) By the way, the Arbonne baby products are wonderful for sensitive skin such as his. They are sold through individual Arbonne reps. Maybe for his digestive system, probiotics would help?
Thanks for the info. We’ll look into it.
I’m sorry to hear you guys are going through this. I hope and pray everything will get better soon. He sure is a cutie – all of your kiddos are!
.-= Kari´s last blog ..Here’s what’s going on with me these days…. =-.
Yeah, he is cute and he’s happy when you hold him. We have a GA appointment next month. Hopefully the specialist will say everything is fine with the baby internally.
Little Disney is adorable! He sure looks happy. I hope his health issues clear up soon.
.-= Leslie´s last blog ..3:02 p.m. =-.
I hope this is what you referred to in your other post that mentioned bad advice from your doctor. Was he wrong?
.-= Mrs4444´s last blog ..Tuesday Treasure =-.
Nah, we still have to go to the pediatric gastroenterologist later this month to find out if there’s something internally causing his lack of weight gain.
my 7th month old also has FTT only 11 lb and we are going back on 12-21-2009 to see if a differnt diet will help(Adding butter to the food and using more formal the normal) , I Hoping it will but if not what are some of the thing we should ask the doctors? What test do you think we need done? will we have to go to an hospital then a normal city one?
also my other child over two year ago had bad acid reflux that made his o2 stats drop when feeding, and it took two time in the er and in being put in peds twice, then transferd to another hospital before find out what was wrong
The doctor had us switch from breast milk to a super-calorie prescription formula. That didn’t work so now we pump the formula via a tube in his nose. He gained 5 oz the first week, but only 1 oz the second week. The butter wasn’t an option for us because of baby’s food allergies.
The doctor also ordered a couple tests. One involved drinking a dye solution to see where it comes via a scan. The other test involved sticking a camera inside him to see if there’s any problems internally. Both tests didn’t find anything wrong.
Next up will be a speech therapist, who will watch baby chew to see if there’s a problem. I think that’s schedule for next month.
I hope they find out what is wrong soon for you.
Now my baby is at 12lb and it look like all is ok, going back in 4wks to be check
Thank you
have they seen if it Gluten Allergy, Gluten is in a lot of food
Glad you baby is OK. Hopefully he will continue to gain weight.
Our baby is around 17 pounds, but the doctor said he should be around 19 pounds.
Wow! I feel your pain, We’re in the same boat. My lil one is 13.5 months and weighs just over 14lbs. . Won’t take bottles/pacifiers – is allergic to milk, eggs, dairy – had crazy bad eczema (got significantly better right when she turned 1). Has no interest in food and it is a challenge to get her to eat just a few bites of baby foood. She like cheerios though. I know how worried you must be … I am there too.
My son (now just turned 2.5 yrs) was very similar. He is still tiny too (21lbs) and eats some foods, but is very picky and seems not to be interested in eating as well. He has a feeding therapist that is also a bit mind-boggled by his case. When he was about 9 months we visited every specialist possible with the result of (he seems normal….just small). In a way that’s very frustrating to hear. I’d rather they actually find something wrong with his body/system/digestive ability or soemthing so that we could work up from somewhere. But here we are…still dealing with same issues and are now debating on re-visiting some of the medical tests with both the kids. We have another older child who never had any of these issues.
Sometimes it helps to just know you are not alone. I hope things look up for lil Disney and you’re able to rest at night. Our lil one just started sleeping better at a year also (around the same time the excema got better. Good luck to you
Thank you for your encouraging words. After a billion tests, the doctors couldn’t find anything wrong with our baby. They even stuck a tiny camera inside him. Everything is ok internally. He either doesn’t know how to eat or just hates eating. For the last three months, we’ve had to feed him through an IV tube stuck up his nose. He’s gaining weight now, but still not eating. Hopefully he’ll start eating like a normal kid soon.
I am in a similar boat and very frustrated! My daughter is 15 months old and weighs only 16lbs 2oz. She is on the .01% for weight and now is losing height. She is a very happy, active, developmentally on track toddler, but has NO appetite. I have started tests: blood came back normal, abdominal ultrasound came back normal…now I’m trying to figure out what to do. I wish you the best. This is such a difficult issue! Maybe a feeding tube is the answer for us too.
I’m sorry your daughter is going through the same thing our son is. Except for acid reflux and food allergies, all of our son’s tests came back normal too. He just doesn’t like to eat. The feeding tube is a pain in the butt, but it’s helping. He’s in the 25-30 percentile now. We just need to figure out how to get him to sustain himself without the tube. You should look into the feeding tube too. I wish your daughter the best.
I’m going through the same with my 5month old son. He is weighs only 10 1/2 pounds, he is slowly gaining weight weigh 7 pounds at birth, but went down to 6 pounds in NICU, he had underdeveloped lungs. It’s just so frustrating. My little guys eats well, is on high calorie formula, eats baby food, and cereal with formula but doesn’t gain weight. I feel like I’m doing something wrong because people always comment on how tiny he is but his blood work and abdominal test have found no problem either. He also has the skin issue as well, I just keep feeding him and praying that he is going to be ok. I hope the same for you.
We had to pump a super fattening formula with a feeding tube stuck up his nose. After about 5 months, he was around the 35th percentile. But we had to take him off the nasal tube because the doctor said that was too long to be on a nasal tube. The next step was to insert a tube directly into his tummy. We asked the doctor if we could skip the tube and try to feed him the normal way. He said yes and our toddler did start eating. Unfortunately, he’s now in the 5th percentile. Best of luck to you and your son. I hope he starts gaining weight soon.
I hope you find the origin of your baby’s FTT soon! I have many articles you may want to read on my website, maybe it will give you some new ideas on how or what to feed Diisney. Good luck!